SOCIAL MEDICINEFOR DEMENTIA
Promoting early detection and diagnosis
through a dementia-friendly community approach

PUBLISHED BY
Eli Lilly Japan

ALD-P007（R0）2017.12AUTHORS
Health and Global Policy Institute
McCann Global Health
SOCIAL MEDICINE FOR DEMENTIA |1

SUPERVISED BY

TABLE OF CONTENTSI

INTRODUCTION P.04

II

INTERVIEW: DR. KIYOSHI KUROKAWA P.06

III

REVIEW OF EVIDENCE P.14

Ichiro Kawachi, MD, PhD
Professor at Harvard
T.H. Chan School of Public Health

1. Barriers and Facilitators for Detection
and Diagnosis of Dementia
Executive Summary– P.15

2. Examples of Dementia Detection andDiagnosis Programs Published in
Peer-reviewed Journals
Executive Summary – P.50

IV

INTERVIEW: DR. KATSUNORI KONDO P.76

V

CASE STUDIES P.86

K. Viswanath, PhD
Professor at Harvard
T.H. Chan School of Public HealthNaoki Kondo, MD, PhD
Associate Professor at University of Tokyo

1. Building Wellness ThroughSocial Connections – P.87
Taketoyo Town: Improving Community Healthand Preventing Dementia Through Local“Salons” That Put Community Members First

4. The Mimamo Ota-ku Elderly
Care Network – P.95
Creating a New Urban
Network to Encourage Independence
Among Community Residents

2. Japan’s Dementia Cafés – P.91
Community Centers for People
Living With Dementia

5. Kizunaya: Resolving Regional Problems –P.98
The Support Center for Early-Onset Dementia

3. A Dementia-Friendly Library – P.93
Toward a Society That Understands
and Accepts Dementia

6. Run Tomorrow: Keywords That Bring
People Together – P.101
Creating New Venues for Communication That
Go Beyond Communities and Organizations
7. DAYS BLG!: Working While Living
With Dementia – P.104
Finding a Clear Purpose in Life

VI

INTERVIEW: DR. KIYOSHI MAEDA P.108

VII

RECOMMENDATION AND CONCLUSION P.118

VIII

APPENDIX P.121• Acknowledgements• Supervisors, Authors, Contributors• Published by Eli Lilly Japan• Written by Health and Global Policy Institute and McCann Global Health2| SOCIAL MEDICINE FOR DEMENTIA

SOCIAL MEDICINE FOR DEMENTIA |3

I

INTRODUCTION

I

Globally, people are living longer than ever before.
The increasing global life expectancy is a concrete
illustration of the progress of society, and should becelebrated as such. However, as the global population ages, there is a concurrent rise in the prevalenceof age-associated morbidities, such as dementia.
The World Health Organization (WHO) predicts
that the number of individuals living with dementia will increase from 47 million to 75 million by
2030, and almost triple by 2050. In Japan, theproportion of individuals aged 65 and older withdementia increased from one in seven in 2012
to one in five in 2015. Dementia is challenging
because it affects the lives of people who have it,
as well as the lives of their families and caregivers– physically, psychologically, and financially.1
Key stakeholders, including the World HealthOrganization (WHO), the Alzheimer’s Society,
the World Dementia Council, and the Japanese
Ministry of Health, Labour, and Welfare, agree
that early detection and diagnosis of dementia are
two of the most import actions that can be taken
to manage the forthcoming increase in dementia
prevalance.2,3,4,5 However, research indicates that,worldwide, a concerning proportion of individuals
who exhibit dementia symptoms have not been
screened.6,7 For instance, in the United Kingdom,
researchers estimate that 45% of the individuals
who meet dementia diagnostic criteria remain
undiagnosed.9
National and local governments, municipalities,
non-governmental organizations (NGOs), andprivate sector organizations, have tried to increase
screening rates through a variety of interventions
and programs, but a majority of these initiatives
were not grounded in evidence and often failed toproperly evaluate their effects.
It’s possible that the lack of true evidence-based
interventions is, in part, influenced by the uncertainty of key dementia care-seeking behavioral
determinants. In fact, the key determinants ofdementia care-seeking have yet to be systematically reviewed.
We seek to remedy this knowledge gap by comprehensively documenting the key determinants ofearly detection and diagnosis of dementia. First,
we conducted an exploratory review of current
dementia-related literature. Through this review
we sought to identify the drivers and obstacles
to early detection and diagnosis among (potential) patients and the general public, caregivers,
and healthcare professionals. Subsequently, we
focused our review on global early detection anddiagnosis programs, and the key determinantsof their performance. Together, these reviews
will give us a more consistent and complete
understanding of the determinants of dementia
care-seeking behaviors.

INTRODUCTION

Additionally, to further explore the importanceof early detection and diagnosis, we interviewed
Japanese thought leaders. We explored how
practitioners should approach dementia and theelements of dementia-friendly societies. Finally,
we identified and included seven case studies
of social- and community-based approaches inJapan.

October, 2017

SOCIAL MEDICINEFOR DEMENTIAAUTHORSREFERENCES
1. World Health Organization, 10 facts on dementia,
http://www.who.int/features/factfiles/dementia/en/
2. http://www8.cao.go.jp/kourei/
whitepaper/w-2016/html/gaiyou/s1_2_3.html
3. http://www.who.int/mediacentre/factsheets/fs362/en/
5. http://www.mhlw.go.jp/topics/kaigo/dementia/a03.html
6. https://www.alz.org/advocacy/statement-purpose.pdf| SOCIAL MEDICINE FOR DEMENTIA

Only through implementation of consistent,
sustained, and evidence-based efforts acrossdifferent stakeholders can we achieve a dementiafriendly society.

The contents of this report are best reflected in
its title, “Social Medicine for Dementia,” and webelieve that the conclusions presented will beapplicable to policymakers, practitioners, andhealthcare professionals alike. For those who are

4. http://www.alz.org/publichealth/early-detection.asp

4involved in dementia activities, the report is not
only educational, but also motivational.

7. Martin S, Kelly S, Khan A, et al. Attitudes andpreferences toward screening for dementia: a systematic
review of the literature. BMC Geriatrics. 2015;15:66.
8. Bunn F, Goodman C, Sworn K, et al. Psychosocial
factors that shape patient and carer experiences ofdementia diagnosis and treatment: a systematic reviewof qualitative studies. PLoS Medicine. 2012;9(10).
9. Martin S, Kelly S, Khan A, et al. Attitudes andpreferences toward screening for dementia: a systematic
review of the literature. BMC Geriatrics. 2015;15:66.

SOCIAL MEDICINE FOR DEMENTIA |

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II
INTERVIEW
DR. KIYOSHIKUROKAWACHAIRMAN, HEALTH AND GLOBAL POLICY INSTITUTE;MEMBER, THE WORLD DEMENTIA COUNCIL

INTERVIEW

JAPAN’S ROLE
AS A LEADINGSUPER-AGED COUNTRY
What do you think Japan’s roleshould be in tackling the challengesof dementia, particularly considering
its high rates of population aging?
In 2016, the proportion of people aged 65 years
and older in Japan reached 27.3% of the total
population.10 While the youth population continues to decline, the number of people over the ageof 100 has been increasing rapidly.
Additionally, the proportion of older people inJapan is projected to reach 33.4% of the total
population by 2035.11 This will mean that one inthree people in Japan will be older than 65. To
be exact, the proportion of older people among
Japan’s adult population (age 20 or over) is
expected to reach close to 40%.12

As a leading super-aged country,
Japan is expected to share experiencesin collaboration with other countries.

6| SOCIAL MEDICINE FOR DEMENTIA

Although Japan has attained the highest healthy
life expectancy among the Organization for
Economic Cooperation and Development (OECD)
countries, GDP growth has been stagnant over the
past two decades.13 Given these circumstances,many around the world are looking to see how
Japan will respond to the challenges presented bya super-aged society.
Nursing care benefit expenditures in Japanare estimated to cost approximately 8.9 trillion yen (as of 2014).14 The cost of informal care
(care that families and others have to cover) is
estimated to cost an additional 6 trillion yen.13
For these reasons, it is crucial that we implement
evidence-based interventions and create support
systems to help those with dementia.

For example, data from a Ministry of Health,Labour, and Welfare (MHLW) survey has shownthat the proportion of primary caregivers livingwith people with dementia is 31.3% for men
and 68.7% for women.16 This implies that the
majority of informal care in Japan is provided by
women. If we consider that females within thesame age group are more likely to be diagnosed
with Alzheimer’s disease, the most common formof dementia, and that women tend to live longer
than men, it becomes apparent that it is equallyimportant to focus dementia prevention measures
on women.17,18 This will have significant social
impact. Of course, even in this case, it is important to develop a system to support people withdementia as a community, without solely relying
on the care provided by women.
How do you think other countries see
the aging issue in Japan; for example,
at an international conference like theWorld Dementia Council (WDC)?
To answer that question, I will first explain how
the WDC started. In June 2013, the leaders of theworld’s eight largest industrialized nations held aG8 summit in the United Kingdom.
In December of that same year, the United
Kingdom government hosted a G8 dementia
summit with the G8 Health Ministers, under theshared recognition that a global commitment isnecessary for the fight against dementia. Duringthat summit, ideas and opinions were exchanged
and goals were set on how to tackle the challenge of dementia. After the summit, the United

SOCIAL MEDICINE FOR DEMENTIA |7

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INTERVIEW

Kingdom government launched the WDC, and its
first meeting took place in London in April 2014.
The WDC consists of 14 members, including theUnited Kingdom government, the World Bank, theOECD, the Wellcome Trust, the Bill and Melinda
Gates Foundation, pharmaceutical companies,
economists, and medical experts (such as myself),among others.
When I attend international conferences like the
WDC meetings, I often get the impression thatJapan is perceived as a country with low healthcare expenditures. In fact, according to the OECD
(2016) data, per capita health spending in Japanis not as high as other countries, despite its fast
progress as an aged society.19 For this reason,
Japan has attracted global attention on how weare going to respond to the global challenge of
population aging. Various efforts and interventions are under way to counteract issues causedby the declining birth rate and aging population.
However, we have yet to see sufficient results fromthese measures, and so responding to these issues
remains an urgent task.
The World Health Organization (WHO) and theUnited Nations (UN) have defined “aging societies” to be societies with an aging rate exceeding
7%. If the aging rate is over 14%, it is deemed to be
an “aged society,” and if the rate is over 21%, it iscalled a “super-aged society.” Think about the time
it takes for the proportion of the older population
to grow from 7% to 14%; in other words, consider
the shift from an aging to an aged society. It took
France 126 years to see this shift happen. It took
Japan only 24 years.20 In some parts of Asia, suchas South Korea, where economic growth is still
fairly good, it is predicted that the declining birthrate and aging of the population will progress at
an even faster rate than that of Japan.21
When it comes to dementia control measures, it
is important that Japan share its expertise andknowledge worldwide. As a leading super-aged
country, Japan is expected to lead and take action
in collaboration with other countries.
Generally speaking, the world is under the
impression that Japan is a country that is particularly advanced in healthcare. Because information
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about different policies and interventions inJapan are not accurately translated and shared in
English, there is the chance that there are slightdifferences in the interpretation of data whenanalyzing details. In order for Japan to lead theworld in the field of aging, the Japanese government should further strengthen efforts to sharethe country’s experiences, so that the world canreceive accurate information about Japanesepolicy and interventions.

In dealing withdementia, it is importantto create a community
with shared values
centered on families,
friends, and local
people. The key is toestablish a culture ofmutual support within
local communities.

INTERVIEW

One idea related to this is evident in a research
project being proposed by Dr. Yoshinori Hiroi, aprofessor at the Kokoro Research Center of Kyoto
University. Dr. Hiroi’s research focuses on themindsets of Japanese people.22 His project aims
to reestablish local communities with a focus on
shrines and temples. I think this is an innovative
idea that takes advantage of existing Japanesecultural practices. The traditional way thatJapanese people establish relationships is often
hierarchical.

Building such communities would be beneficial
for people with dementia and their families, andwould start us on a path toward the creation ofa society in which people with dementia can live
comfortably without worrying about their future.
I believe that steady efforts at the community
level will eventually reduce the stigma that people
feel about dementia, and increase the number ofpeople with positive attitudes about seeking early
detection and diagnosis.

Especially in urban areas, people tend to have
weaker ties with each other. Also in the countryside, with declining populations, there are places
where it has become particularly difficult to build
such communities. That said, I also think that itis probably easier to build a community in rural
areas where a common foundation to support
each other can easily be defined. In these places it
is easier to deepen people’s ties through neighborhood associations, local events, and festivals.

What do you think is importantwhen trying to build strong
connections within a community?

On the other hand, in urban cities full of large
apartment buildings, and with few people living
in houses, neighbors often have only limited
communication with each other, so it is difficult
to establish communities. One of the main challenges in the near future is to determine the typesof common foundations for community building
best suited to urban areas.

I believe that it is very important that people makeconnections with others outside of their workplaces from a young age. In general, women aresociable and good at making friends beyond theirtitles or affiliated posts.
But this may be a challenging task for Japanesemen, who have less opportunity to create connections outside of work until their retirement.
For example, if a Japanese man goes to the hotsprings and meets a stranger, they might have afriendly conversation at first, but once they get
to know about each other’s companies, jobs, andthe relationship between their companies, more
often than not, they won’t be able to talk casually
anymore.

What do you think is necessary tofacilitate the early detection anddiagnosis of dementia in Japan?
In dealing with dementia, it is important to create
a community with shared values, centered onfamilies, friends, and local people. I think that
establishing a culture of mutual support within
local communities is key. Once that is done, it
is important to define a common foundation forthe support of those with dementia within thecommunity. This may require Japanese people
to redefine their own mindset about cultural andsocial issues.

SOCIAL MEDICINE FOR DEMENTIA |9II

INTERVIEW

Men tend to attach their job positions to their identities, and so they are more likely to become isolated from their community after their retirement.
For that reason, I think that making connections
with people with common interests and hobbies
is especially important for men. At the same time,communities need to find a way to engage people
with different backgrounds and become more
inclusive.
In addition to all of that, shrines, temples, andschools can be places where local people gettogether to communicate in Japan. Private enterprises, such as convenience stores, banks, andpost offices can also have an important role toplay in the creation of a strong community. Thesefacilities function as community bases, as they
are located everywhere, and are used by different
generations.
Throughout history, Japanese society has always
been structured vertically. This is the base of ourculture, and our strength. Once a certain task is
assigned by a boss, workers will be able to complete
it and do a good job, but they will most likely lackhorizontal connections with their coworkers.
With Japan aging rapidly, it is crucial that people
cooperate to create new values and strong connections within their communities. Although thismay seem challenging, I strongly believe that it ispossible by utilizing connections with the private
sector to create a foundation for action toward thebuilding of communities where people can rely oneach other.
In doing this, citizen participation and autonomy is crucial. The word public is often used in
English to describe something that is shared witheveryone, or to refer to citizens. However, I havenoticed that in Japan, this word is often affiliatedwith the government, and usually means something official.
In building a strong community, it is importantthat people take action to make their own society
a better place. Taking a long-term perspective on
this, I think that educating future generations
to be open-minded, and providing them with

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opportunities to create horizontal connections, isessential in achieving this goal.
Some argue that since there is nodisease-modifying agent for dementia,
there is little point in seeking an early
diagnosis. What is your opinion?
I admit that there is ongoing discussion in thisarea. It is extremely difficult to make an early
diagnosis of dementia. Thus, it is importantthat we develop ways to analyze and evaluate
this issue quantitatively, both for screening andtreatment. Currently, a screening examination

I think there is agreat need in establishinga platform to establish
public-private partnershipin Japan that can collaborate internationally. Japan
should therefore takethe lead as a model for
aging societies, andshare the various
initiatives taken by the
public sector, as wellas domestic privatecompanies, with other
Asian countries.

INTERVIEW

for Mild Cognitive Impairment (MCI) is used todetermine dementia, but it can only show thepatient’s “risk” for developing dementia, basedon a statistical analysis. However, it is not ideal todetect dementia itself. Therefore, more researchand evidence-building with high repeatability areneeded to develop a screening system and/or tools
by using advanced technology such as behavioral
sensing, or to discover an accurate biomarker todetect dementia at an early stage.
In addition, research is ongoing for the development of a disease-modifying agent for dementia. Clinical sites are working hard to overcome
numerous obstacles. In my opinion, people who
claim that there is little point in making an early
diagnosis of dementia are making an excuse for
not taking action. Great discoveries in any field
are often the result of efforts by people who challenged the norm and tried to do something that
seemed impossible. Aside from research, there aremany things we can do, including creating safe
communities to support dementia patients andtheir family members. Regardless of the progressof drug development, it is important that peoplechoose a healthy lifestyle in today’s aging society.
If they are unable to do so, then we must have asolid social support system for them.
From a medical perspective, what
do you think is most important for
the early diagnosis of dementia?
Many around the world are working to educate
the public about dementia.23 Programs are alreadyunder way in some countries, including Japan andthe United Kingdom. For example, in Japan, there
are 8.8 million “dementia supporters”; people
with a basic knowledge about the disease who can
support patients and their family members within
their local communities.24
In terms of early diagnosis of dementia, I believethat family doctors, and the clear division ofroles among healthcare institutions, are important. Although there are an increasing number of
medical specialists in Japan today, patients do notnecessarily need to see them. For early detection,

it is more important that patients or their families
notice that something is wrong. It would be good ifthey could then speak with a general practitioner,
who could function as a bridge between patientsand specialists.
With national healthcare expenditures exceeding
40 trillion yen, the need for general practitioners
is growing.25 It is crucial that they function as apipeline between medical specialists and patientsin each community. This highly efficient system
could reduce wasteful healthcare spending, as
patients would no longer need to go to multiple
doctors for a single disease or symptom. The
general practitioner system would also bring benefits to patients. In our current Japanese healthcare system, where patients have the freedom tochoose a healthcare institution, people tend to go
to large hospitals for minor illnesses. As a result,these hospitals become occupied with outpatients,
which puts pressure on doctors who need to carefor emergency patients and inpatients. Family
doctors can therefore help to alleviate overcrowding in large hospitals, while still providing patientswith sufficient health care.
Similarly, with early diagnosis and care fordementia, a clear division of roles between generalpractitioners and medical specialists is importantin creating an environment where each type of
doctor can carry out their work smoothly.
WDC has listed “Research” and“Open Science and Big Data” as main
focuses. What is your opinion on theimportance of scientific evidence inthe field of dementia research?
Whether it is in the field of healthcare or global
health, it is important that there be a platform toshare scientific evidence. As soon as new evidence
is proposed, it must be examined and sharedwith researchers and institutions. Especially withdementia, there is not much of a system in place
for sharing evidence. It is crucial that researchersconnect with each other across borders.
For example, in Europe, pharmaceutical companies, the government, and various research

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institutions have cooperated to create a platform
for conducting clinical trials on Alzheimer’s
disease and dementia through a project called theEuropean Prevention of Alzheimer’s Dementia
Consortium (EPAD). In addition, a mechanism
called the Innovative Medicines Initiative (IMI)
has been established to link governments and theprivate sector on funding for drug development
research. These systems construct a concrete
database for efficient research, and allow funders

to prioritize research projects. In my opinion,
the establishment of this kind of system via aninternationally connected platform, in which thegovernment, academia, and the private sector allparticipate, is necessary in Japan. Furthermore,
Japan should take the lead as a model for aging
societies, share the various initiatives taken by
domestic private companies with other Asian
countries, and collaborate with them.

INTERVIEW

REFERENCES
10.Ministry of Internal Affairs and Communications
Statistics Bureau (Population data, 2016):
http://www.stat.go.jp/data/
jinsui/2016np/index.htm.
11. Cabinet Office (2016 Aging society white paper):http://www8.cao.go.jp/kourei/
whitepaper/w-2016/html/zenbun/s1_1_1.html.
12. National Institute of Population and Social
Security Research (Estimation of the future
population of Japan, 2012):
http://www.ipss.go.jp/syoushika/tohkei/
newest04/sh2401smm.html.
13. Cabinet Office (Estimation of GDP):
http://www.esri.cao.go.jp/jp/sna/menu.html.
14. MHLW (2014 Long-term care insurance
status report): http://www.mhlw.go.jp/
topics/kaigo/osirase/jigyo/14/index.html.
15. Keio University (Estimation ofsocial cost of dementia): https://www.keio.ac.jp/ja/press_release/2015/
osa3qr000000wfwb-att/20150529_02.pdf.
16. MHLW (2013 Summary of comprehensive surveyof living conditions): http://www.mhlw.go.jp/
toukei/saikin/hw/k-tyosa/k-tyosa13/dl/16.pdf.
17. MHLW (The 19th meeting on study forestablishing a new regional mental health caresystem, Team Asada’s presentation):
http://www.mhlw.go.jp/stf/
shingi/2r9852000001kmqoatt/2r9852000001kxx1.pdf.

18. MHLW (2015 Abridged life table):
http://www.mhlw.go.jp/toukei/saikin/hw/life/life15/dl/life15-02.pdf.
19. OECD (OECD Health Statistics 2016, Healthexpenditure and financing, per capita,
current prices): http://stats.oecd.org/index.aspx?DataSetCode=SHA
20. Cabinet Office (2016 Aging society white paper):http://www8.cao.go.jp/kourei/
whitepaper/w-2016/zenbun/28pdf_index.html;
http://www8.cao.go.jp/kourei/
whitepaper/w-2016/html/zenbun/s1_1_5.html.
21. Cabinet Office (2016 Aging society white paper):http://www8.cao.go.jp/kourei/
whitepaper/w-2016/zenbun/28pdf_index.html;
http://www8.cao.go.jp/kourei/
whitepaper/w-2016/html/zenbun/s1_1_5.html.
22. The head of the Chinju-no-Mori (Grove of theVillage Shrine) Community:
http://kokoro.kyoto-u.ac.jp/jp/
staff/2016/04/post_80.html.
23. MHLW (Dementia supporters):
http://www.mhlw.go.jp/stf/seisakunitsuite/bunya/0000089508.html.
24. Dementia supporters caravan:
http://www.caravanmate.com/.
25. MHLW (Healthcare expenditure in2014): http://www.mhlw.go.jp/toukei/
saikin/hw/k-iryohi/14/index.html.

PROFILE: KIYOSHI KUROKAWA, MD, PhD
A graduate of University of Tokyo Faculty of Medicine; in the UnitedStates 1969-85, was a professor of medicine, School of Medicine of UCLA
(1979-84), University of Tokyo (1989-96), Dean of Tokai University
School of Medicine (1996-2002), President of Science Council of Japan(2003-06), Science Advisor to the Prime Minister (2006-08), executive
member of many national and international professional societies, WHO
Commissioner (2005-09), Institute of Medicine of National Academies of
Sciences of USA. Chairman of Fukushima Nuclear Accident Independent Investigation Commission
by the National Diet of Japan (2011/12-2012/7). For this work, he received the American Association
for the Advancement of Science (AAAS) Award for Scientific Freedom and Responsibility (2013) andwas chosen as one of “100 Top Global Thinkers” of Foreign Policy (2012). Visiting Professor, MIT and
Columbia University. Chair and Representative Director, GHIT Fund. Member of the World Dementia
Council.

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III

REVIEW OF EVIDENCE
1. Barriers and Facilitators for
Detection and Diagnosis of Dementia
Executive Summary — P.15
2. Example of Dementia Detection andDiagnosis Programs Published in
Peer-reviewed Journals
Executive Summary — P.50

REVIEW OF EVIDENCE 1

1. BARRIERS AND FACILITATORSFOR DETECTION AND
DIAGNOSIS OF DEMENTIAEXECUTIVE SUMMARY

Over the past half century, the global health landscape has shifted from combating infectious diseases to preventing, detecting, and managing chronic
illnesses, such as dementia. According to the World
Alzheimer’s Report, the number of individuals suffering from dementia is expected to rapidly increase to
66 million by 2030 and 115 million by 2050.1 If left
untreated, individuals who suffer from dementia
experience significant decreases in cognitive ability
that subsequently affect their overall health and quality of life. Moreover, due to the nature of dementia’s
debilitating symptoms, it also significantly burdens
both caregivers and family members.1

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REVIEW OF EVIDENCE 1

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EXECUTIVE SUMMARY

An increasing body ofscientific work suggests
dementia screening
and early detection
can improve patient
outcomes and lessen
the burden experienced
by caregivers.
With a timely diagnosis, affected individuals andtheir caregivers are able to seek out and utilizedementia-related resources, make plans foradvanced care, and assess appropriate healthcare
services.2-5 Unfortunately, a substantial proportionof individuals who meet the criteria for dementia
are never properly diagnosed.6
Therefore, our first research question (RQ1) was:What are the facilitators, barriers, and determinants of the early detection and diagnosis ofdementia (including Alzheimer’s disease) among(1) (potential) patients and the general public, (2)caregivers and family members, and (3) healthcare professionals (HCPs)?
To answer this question, researchers at McCann
Health and Harvard University conducted asystematic literature review. The review included peer-reviewed articles published on PubMed,
Embase, and Web of Science prior to October 1,
2016. Articles were found using key search terms
such as “dementia,” “diagnosis,” “screening,”“detection,” “barriers,” “facilitators,” and througha gray literature search.
Using these search terms, researchers identified
a total of 135 articles that met the review criteria (81 focused on (potential) patients and the

16 | SOCIAL MEDICINE FOR DEMENTIAREVIEW OF EVIDENCE 1
EXECUTIVE SUMMARY

general public, 45 focused on caregivers and family
members, and 41 focused on HCPs). Key insights,
trends, and conclusions were then segmented
using Andersen’s healthcare utilization model.
Our review identified that barriers and facilitators of early detection and diagnosis of dementia
among (potential) patients and the general public
included: knowledge and awareness, attitudes,
stigma, autonomy, access to healthcare services
and resources, healthy literacy, social support,
co-morbid conditions, as well as demographic
factors such as age and socioeconomic status.
Among caregivers and family members, key
determinants of dementia care-seeking behaviors
included: knowledge, attitudes, access to healthcare services and resources, stigma, and social
networks.
Notably, among both non-HCP populations,normalization of dementia symptoms emerges as acommon determinant of care-seeking. Individuals
in both populations were less likely to pursue
assistance for dementia-related symptoms if they
perceived said symptoms to be normal side effects
of aging. Additionally, individual perceptions ofdementia-related stigma affected care-seeking
across both populations. Specifically, individuals
who believed dementia to be stigmatized refrained
from obtaining a diagnosis, despite the presenceof symptoms.
Barriers and facilitators of screening and early
diagnosis among HCPs included: knowledge andawareness, attitudes, and healthcare resources
availability. Interestingly, results indicated that
HCPs were often hampered by determinants
related to self-efficacy. In many cases, HCPs felt
while they could diagnosis a patient with dementia,
they were incapable of constructively acting upon
their diagnosis. Reasons for this lack of selfefficacy concerning dementia treatment ranged
from interpersonal factors (such as knowledge oftreatments) to structural issues (such as limited
resources).

Broadly, our review has begun to unravel thecomplex system of determinants that govern
dementia care-seeking. Interventions and policies
that are developed considering this system will
likely be more efficacious, and, if evaluated properly, can continue to build upon and refine dementia determinants in respect to their own findings.

REFERENCES
1. Batsch NL, Mittelman MS. World Alzheimer
Report 2012. Overcoming the Stigma of
Dementia Alzheimer’s Disease International(ADI), London; 2012 Accessed May. 2015;5.
2. Bradford A, Upchurch C, Bass D, et al.
Knowledge of documented dementia diagnosis
and treatment in veterans and their caregivers.
American journal of Alzheimer’s disease
and other dementias. 2011;26(2):127-133.
3. Dubois B, Padovani A, Scheltens P, Rossi
A, Dell’Agnello G. Timely Diagnosis for
Alzheimer’s Disease: A Literature Review on
Benefits and Challenges. Journal of Alzheimer’s
disease. 2015;49(3):617-631.
4. Bunn F, Goodman C, Sworn K, et al.
Psychosocial Factors That Shape Patient andCarer Experiences of Dementia Diagnosis andTreatment: A Systematic Review of Qualitative
Studies. PLoS Medicine. 2012;9(10).
5. Boise L, Camicioli R, Morgan DL, Rose
JH, Congleton L. Diagnosing dementia:
perspectives of primary care physicians.
The Gerontologist. 1999;39(4):457-464.
6. Martin S, Kelly S, Khan A, et al. Attitudes
and preferences toward screening
for dementia: a systematic review of theliterature. BMC Geriatrics. 2015;15:66.

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CONTENTS
A. INTRODUCTION
B. METHODS
C. THEORETICAL FRAMEWORK
D. KEY DETERMINANTS AMONG (POTENTIAL)
PATIENTS AND THE GENERAL PUBLIC
E. KEY DETERMINANTS AMONG CAREGIVERS
F. KEY DETERMINANTS AMONG HEALTHCARE PROFESSIONALS
G. DISCUSSION
H. CONCLUSIONIII

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A. INTRODUCTION

Over the past half century, the global healthlandscape has shifted from exclusively focusing
on combating infectious diseases, to additionally preventing, detecting, and managing chronic
illnesses, such as diabetes, heart disease, obesity,and dementia. According to the World Alzheimer’s
Report, the number of individuals suffering fromdementia is expected to increase to more than 65
million by 2030, and then up to 115 million by
2050.1
Dementia is a group of neurodegenerative disorders characterized by significant impairments invarious elements of cognitive functioning (such as
memory, executive functioning, verbal skills, andmore).2-5 Examples include Alzheimer’s disease,
Lewy bodies dementia, frontotemporal dementia,
and vascular dementia.
If left untreated, individuals who suffer fromdementia will likely experience significant decreases in cognitive ability that subsequently affecttheir overall health and quality of life. Moreover,due to its debilitating symptoms, dementia also
places a significant burden on caregivers andfamily members.1

Moreover, early diagnosis enables caregivers toplan for advanced care, search for support resources within their community, and seek out quality
care services.6,7,9 Leveraging these resources earlyon can improve both the caregiver’s and patient’s
quality of life.
Yet, even with the significant benefits of early
detection and diagnosis, there is a substantial
number of individuals who, despite exhibiting
clinical dementia symptoms, remain undiagnosed.2,6 For instance, it is estimated that 45%
of individuals meeting the criteria for dementia
remain undiagnosed in the United Kingdom.2
Given the startling number of individuals who
remain undiagnosed and the time-sensitive
nature of treatment and care, it is critical that relevant stakeholders begin taking action to increase
dementia care-seeking behaviors.
Regardless of the type of action (program,campaign, policy, etc.), it should be grounded inevidence. Specifically, to maximize efficacy, theseactions will need to strategically address the individual, interpersonal, and structural determinantsof dementia care-seeking behaviors.

Fortunately, an increasing number of studies indicate that these negative effects can be mitigated
if dementia is detected and diagnosed early on.3-7
Early diagnosis of dementia enables patients toseek appropriate care and engage in preventive
strategies that may limit the progression of cognitive impairment.3,8 In fact, earlier initiation oftreatment has been indicated to both delay diseaseprogression and improve recovery rate.4-6

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To explore and comprehensively document these
determinants, we conducted a systematic literature review to identify the factors that play a significant role in facilitating or preventing dementia
care-seeking behaviors. Specifically, we sought toanswer the following research question:

B. METHODS

RQ1: What are the facilitators, barriers, anddeterminants of the early detection and diagnosis of dementia (including Alzheimer’s disease)among:

To address RQ1, a literature review
was conducted using the following
two-step selection process:1.

(potential) patients and the general public

2. Caregivers
3. Healthcare providers (HCPs)

1.

Identification of literature through a broad
search of articles published between January
1981 – October 2016 using predeterminedsearch terms and three relevant, academic
databases (PubMed, Embase, and Web of
Science)

2. Screening and selection of literature by three
independent investigators
PubMed was the first database searched. To search
PubMed, we used Medical Subject Headings(MeSH) terms, a controlled vocabulary thesaurus
developed by the National Library of Medicine,or keywords including at least one term pereach section as follows: Section 1: dementia OR
Alzheimer AND Section 2: diagnosis, mass screening test, detection, OR recognition AND Section
3: communication barriers, patient acceptance of
health care, barrier, facilitator, OR health knowledge, attitudes & practice.
Search 1 Boolean Logic:(“Dementia”[mesh] OR alzheimer*[tiab] OR dementia*[tiab])
AND (“Diagnosis”[Mesh] OR “diagnosis”[Subheading]
OR “Mass Screening”[Mesh] OR diagnos*[tiab] OR
screen*[tiab] OR testing[tiab] OR tested[tiab] OR
test[tiab] OR detection[tiab] OR recognition[tiab])
AND (“Communication Barriers”[mesh] OR “Patient
Acceptance of Health Care”[mesh] OR “Health
Knowledge, Attitudes, Practice”[mesh] OR (barrier*[tiab]
NOT blood brain[tw]) OR facilitator*[tiab])

Subsequently, we searched Embase using Emtreeterms. Emtree is a hierarchically structured
controlled vocabulary thesaurus for Embase.
To conduct the search we used Emtree terms
or keywords, including at least one term pereach section as follows: Section 1: dementia OR
Alzheimer AND Section 2: diagnosis, screening,

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detection, test, OR recognition AND Section 3:
communication barriers, patient attitudes, attitude to illness, patient acceptance of health care,barrier, facilitator, OR health knowledge, attitudes& practice.
Search 2 Boolean Logic:(‘dementia’/exp OR ‘dementia’ OR alzheimer*:ab,ti OR
dementia:ab,ti AND [embase]/lim) AND (‘diagnosis’/exp
OR diagnosis:ab,ti OR ‘mass screening’/exp OR screen*:ab,tiOR test*:ab,ti OR detection*:ab,ti OR recognition*:ab,tiAND [embase]/lim) AND (‘communication barriers’:ab,tiOR ‘patient attitude’/exp OR ‘attitude to illness’/
exp OR ‘attitude to mental illness’/exp OR ‘attitude’/
exp OR ‘patient acceptance of health care’:ab,ti OR‘professional practice’/exp OR ‘health knowledge, attitude,
practice’:ab,ti OR facilitator*:ab,ti OR (barrier*:ab,tiNOT ‘blood brain’:ab,ti,de) AND [embase]/lim)

Finally, for the Web of Science search, we usedkeywords including at least one term per eachsection as follows: Section 1: dementia OR
Alzheimer AND Section 2: diagnosis, screening,detection, test, OR recognition AND Section 3:
barrier, facilitator, challenge, attitude, OR enabler.
Search 3 Boolean Logic:
TS=(“alzheimer*” OR “dementia*”) AND TS=((“diagnosis*”
OR “screen*” OR “test” OR “detection” OR“recognition”) NEAR/4 (“barrier*” OR “facilitator*”
OR “challenge*” OR “attitude*” OR “enabler*”))

The initial searches yielded a total of 1,537 articles
from PubMed, 3,322 articles from Embase, and
279 articles from Web of Science. It should be
noted that the “NEAR” function was utilized for
the Web of Science search to improve the precision. This function is unique to the Web of Science,
and was the cause of a substantially smaller yieldof articles. In light of the smaller yield, additional
articles were added through a lay literature search.
After the search, three independent investigators
screened the results to identify relevant articles
for each population of interest defined in RQ1.

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B. METHODS

Articles were selected based on the following
inclusion criteria: Any type of study (e.g., review,experimental, observational, qualitative) thatinvestigated any determinants (e.g., facilitators
or barriers) that could influence dementia screening or diagnosis among the populations of interest ((potential) patients and the general public,

caregivers and family members, and HCPs).
After screening the results of the initial search, a
total of 135 articles (81 for patients and generalpublic; 45 for caregivers and family members;
and 41 for healthcare providers) were selected andfurther evaluated.

Figure 1. Selection process for RQ1.

RQ1

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C. THEORETICAL FRAMEWORKThe selected articles were assessed using
Andersen’s healthcare utilization model (alsoknown as Andersen’s behavioral model).10,11 The
healthcare utilization model highlights and organizes the intrapersonal, interpersonal, social, andstructural factors that determine an individual’s
use of healthcare services (Figure 2).10,11
Overall, there are three key constructs:
1.

Predisposing characteristics

2. Enabling resources

n=5,138

Predisposing characteristics include demographic characteristics such as age, race/ethnicity,
family structure, education, employment status,
as well as health beliefs.10,11
Enabling resources include family support,
health insurance coverage, and community
resources (specifically concerning the availabilityof quality healthcare services).
Finally, need encompasses an individual’s
perceived and actual healthcare needs.
The model additionally highlights the influence“environment,” which consists of a variety ofstructural level factors.10,11

3. Need10,11

Combined search resultsof PubMed, Embase,and Web of Science

Key results and conclusions from the selected articles were organized by the three key constructs.

Figure 2. Andersen’s healthcare utilization model 10,11

n=428

ENVIRONMENT

Articles selected
after title reading

n=10
Articlesmanually added fromlay literature search

n=135
Articlesselected after content
evaluation

n=81 for patients/public
n=45 for caregivers
n=41 for providers

CONTEXTUALCHARACTERISTICSOUTCOMES

Healthcare
SystemPredisposing
Characteristics

Enabling
Resources

Need

Personal Health
Practices

Perceived
HealthExternal
Environment

Demographics

Financing

Perceived

Process of
Medical Care

Evaluated
HealthGenetics

Organization

Evaluated

SocialSocial Support

Use of Personal
Health Services

Consumer
Satisfaction

Beliefs

22 | SOCIAL MEDICINE FOR DEMENTIAHEALTHBEHAVIORS

Quality of Life

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D. KEY DETERMINANTS AMONG (POTENTIAL)
PATIENTS AND THE GENERAL PUBLIC

1. Lack of Knowledge and AwarenessOverall, among (potential) patients andthe general public, the determinantsfor dementia care-seeking included:1.

Knowledge and awareness about
dementia symptoms, risk of dementia,
and available resources

2. Attitudes: denial and negative emotion
toward dementia and dementia screening
3. Social stigma
4. Autonomy
5.

Access to healthcare services and resources

6. Communication skills and health literacy
7.

Social support

8. Sociodemographic factors
9. Health and disease status

A total of 33 studies reported that, among (potential) patients and members of the general public,
barriers to seeking out detection and diagnosis ofdementia included a lack of knowledge regarding
dementia symptoms, screening, diagnosis, treatment, prognosis, risk of dementia, benefits ofscreening and early diagnosis, available resources and healthcare services, and difficulty distinguishing dementia from normal aging symptoms.
A key theme related to knowledge and awarenesswas “normalization of dementia symptoms.”
Normalization occurs when individuals incorrectly attribute dementia symptoms (such as
memory loss) to the natural process of aging. In
other words, people perceive many of the key
symptoms of dementia to be inevitable and a“normal consequence” of aging. In fact, 11 studies
reported that failure to recognize dementia symptoms is extremely common among the generalpublic, and is one of the most significant barriers
to pursuing screening and early diagnosis.
Notably, normalization of dementia symptoms
has been reported as a barrier around the world,
including the general public in Asian countries(Japan and India),12,13 Asian American immigrants (individuals with Japanese, Chinese, andKorean origins),14,15 older Hispanic Americans,16
the general public in European countries,17-20
and African populations (specifically amongcommunity leaders in Nigeria and older adults in
Tanzania).21,22

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For instance, South Asian adults aged 18-83
living in the United Kingdom wrongly reported that memory problems were attributable tothe aging process. Moreover, normalization ofdementia symptoms as part of the usual aging
process was found to be associated with denial
among Asian Americans as well.14 Consistent withother research, authors reported that this kind of
misconception and behavior hindered help-seeking for memory problems.18
Additionally, studies found that lack of knowledge
and awareness of the risk of dementia (as well as
the benefits of screening and early detection) posed
significant barriers for potential patients.2,3,23-29 A
longitudinal study of community-dwelling seniorcitizens (mean age of 75.8 years) in Japan foundthat intention to pursue screening, the strongest
predictor of getting screened for cognitive impairment, was determined by individual perceived
barriers to screening, perceived benefits of screening, and perceived susceptibility to dementia.3
One Australian study shows that positive attitudes toward screening in general are associatedwith positive attitude toward dementia screening.30 Interestingly, this cross-sectional study inAustralia reported a negative association between
the level of perceived risk of Alzheimer’s disease
and acceptance of diagnostic testing among
participants with a relatively low educational level(i.e., 10 years of schooling or less).30
Overall, multiple studies indicated that increased
knowledge about dementia symptoms, diagnosis,
prognosis, and causes facilitated dementia diagnosis among potential patients.26,31-38 For instance,
results of a population survey administered inGermany suggested that greater dementia knowledge was inversely associated with skepticism
about early detection.31 Similarly, a study amongcity-dwelling adults in Ireland also found thatknowledge of dementia was a primary predictor of
intention to seek early diagnosis and care.32
In addition, knowledge and awarenessof available
resourcesand support were found to be significant determinants of help-seeking for memory
problems and of intention to pursue dementia
screening.8,18,39-41

A qualitative study of South Asian adults living
in and around Greater London, United Kingdom,
revealed that lack of knowledge of available
services for cognitive problems is a common barrier to seeking care and assistance.18 Although theoutcome was treatment and care for dementia,
rather than screening and diagnosis, the findings
also suggested that knowledge of available treatment options was a significant factor that affects
intention to seek dementia screening and diagnostic testing.
2. Attitudes: Denial, Negative
Emotions, and Skepticism
Studies found that negative attitudes, including
denial of symptoms, refusal of a formal assessment,5,14,42-45 skepticism toward effective treatment
options,2,8,46 and negative emotions toward screening, diagnostic tests, and disclosure of the results
were barriers to early diagnosis of dementia
among (potential) patients and the general public.
Specifically concerning (potential) patients, denial of symptoms and refusal to consult healthcare
providers were found to be barriers to dementia
screening.5,14,42-45 One qualitative study involving
general practitioners indicated that patient denialof dementia was more common among individuals
who did not have a family.42 Studies also presented that both intrapersonal and interpersonal levelfactors facilitated symptom denial and diagnosis
refusal among (potential) patients and the generalpublic. Normalization of dementia symptoms as
part of the usual aging process was found to be
associated with denial among Asian Americans.14
Another study suggested that denial and underestimation of genetic test results for Huntington’sdisease can be explained by psychosocial adaptive
defense against the potential threats.43
Attitude toward the presence of available andeffective treatment options was also found to be asignificant determinant of help-seeking for memory problems, screening and diagnostic testing fordementia among the general population.2,8,46 For
instance, a review study by Martin et al. (2015)
presented that both “lack of available treatment
options” and “fears that current treatment options

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are not effective” place negative impacts on decision for dementia screening.8
Negative emotions toward dementia and screening for dementia are also linked with negative
attitudes toward pursuing dementia screening
and denial of dementia.47-50 A qualitative study
by Manthorpe et al. (2003) found that not only
disclosure of the diagnosis, but also screening
and diagnostic testing could provoke negative
emotional reactions in patients. The authors
reported that patients could have “anxiety” and“depressive responses” after being diagnosed withdementia. Additionally, Turnbull et al. (2003)
reported that a primary cause of diagnostic denialof Alzheimer’s disease was negative emotions (i.e.,they “would be too upset” if they were informed
they tested positive for Alzheimer’s disease).47
Similar findings were found for predictive testing for Huntington’s disease among (potential)
patients in Germany.49
3. Social Stigma
Stigmatization of dementia was frequently cited asa barrier to care and diagnosis-seeking behaviors
among (potential) patients and the general public.
Even prior to the disclosure of the test results,
patients often experience increased levels of fear,
due to social and personal stigmas toward dementia.48 In particular, stigmatization of dementia
is a significant public health issue in Japan.51 A
survey of adults aged 40 or older in Nagoya City,
Japan, found that, despite increased knowledge
about dementia and positive changes in individual perceptions of dementia from 2004 to 2008,
more than 40% of participants considered dementia a “shameful disease.”51 Consistent with a priorJapanese study,52 older adults (age 65 years orolder), compared to younger adults (age 40-64
years), were more likely to consider dementia ashameful disease.51
A mixed-method study of community dwelling
Irish adults, with ages of 50-69 years, revealed thatstigma is a barrier to seeking help for memory problems and screening for dementia.32 Particularly, asystematic review of qualitative studies revealed
that stigma was an even greater barrier among
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minority ethnic populations, including individuals of Asian, African, and Caribbean decent in the
United Kingdom.53-55 This finding was echoed byan Australian study of Asian (older Chinese andVietnamese) immigrants.56 Additionally, strong
stigma was observed among Korean American
immigrants, who believed Alzheimer’s disease was“a form of insanity.”15
Notably, stigma affects not only the individuals
with dementia, but also extends to their family.
Often, families of a dementia patient experience a
feeling of shame and embarrassment, which maylead to social isolation.56
4. Autonomy
Many of the studies reviewed identified autonomy
as a key determinant of help-seeking behaviors
for memory problems and dementia screening among (potential) patients and the generalpublic.5,6,18,28,29,57-61 Evaluation of these studies
revealed two major themes related to autonomy,each with a different impact on screening anddiagnostic testing. First, ten studies determinedthat among (potential) patients and the general public, the desire to maintain independence,
prevent loss of their personal identity, maintainself-control, and protect their social position
decreased individual intention to pursue dementia screening and diagnostic testing.5,6,18,28,29,57-61
In one study, loss of independence was characterized as the loss of one’s home, driver’s license,
other privileges, and moving into a nursing home.
Fear of these events decreased participation in
Alzheimer’s disease screening among older adults
aged 60-82 years in Germany.57 Similarly, minority ethnic groups, such as South Asians in the
United Kingdom, also expressed that wanting tomaintain their autonomy, characterized as fear of
institutionalization and desire to maintain socialand familial position, impeded them from seeking
help for memory problems.18 The power of autonomy as a determinant of dementia care-seeking
varied across different cultures. For instance,a study found that primary care patients in the
United Kingdom were more likely to be concerned
about the loss of independence than primary carepatients in the United States.29

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The second autonomy theme that emerged
concerned an individual’s right to know andinterest in knowing about their health and diseasestatus. In contrast to the first autonomy theme,
this aspect of autonomy facilitated dementia
diagnostic testing and disclosure of the results
among (potential) patients and the general public.
Ten studies found that autonomy, defined as theright to know disease risk, reduce uncertainty, andplan for the future, was a facilitator of dementia
screening and diagnostic testing among (potential) patients and the general public.43,46-50,57,59,62,63
For instance, knowing one’s current health anddisease status and preparing for care and treatment options were found to facilitate the disclosure of diagnostic test for dementia.62 The ability
to plan for the future by exploring care options,managing family matters and housing needs, andorganizing legal and financial arrangements werealso positively associated with undergoing dementia testing and acceptance of test results.47,59,63
5. Access: Geographic Distance,
Transportation, Financial Issues,
Insurance, Quality Healthcare Services,
Resources, Information, and Education
The review indicated that access to healthcare
services was traditionally positively correlatedwith the uptake of screening and diagnostic testingfor dementia among (potential) patients and thegeneral public. “Access” was defined by geographic
distance, access to transportation,16,32,39,64-67 financial and insurance coverage,2,5,16,32,34,61,66,68-71 availability of resources for information and education
programs,18,69,72 and availability of quality healthcare services.73,74

accounting for sociodemographic factors such asage, sex, household size and income, among adults
age 65 years or older in Denmark.64
Financial issues
Research has indicated that, among (potential)
patients and the general public, financial challenges, concerns of cost, and reimbursement system
limitations were significant barriers to accessing
dementia screening and diagnosis.2,5,16,32,34,61,66,68-71
Moreover, limited health insurance and poor
financial conditions were also indicated to
substantially hinder timely screening, diagnosis,
and treatment for dementia at the “prescreening”
stage.2
Other access-related issues
Other access-related issues included access to
educational resources, support programs,18,72
community-based resources and services for longterm care,69 and social justice and health inequity
among minority groups.73,74 For instance, Abner etal. (2016) found that the prevalence of Alzheimer’s
disease and related disorders was 11% lower inrural counties (95% CI: 9%-13%) compared tourban counties in the United States. The authors
suggested that this difference in prevalence may
be attributable to limited access to appropriate
education and support programs.72 Stevnsborg etal. (2016) found that Danish dementia patientswith immigrant backgrounds were less likely tobe prescribed anti-dementia treatment and to live
in a nursing home than Danish-born dementia
patients.74

Geographic distance and transportation

6. Communication: Language,
Health Literacy, and Communication
With Healthcare Providers

Geographic distance and lack of access to transportation were indicated as significant barriers to
the uptake of dementia screening and diagnostic
testing.16,32,39,64-67 For instance, Jorgensen et al.
(2015), found that the greater the distance to
Alzheimer clinics, the less likely that an individual was diagnosed with Alzheimer’s disease, afterPrior studies have documented communicationrelated
factors—suchaslanguageskills,2,13,14,16,18,39,75-78 health literacy,56,75,79-81 andlack of ability or reluctance to communicate withhealthcare providers—as barriers to the uptake of
dementia screening and diagnostic testing among(potential) patients and the general public. In

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particular, researchers indicated that communication was especially important during the screening process.2
LanguageIn the reviewed literature, the lack of appropriate
language skills decreased the uptake of dementia
screening and diagnostic testing among ethnic
minority and immigrant populations.14,16,18,39,76,78
For instance, Mukadam et al. (2015) found thatinability to articulate one’s memory problems
discouraged help-seeking among ethnic minority
groups (in particular individuals of South Asiandescent) in the United Kingdom.18 Similar results
were found among Asian Americans, with national origins of Japan, China, or Korea,14 Chinese
and Vietnamese immigrants living in Australia,39
non-Western immigrants from Turkey, Morocco,and Suriname, in the Netherlands,76 and older
Hispanics in the United States.16
Health literacy
Limited health literacy was additionally indicated as a significant dementia care-seeking barrier among (potential) patients and the generalpublic.56,75,79-81 For instance, Lee et al. (2011)
reported that in addition to language proficiency,
health literacy levels affected timely screening anddiagnostic testing among elder immigrant populations. In many cases, most elder immigrants
needed support from their family to contact andcommunicate with healthcare professionals.56
Cultural beliefs
In addition to language and health literacy barriers, Jones et al. (2006) suggested that disparate cultural beliefs drove patients’ reluctanceto communicate with healthcare providers.14
For instance, Jones et al. (2016) reported thatJapanese American participants were reluctant toseek medical advice from providers because they
were concerned that they would offend providers
by “asking too many questions.” Authors determined that this behavior was influenced by an
ingrained cultural belief for “extreme respect for
authority.”14

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7. Social Support
Factors related to social support, such as approvaland suggestion of screening and diagnostic testing by family members, friends, and healthcare
providers, have been documented as significant
determinants of dementia screening and diagnostic testing among (potential) patients and thegeneral public.32,36,77,82-85 A recent mixed-method
study by Devoy and Simpson (2016) that was
grounded in the theory of planned behavior,found that social support from various influencers, including family, friends, peers, colleagues,
healthcare providers, and employers, was significantly associated with intention to seek screening
and get an early diagnosis among a community
sample of Irish adults (N=95) aged 50-69 years.32
Particularly, positive normative beliefs regarding influencers’ approval of dementia screening,
especially of family, friends, peers, colleagues, andhealthcare providers, were found to significantly
facilitate patients’ intention to seek dementia
screening and get a diagnosis. Conversely, normative beliefs regarding the disapproval of dementia
and dementia screening, particularly the beliefs of
employers, older adults, and younger adults, werereported as barriers to intention to seek screening
and get a diagnosis.32
In Asian populations, Moon et al. (2016) documented the facilitating role that social interaction and cohabitation with family played inincreasing the likelihood of early diagnosis ofdementia among adults aged 65 years or older
in South Korea.82 Similar findings were reported among multi-ethnic groups in the UnitedStates.77,83,84 Specifically, suggestions from family
members, healthcare providers, and social workers were found to play an integral role in facilitating health-seeking behaviors among Chinese
American, European American, and African
American populations.77,83,84 Furthermore, marital
status was reported as a predictor of better knowledge of dementia and a facilitator of help-seeking
for dementia screening and diagnosis, implying
the role of social support from family members.36,85

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8. Sociodemographic Factors: Ageand Socioeconomic Status
Prior literature has documented that age25,63,82,86
and socioeconomic status13,30,36,82, such as educational attainment and income level, are also
associated with screening and early diagnosis ofdementia.
Age
Mixed findings have been reported regarding
the association between age and early detectionof dementia.25,63,82,86 Most studies have indicatedthat older age is a barrier to early diagnosis ofdementia.25,63,82 For example, a study by Robinson
et al. (2014) found that older age (75 years orolder), compared with younger age (65-74 years)
was associated with delayed diagnosis of dementia among Irish adults.63 Consistently, Fowler etal. (2011) asserted that among adults attending
primary clinics in the United States, individuals
aged 70 years or older were more likely to refuse
dementia screening than those aged 65-69 years
old.25 In Asian populations, Moon et al. (2016)
documented that older age was associated withdelayed diagnosis of dementia among Koreansaged 65 years or older.82
However, these findings were not indicative ofcare-seeking behavior among individuals withearly-onset dementia (dementia onset prior to
65 years of age). Draper et al. (2016) found thatamong individuals with early-onset dementia, ayounger age of symptom onset was associated withgreater delay in medical consultation, dementia
diagnosis, and family awareness in Australia.86
Socioeconomic status
Concerning socioeconomic status, low level of
educational attainment was associated with lower
acceptance of diagnostic testing for Alzheimer’s
disease in Australia (less than or equal to 10

years of schooling versus longer),30 delayed diagnosis of dementia among Korean adults aged 65
years or older (year of education in continuous
scale),82 and difficulties in assessment for cognitive dysfunction among adults in India.13 Tan et al.
(2012) found that among the general public (age18 years or older) in Singapore, individuals withlower income (<USD 2,500) were less knowledgeable of dementia and more likely to hold negative
attitudes toward dementia than counterparts withhigher income (>USD 2,500).36 The authors also
found that living in public housing, comparedwith living in private housing, was associated withlack of awareness (good knowledge and positive
attitude) of dementia.36
9. Health and Disease Status
Prior studies found that comorbid conditions,such as depression, functional impairment, anddementia subtypes were associated with a lack ofawareness and delayed diagnosis of dementia.85-87
Draper et al. (2016) found that the presence ofdepression and mild cognitive impairment was
positively associated with delayed dementia diagnosis among individuals with early-onset dementia in Australia.86 Moreover, authors reported thatdementia types other than Alzheimer’s disease
and frontotemporal dementia, such as vascular dementia, Huntington’s disease, Lewy bodydementia, alcohol-related dementia, and progressive supranuclear palsy, were also positively associated with delayed dementia diagnosis among thesame sample.86
Other studies reported that functional impairment
was associated with lack of awareness of dementia
status among dementia patients in Brazil,87 as wellas undetected dementia among a nationally representative sample of Canadian adults (N=252) who
met the criteria for dementia.85

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E. KEY DETERMINANTS AMONG CAREGIVERS

Barriers and facilitators of screening and diagnosis of dementia were additionally reviewed in thecontext of “caregivers.” For the review, caregivers
were defined as family, friends, and relatives who
supported dementia patients or members of anolder population. In general, caregivers tended to
wait for 1-2 years before seeking help from theirprimary care physician.40

1. Lack of Knowledge and Awareness•Inability to identify dementia symptoms

Specifically, on average, the confirmation of diagnosis took another 20 months after caregivers(or HCPs) initially sought care or assistance.40
Understanding how to reduce or limit this gap isessential for improving screening and early diagnosis of dementia.

•

Lack of information about
dementia treatment•

Lack of information about theavailability and benefits of screening•

Perception of aging and the normalization ofdementia symptoms as natural aging process

Overall, the primary barriers
and facilitators included:•

Perceptions regarding severity
and susceptibility

1.

These barriers can be distilled
into three categories:

Knowledge and awareness about
dementia such as disease symptoms,
risks, severity and susceptibility, benefitof treatment, perception of aging

Lack of knowledge and awareness emerged as
significant barriers to dementia care-seeking
behaviors among caregivers. Specifically, thefollowing barriers were highlighted in thereviewed literature:

1.

Disease-related factors

2. Attitude (especially negative
emotions) toward dementia, dementia screening, and care burden

2. Treatment-related factors

3. Access to healthcare service and resources

Disease-related factors: Misunderstanding
and misperception of dementia

4. Social stigma
5.

Social network factors, including
the nature of a relationship withan at-risk individual or patient

Our review suggests that these factors areinterconnected.

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3. Perception of aging

Regarding disease-related factors, research identified that caregiver inability to identify dementia (including Alzheimer’s disease) is a primarybarrier. In some cases, caregivers recognize
the disease by name, but do not have in-depth
knowledge beyond the label.88 More specifically,
caregivers have difficulty identifying dementia

symptoms and severity, and traditionally fail todifferentiate them from other diseases and medical conditions.88-90 One study concluded that caregivers were not aware of the cognitive decline or
the change in behavior of patients91 until it became
more severe.54,92 However, other studies indicatedthat caregiver recognize symptoms, but delay inthe initiation of care because they believe thatmemory loss or other forms of cognitive decline
are normal symptoms of aging.14,16,66,88,90,91,93-95 In
some cases, normalization of dementia symptoms
was driven by cultural expectations.94 Even though
they may recognize more advanced symptoms
such as lack of action,94 gradual loss of intellectual
abilities, and changes in personality and behavior,88 caregivers still perceive them as a naturalprocess of aging and delay help-seeking.
In other cases, studies indicate that misperception of dementia symptoms is strongly associatedwith the low perception of disease severity.14,17,93
For example, the general public considered
Alzheimer’s disease to be a future health concern;
however, they perceived cancer and coronary
disease as more serious than Alzheimer’s diseasefor caregivers.17 Moreover, in communities withlimited English proficiency, caregivers who are
non-native English speakers reported that they
had other, more serious family and social issues
to attend to.93
In these communities, the lack of culturallyrelevant information and resources may contribute to the delay in care-seeking behaviors. In
terms of information, it is not only the lack ofknowledge, but also the low perception of disease
severity that delays care-seeking behaviors among
caregivers. These perceptions may contributeto caregivers’ belief that medical attention is not
required because they do not believe that thesymptoms are indicative of dementia.14
In addition to age-based normalization of dementia symptoms, some people misidentify memory
loss as a symptom of a mental health condition(stress, depression, trauma, and life hardships) or
the side effects of medication.93 Considering thesefindings, it is important to increase knowledge on

dementia (including Alzheimer’s disease), and its
consequences with caregivers so that they understand enough about its severity, as well as thebenefits of early detection and diagnosis.
Perception about treatments
In the literature, caregiver knowledge and perception of current dementia therapies emerged
as a significant determinant of care-seeking.
Unfortunately, in many cases, caregivers’
care-seeking behaviors are stymied by theirbelief that there is no cure or treatment for
dementia.88,96,97
Treatment beliefs were also affected by culturalbeliefs. For example, one study indicated thatmany Japanese-Americans felt that “western”
medical treatment was not effective.14 In these
Asian American communities, folk wisdom andcultural myths are often considered scientificfact.14 In this context, the lack of knowledge andawareness about treatment options delays caregivers’ action, regardless of symptoms recognition. Also, caregivers’ quality of life information
was nominated as a significant factor of low
awareness.87 Since caregivers are the gatekeepers
to care,7,77 provision of information on treatment
options, the process of treatment, and efficacy oftreatment may improve both patients’ and caregivers’ outcomes.
Potential facilitators
While most studies focus on barriers, there isresearch that highlights significant potential facilitators. For example, studies identified that among
caregivers’ care-seeking behavior was facilitatedby: knowing what to expect,88 better awareness of
disease prognosis and process,48 confirmation ofsymptoms,88 treatment access,88,95 access to futureplanning resources, delaying the progression of
disease,48,98 availability of support and education
on dementia,48,98 access to treatments and othertraining for rehabilitation,98 increased acceptanceof transition and the future role of caregivers,99
elimination of other causes of current symptoms,95
caregiver preparedness,66 financial benefits,2
making legal arrangements,48 and consideration

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E. KEY DETERMINANTS AMONG CAREGIVERS

E. KEY DETERMINANTS AMONG CAREGIVERS

of genetic counseling.48

found.43,65

2. Attitude

Distrust, doubt, and low expectations
about HCPs and treatment

Overall, caregivers’ negative attitudes delayeddementia detection, diagnosis, and ultimately
treatment. These negative attitudes have been
distilled into seven categories.
Fear
Studies show that caregivers’ fear was significantly related to their help-seeking behaviors.90 Fearincluded concerns about labeling and discrimination,100 about upsetting or being disloyal topatients,94 and about diagnosis—specifically thedevelopment of Alzheimer’s disease based on thepatients’ susceptibility.88
Worries
Several studies showed worries and concerns
affect caregivers’ help-seeking and can lead toanxiety.7 One study asserted that a personal experience with Alzheimer’s disease (such as a personwith a family member or a close friend affected bydementia, or a person who knows a caregiver ofsomeone with dementia) significantly increased
an individual’s concern about the disease,17 theimpact on caregivers’ life and family members’
reaction,66 screening,28 and the available treatment (effectiveness and side effects).101
DenialMany studies reported that caregivers exhibit
denial and have difficulties acknowledging andaccepting dementia. These emotional difficulties
included: the acceptance of a loved one’s having
dementia,90 perception of the inevitable cognitive decline and other symptoms,44,66 and denialof Alzheimer’s disease.102 Denial traditionallyoccurred among family members when a caregiverrecognized the symptoms.
In some cases, after the recognition of symptoms,
caregivers tend to ignore the issues and convince
themselves that it is all a normal part of aging.14,103
Sometimes, in addition to denial, avoidance reactions—feelings of not wanting to know—are also

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Caregivers’ beliefs and attitudes toward HCPs andtreatment additionally also likely have significant
effects on their care-seeking behaviors.40 Somestudies reported that caregivers may often havedoubts about doctors and their capabilities,93,101
particularly concerning the proficiency of general practitioners and primary care physicians.17,88
This distrust is often based on personal experiences, disappointment,88,91 and misdiagnosis prior todementia diagnosis.91
Negative feelings include caregivers’ belief of
HCPs’ unwillingness to diagnosis dementia, thegap of expectations between HCPs and caregivers
in terms of what can be done,93 HCPs’ negative
opinions and advice,104 and concern about racism
or discrimination through healthcare institutions.
Concern of discrimination is not only associatedwith race and ethnicity, but also socioeconomic
status.77 Some caregivers also doubt dementia
treatment, and believe that there is little it can
do to help patients.105 Caregivers’ behaviors arealso influenced by negative perceptions of theirgovernment’s investment in dementia.101
Concerns about care burden
Failure to seek care or delays in care-seeking behavior are also influenced by caregivers’
concerns about the burden of care.43,97 This
includes not only physical burdens (time),106 but
also emotional burdens.28 These relationships are
mediated via social support, family function, andcaregiving.106 Perception of the burden of care isalso affected by concerns about financial issues(income) and work (loss of employment).43,91 One
study reported that “becoming depressed” dueto emotional suffering was also a top barrier toscreening.28
Overall, caregiver burden was associated withnegative attitudes including authoritarianism,social restrictiveness, emotional reactions ofanxiety and aggressiveness toward dementia.107
Caregivers also reported that conflict with people

with dementia, lack of support from healthcare
professionals108 and low social support in general
are the reasons for delays in help-seeking.43
Other family members’
attitudes and thoughts
A family’s uncooperative attitudes103 and disagreements with caregivers about the importance of theissue often negatively affect caregivers’ care-seeking behaviors.95 These attitudes and disagreements significantly affect caregivers’ behavior
because caregivers traditionally discuss thepatient’s behavior within their family first, before
seeking help.91,94
Expectation for treatments
On the other hand, one study indicated that positive perspectives toward treatments can facilitate
caregiver care-seeking behavior. Frequently, individuals sought an evaluation because they expected that it would aid them in pursuing care andtreatment to slow disease progress.93
3. Access to healthcare
Limited access to healthcare and treatment is a
primary barrier to early diagnosis. These barriers
are mainly related to healthcare costs and infrastructure, lack of referral to experts, and time andlanguage-related issues.

and emotionally) among caregivers.109
Lack of referral to experts
In most health systems, caregivers need a primary care physician’s referral to access dementia
screening and care.95 In some cases, caregivers
mentioned that lack of access to trained physicians obstructs help-seeking behavior.95 Although,when patients are able to access care, providers may misdiagnose patients or fail to provide
actionable advice. As a result, caregivers tend to
think that there is no need to seek further help.69,94
Lack of time and service
The time required to get screened is also a burden
for caregivers that may interfere with timely diagnosis of dementia.39,95 Other access-related factors
include: travel required to access the service39 andaccessibility to specialists in rural areas.110
Language
Similar to findings about (potential) patients andthe general population, a number of studies report
limited language skills as an additional barrier.16,39,77 In some cases, limited language skills areassociated with low levels of education and literacy.76 Also, one study reported that caregivers forwhom English is a second language prefer information in their native language, although they
understand the English information adequately.111

Healthcare costs and systems
High costs of care and treatment frequently prevent caregivers from acting upondementia symptoms.16,66,95 This is especially true among caregivers (and alsopatients) of lower socioeconomic status65 andindividuals who lack health insurance.16,69 Overly
complicated healthcare systems39 and the lackof appropriate care services69 are also indicatedas significant barriers to care-seeking behaviors.
Moreover, one study reported that lack of resources creates family conflicts and leads to feelings offrustration and helplessness (both economically

4. Social network including therelationship with the at-risk individual
Some studies reported recommendations fromone’s social network are a strong facilitatorof care-seeking behavior among caregivers.112
Moreover, care seeking was also strongly facilitated by confirmation from other people about achange in at-risk individual’s behavior.91 On theother hand, stigma from individuals within a caregiver’s social network was cited as a significant
barrier. 6,68

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F. KEY DETERMINANTS AMONG HEALTH CARE PROVIDERS

F. KEY DETERMINANTS AMONGHEALTHCARE PROFESSIONALS

Barriers to and facilitators of screening and diagnosis of dementia were reviewed in the context
of HCPs. For the purposes of this review, HCPs
were defined as healthcare providers or practitioners. Depending on the context, this included
medical doctors (both primary care physicians
and specialists), nurse practitioners, and clinicalpsychologist.
Barriers to and facilitators ofscreening and early diagnosis among
healthcare providers included:1.

Knowledge & awareness (e.g., understanding and knowledge of dementia, training
and education in dementia, uncertainty
in differentiation and diagnostic testing,lack of confidence and self-efficacy),

2. Attitudes (e.g., not feeling responsiblefor diagnosis disclosure, skepticism,low motivation due to care burden,
3. Perception about screening,
diagnosis, dementia and government guidelines/support,
4. Resources and availability of healthcare (e.g., lack of time, insufficientvalidity in screening test, limited
resources and supports for patients,and financial constraints of patients).

34 | SOCIAL MEDICINE FOR DEMENTIAREVIEW OF EVIDENCE 1

1. Knowledge and awarenessStudies have reported that knowledge-related
factors, such as overall understanding of dementia, lack of training and education, self-efficacy,differentiation and diagnostic uncertainty, weresignificant predictors of dementia screening anddiagnostic testing among HCPs.
Overall understanding and knowledge of
dementia
Studies reported that insufficient knowledge
about dementia among HCPs was a significant
barrier to dementia screening and diagnosis.35,40,68113 For instance, Kirk (2014) found thatlack of knowledge among HCPs was a barrier
to dementia screening in the United States.35
Another study by Aminzadeh et al (2012) showedthat a limited understanding of dementia among
primary care physicians was a barrier to dementia diagnosis and management in primary caresettings.40 Additionally, Sundareswaran (2015)
found significant variations in HCPs’ knowledgeof dementia and corresponding diagnosis andmanagement in Peru,68 and Pathak et al (2015)
reported an overall low level of general practitioner’s knowledge of dementia in Nepal.113

general practitioners was associated with a delayed
diagnosis of dementia among elderly people ofChinese and Vietnamese decent in Australia.56
Additionally, Ahmad et al (2010) found thatdementia training among general practitioners
was insufficient in England,114 and Szymczynska(2011) presented that training in geriatric careshould be considered to improve dementia diagnoses by HCPs.110

Skepticism

Differentiation and diagnostic uncertainty

Research indicates that physicians may not be
motivated to diagnose dementia due to the burdenof care. The process of a dementia diagnosis isoften complicated and time-consuming because of
the nature of the assessment and delicate mannerin which results must be communicated topatients and their families.103 Many HCPs, particularly general practitioners, already grapple withexisting time and resource constraints. As a result,they may be concerned that dementia diagnoses
and support may further increase their demands
and consume more time.103,128,129

Prior literature has documented that uncertainty in diagnoses and difficulties in differentiating dementia from normal aging weresignificant barriers to dementia screening andtimely diagnoses among HCPs. For instance,
diagnostic uncertainty has been reported as acause of delayed diagnoses of dementia among
HCPs.42,65,115-119,120,121 Difficulties in differentiating
dementia from normal aging has also been documented as a barrier of timely diagnoses of dementia among HCPs.
Confidence and self-efficacy
Healthcare providers’ confidence and self-efficacy
were also reported as significant factors contributing to higher levels of dementia screening anddiagnostic testing. For instance, HCPs’ confidence
levels are positively associated with the frequencyof reported, diagnosed dementia cases.118,121,122,123
Another study found that a lack of confidence indiagnosing dementia was one of the main barriers to timely diagnoses of dementia by primarycare physicians in Spain.124 Similar findings werereported in both general practitioner and dementia specialist populations in Germany.125
2. Attitudes

Training and education in dementia
Studies indicated that a lack of sufficient training and education in dementia diagnoses andmanagement was a barrier to dementia screening
and diagnosis among HCPs.56,110,114 A study by
Lee (2011) reported that insufficient training ofOf the articles reviewed, many indicated that
HCPs’ attitudes toward dementia were significant determinants of early and proper dementia
diagnosis. These attitudes have been distilled into
eleven categories.

Some studies indicated that HCPs may be skepticalof the benefit of current dementia treatments,126
and may even doubt the benefit of diagnosis
because there is no effective treatment.127 In fact,many are concerned that they can’t offer helpful
direction for patients who are diagnosed.127
Low motivation due to care burden

Negative perceptions of dementia andaging
Stigma associated with dementia is a primary
inhibitor of early stage diagnosis by HCPs.2.119,128 In
fact, one study indicated that the word “dementia”
is so stigmatized, that some HCPs avoid using theterm.130 In addition to stigma, therapeutic nihilism and ageism result in the prioritization of other
health issues.40
Not feeling responsible for disclosure ofdiagnosis
One study indicated that HCPs often believe thatgenetic counselors should be tasked with diagnosing dementia and should provide related counseling and support.131 However, it should be notedthat this study was conducted in 1990 and theresults may no longer be generalizable to modern
HCPs.

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Facilitators
Among nurses, increased patient-centered attitudes are associated with timely recognition ofpatients’ cognitive impairment.132
3. Perception about screening, diagnosis,
dementia, and the government
HCPs’ perceptions about current treatment
options often determine whether or not they
feel dementia screening is appropriate.127 HCPs’
perceptions about treatment efficacy and availability are mixed and are often highly individual.133
Perception about screening
The studies found that many HCPs chose to forgo
regular screening of patients because of doubts
regarding screening accuracy.102 Some HCPs foundthat, compared with clinical assessments andtheir intuition, validated scales did not provide
any additional information.134 Furthermore, some
HCPs may refrain from using validated scales orparticular screening methods due to discomfort
using the screening tools, lack of adequate training, and low self-efficacy.118
Concern about the impact of diagnosis
In many cases, physicians tend to delay theirdiagnosis of dementia until the symptoms are
obvious. Often, they are concerned about thenegative impact of a diagnosis on patients andtheir families, so they want to be sure that theirdiagnosis is correct.65,127,128 Specifically, manystudies suggest that HCPs believe that patients
will not be able to deal with the diagnosis.48,118,129,135
Moreover, studies suggest that HCPs believe thatafter diagnosing a patient with dementia, labelingand stigma may change the relationship between
the patients and other people.48 In light of these
beliefs, it’s not surprising that many HCPs havedifficulty disclosing test results to patients andfamilies.118 Furthermore, HCPs are also concernedthat time limitations will not allow them to properly communicate with patients and families.103

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F. KEY DETERMINANTS AMONG HEALTH CARE PROVIDERS

Value proposition of dementia and early
diagnosis

4. Resources and Availability
in Healthcare

In some cases, studies suggest that general physicians perceive dementia as a “less valuable problem” in comparison to other diseases.113 On theother hand, other studies indicated that generalpractitioners feel that diagnosis is important,136
but feel that there is little or nothing that can be
done. 40,118,119,136,137

Studies have documented that resource-related
factors, such as lack of time, insufficient validity inscreening tests, limited resources for patients, andfinancial constraints of patients, were significant
HCP barriers to timely dementia diagnoses.

Perception of early diagnosis—particularly doubts
about usefulness/desirability of early diagnosis,
HCPs’ low-perceived benefit of early diagnosis,7,56,128 and a perceived lack of need for diagnosis118—affect HCPs’ decisions to conduct necessary
dementia assessment for patients.56 One study
indicated that HCPs believe that early stage
diagnosis of dementia is not necessary because
symptoms at that point in time are not particularly debilitating.122 Other studies indicated thatan HCP’s choice to disclose screening results is
affected by their perception that patients are incapable of understanding and processing the diagnostic information.121 Consistently, a qualitativeinterview with rural practitioners revealed that itis difficult for family members to accept their family’s dementia diagnsosis.103 Furthermore, some
HCPs believe that early detection of dementia will
result in more harm than good2 because of limited
effective treatment options.2,129 Some primary care
physicians assume that a patient or caregiver does
not want a diagnosis until severe symptoms areevident.116

Across a majority of HCP-focused studies, lack ofclinician time was reported as a barrier to dementia screening, diagnosis, and care among HCPs.
Stewart et al (2014) found that lack of clinician
time was one of the most frequently perceived
barriers in dementia assessment and care amongfamily physicians in the United States.138 Koch(2010) also reported that HCPs did not have sufficient time to perform necessary procedures andassessments for dementia diagnoses.116 Similarfindings were reported from other studies as well
.2,7,42,56,90,118,124,134,139 For instance, Bond et al (2005)
and Biose et al (1999) pointed out that the lack oftime for patient consultation and time insufficiency in conducting cognitive assessment tests werebarriers to adequate dementia screening.7

Perception of the role of government
While the percentage of HCPs who perceivea negative impact of the government’s role indementia varies by country (11% in France to 50%
in the United Kingdom), on average, 29% of physicians in the study indicated that the governmentis a barrier to providing dementia medications.136

Lack of time

Insufficient validity in screening tests
Studies have documented that the lack of validated and time-efficient screening tools are barriers
to dementia screening and diagnosis among
HCPs. For instance, the overall lack of validity ofexisting screening tools for dementia was reported as a barrier to routine cognitive assessments
for dementia screening among HCPs.2,7,48,65,140
Additionally, lack of time-efficient screening tools
were found to be a barrier to dementia screening
and diagnosis among HCPs.118

Financial constraints of patients
Factors related to financial constraints such as
cost, lack of insurance coverage, and low reimbursement have been reported as barriers todementia screening and diagnosis among HCPs.
For instance, concerns about the cost of dementia care was found to be a barrier to dementia
screening among HCPs.2 Additionally, insufficientfinancial remuneration,116 and low reimbursement
rates117,139 were presented as barriers to dementia
screening and timely diagnosis by HCPs.
Limited resources and support for patients
Studies reported lack of patient-centric resources
as barriers to dementia screening and diagnosis
by HCPs. For instance, lack of connection with
community-wide resources available for patientswas found to be a contributor to delayed detectionof dementia by HCPs.139 Similar findings werereported from other studies—that lack of access tocommunity-wide resources and services,116 limited local resources for supportive services,113 andlimited social support115 were suggested as barriers to dementia screening and diagnosis by HCPs.
On the other hand, one study indicated that HCPs
feel that they have sufficient resources but otherbarriers, such as waiting lists, financial issues,geographic distribution, and stigma, prevent
them from devoting these resources to dementia
care.119 Another study demonstrated that HCPs
are concerned about the cost of treatment as it isexpensive.129,135

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G. DISCUSSION

G. DISCUSSION

The following tables categorize the key
findings from a literature review using theconstructs from Andersen’s healthcare
utilization model (AHUM).10,11 Findings
have additionally been separated bypopulation type—(potential) patients andthe general public (Table 1), caregivers(Table 2), and HCPs (Table 3).
Across all three populations, negative attitudes(predisposing characteristics) and lack of knowledge (enabling resources) were indicated as key
determinants of health-seeking behavior. Social
stigma, social support, and financial barriers additionally emerged as common determinants among
both (potential) patients and caregivers.
Overall, concerning the determinants outlinedby the AHUM framework, key findings regarding(potential) patients and the general public weremore comprehensive than what emerged regarding caregivers and HCPs.
In fact, the literature regarding (potential)
patients covered all of the key factors of the AHUM
framework. For this group, environmental factors(access, such as geographic distance, transportation) were the base for three other categories:
predisposing characteristics, enabling resources
and need. While environmental factors are difficult to change through communication or education, understanding them is critical. Programs
developed to increase early detection and diagnosis need to take these factors into consideration and plan accordingly. Among predisposing
characteristics, sociodemographic factors such asage, educational background, and income levelemerged as significant determinants of dementia

38 | SOCIAL MEDICINE FOR DEMENTIAREVIEW OF EVIDENCE 1

TABLE 1care-seeking behavior. Again, while these factors
are not easily influenced by program activities,
it is essential that variance in sociodemographic
factors are understood and accounted for during
program development. Communication, including
health literacy and communication with healthcare providers, is the factor that only (potential)
patients and the general public listed. Concerning
need, autonomy was indicated as an important
determinant of care seeking among (potential)
patients and the general public.
Findings regarding caregivers indicated thatknowledge and awareness were key determinants.
These factors were divided into disease-related
factors and treatment-related factors. For caregivers, rather than disseminating knowledge on
dementia in general, focusing messaging on thetwo specific subgroups of information may be
more effective.
For HCPs, the literature indicated that current
perception of dementia, diagnosis, and treatment significantly affects their motivation to takefurther action for dementia detection and diagnosis. When disseminating information, it may
be important to assess their current perception
and change it by leveraging messages that seek
to increase knowledge and awareness. It was also
indicated that HCP behavior was affected by environmental factors such as healthcare resources
and availability. These factors are difficult and areoften costly to change, but should still be taken
into consideration when developing HCP-focusedprograms or campaigns.

Summary of findings regarding barriers to screening for and diagnosis ofdementia among (potential) patients and the general public

FACTORKEY FINDINGSENVIRONMENTAL

Access: Geographic Distance, Transportation
Geographical distance and lack of access to transportation were indicatedas significant barriers to the uptake of dementia screening and diagnostic testing. Specifically, the greater the distance to clinics, the less likely apotential patient would be diagnosed.
Sources: 16, 32, 39, 64-67

PREDISPOSINGCHARACTERISTICS

Attitudes: Denial, Negative Emotions, and Skepticism.
Negative attitudes, including denial of symptoms, refusal of a formal
assessment, skepticism toward effective treatment options, and negative
emotions toward screening, diagnostic testing, and disclosure of results,
were barriers to seeking screening and diagnostic testing among patientsand the general public.
Sources: 2, 5, 8 14, 42-50

Communication: Language, Health Literacy, Cultural
Beliefs, and Communication With Healthcare Providers
Prior studies have documented communication-related factors, such as
language skills, health literacy, and lack of or reluctance to communicate
with healthcare providers as barriers to the uptake of dementia screening
and diagnostic testing among patients and the general public.
Sources: 2, 13, 14, 16, 18, 39, 56, 75-81

Sociodemographic Factors
Sociodemographic factors such as age and socioeconomic status, such as
educational attainment and income level, are associated with screening
and timely detection of dementia. Specifically, studies indicated that older
age and lower socioeconomic status (low educational attainment and low
income) were barriers to the timely diagnosis of dementia.
Sources: 13, 25, 30, 36, 63, 82, 86

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G. DISCUSSIONTABLE 1

Summary of findings regarding barriers to screening for and diagnosis ofdementia among (potential) patients and the general public

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G. DISCUSSIONTABLE 1

Summary of findings regarding barriers to screening for and diagnosis ofdementia among (potential) patients and the general public

FACTORKEY FINDINGSFACTORKEY FINDINGSENABLINGRESOURCES

Lack of Knowledge and Awareness

ENABLINGRESOURCES

Access: Information, Education, andQuality Healthcare Services

Lack of knowledge and awareness of the risk of dementia (as well as thebenefits of screening and early detection) posed significant barriers to diagnosis of (and subsequent care for) dementia. Moreover, they contributed
to “normalization.” Normalization occurs when an individual mistakes
dementia symptoms for normal signs of aging.

Studies suggest that lack of appropriate education and support programs
related to dementia are barriers to patient diagnosis.
Sources: 18, 69, 72-74

Social Support

Consistently, potential patients with greater knowledge of dementia weremore likely to get screened and be diagnosed.
Knowledge and awareness of available resources and support was additionally found to be a significant determinant of help-seeking intention formemory problems and screening for dementia.

Factors related to social support, such as approval and suggestions ofscreening and diagnostic testing by family members, friends, and healthcare
providers, have been documented as significant determinants of dementia
screening and diagnostic testing among patients and the general public.

Sources: 2, 3, 8, 12-41

Sources: 32, 36, 77, 82-85

Social Stigma
Individual and social stigma of dementia was frequently cited as a barrier
to care and diagnosis-seeking behaviors among patients and the generalpublic. In particular, stigma toward dementia is a significant public healthissue in Japan.
Often families of a dementia patient experience shame and embarrassment,
which may lead to social isolation.
Sources: 6, 15, 32, 48, 51-55

Access: Financial Barriers and Insurance
Prior studies reported that financial challenges, concerns of cost, andlimitations in systems of reimbursement proved to be significant barriers
to accessing dementia screening and diagnostic testing among patients andthe general public.
Sources: 2, 5, 16, 32, 34, 61, 66, 68-71

NEED

Autonomy
A patient’s desire to maintain autonomy can act as a barrier to early
detection. Specifically, a desire to maintain independence, prevent loss of
personal identity, maintain self-control, and protect their social position
affected potential patients’ motivation to pursue dementia screening anddiagnostic testing.
In contrast, a second theme regarding autonomy emerged and indicatedthat an individual’s perceived “right to know” and interest in their healthstatus facilitated dementia diagnoses among patients and the general public.
These individuals valued the ability to plan for the future by exploring care
options, managing family matters, and housing needs, and organizing legal
and financial arrangements.
Sources: 5, 6, 18, 28, 29, 43, 46-50, 57-63

Health and Disease Status
Prior studies found that comorbid conditions, such as depression, functional impairment, and dementia subtypes, were associated with a lack ofawareness and a delayed diagnosis of dementia.
Sources: 85-87

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G. DISCUSSIONTABLE 2

Summary of findings regarding barriers to screening for and diagnosis ofdementia among caregivers

FACTORKEY FINDINGSENVIRONMENTAL

Access: Distance and Language
Lack of referrals to experts, as well as time and language-related issues.
Sources: 16, 39, 69, 76 77, 94, 95, 110, 111

PREDISPOSINGCHARACTERISTICS

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G. DISCUSSIONTABLE 3
FACTORKEY FINDINGSPREDISPOSINGCHARACTERISTICS

Attitudes

Attitudes
Negative caregiver attitudes related to dementia were identified as barriers
that delay dementia detection, diagnosis, and treatment. Negative attitudes
included fear, worries, denial, distrust or low expectations of HCPs andtreatment, concerns about the burden of care, and negative perception of influencers’ opinions.

Sources: 2, 40, 103, 119, 126, 132

Related Perceptions
HCPs’ perceptions about current treatment options often determine whether or not they feel dementia screening is appropriate. HCPs’ perceptions
about treatment efficacy and availability are mixed and are often highly
individual. Research indicated that perceptions regarding screening, diagnostic impact, value of early detection, and the role of government wereparticularly associated with dementia care.

Sources: 7, 14, 17, 28, 40, 43, 44, 65, 66, 88, 90, 91, 93-95, 97, 100-108

Knowledge and Awareness: Disease-Related Factors
Caregiver inability to identify dementia (including Alzheimer’s disease) was
identified as a primary barrier to screening and diagnosis. In some cases, caregivers would recognize the symptoms, but lack of knowledge and awareness ofdementia resulted in normalization. In other cases, lack of action was associated with low perception of disease severity.
Sources: 14, 16, 17, 54, 66, 88-95

Knowledge and Awareness: Treatment-Related Factors
Knowledge and positive perceptions of diagnosis and treatment of dementia
can drive care-seeking behaviors among caregivers.
Sources: 7, 14, 77, 87, 88, 96, 97

Negative HCP attitudes toward dementia were identified as barriers thatdelay dementia detection, diagnosis, and treatment. Negative attitudes
included skepticism of current treatments, negative perception of burdenof care, and negative perceptions toward dementia and aging.
Conversely, among nurses, increased patient-centered attitudes are associated with timely recognition of patients’ cognitive impairment.

Conversely, it was found that positives toward treatments can facilitate caregiver care-seeking behavior.

ENABLINGRESOURCES

Summary of findings regarding barriers to screening for and diagnosis ofdementia among HCPs

Sources: 2, 7, 40, 48, 56, 65, 102, 103, 113, 116, 118, 119, 121, 122, 127-129, 133-137

ENABLINGRESOURCES

Lack of Knowledge and AwarenessStudies have reported that knowledge-related factors, such as overall
understanding of dementia, training and education, self-efficacy, differentiation and diagnostic uncertainty, were significant predictors of whether
dementia screening and diagnostic testing were conducted by HCPs.

Social Stigma

Sources: 35, 40, 42 56, 65, 68, 110, 113-125

Stigma of dementia from caregivers’ social networks was identified as a strong
barrier to care-seeking behavior.

Healthcare Resources and Availability

Sources: 6, 68

Access to Healthcare: Financial Cost
Limited access to healthcare and treatment due to healthcare cost is a primarybarrier to early detection and diagnosis.

Studies have documented that resource-related factors, such as lack oftime, insufficient validity in screening tests, limited resources for patients,and financial constraints of patients, were significant barriers to timely
dementia diagnosis by HCPs.
Sources: 2, 7, 42, 48, 56, 65, 90, 113, 115, 116-118, 124, 129, 134, 135, 138–140

Sources: 16, 39, 65, 66, 69, 95, 109

Social Support
Recommendations and support from caregivers’ social networks were identified as strong facilitators of care-seeking behavior.
Sources: 91, 112

42 | SOCIAL MEDICINE FOR DEMENTIA

SOCIAL MEDICINE FOR DEMENTIA | 43

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H. CONCLUSIONREVIEW OF EVIDENCE 1

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Through the extensive review of existing literature,
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While there were some similarities, the literature
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120. Sourdet S, Andrieu S, Vellas B. Understanding
perception and attitudes toward Alzheimer’s
disease in France: IMPACT survey. Cahiers del’Annee Gerontologique. 2011;3(3):141-149.

134. Murphy K, O’Connor DA, Browning CJ, et al.
Understanding diagnosis and management ofdementia and guideline implementation in generalpractice: a qualitative study using the theoreticaldomains framework. Implementation Science. 2014;9.

121. Cahill S, Clark M, Walsh C, O’Connell H, Lawlor
B. Dementia in primary care: the first survey of
Irish general practitioners. International Journalof Geriatric Psychiatry. 2006;21(4):319-324.

135. Milne AJ, Woolford HH, Mason J, Hatzidimitriadou E.
Early diagnosis of dementia by GPs: An exploratory studyof attitudes. Aging and Mental Health.
2000;4(4):292-300.

122. Iliffe S, Wilcock J. The identification of
barriers to the recognition of, and response to,dementia in primary care using a modified focus
group approach. Dementia. 2005;4(1):73-85.

136. Martinez-Lage P, Frolich L, Knox S, Berthet
K. Assessing physician attitudes and perceptionsof Alzheimer’s disease across Europe. The journalof Nutrition, Health & Aging. 2010;14(7):537-544.

123. Huang H-L, Shyu Y-IL, Huang H-L, et al. Factors
 associated with dementia care practices among community
health nurses: results of a postal survey. International
Journal of Nursing Studies. 2013;50(9):1219-1228.

137. Overcoming barriers to early dementia
diagnosis. The Lancet. 2008;371(9628):1888.

124. Coll De Tuero G, Garre-Olmo J, Lpez-Pousa S, Vilalta
J, Limon E, Caja C. Perception, attitudes and needsof primary care professionals as regards the patientwith dementia. Atencion Primaria. 2011;43(11):585-594.

138. Stewart TV, Loskutova N, Galliher JM, et al. Practicepatterns, beliefs, and perceived barriers to care regarding
dementia: A report from the American Academy of Family
Physicians (AAFP) National Research Network. Journal of
the American Board of Family Medicine.
2014;27(2):275-283.

125. Kaduszkiewicz H, Wiese B, van den Bussche H. Selfreported competence, attitude and approach of physicians
toward patients with dementia in ambulatory care:
results of a postal survey. BMC HealthServices Research. 2008;8(1):1.

139. Hinton L, Franz CE, Reddy G, Flores Y, Kravitz RL,
Barker JC. Practice constraints, behavioral problems,and dementia care: Primary care physicians’ perspectives.
Journal of General Internal Medicine.
2007;22(11):1487-1492.

126. Ólafsdóttir M, Foldevi M, Marcusson J. Dementia inprimary care: Why the low detection rate? Scandinavian
Journal of Primary Health Care. 2001;19(3):194-198.

140. Downs M, Cook A, Rae C, Collins K. Caring
for patients with dementia: the GP perspective.
Aging & Mental Health. 2000;4(4):301-304.

127. Renshaw J, Scurfield P, Cloke L, Orrell M. Generalpractitioners’ views on the early diagnosis of dementia.
British Journal of General Practice. 2001;51(462):37-38.

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EXECUTIVE SUMMARY

2. EXAMPLES OF DEMENTIA
DETECTION AND
DIAGNOSIS PROGRAMSPUBLISHED IN PEERREVIEWED JOURNALS

To answer this RQ2, researchers at McCann Healthand Harvard University conducted a systematic
literature review. The review included peer-reviewed articles published on or before October 1,
2016, from PubMed, Embase, and Web of Science.
Articles were found using key search terms suchas “dementia,” “diagnosis,” “screening,” “detection,” “campaign,” and “health promotion,” aswell through a gray literature search.
Using these search criteria, researchers identified
a total of twelve articles relevant to RQ2. An extensive review of the identified literature revealed
that successful interventions included community-based screening programs that targeted both
the general public and high-risk subpopulations.
These interventions focused on increasing knowledge and awareness of dementia and dementia
screening, and leveraged messages that stressed
the benefits of screening and early detection.

Specific approaches used in the successful interventions included small group sessions, telephone-based screenings, local regional approaches, and screening programs based in primary careclinics. The literature additionally revealed that,for healthcare providers, training and educational
interventions improve primary care physician’s
diagnosis and management of dementia, as wellas increase knowledge and change attitudes
toward dementia symptoms and early detection.
The components and features of effective interventions identified through this literature review
should be considered when developing policies,
campaigns, and promotion programs related todementia screening and early diagnosis.

EXECUTIVE SUMMARY

In response to the dramatic increase in dementia
cases globally, a growing number of studies havehighlighted the importance of screening and early
detection. However, despite research stressing theimportance of testing, there is a dearth of studies
investigating and evaluating related communication
campaigns and intervention programs to promotedementia screening.
Therefore, our second research question (RQ2)
asked: “Are there communication campaigns andintervention programs focused on promoting
early detection and early diagnosis of dementia?

50 | SOCIAL MEDICINE FOR DEMENTIA

If so, what factors contributed to the success or
failure of past communication campaigns andintervention programs focused on promoting
early detection and early diagnosis of dementia?”

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REVIEW OF EVIDENCE 2

CONTENTS
A. INTRODUCTION
B. METHODS
C. RESULTS
D. FINDINGS
E. APPENDIX (SUMMARIES OF STUDIES)
F. REFERENCES

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REVIEW OF EVIDENCE 2

A. INTRODUCTION

The sharp increase in the global prevalence of
dementia is an urgent public health issue. Currently,
nearly 36 million people are reported to be affectedby dementia around the world.1 According to theWorld Alzheimer Report, the number of individuals
affected by dementia is expected to reach 66 million
by 2030, and 115 million by 2050.1 If left untreated,individuals who suffer from dementia experiencesignificant decreases in cognitive ability that subsequently affect their overall health and quality of life.
Moreover, due to its debilitating symptoms,
dementia is also a significant burden for caregivers and family members.1 However, this burden
can be mitigated by early detection. With a proper, timely diagnosis, affected individuals andcaregivers can access effective healthcare services
to delay disease progression, utilize support toimprove quality of life, and leverage resources
for social support.2-6 However, despite researchstressing the salience of testing, there is a significant lack of studies investigating and evaluating
related communication campaigns and intervention programs. Therefore, we sought to address asecond research question:

52 | SOCIAL MEDICINE FOR DEMENTIA

RQ2: What determined the success (or lack ofsuccess) of past communication campaigns andintervention programs specifically focusing on
early detection and early diagnosis of dementia?

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B. METHOD

RQ2

B. METHODS

n=2,582
Similar to the approach used toaddress RQ1, a systematic literature
review was conducted using a
two-step selection process:1.

A broad literature search of articles published
before October 1, 2016 using predeterminedsearch terms and three relevant, academic
databases (PubMed, Embase, and Web of
Science)

2. A subsequent screening process by three independent investigators.
PubMed was the first database searched. To
search PubMed, researchers used Medical Subject
Headings (MeSH) terms, a controlled vocabulary
thesaurus developed by the National Library ofMedicine, or keywords including at least one term
per each section as follows—Section 1: dementia
OR Alzheimer, AND Section 2: diagnosis, mass
screening test, detection, testing, OR recognition,
AND Section 3: health promotion, campaign,
screening program, OR screening intervention.
Search 1 Boolean Logic:(“Dementia”[mesh] OR alzheimer*[tiab] OR dementia*[tiab])
AND (“Diagnosis”[Mesh] OR “diagnosis”[Subheading]
OR “Mass Screening”[Mesh] OR diagnos*[tiab] OR
screen*[tiab] OR testing[tiab] OR tested[tiab] OR
detection[tiab] OR test[tiab] OR recognition[tiab]) AND(“Health Promotion”[Mesh] OR campaign*[tiab] ORpromotion*[tiab] OR promoting[tiab] OR (screening
program[tiab]) OR (detection program[tiab]) OR (screening
promotion[tiab]) OR (screening intervention[tiab]))Subsequently, for the Embase search, researchutilized the Emtree terms. Emtree is a hierarchically-structured, controlled-vocabulary thesaurus
for Embase. The search was conducted using
Emtree terms or keywords including at least
one term per each section as follows—Section 1:
dementia OR Alzheimer, AND Section 2: diagnosis, screening, detection, test, OR recognition
AND Section 3: health promotion, campaign, OR
detection program.
54 | SOCIAL MEDICINE FOR DEMENTIA

Articles searched throughPubMed, Embase,and Web of Science

Search 2 Boolean Logic:(‘dementia’/exp OR ‘dementia’ OR alzheimer*:ab,ti OR
dementia:ab,ti AND [embase]/lim) AND (‘diagnosis’/exp OR diagnosis:ab,ti OR ‘mass screening’/exp OR mass
AND screening:ab,ti OR ‘screening’/exp OR screen*:ab,tiOR test*:ab,ti OR detection*:ab,ti OR recognition*:ab,tiAND [embase]/lim) AND (‘health promotion’/exp OR
campaign*:ab,ti OR promotion*:ab,ti OR promoting:ab,tiOR ‘detection program’:ab,ti OR ((screen* OR detection)
NEAR/3 program*):ab,ti OR ((screen* OR detection)
NEXT/1 program*):ab,ti AND [embase]/lim)

n=108
Articles selected
after title reading

Finally, for the Web of Science search, we usedkeywords including at least one term per eachsection as follows—Section 1: dementia OR
Alzheimer, AND Section 2: diagnosis, screening,detection, test, OR recognition, AND Section
3: screening program, OR screen/detection
promotion/program/campaign.

n=12

Search 3 Boolean Logic:
TS=(“alzheimer*” OR “dementia*”) AND TS=(“diagnosis*”
OR “mass screening” OR “screen” OR “test” OR “detection”
OR “recognition”) AND TS=(“screening program” OR“campaign*” OR “promotion*” OR “promoting” OR ((screen*
OR detection) NEAR/3 (program* OR campaign*)))The searches yielded 1,086 articles from PubMed,
1,023 articles from Embase, and 473 articles fromWeb of Science. Additional articles were added
through a lay literature search.
After the search, three independent investigators
further screened the results to identify relevant
articles for RQ2 based on the following inclusion
criteria: any type of study (review, experimental,
observational, qualitative) that investigated any
policy, intervention, or program developed to
improve dementia screening or early detection.
Post screening, a total of twelve articles wereselected and further evaluated.

Articles selected after
abstract/text reading

Figure 1. Selection process for RQ2.

C. RESULTS
In general, there were very few programs that fit
the inclusion criteria. Searches yielded a substantial number of results, but the majority of the
programs were excluded because they failed toevaluate their interventions. Articles that had
the design of their programs but didn’t have theresults were additionally excluded.
While the lack of programs that met the inclusion

criteria is disappointing in the context of thisreview, it is indicative of a greater problem—thefailure of dementia program practitioners to evaluate their work, or to report the results of theirevaluations.
Below, selected programs are divided among ourthree target audiences—the general public, caregivers, and healthcare professionals (HCPs).

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D. FINDINGSARTICLE INFOOBJECTIVE AND KEY FINDINGSThe effectiveness of
Small-group Communitybased Information
Sessions on Clinical
Trial Recruitment for
Secondary Preventionof Alzheimer’s Disease

Objective

ARTICLE INFOOBJECTIVE AND KEY FINDINGSIs large-scale community
memory screening
feasible? Experiencefrom a regional memoryscreening day

Objective

Lawrence, D.A. et al.,2003

Key Findings

Findings from the
National Memory
Screening Day Program

Objective

Key Findings
Small group sessions are an effective way to efficiently screen patients andincrease the probability that people will engage in and understand theimportance of Alzheimer’s research.

Objective

Wray, L.O. et al.,2013

Active screening for patients who are at risk of dementia may be effective.

Suzuki, T. et al.,2007

D. FINDINGS

To recruit patients for the NIH-sponsored Anti-amyloid treatment in
Asymptomatic Alzheimer’s Disease (A4), a small information session was
conducted and its effects were evaluated.

A Program to Improve
Detection of Undiagnosed
Dementia in Primary Careand Its association with
Healthcare Utilization

New Approach for
the Early Detection of
Dementia by Recording
In-House Activities

REVIEW OF EVIDENCE 2

EARLY DETECTION AND DIAGNOSIS PROGRAMS FOR THE
GENERAL PUBLIC AND (POTENTIAL) PATIENTSEARLY DETECTION AND DIAGNOSIS PROGRAMS FOR THE
GENERAL PUBLIC AND (POTENTIAL) PATIENTS

Tarrant, S.H. et al.,
2016

III

Bayley, P.J. et al.,2015

The aim was to improve the health outcomes of dementia patients throughearly detection and by improving the quality of primary care clinics.

To assess if the “Mimamori sensor” could assist in early detection ofdementia. The sensor records lifestyle variables, including the number oftimes a patient left their home, the patient’s amount of sleep, the numberof times the patient’s sleep was disrupted, and the patient’s sleep rhythm.

Conducting screening outside of healthcare facilities may increase thelikelihood that some (potential) patients get diagnosed. Community
screening programs have been widely implemented for psychiatric disorders related to depression, alcoholism, and anxiety; this study’s results
suggest the potential for extending this approach to detect dementia.

To report the results from a national memory screening program thattargeted older people living in communities.
Key Findings
Supports the evidence that people with less education are more vulnerable to decline in cognitive function. Demonstrates the feasibility of
conducting community screenings to detect dementia early.

Key Findings

Objective

To evaluate if a large-scale memory screening program is effective in
detecting older people who are at risk of dementia and consequently
would need a follow-up assessment.

An evaluation study ofa dementia screening
program in Taiwan: anapplication of the theoryof planned behaviors

Objective

Yang, J.S. et al.,
2011

A good example of developing and implementing a mass media campaign.

To report the results of a screening program based on the theory ofplanned behavior conducted in Taiwan.
Key Findings

Key Findings
Digital phenotyping using noninvasive sensors could potentially be usedin the early detection of deterioration among patients who are at high riskfor dementia.

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D. FINDINGSIIIREVIEW OF EVIDENCE 2
D. FINDINGSPREVENTION AND INTERVENTION AMONG (POTENTIAL) PATIENTSCAREGIVERS

ARTICLE INFOOBJECTIVE AND KEY FINDINGSARTICLE INFOOBJECTIVE AND KEY FINDINGSThe effects of healtheducation on knowledge
about Alzheimer’s disease
and health-promoting
behaviors of older Chinese
adults in a nursing
home: A pilot study

Objective

Clinical effectivenessof a manual based
coping strategy program(START, STrAtegies for
RelaTives) in promoting
the mental health ofcaregivers of family
members with dementia:
pragmatic randomized
controlled trial

Objective

Du, L. and Hu, J.
2016

This pilot study educated elderly nursing home residents in Wuhan,
China on Alzheimer’s disease and lifestyles that would lead to better
health outcomes.
Key Findings
The study led to the development of a scale that could be used to makecomparisons regarding dementia knowledge internationally.

Key Findings
In order to reduce the caregiver’s mental health challenges, manual-based
copying strategy is effective.

Livingston, G. et al.
2013

WELLBEING INTERVENTIONARTICLE INFOThe aim of this study was to evaluate if manual-based coping strategy
programs for family members of dementia patients could improve theirmental health.

OBJECTIVE AND KEY FINDINGSHEALTHCARE PROFESSIONALS

Promoting Health in
Early-Stage Dementia
L.L. Buettner and S.
Fitzsimmons2009

Objective
The aim of this study was to provide early-stage dementia patients with a
12-week health promotion course and to subsequently evaluate the effectiveness of the course.
Key Findings
Demonstrates the potential effectiveness of education in early-stage
dementia patients.

DISSEMINATION OF INFORMATIONARTICLE INFOOBJECTIVE AND KEY FINDINGSThe effects of exposure toscenarios about dementia
on stigma and attitudes
toward dementia care ina Chinese community

Objective

Chemg, S.
2011

Key Findings

58 | SOCIAL MEDICINE FOR DEMENTIA

The aim of this study was to determine if people’s stigmatizing attitudes
and reactions to dementia diagnosis change after they are exposed to
information related to stigma.

This was the first study to observe the relationship between exposure to
information on dementia and reduction of stigma. It additionally identified factors that are related to reducing stigma.

ARTICLE INFOOBJECTIVE AND KEY FINDINGSThe development
and evaluation of an
educational intervention
for primary carepromoting person-centeredresponses to dementia

Objective

Edwards, S.E. et al
2015

Key Findings

Effectiveness ofeducational interventionsin improving detection
and management ofdementia in primarycare: cluster randomized
controlled study

Objective

Downs, S. et al
2006

Early dementia diagnosis by primary care providers is important, but
few primary care providers screened for dementia. This study aimed tochange the manner in which primary care providers interact with patients
who are experiencing cognitive declines.

An educational program in a primary care setting may be effective.

The aim of this study was to determine if an education intervention
significantly improved physicians’ diagnosis and management of dementia in primary care settings.
Key Findings
Decision-making support tool software and practice-based workshops
are effective in improving primary care diagnosis of dementia.

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E. APPENDIX(SUMMARY OF STUDIES)EARLY DETECTION/DIAGNOSIS PROGRAMS FOR THE GENERAL
PUBLIC, PATIENTS AND POTENTIAL PATIENTSARTICLE INFOCONTENTThe effectiveness of small
group community-based
information sessions on
clinical trial recruitment
for secondary preventionof Alzheimer’s disease

PurposeUSA, 2016

MethodReference Information:

First, the University of Kentucky public relations and marketing departments in conjunction with the researchers of this paper promoted thesession through local television channels, radio stations, and newspapers. After that, telephone interviews were conducted to screen participants, which resulted in 127 participants for the session. 112 of the participants were part of the small group session (each group consisted of 12
participants) and the rest of the participants—15 of them—were part ofthe one-on-one session.

S.D. Tarrant, S.H. Bardach, etal. (2016). The effectiveness of
Small-group Community-based
Information Sessions on Clinical Trial
Recruitment for Secondary Preventionof Alzheimer’s Disease. Alzheimer
Dis Assoc Disord. Vol00. (00).

A small information session was conducted to recruit patients for the
NIH-sponsored Anti-amyloid treatment in Asymptomatic Alzheimer’s
Disease (A4). The effects of this session on screening and patient outcomes
were evaluated.

Results
The evaluation indicated that the small group session is an effective way togather participants for screening, reducing the one-on-one time requiredfor gaining consent. The small group session has helped people understand the significance of participating in Alzheimer’s screening research,has given people more confidence taking part in it, and has ultimately
increased the probability that people will participate in this study.
Selected Limitation•

Generalizability of approach to other settings is uncertain•

This study doesn’t tell us what should be the optimal number ofpeople in each small group

Key Lesson
Group Dynamic Theory may be helpful to develop these kinds of programs

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REVIEW OF EVIDENCE 2
E. APPENDIX(CONT’D) EARLY DETECTION/DIAGNOSIS PROGRAMS FOR THE
GENERAL PUBLIC, PATIENTS AND POTENTIAL PATIENTSARTICLE INFOCONTENTA program to improvedetection of undiagnosed
dementia in primary careand its association withhealthcare utilization

PurposeUSA, 2014
Reference Information:
L.O. Wray, M. Wade, et al. (2014).
A Program to Improve Detectionof Undiagnosed Dementia in
Primary Care and Its association
with Healthcare Utilization. Am J
Geriatr Pyschiatry. Vol22. (11).

Few veterans who have dementia utilize primary care clinics. Even when
primary care clinics could offer them adequate care, they choose to use
inpatient services, causing problems in healthcare utilization. Based onrisk factors available from electronic medical records, telephone-based
cognitive screenings were conducted. The aim was to improve thehealth outcomes of dementia patients by detecting dementia, including
Alzheimer’s disease, early in its stages, and by improving the quality ofprimary care clinics.
MethodWithin the two years of the study, 5333 veterans who were 70 years orolder made appointments to see their primary care provider. A standard toevaluate if a person was diagnosed with dementia or not was established.
The program selected people who were at risk for dementia based on thepatient’s disease history and treatment history in the electronic medical
record. These people underwent a simple telephone-based dementia
screening (The Blessed Orientation Memory and Concentration [BOMC]).
People who tested positive were followed up by phone or reassessed,
and were introduced to a primary care physician. Subsequently, consent
was gained from both the patient and the physician for the patient to bereferred to a specialist.
Results
People who were at risk of dementia were placed in either the group thatwas screened or the group that was not screened, and the rates of early
detection were compared. This program helped increase the rate of early
detection.
Selected Limitation•

Is the intervention generalizable to non-veteran populations?

•

Unsure of the differences in skills of the healthcare professionals andstaffs•Unclear if knowledge before the intervention affected patient
health-seeking behavior in this study

Key Lesson
Active screening for patients who are at risk of dementia may be effective.

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E. APPENDIXIII

REVIEW OF EVIDENCE 2
E. APPENDIX(CONT’D) EARLY DETECTION/DIAGNOSIS PROGRAMS FOR THE
GENERAL PUBLIC, PATIENTS AND POTENTIAL PATIENTS(CONT’D) EARLY DETECTION/DIAGNOSIS PROGRAMS FOR THE
GENERAL PUBLIC, PATIENTS AND POTENTIAL PATIENTSARTICLE INFOCONTENTARTICLE INFOCONTENTA new approach forthe early detection
dementia by recording
in-house activities

PurposeIs large-scale community
memory screening
feasible? Experiencefrom a regional memoryscreening day

PurposeUSA, 2003

MethodReference Information:

A total of 659 people took part in the program. There were 497 people who
were screened on the day of the event and 162 people who were screened
at a later date. On the screening day, physician volunteers who received
training assessed 497 people from one of 10 regions in the New Englandarea. Participants who couldn’t make it to the event received screening
the following month at locations that provided this service.

Japan, 2007
Reference Information:
T. Suzuki, S. Murase, et al. (2007).
New Approach for the Early
Detection Dementia by Recording
In-House Activities. Telemedicine
and e-Health. Vol13. (1).

People with dementia often have difficulty sleeping and/or experience a
decline in their physical activity. To assess if “Mimamori sensor” (a sensor
developed by Matsushita Electronics)—which records an older person’s
lifestyle (including the number of times left the house, the amount of
sleep, the number of times sleep was disrupted, and the sleep rhythm)—could assist in early detection of dementia.
MethodThe sensors were distributed to 14 elderly people (67-90 years old) who
lived alone in Matsumoto City. After the intervention, the Mini Mental
State Examination (MMSE) was conducted to assess cognitive function.
Additionally, in order to validate results, participants were surveyed how
many times they left the house and how many hours they slept.
Results
The frequency of leaving the house and the hours of sleep could potentially be early indicators of dementia. People who had a decline in cognitive
function (MMSE<24) ventured outside less and slept less compared topeople who scored higher on the MMSE. Additionally, monitoring of life
by using passive infrared sensors appears to be and efficient method todetect and assess dementia.
Limitation•

Small number of participants•

Potential cost of the sensors

Key Lesson
Digital phenotyping using non-invasive sensors could potentially be usedin the early detection of deterioration among patients who are at high riskfor dementia.

62 | SOCIAL MEDICINE FOR DEMENTIA

J.M. Lawrence, D.A. Davidoff, et al.
(2003). Is large-scale community
memory screening feasible? Experiencefrom a regional memory-screening
day. J Am Geriatr Soc. Vol51. (8).

To evaluate if a large-scale memory screening program is effective in
detecting older people who are at risk of dementia and consequently
would need follow-up assessment.

On screening day, participants were screened by a 7 minutes screen (7MS)
after a lecture they received. They were immediately notified of the resultof the screening and received follow-up information. Participants and thevolunteer physicians were surveyed for a year after the event.
Results
16.7% of the participants scored highly on the 7MS, and were recommended to see their primary care physician (PCP). Out of those people, 64%followed up and went to go see their PCP. 38% of the highly scored participants are currently being diagnosed. Out of those participants who wewere able to obtain follow-up data, 9% were diagnosed with Alzheimer’s
disease and 8% were able to confirm their diagnosis made prior to theevent.
Additionally, participants gave feedback that the lecture and education on
early detection given to them before the screening event was very helpful.
(CONT’D ON NEXT PAGE)

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E. APPENDIXIII

REVIEW OF EVIDENCE 2
E. APPENDIX(CONT’D) EARLY DETECTION/DIAGNOSIS PROGRAMS FOR THE
GENERAL PUBLIC, PATIENTS AND POTENTIAL PATIENTS(CONT’D) EARLY DETECTION/DIAGNOSIS PROGRAMS FOR THE
GENERAL PUBLIC, PATIENTS AND POTENTIAL PATIENTSARTICLE INFOCONTENTARTICLE INFOCONTENTIs large-scale community
memory screening
feasible? Experiencefrom a regional memoryscreening day

Limitation

Findings from the
National Memory
Screening Day Program

Purpose•Healthy volunteer bias—people attending events of this kind might belimited to those who are healthy•

7MS is not a screening tool specific for dementia so the sensitivity(lack of false negatives) is not clear

USA, 2003
Reference Information:
J.M. Lawrence, D.A. Davidoff, et al.
(2003). Is large-scale community
memory screening feasible? Experiencefrom a regional memory-screening
day. J Am Geriatr Soc. Vol51. (8).

Key Lesson•

A regional screening program could be effective for people who areunaware of their cognitive problems.

•

The significance of community screening (to screen at places otherthan healthcare facilities) is that potential patients may feel differently about participating in screening since they’re not being conductedat healthcare facilities or the primary care physicians may not beproactively screening patients. Community screening programs havebeen widely implemented for psychiatric disorders related to depression, alcoholism, and anxiety; this study’s results suggest the potential for extending this approach to detect dementia.

USA, 2015
Reference Information:
P.J. Bayley, J.Y. Kong, et al.
(2015). Findings from the National
Memory Screening Day Program.
J Am Geriatr Soc. Vol63. (2).

To report the results from a national memory screening program thattargeted older people living in communities.
MethodThe Alzheimer’s Foundation of America sponsored this program in various U.S. communities. 2,334 communities participated and a total of
60,000 people were screened. Data was received from 48 communities
that agreed to share their records. Out of 4,369 participants, data of 3,064
individuals met the criteria and was further analyzed.
Participants were surveyed about their basic information at the event. Eachcommunity chose one of the seven screening tools (Mini-Cog, General
Practitioner Assessment of Cognition, Memory Impairment Screen,
Kokmen Short Test of Mental Status, Mini-Mental State Examination,
Montreal Cognitive Assessment, and Saint Luis University Mental Status
Examination) to use for their screening.
Results
11.7% of the participants failed the screening. Many participants who
failed tended to be older in age and received less education.
2,772 people – 74.5% of the participants – showed concern for their memory. Out of those who voiced their concern, 11.9% failed the screening.
The proportion of people who fails the screening was similar to the
proportion of American people with dementia.
Limitation•

Healthy volunteer bias•

The participation rate cannot be calculated since denominator data
were not available

Key Lesson

64 | SOCIAL MEDICINE FOR DEMENTIA•

Supports the evidence that people with less education are more
vulnerable to decline in cognitive function•

Demonstrates the feasibility of conducting community screenings todetect dementia early

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E. APPENDIXIII

REVIEW OF EVIDENCE 2
E. APPENDIX(CONT’D) EARLY DETECTION/DIAGNOSIS PROGRAMS FOR THE
GENERAL PUBLIC, PATIENTS AND POTENTIAL PATIENTSTHE FOLLOWING INTERVENTION IS ABOUT PREVENTION.

ARTICLE INFOCONTENTARTICLE INFOCONTENT

An evaluation study ofa dementia screening
program in Taiwan: anapplication of the theoryof planned behaviors

PurposeTo report the results of a screening program based on the Theory ofPlanned Behavior conducted in Taiwan.

The effects of healtheducation on knowledge
about Alzheimer’s disease
and health-promoting
behaviours of older
Chinese adults in a nursing
home: A pilot study

PurposeTaiwan, 2011
Reference Information:
P. Yang, J.S. Tang, et al. (2012).
An evaluation study of a dementia
screening program in Taiwan:
an application of the theory ofplanned behaviors. J Gerontol
Soc Work. Vol55. (7).

MethodTaiwan’s Catholic Foundation of Alzheimer’s Disease and Related
Dementia in Taiwan (CFAD) conducted the program, which included TV
commercials, print advertising, and press events involving celebrities;
distributing copies of the Short Portable Mental Status Questionnaire(SPMSQ); TV commercials and radio broadcasting on SPMSQ (January
2004-April 2004); CFAD directors and physicians promoting activities
on radio and in the community; and the Northern, Central, Southern
Taiwan Elderly Consultation Centers and related social service centersproviding information and discussion centers.

China, 2016
Reference Information:
L. Du and J. Hu. (2016). The effectsof health education on knowledge
about Alzheimer’s disease and healthpromoting behaviours of older Chinese
adults in a nursing home: A pilot
study. Int J Nurs Pract. Vol22. (1).

This pilot study educated elderly nursing home residents in Wuhan, China
on Alzheimer’s disease and lifestyles that would lead to better outcomes.
The effectiveness of the intervention was assessed.
Method35 elderly people (60 years or older) were recruited. As a group, they were
given a mid-level health lecture (5 weeks long, 30-40 minutes per session).
During the program, illustrated materials and videos were shown, and all
the participants received these things at every session and data collection.
Knowledge was measured before and after this intervention. Knowledge
was measured by Alzheimer’s Disease Knowledge Scale (ADKS). Healthhabits were measured by health-promoting lifestyle profile II.

During the 6-month study period, participants contacted the phone
number designated for SPMSQ screening. After receiving an explanationof the purpose of SPMSQ, participants were screened and the effectiveness of the screening was assessed. A phone follow-up was conducted.

Results

Results
333 people contacted the phone number, and 108 people were able tocomplete follow-up. The most common source of information was TV(62.3%). The most common reason to be screened was because theperson felt a decline in cognitive function (78.7%). The screening results
showed 21.9% of participants to have mild cognitive impairment, 1.4% tohave moderate cognitive impairment, and 2.7% to have severe cognitive
impairment.

Limitations

SPMSQ is an effective way to detect people who are thought to havedementia. Also, the screening program improved healthcare utilization.

Knowledge on dementia and health habits improved after the intervention. This study has shown that the intervention was effective in increasing scores of these two things.

•

Small sample size•

ADKS has not been evaluated for its reliability and accuracy yet in
China

•

Lack of a control group

Key Lesson
The study led to the development of a scale that could be used to makecomparisons of dementia knowledge internationally.

Limitations• Accuracy of SPMSQ (it is a screening tool and not a diagnostic tool)• Can the program be scaled up?
• Lack of a control group for evaluating this intervention
Key Lesson
A good example of carrying out a mass media campaign. Many uncertainties on the association between the program’s results and the logic model(based on theory).

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E. APPENDIXREVIEW OF EVIDENCE 2
E. APPENDIX

THE FOLLOWING INTERVENTION IS ABOUT WELL-BEING.

(CONT’D) THE FOLLOWING INTERVENTION IS ABOUT WELL-BEING.

ARTICLE INFOCONTENTARTICLE INFOCONTENT

Promoting health in earlystage dementia: evaluationof a 12-week course

PurposePromoting Health in
Early-Stage Dementia

Limitations

USA, 2009
Reference Information:
L.L. Buettner and S. Fitzsimmons.
(2009). Promoting Healthin Early-Stage Dementia:
evaluation of a 12-week course.
J Gerontol Nurs. Vol35. (3).

The aim of this study was to provide early stage dementia patients with a
12-week health promotion course and to subsequently evaluate the effectiveness of the course. Course effectiveness was evaluated by determining
if the patients had gained knowledge on health and if they were taking
health-promoting actions. Education materials and courses will be developed based on the results of this study.

•

Since it was not a randomized control trial, there are slight differences
between the groups at baseline•It’s not clear whether the findings of this study can be applied to thegeneral population since the participants were middle-income, white,and living in rural nursing homes.

•

Some participants were unavailable for follow-up, since theexperiment was conducted during hurricane season•

Since the effectiveness of the intervention was measured only in the
short term, its long-term durability is unknown.

USA, 2009
Reference Information:
L.L. Buettner and S. Fitzsimmons.
(2009). Promoting Healthin Early-Stage Dementia. J
Gerontol Nurs. Vol35. (3).

MethodParticipants were recruited from the Alzheimer’s Association branch
office, a clinic, and through newspaper ads in Florida. As part of thequasi-experimental design, there were three experimental groups and twocontrol groups. The experimental groups were given lectures, whereas thecontrol groups were given educational materials and told to maintain ahealthy lifestyle. No lectures were given to the control groups. The experimental groups received education from Phase 1 through 3. All participants, before and after the experiment, received the Mini-Mental State
Examination (MMSE) and tests that measure psychological well-being
such as the Geriatric Depression Scale (GDS).

Key Lesson
Demonstrates the potential effectiveness of education in early-stage
dementia patients.

Results
The difference between the experimental group’s MMSE and GDS before
and after the experiment were significantly different. The experimentalgroup showed improvement in their MMSE scores, whereas the control
group showed slight declines in their scores. Also, the experimental group
showed a decline in their depression symptoms, whereas the control
group showed an increase in their depression symptoms. For the othertests that measured psychological well-being, there were no significant
differences observed. The experimental group saw improvements in someof their health habits.
On the other hand, there were no changes seen in other aspects of well-being including self-efficacy, self-esteem, perceived stress, and perceived
quality of life. The study led to the development of a scale that could be
used make comparisons of dementia knowledge internationally.
(CONT’D ON NEXT PAGE)

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E. APPENDIXIII

REVIEW OF EVIDENCE 2
E. APPENDIX(CONT’D) THE FOLLOWING INTERVENTION IS ABOUT WELL-BEING.

CAREGIVERS

ARTICLE INFOCONTENTARTICLE INFOCONTENTThe effects of exposure toscenarios about dementia
on stigma and attitudes
toward dementia care ina Chinese community

Purpose

PurposeChina (Hong Kong), 2011

MethodReference Information:

504 people were recruited from a university, job-training school, andcommunity center in Hong Kong. Of those recruited, 494 individuals wereassigned to one of three groups. The groups consisted of a control group(group A) that just answered questions on stigma, an experimental group(group B) that read a story about an individual with dementia symptoms
before answering the questions, and a group that read a different versionof the story (group c) which indicated that the individual had recently
been diagnosed with dementia. Researchers evaluated the differences
between the group’s answers.

Clinical effectiveness ofa manual based coping
strategy programme(START, STrAtegies for
RelaTives) in promoting
the mental healthof carers of family
members with dementia:
pragmatic randomized
controlled trial

S. Cheng, L.C.W. Lam, et al.
(2011). The effects of exposure toscenarios about dementia on stigma
and attitudes toward dementia
care in a Chinese community.
Int Psychogeriatr. Vol23. (9).

The aim of this study was to determine if people’s stigmatizing attitudes
and reactions to dementia diagnosis changes after they are exposed to
information related to stigma.

Results
Regardless of whether the word “dementia” appeared in the story, people
exposed to information on dementia demonstrated a decrease in stigmatizing attitude (Group B, C > A). People who knew someone with dementia had a greater decrease in stigmatizing attitudes than those who didn’tknow anyone with dementia. Additionally, this same trend was observed
more in people who were younger, had higher levels of education, andthought that treating dementia was possible.
Limitations•

The long-term effectiveness of this intervention is unknown•

Limited generalizability

UK, 2013
Reference Information:
G. Livingston, J. Barber, et al. (2013).
Clinical effectiveness of a manual
based coping strategy programme(START, STrAtegies for RelaTives) inpromoting the mental health of carersof family members with dementia:
pragmatic randomized controlled
trial). BMJ. Vol347. (f6276).

The aim of this study was to evaluate if a manual-based coping strategy
program for family members of dementia patients could improve theirmental health.
MethodThree mental health community service centers in London were the main
locations for this randomized control trial.
The program involved psychology graduate students (who had notreceived clinical training) giving eight sessions to the caregivers. In thesesessions, caregivers learned about places to get emotional support todeal with stress, skills in managing behaviors, ways to deal with situations where nothing can be done, acceptance, proactive communication,
relaxation, future planning, tips to increase fun activities, and ways toretain these learned behaviors/skills. Using the manual and relaxationCD, caregivers practice these skills at home.
Participants included 260 caregivers of dementia patients. Affective
symptoms, depression, anxiety, quality of life between patient and caregiver, and the possibility of violent acts by the caregivers were measured.
Results
173 out of the 260 caregivers were divided into the experimental andcontrol groups (87 were in the experimental group). The program led to
improvements in affective symptoms, depression symptoms, and quality of life for caregivers. However, there was no association between the
program and the quality of life of patients. Caregivers in the experimental group reported experiencing fewer violent acts than caregivers in thecontrol group.
(CONT’D ON NEXT PAGE)

Key Lesson

70 | SOCIAL MEDICINE FOR DEMENTIA•First study to observe the relationship between exposure to information on dementia and reduction of stigma•

Found factors that are related to reducing stigma•

This study used a Japanese study on stigma as an example (Changes
in the perception of dementia in Japan [2009])

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REVIEW OF EVIDENCE 2
E. APPENDIXHEALTHCARE PROFESSIONALS (HCPs)

CAREGIVERS
ARTICLE INFOCONTENTARTICLE INFOCONTENT

Clinical effectiveness ofa manual based coping
strategy programme(START, STrAtegies for
RelaTives) in promoting
the mental healthof carers of family
members with dementia:
pragmatic randomized
controlled trial

Limitations

The development
and evaluation of an
educational intervention
for primary carepromoting person-centred
responses to dementia

PurposeUK, 2015

MethodReference Information:

An educational program for primary care staff (including physicians andother healthcare professionals) was developed and pilot tested. 94 staff
were assessed in terms of knowledge and attitude toward dementia before
and after the intervention. Data of the physicians and related staff wereanalyzed separately.

UK, 2013
Reference Information:
G. Livingston, J. Barber, et al. (2013).
Clinical effectiveness of a manual
based coping strategy programme(START, STrAtegies for RelaTives) inpromoting the mental health of carersof family members with dementia:
pragmatic randomized controlled
trial). BMJ. Vol347. (f6276).

•

Since the study only measured short-term effectiveness, the intervention’s long term effectiveness is still unknown (a follow-up study is
being conducted now)•

There is a possibility that this intervention is effective in reducing
violence among caregivers, but more research is needed.

Key Lesson
In order to reduce the caregiver’s mental health challenges, manual-based
copying strategy is effective.

R. Edwards, S.E. Voss, et al. (2015).
The development and evaluationof an educational intervention forprimary care promoting personcentred responses to dementia.
Dementia (London). Vol14. (4).

Early dementia diagnosis by primary care providers is important, but few
primary care providers screen for dementia. This study aimed to change
the manner in which primary care providers interact with patients whoare experiencing cognitive declines.

Results
The intervention improved knowledge and attitudes such as understanding of patient-centered dementia symptoms, attitudes toward early
detection, and recognition of dementia symptoms other than cognitive
symptoms.
Limitations•

Generalizability of results to other healthcare settings (i.e., healthcare
settings other than primary care)•

Since the main objective of this study was to develop a program, theimprovements observed in this study (knowledge and attitude) needfurther validation

Key Lesson
An educational program in a primary care setting may be effective.

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E. APPENDIXREVIEW OF EVIDENCE 2
E. APPENDIXHEALTHCARE PROFESSIONALS (HCPs)(CONT’D) HEALTHCARE PROFESSIONALS (HCPs)

ARTICLE INFOCONTENTARTICLE INFOCONTENT

Effectiveness ofeducational interventionsin improving detection
and management ofdementia in primarycare: cluster randomised
controlled study

PurposeEffectiveness ofeducational interventionsin improving detection
and management ofdementia in primarycare: cluster randomized
controlled study

Key Lesson

UK, 2006
Reference Information:
M. Downs, S. Turner, et al. (2006).
Effectiveness of educational
interventions in improving detection
and management of dementia inprimary care: cluster randomised
controlled study. BMJ. Vol332. (7543).

The aim of this study was to determine if an education intervention
significantly improved physicians’ diagnosis and management of dementia in the primary care setting.
MethodConducted a nonblinded cluster randomized trial. The experimentalso included a control group that was be assessed before and after theintervention.
Results
36 clinics took part in this study. The clinics were randomly assigned todifferent groups­—eight clinics were assigned a CD-ROM tutorial, eightclinics were assigned a decision-making support tool software, 10 clinics
were assigned a practice-based workshop, and 10 clinics were assigned tothe control group. Out of the 683 participants, 450 people who consented to sharing their medical records were analyzed. The results showedthat the decision-making support tool software and the practice-based
workshop were more effective in improving dementia diagnosis than thecontrol group.

Decision-making support tool software and practice-based workshops
are effective in improving the primary care diagnosis of dementia.
Details of the educational interventions:•Electronic tutorial (CD-ROM): case study (the focus was mainly on
difficult cases encountered in the clinical setting). It was like an electronic dictionary; physicians were able to access each different theme
which would help them solve the problem they were facing. The tutorial was hypertext linked so that readers were easily able to able seeother information in more detail•

Software: the existing medical record software was used to help
physicians obtain information related to dementia diagnosis andmanagement. Using an actual case, the software aided physicians inmaking a diagnosis based on clinical reasoning and in planning carefor diagnosed patients•

Practice-based workshop: an experienced general practitioner who
received further education after graduating medical school conducted small workshops for other general practitioners

UK, 2006
Reference Information:
M. Downs, S. Turner, et al. (2006).
Effectiveness of educational
interventions in improving detection
and management of dementia inprimary care: cluster randomized
controlled study. BMJ. Vol332. (7543).

Limitations•

There could have been other ongoing dementia-related activities inthose communities that may have influenced the results of this study•

Limited generalizability(CONT’D ON NEXT PAGE)

REFERENCES
1. Batsch NL, Mittelman MS. World Alzheimer Report 2012.
Overcoming the Stigma of Dementia Alzheimer’s Disease
International (ADI), London; 2012 Accessed May. 2015;5.
2. Bradford A, Upchurch C, Bass D, et al. Knowledge of
documented dementia diagnosis and treatment in veteransand their caregivers. American Journal of Alzheimer’s
Disease and Other Dementias. 2011;26(2):127-133.
3. Dubois B, Padovani A, Scheltens P, Rossi A, Dell’Agnello
G. Timely Diagnosis for Alzheimer’s Disease: A
Literature Review on Benefits and Challenges. Journalof Alzheimer’s Disease. 2015;49(3):617-631.

74 | SOCIAL MEDICINE FOR DEMENTIA

4. Bunn F, Goodman C, Sworn K, et al. Psychosocial
Factors That Shape Patient and Carer Experiences of
Dementia Diagnosis and Treatment: A Systematic
Review of Qualitative Studies. Plos Medicine. 2012;9(10).
5. Boise L, Camicioli R, Morgan DL, Rose JH, Congleton
L. Diagnosing dementia: perspectives of primary care
physicians. The Gerontologist. 1999;39(4):457-464.
6. Martin S, Kelly S, Khan A, et al. Attitudes andpreferences toward screening for dementia: a systematic
review of the literature. BMC Geriatrics. 2015;15:66.

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DR. KATSUNORIKONDOPROFESSOR, CENTER FOR PREVENTIVE MEDICALSCIENCES / GRADUATE SCHOOL OF MEDICINE,
HEAD OF THE DEPARTMENT OF GERONTOLOGICALEVALUATION, CHIBA UNIVERSITYCENTER FOR GERONTOLOGY AND SOCIAL SCIENCE (CGSS),NATIONAL CENTER FOR GERIATRICS AND GERONTOLOGY (NCGG)
DIRECTOR/VISITING PROFESSOR, CENTER FOR WELL-BEING
AND SOCIETY, NIHON FUKUSHI UNIVERSITY, AICHI, JAPANThe issue of dementia highlights thechallenges already faced by people intheir daily life, and with healthcare,social welfare, and ethics.

INTERVIEW

CREATION OF
DEMENTIA-FRIENDLY
COMMUNITIESWhat are the challenges
regarding the current situation
around dementia in Japan?
Dementia affects a wide range of issues. The
impact of dementia is not limited to individuals orfamilies, but also extends to society as a whole. Asan aging society, dementia is common in Japan,
yet many people and healthcare professionals still
struggle with how to provide the necessary careand support to dementia patients. It is therefore
essential to provide proper guidance to ensure
seamless support from prevention to care.
The issue of dementia highlights the challenges
already faced by people in their daily life, and withhealthcare, social welfare, and ethics. In terms of
day-to-day challenges, the lack of care and support
following the early detection of dementia can often
mean that patients and caretakers are isolated andforced to solve problems by themselves. It is possible for people to continue their normal lives evenafter being diagnosed with dementia, if they haveenough support and the resources that they need.
In terms of healthcare and social welfare, we needto consider how to support dementia patientsin their homes even after they develop physicalillnesses or disabilities that require nursing care.
From an ethical perspective, discussion is neededon a wide range of issues, such as when to end
terminal care and who should make that decision.
It is vital that society support dementia patientsto maintain their ways of life. That requires
caretakers and healthcare staff to know thepatient’s life before their dementia diagnosis.

A first consultation can take time for a new doctor.
Information from a family member or family
doctor can be of great help in the development ofan optimal care plan catering to the needs of eachpatient. With dementia, the relationship between
the patient and his/her family is key. It affects
the entire process of early detection, diagnosis,
care, and support. Cooperation from the family isvital. At the same time, dementia care should not
be seen only as a personal or family issue. Seeing
it that way can lead caretakers to feel overburdened, both physically and mentally. In order tohelp patients continue their ways of life after theirdementia diagnosis, patients and their families
should be supported by society as a whole throughintegrated community care, which should include
help with life support, medical care, and nursingcare.
As a social epidemiologist, you have been
conducting large-scale epidemiologicalstudies for more than 10 years focusing onolder people in Japan, and are currently
involved in a survey targeting 200,000
people. Could you please tell us about
your experiences with older populationsin terms of projects and research?
Although some people argue that health is a matterof self-responsibility, a person’s health status canbe heavily affected by environmental and life
circumstances, regardless of age. For instance,
when there are no bars or restaurants close towhere people live, they drink less. The likelihoodof after-work drinking can be influenced by other

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through a follow-up study conducted eight months
after the establishment of the salon. Around 30%of the participants reported positive changes, suchas “the activities helped me to make new friends”
or “I am feeling better and positive.” Our 5-year
follow-up study confirmed that the proportion
requiring nursing care had halved, and a 7-year
follow-up study showed that the people who
participated in the salon more than four times ina year saw a 30% reduction in the onset of dementia, compared to those who did not participate orparticipated less, even after adjusting for gender,
education level, the existence of physical illness,and general health conditions. These results
suggested that the provision of a gathering place
can contribute to healthy longevity.

factors, such as the presence of bars along one’sroute home, as well as their relationship with theircolleagues.
As part of our research, we opened a “salon” in
Taketoyo26 Town in Aichi Prefecture with the goalof providing preventive care for older people.
We believed that by providing spaces where
people could gather and enjoy hobbies or physical activities, we could facilitate social participation among senior citizens. In the long term, thiswould contribute to the prevention of illness anddisabilities, including dementia. There has beensome research published suggesting that social
participation and interactions can prevent thedeterioration of cognitive functions among older
adults. However, this requires venues and opportunities for social gathering. The salon was opened
to increase opportunities for people to gather. We
examined whether community-based social interactions were associated with a decreased rate ofpeople requiring nursing care or a decreased riskof dementia.
At the salon, various programs are offered, including light exercises, discussion sessions, board
game sessions, and times when people can interact with children. Our hypothesis was confirmed

78 | SOCIAL MEDICINE FOR DEMENTIA

When dementia is considered simply as a biological illness, there is a tendency to think that itshould be treated using biomedical measures.
However, dementia is also caused by psychosocial
factors. Our research results showed that, outsideof medical approaches, psychosocial interventions
can also treat dementia effectively. Older people
often find themselves leading isolated lives. By
providing them with a place where they can talkto and interact with people and become involvedin activities, we can promote better health. Our
salons allow people to enjoy themselves, help toprevent depression, and stimulate physical andcognitive functions.

INTERVIEW

One possible solution would be to explore activities that place a focus on things like enjoyment,
liveliness, and laughter. In our project, there werepeople who only showed interest when we invited them to do “something fun or interesting.”
Participants in these sessions included people
from among the non-health conscious group.
While it is fine for organizers to develop programs
focused on health, health does not have to be theprimary objective for participants. Enjoyment
can come first. Health will follow as a result of
the activities. It is important not to impose healthas a main goal. We should always consider whatmight be the motivating factors for participants.
I suppose that if we create a society where people
can enjoy and enhance their quality of lives themselves, we will see prolonged healthy longevity.
This would be a good strategy for preventing
dementia, as well.
In fact, our Taketoyo salon had many participants
who were not health conscious and never participated in preventive classes. This was remarkablein the context of dementia countermeasures inJapan, as Japan’s traditional preventive services
have primarily targeted populations facing a higher
risk of requiring nursing care.27 For dementia, the“high-risk population” refers to people with mild
cognitive impairment. Because they have a higher
risk of dementia, the typical strategy is to identify
this group and provide targeted interventions. The
Ministry of Health, Labour, and Welfare (MHLW)

identifies people with mild cognitive impairment
through a screening using a checklist, and theninvites the identified people to participate inpreventive classes. This strategy originally aimed
to have 5% of the older population participate inclasses, yet only 0.8% are participating.26,28,29
On the other hand, our Taketoyo salon drew people
in by emphasizing that “everyone is welcome thatcan come to the salon by themselves.” More than
20% of participants were actually from high-risk
groups. We think that we increased participation,
including from those in high-risk groups, by focusing on enjoyment as we planned activities.
In western countries such as the United States
and United Kingdom, the mean age at the onset ofdementia has decreased by around 20% every 10
years.30,31 We cannot find a biomedical or genetic
reason to explain this rapid reduction, which ishappening despite the absence of medicine thatcan prevent or cure dementia. As a social epidemiologist, I believe that this reduction reveals theimportance of psychosocial and environmental
factors in the onset of dementia. The extensionof retirement ages and creation of systems thatenable senior citizens to enjoy and continuesocial interactions through hobbies, sports, andvolunteer work can help people to maintain active
cognitive, physical, and social lives. The provisionof this kind of enabling environment is crucial tosuccess.

Many local governments are trying
to promote activities for older
people, but some face difficulties inrecruiting participants. What are
the keys to planning a successfulprogram for health promotion?
People tend to think that health is a primaryconcern for everyone, but some are less concerned
about their health than others. If health is theprimary objective of a program, that program will
only reach health conscious people. Most local
governments experience difficulties in delivering
preventive services to people who have no interestin such activities. What can we do to reach suchpeople?

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people. There has been a lot of research suggesting
The social
the positive influence of continued social interactions on human brain functions.
environment is
For example, we analyzed municipal data on nursconsidered to be a
ing care needs assessments, and results showedthat there are cities with high versus low incidence
critical factor for
rates of dementia. According to the data, depending on the lifestyle and community environment,
dementia… These include the risk of developing dementia could be as muchas four times higher in one group than another.
social participation and Among the 20 cities that participated in our study,
and Nagoya had the lowest prevalence
connection with people. Taketoyo
of dementia.
We are in the process of analyzing the reason
There has been a lot of
behind the differences in dementia rates between
cities. One possible explanation for this relates
research suggesting
to depression, which is one of the risk factors fordementia. Cities with a high prevalence of depresthe positive influencesion tend to also have a high proportion of peopleof continued social
with deteriorated cognitive functions. On theother hand, it is reported that communities withinteractions on humanincreased opportunities for social participationand networking had a lower prevalence of depresbrain functions.
sion. This is just one aspect of the issue. The point
32

Social epidemiology focuses on
how environmental factors impact
health. Please tell us about theimportance of environmental
factors in dementia studies.
The social environment is considered to be a
critical factor for dementia, as I mentioned when
explaining the Taketoyo Project. Social epidemiology examines the impact of social factors on
health and illness, with the aim of contributing
to disease prevention and health promotion. We
tend to focus on “hard” aspects of the environment such as workplaces, schools, and housing,but “soft” aspects of the environment are actually particularly important with dementia. These
include social participation and connections with80 | SOCIAL MEDICINE FOR DEMENTIA

is, social environment and lifestyle are thought
to be associated with the onset of dementia. We
will continue our in-depth analyses and share theresults with the society.

An observational research study using large
amounts of data revealed that residents of cities
with enhanced opportunities for social participation reported better health. However, this researchalone is not sufficient for our purpose, as it did notshow if it was possible to increase social participation, and what the effect of increased participation would be on health. To examine this, weneed more intervention studies like the Taketoyo
Project, which can verify if it is possible forpeople to increase the level of social participationand support they experience, and whether suchincreases are associated with improved health.

INTERVIEW

Your research team is collaboratingwith local government authorities
and is working to connect thetheories of academia with real-worldpractices. Could you tell us about
any future activities and projects?
We are currently in the process of developing amanagement support system for a national scaleup of the Taketoyo Project. The first order ofbusiness is to examine the current status of each
community, based on the data, and to identify
key agenda points and priority communities. This
information is used to support information sharing among relevant stakeholders. Our next goal
is to establish a system to design and implement
necessary interventions based on social epidemiological evidence, and monitor and evaluate theimpact of our program. We are also developing
technical tools and protocols to make the systemuser-friendly for local government officials.
We have already developed a “community healthdiagnosis tool” through which the health status ofeach community can be visualized. As the government emphasizes fairness and equity, the current
system uses a uniform intervention across every
administrative area. The community diagnostics
tool visualizes health inequalities among municipalities and identifies priority areas that needfocused interventions. There are residents andpublic health nurses who know from their experience that there are unhealthy people in particularareas. In order to influence health policies andgovernmental interventions, however, we needobjective data, and we need to share information.
Visualizations can help residents, professionals,
and the government understand the status andneeds of each community better and take appropriate actions. It is critical that access to data is
not kept to a group of researchers. It must be
shared widely with other stakeholders, so thatpeople can start to see these issues as being theirown problems. This can help people to think ofhealth inequalities in their communities as an
issue of great importance. This, in turn, creates anenvironment in which residents can take action to
improve their own communities.

We are also developing a tool to measure theimpact of interventions, including the salon project. We will conduct an analysis comparing thehealth status of people who do and do not participate in activities at salons in various cities. In asmall town like Taketoyo, where the populationis less than 50,000, it was relatively easy to gain
stakeholder agreement. We plan to investigate
whether the salon approach can work in bigger
cities, and develop a model for urban areas. This isparticularly needed now that the older population
is expected to increase in urban areas. We plan
to create a systematic, collective tool to support
the PDCA (Plan-Do-Check-Action) management
cycle. Moving forward, we will customize tools to
the needs of each community and provide necessary management support for them.
What kinds of research projects are
currently underway in urban areas?
One is a joint research project with Kobe City.
We conducted a “community diagnosis” to see
the health status of each community in the city.
There were areas with a high prevalence of isolation or a high proportion of older people requiring
nursing care. We focused on one of the areas andassessed residential maps. This revealed a lack ofpublic facilities, such as community centers andother places where residents can gather. The lackof public facilities might be one of the contributing
factors behind the high prevalence of the isolation.
We tried to find a place for gathering and found a
drugstore. They happily accepted our request forcooperation and allowed us to use a free space infront of the prescription room for salon activities.
While we mainly collaborated with public facilities and local volunteers for the Taketoyo Projectin urban spaces like Kobe City, we aim to gain
support from private companies that can offer
their spaces, services, and products for our efforts.
One of the strengths of urban cities is that there
are many such corporations available. Anotheradvantage is the availability of healthcare professionals. Our project in Kobe City had physiotherapists to provide exercise classes to the residents.

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larger scale and offer diverse opportunities. We
will investigate and explore an effective way torealize a society of healthy longevity while utilizing the resources of urban areas.
What must society do to fully
support dementia patients?

In addition to that, Chiba University and Matsudo
City have started a new project through a joint
research agreement that will focus on preventive
services in Matsudo City in Chiba Prefecture.33
This project focuses on an “urban model” forpreventive services, which aims to increase thehealthy life expectancy of participants. Two
unique features and resources are of note whentalking about the urban model—one is the involvement of post-retirement senior citizens, and theother is collaboration with private companies andagencies.
One of the advantages of urban areas is the vast
amount of human resources, including seniorcitizens, who have management experience andspecialized skills, as well as a will to offer thoseskills to society as volunteers. When we recruited
senior volunteers in Matsudo City as part of thisproject, we received more than 500 applications—far exceeding our expectations. In order to provide
a salon within walking distance of everyone, it isestimated that 500 salons would be needed in
Matsudo City. If we were to manage such highnumbers, not all of the salons would work out well.
On the other hand, if we consider each salon as abranch, an efficient solution would be to strengthen headquarters functions (planning, marketing,82 | SOCIAL MEDICINE FOR DEMENTIA

human resources, accounting, and so on) andmake sure that each salon branch has the support
it needs for the project launch, volunteer training,and strategy planning. With this in mind, we plan
to have senior volunteers with management experience to support the establishment of a head officeand to help with its operation. We aim to establish
a new urban model for our super-aging society bycreating a new outlet for senior professionals whowant to play an active role in their communities.
Furthermore, we plan to have private companies
on board to provide technical assistance related
to information and communication technology(ICT). This is another strength of urban areas, aswell as pro bono participation from technical staff.
Pro bono activity refers to people utilizing theirprofessional experiences and technical expertisefor volunteer work. We need to create a supportive
environment for private companies and help themto value these activities so that they will send theiremployees to participate. For a private company,
the creation of a business model and a national-level scale-up to 1700 municipalities might be
an attractive business opportunity. In this way, we
see urban projects such as the ones in Kobe andMatsudo as presenting a different potential fromthe Taketoyo Project, as they are being done on a

Japan’s life expectancy continues to rise. Morethan half of the children born in 2007 are expected to reach the age of 107 years.34 The number ofdementia patients is also projected to increase.
Dementia issues are no longer a problem of individuals and must be addressed by society as awhole. Currently, some dementia patients andtheir families may feel excluded from society. Ifsociety accepts them, they will be able to maintaintheir quality of life, even if they cannot recover their
cognitive functions. The issue of social acceptanceis much like marriage these days—being single isjust another life choice, and increasingly, there
are services that target single people, making life
much easier for them.
Social environment plays a vital role in improving the quality of life. “Social capital” refers
to the strength of the levels of social bonds or

The key is not
to leave the issue toindividuals, but rather
accelerate the creationof ‘dementia-friendly
communities,’ wheredementia patients cancontinue their wayof life and whatever
they want to do.

connections between people in a community.
In a community where social capital is strong, awandering patient will be taken care of by people
in the neighborhood. I have heard of one case of
a dementia patient living in a shopping street,where his neighbors care for him and guide him
in a way that his family can feel assured he is safe.
Ideally, communities should provide care fordementia patients, and see the problem of dementia as one to be addressed by the community, notleft to individuals.
In addition to that, healthcare professionals needto redefine their roles. When healthcare providers see the provision of a cure or treatment as
their primary role, they may be tempted to wait
for remedies. However, healthcare providers
can do more than that. They can provide a wide
range of support, including listening to patients,
connecting them to local resources and services,and providing assistance to families of patientsin order to improve their relationships. It would
also be helpful if job opportunities could be created for young dementia patients to improve their
quality of life. We are facing a new stage in oursociety, and so there is an opportunity for the roleof healthcare professionals to be redefined. By
revising our roles, it will be possible to find new
approaches and opportunities.
What is important for stakeholders,
including the national government,
local government authorities,
private companies, NPOs, medical
doctors, and community members
to consider related to dementia?
In the United Kingdom, a Dementia-Friendly
Community has been actively developed.35 In
Japan, the AEON group has incorporated services
for dementia patients as part of their staff training.36 Because a certain proportion of theircustomers are dementia patients, they decided to
become a dementia-friendly store and equip theirstaff to better provide the necessary support forthem, rather than excluding dementia patients.
If we had more shops like this, we could create

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a community where dementia patients could
continue to enjoy shopping for what they need inspite of their condition.

responsibilities and makes a concerted effort toinvolve community members and volunteers, notonly families and healthcare professionals.

Our research group is currently in the process ofdeveloping indicators to measure the extent towhich a community is a “dementia-friendly” or“dementia-preventive” community. In principle,
most people agree that we need to create dementia-friendly communities, but in practice, “how”
is often a problem. We need to create a properscale by which to measure progress. Measurable
indicators may include awareness, the proportionof people who know where to seek assistance, theavailability of peer counseling and social support,
the availability of opportunities for social interactions for patients and families, and so on. We aretrying to develop a set of measurable indicatorsthat can be used for progress management when
undertaking urban and town planning, as well.

For example, listening to a dementia patient tell
the same story repeatedly may be stressful if acaretaker is alone. But if the patient is cared for bymultiple people or has opportunities to meet new
people at a dementia café and so on, the patient
will likely have multiple opportunities to tell thestory and people will happily listen to them. Caring
for a family member is often stressful. Caretakers
often blame themselves for any issues. If caretakers have the opportunity to share their feelings
with people from other families, they might feelreassured, and can learn practical tips for coping.

Since there is currently no cure for dementia,
some believe that early detection can only resultin early despair. However, even though there are
no radical cures available, there are options. One
is prevention, and the other is rehabilitation to
improve a patient’s condition. Based on my experience in the field of social epidemiology, preventive
medicine, and rehabilitation, I think it is critical tocreate an ecosystem where the community shares

The key is not to leave the issue to individuals,
but rather accelerate the creation of “dementiafriendly communities,” where dementia patientscan continue their way of life and whatever theywant to do. Given the extent to which our society
is aging, the likelihood of suffering from dementia is high. This includes ourselves and membersof our families. Every stakeholder has different
strengths, weaknesses, and interests. We willcontinue to work on trying to integrate them todevelop a collaborative approach to the creationof a dementia-friendly society.

INTERVIEWPROFILE: KATSUNORI KONDO, MD, PhD
After graduating from the School of Medicine at Chiba University, Dr.
Kondo worked as a resident at the Rehabilitation Center at the Universityof Tokyo Hospital, and then as Director of the Department of Rehabilitation
Medicine at Funabashi Futawa Hospital. He became an Associate Professor
at Nihon Fukushi University in Aichi in 1997. Following his experience inpositions as a Visiting Researcher Fellow at the University of Kent (2000
to 2001), as well as a Professor at Nihon Fukushi University, in April 2014,
Dr. Kondo took up the position of Professor for the Center for Preventive Medical Sciences, Chiba
University. Since April 2016, he has served as Head of the Department of Gerontological Evaluation
at the National Center for Geriatrics and Gerontology (NCGG). His publication, “The Health Gap
Society—What is Undermining Mental Health and Society?” (Igaku-shoin, 2005), obtained an award
by the Society for the Study of Social Policy. Dr. Kondo has published a number of books, including
Prescriptions for the Health Gap Society (Igaku-shoin, 2017). Dr. Kondo is the lead researcher for theJapan Gerontological Evaluation Study, which is a large-scale study targeting 200,000 older people(JAGES https://www.jages.net/).

REFERENCES
26. Taketoyo refers to a project conducted in Taketoyo town
in Aichi Prefecture. The Taketoyo Project is a communitybased intervention study focusing on social capital(http://www.mhlw.go.jp/stf/shingi/2r98520000011w0latt/2r98520000011w95.pdf) and the provision of
preventive care to the older population using a
population-based strategy (a strategy that targets thegeneral population, regardless of risk levels [eg, cigarettetaxes], as opposed to targeted strategy). Dr. Kondo was
the lead researcher of the Japan
Gerontological Evaluation Study:
https://www.jages.net/project/kainyu/taketoyo/).
27. Ministry of Health, Labour and Welfare. Guidelines
for the prevention of and support for dementia.
March 2009 (revised):
http://www.mhlw.go.jp/topics/2009/05/
dl/tp0501-1h_0001.pdf.
28. Ministry of Health, Labour and Welfare.
Reference 2 from the 101st municipal seminar
held on January 17th, 2014: Future for the Preventive
Care: http://www.mhlw.go.jp/file/06-Seisakujouhou12600000-Seisakutoukatsukan/0000035938.pdf (p. 7).
29. Katsunori Kondo “Health and Social Service
Management—toward development of welfare society,”
3rd edition, Minerva-shobo, 2017 (Chapter 14)

84 | SOCIAL MEDICINE FOR DEMENTIA

30. Jagger C, Matthews FE, Wohland P, et al. A
comparison of health expectancies over two decades
in England: results of the Cognitive Function andAgeing Study I and II. The Lancet
2016;387(10020):779-86.
31. Satizabal CL, Beiser AS, Chouraki V, Chene G, Dufouil C,
Seshadri S. Incidence of dementia overthree decades in the Framingham Heart
Study. New England Journal of Medicine.
2016;374(6):523-32.
32. The Brain and Social Connectedness. “GCBH
Recommendation on Social Engagement andBrain Health Global Council on Brain Health”:
http://www.aarp.org/content/dam/aarp/health/brain_health/2017/02/gcbh-socialengagement-report.pdf.
33. The Urban Preventive Service Model—Matsudo
Project: (http://matsudo-project.com/).
34. Lynda Gratton and Andrew Scott. “Life Shift(original: The 100-Year Life),” Toyo Keizai, 2016.
35. Dementia-Friendly Community: People livingwith dementia actively involved in social activities
and services in their communities. Alzheimer’sSociety UK: https://www.alzheimers.org.uk/.
36. AEON Group press release. “Training course
for dementia supporters,” February 26, 2015:
http://www.aeon.info/news/2014_2/pdf/150226R_1.pdf.

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CASE STUDIES
1. Building Wellness ThroughSocial Connections
2. Japan’s Dementia Cafés
3. A Dementia-Friendly Library
4. The Mimamo Ota-ku
Elderly Care Network
5. Kizunaya: Resolving
Regional Problems The
Support Center for
Early-Onset Dementia
6. Run Tomorrow: Keywords
That Bring People Together
7. DAYS BLG!:Working While
Living With Dementia

CASE STUDIESBUILDING WELLNESSTHROUGH SOCIALCONNECTIONSTAKETOYO TOWN: IMPROVING COMMUNITY HEALTH
AND PREVENTING DEMENTIA THROUGH LOCAL“SALONS” THAT PUT COMMUNITY MEMBERS FIRST

Taketoyo Salons: A Relaxing
Environment for the Community
Taketoyo Salons are local gathering places forcommunity members in Taketoyo Town, established in 2007 to help people maintain their healthso they won’t need nursing care. Taketoyo Town issituated in Chita Peninsula in Aichi Prefecture. A
total of 23.9% of its population is currently over 65
years of age.37 The Salons work to prevent the needfor nursing care for independent elderly people
who either do not need nursing care, or only need
the minimum amount of care.38,39 It is the firstlocation for an elderly gathering place conceptthat is spreading to municipalities across Japan.
The Salons were jointly established by Taketoyo
Town and a research group led by Prof. Katsunori
Kondo, of Preventive Medicine Center of Chiba
University, in 2007.
As of 2017, there are 13 Salons in Taketoyo Town.
Each Salon holds its own activities once or twicea month. They vary widely, and include body andmind exercises, bingo competitions, artificial
flower making, interactive activities with children,and seasonal events. Activities promote healthand well-being, while encouraging participants tohave fun at the same time. The participation fee
per activity is just 100 yen per person. There are no
restrictions on the types of people who can participate, where they can participate, or how often they
can participate, as long as the participation fee is40

paid. As a result, many people attend activities atdifferent venues. One thing that makes the Salonsspecial is how local community members help
with activity preparations, Salon management,
and accounting. None of the Salons are directly
operated by the local government. Decisions on
business planning and events are made by local
volunteers, with the local government taking
on more of a support role to help publicize andfund the Salons. These are community-focused“bottom-up” business ventures. Another special
aspect of the Salons is how they coordinate withmultiple sectors of government, various stakeholders, and their local communities.
Making nursing care prevention moreenjoyable through community efforts
The aim of the Taketoyo Salons is to prevent theneed for caretaking. This is done through two
strategies. The “high-risk strategy” targets people
with mild cognitive impairment and those alreadyin need of caretaking. Meanwhile, the “population strategy” targets all elderly people, including healthy ones. Policies targeting the entire
elderly population are not common in Japan. The
Taketoyo Salons have proven very effective at thepromotion of elderly participation and community planning. The aim of the Salons is to improvehealth and well-being by creating communities
where people support each other. Evidence shows
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1.BUILDING WELLNESS THROUGH SOCIAL CONNECTIONS

planning activities, carrying them out, preparing
for activities, and accounting. Salon volunteers
come from Salon participants. Bonds are notjust being formed among community members,
but also between community members and local
governments. This can be seen in the way volunteers are fostered, and the support offered forplaces to meet and prepare for the Salons. In the
beginning, there were many different ideas about
volunteering and what activities should be like.
Many volunteers lacked experience in running
events. Despite that, the local government empowered community members to think freely andemphasized the importance of collaboration. As aresult, the first Salon was realized after countless
information sessions and workshops.

Participants enjoy having tea at a terrace outsidethat community participation and interaction
with others may help sustain normal brain andcognitive functions. The Taketoyo Salon concept
was created to test that idea.41
The first Taketoyo Salon was created thanks to aconnection between a member of Prof. Kondo’s
research group, who was working in Taketoyo,
and a local government employee. It took approximately a year to plan and set up the first Salon.
The organizers considered several similar projects created within Japan and abroad, and many
experts, such as occupational therapists, weighedin on the project. Currently, Salons are jointly
operated through local government and community member efforts. The government’s role is toconsider the general and long-term prospects for
the Salon and offer support and help with publicity. Community members are responsible for the
day-to-day operation of the town’s 13 Salons.
Healthy elderly volunteers take responsibility forMore than 100 people—far beyond expectations—joined the first Salon’s opening ceremony.42 On
average, only 10 to 20 people typically join thesekinds of activities in Japan. Taketoyo Salons havean unusually high rate of participation—64 people
join on average, with as many as 100 people ormore joining for certain activities. Even now,
seasonal events typically attract nearly 100 people.
On a yearly basis, a total of 12,000 people typically participate in activities.7 Approximately 10% of
these participants are senior citizens. This participation rate is 4.5 times higher than the average
participation rate in similar senior-operated projects.43 Professor Kondo explained that the reason
behind the astonishing participation rate may be
the way that Taketoyo Salons go beyond trying tooffer health promotion or dementia prevention
activities and focus on keeping things fun. “Forinstance, if we say that the goal is preventing
the need for caretaking—that is a goal related tohealth, which is something that everyone wants.
However, just by saying that we are doing something for health, a lot of people will not want toparticipate. Even people who aren’t interested inhealth will participate in an activity if it is fun. For
that reason, more than making the activities about
health or dementia prevention, I believe many
people are attending just because the activities are
fun.”

CASE STUDIES

1.BUILDING WELLNESS THROUGH SOCIAL CONNECTIONSVisible health improvements
The Taketoyo Salons have now been in operation
for ten years. Their accomplishments can be seen
on several fronts. The most observable achievement is the improvement in health among participants. During the first five years, the number ofpeople requiring a Nursing Care Requirement
Authorization44 dropped by 50%. In year seven,it became clear that if people participate in these
Salons more than four times a year, the likelihoodof seeing the onset of dementia symptoms fell by
30%, compared to those who did not participate
or participated less.45,46 Moreover, the prevalenceof high blood pressure in people who actively
participated in the Salon through volunteer activities declined by 6%, compared to those who did
not participate. If these patterns continue and thenumber of healthy elderly people increases, it isconceivable that local municipalities could evensee financial improvements, thanks to a reduction
in nursing and medical expenses in the future.
On a personal level, many people expressed that bytaking part in these Salons, they were able to makenew friends, felt happier, and found new meaningin life. Many elderly people, especially those who
participated as volunteers helping to operate theSalons, said that they felt they were able to prevent

their minds and bodies from deteriorating byplaying a greater role in society.47,48 This is also
backed up by data. Communities saw the emergence of leaders and a sense of ownership among
volunteers, who started to feel that they wanted
to do better and better at their jobs. Public healthnurses were able to get a grasp of the health statusof many community members all at once just byattending activities, which is something that was
highly praised by many participants.49 Throughthese Salons, stronger bonds were formed between
community members, community members came
together to hold frequent events, and communities as a whole became more invigorated.
Taketoyo Salons are a model for other towns.
Currently, Professor Kondo and his teams aremaking an effort to roll out the Taketoyo Salonmodel to bigger metropolitan cities, such as
Matsudo City in Chiba Prefecture and Kobe City.
One thing worthy of mention is that these Salonsserve as more than venues for activities—they also
help Professor Kondo and others obtain research
results that can be published in international
academic journals or used as data for further analyses. The quantification of the health impact of thisinitiative has inspired the national government totake action. The results of the Taketoyo Project
have been reported to the Advisory Council on

Participants exercise at a Salon (Taketoyo, Aichi)
88 | SOCIAL MEDICINE FOR DEMENTIA

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1.BUILDING WELLNESS THROUGH SOCIAL CONNECTIONSSocial Security of the Ministry of Health, Labour,and Welfare, and the creation of relaxing gathering places by making use of local volunteers has
become a pillar for national efforts to prevent the
public from needing caretaking.50 Salons are now
being opened across Japan.
One of the biggest lessons learned from theTaketoyo initiative is the importance of cooperation among people with different roles in society,such as community members, local municipalities, and researchers. Participation by community
members is crucial for health improvements in thecommunity as a whole. It is important to aim tocreate projects that are community-oriented andthat listen to community needs. Governments
should provide support for the entire process, frompreparations to the launch of activities, as well asvenues for the activities. By involving researchers,
it is possible to formulate programs that incorporate scientific expertise, and it becomes possible
to monitor results. It is expected that the Taketoyo
Salon model, which promotes healthy behaviors incommunities through cooperation from community members, local government, and researchers,
will be utilized throughout the healthcare field in
the future.

38. Community Support Projects: Projects undertaken
in municipalities promoting efforts to prevent theneed for long-term care before people require assistanceor nursing care, and strengthening comprehensive
and sustainable management functions in each region.
MHLW. Summary of Community Support Projects:
http://www.mhlw.go.jp/topics/npo/03/dl/07-06a.pdf.
39. Care Prevention: Efforts to prevent or delay the needfor long-term care as much as possible. Also includes
efforts to prevent and reduce the deterioration of
conditions among those requiring care. Includes
measures implemented by the national government.
MHLW. “Chapter 1, About nursing care prevention.”
http://www.mhlw.go.jp/topics/2009/05/
dl/tp0501-1_01.pdf.
40. Taketoyo Salon Overview:https://www.town.taketoyo.lg.jp/contents_detail.
php?co=cat&frmId=350&frmCd=5-5-4-0-0.
41. The Brain and Social Connectedness. “GCBH
Recommendation on Social Engagement andBrain Health Global Council on Brain Health.”
http://www.aarp.org/content/dam/aarp/health/brain_health/2017/02/gcbh-social-engagement-report.pdf.
42. Hiroshi Hirai. “The 1st Summary of the Taketoyo Project,
Community Rehabilitation vol. 4, no. 1, 2009:http://square.umin.ac.jp/ages/
materials/taketoyoproject1.pdf.
43. Miki Kobayashi. “Special Feature: Using a
Population Approach to Lead to Success—Salon
Promotes Smiles and Health.” Monthly Chiikihoken
47(1), 24-29, 2016-01 Tokyo Hokishuppan.
90 | SOCIAL MEDICINE FOR DEMENTIA

2. JAPAN’S
DEMENTIA CAFÉSCOMMUNITY CENTERS FOR PEOPLE LIVING WITH DEMENTIA

What are Dementia Cafés?

REFERENCES
37. Population Aging Rate: The proportion of people aged 65
or older out of the total population of Japan is 26% (asof Oct. 1, 2015). Cabinet Office “Annual Report on the Aging
Society: 2016.”
http://www8.cao.go.jp/kourei/
whitepaper/w-2016/zenbun/28pdf_index.html.

CASE STUDIES

44. Nursing Care Requirement Authorization: Thisauthorization evaluates whether or not a person
is experiencing a state of health that requires nursing
care or other assistance, which would qualify themto receive nursing care services through the nursing
insurance system. It also evaluates the severity of thesymptoms the person in question is experiencing.
MHLW. “Overview of the system related to Nursing
Care Requirement Authorizations.”
http://www.mhlw.go.jp/topics/kaigo/nintei/gaiyo1.html.
45. Hikichi H, Kondo K, Takeda T, Kawachi I. Social
Q1 interaction and cognitive decline: resultsof a 7-year community intervention. Alzheimer’s
Dementia Translational Research andClinical Interventions. 3, 23–32 (2016).
46. Yazawa A, et al. Association between social participationand hypertension among older people in Japan: the JAGES
Study. Hypertens Research. 1–7(2016). doi:10.1038/hr.2016.78,
47. Takagi D, Kondo K, Kawachi I. Social participationand mental health: Moderating effects of gender,social role and rurality. BMC Public Health. 2013.
Jul 31;13:701. doi: 10.1186/1471-2458-13-701.
48. Ishikawa Y, Kondo N, Kondo K, Saito T, Hayashi H,
Kawachi I, group J. Social participation and mortality: doessocial position in civic groups matter? BMC Public Health.
2016. May 12;16(1):394. doi: 10.1186/s12889-016-3082-1.
49. Hiroshi Hirai. “The 1st Summary of the Taketoyo Project,
Community Rehabilitation vol. 4, no. 1, 2009.”
http://square.umin.ac.jp/ages/
materials/taketoyoproject1.pdf
50. Yomi Doctor Katsunori Kondo. “(3 Social Capital—
Japan, a country rich in social connections.”
https://yomidr.yomiuri.co.jp/
article/20151116-OYTEW55323/.

Dementia Cafés are places where people livingwith dementia, their families, members of theircommunity, and dementia specialists can gather to share knowledge and experiences, taking
on many forms. According to one recent survey,
Dementia Café programs can be found in 722(41.5%) municipalities across Japan.51 These cafés
are managed by a variety of organizations, including social welfare companies, medical institutions,NPOs, government agencies, businesses, communities, and individuals. There are no standardized
requirements for establishing Dementia Cafés—some offer spaces for people to meet over coffee
and tea just once a month for two hours, whileothers are open twice a month, every other week,
or even every day. Venues are not limited to public
facilities, hospitals, and nursing care centers, butalso include restaurants, shopping malls, financial
institutions, and private homes.
The first Alzheimer Café was established in the
Netherlands, in 1997, by Dr. Bere Miesen, of Leiden
University.52 The underlying intent of that first café
was to create a space where people could meet in arelaxed atmosphere to talk freely about dementia,
which was considered a taboo topic at the time. In
Japan, the precursor to today’s Dementia Cafés
was The Monowasure café, opened by Dr. Naoki
Fujimoto in Shiga Prefecture, in 2004, as a gathering spot for people with early-onset dementia.53
In 2012, Dementia Cafés were commended as acontrete family support measure in the “Directionof Dementia Policy” document,54 published by
Japan’s Ministry of Health, Labour and Welfare.

These cafés were also mentioned under the“Caretaker Support” section in the New Orange
Plan (Comprehensive Strategy for the Promotionof Dementia Measures) published in 2015.55
Places to Relax for Everyone—From
People Living with Dementia Not
Yet Eligible for Nursing Care, toLocal Children and Older People
According to Soichiro Kosuga, a cameraman,
writer, and owner of the Dementia Café guide,“National Alzheimer Café Guide on the WEB,”
Dementia Cafés play a vital role in their communities in addition to the support they provide tocaretakers. They also support individuals withearly-onset dementia, Mild Cognitive Impairment(MCI),56 and early-onset dementia. In most cases,
the symptoms experienced by such people are notadvanced to the extent where they are eligible toreceive nursing care authorizations. In effect, they
are frequently excluded from initiatives such as
daytime nursing programs. Younger people withdementia or MCI may also feel uncomfortableusing the same services as older people living withdementia. For this marginalized subpopulation,
Dementia Cafés provide a place where they canfeel like they belong. Furthermore, in recent years,
more Dementia Cafés are dropping “Alzheimer’s”
from their name, and are beginning to function asrelaxation spaces that everyone from local children
to senior citizens can enjoy. As a result, Dementia
Cafés are beginning to function as regional
community centers where people can experiencenormalization57 as well as what it would be like to

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2. JAPAN’S DEMENTIA CAFÉSCASE STUDIES

3. A DEMENTIA-FRIENDLY
LIBRARYTOWARD A SOCIETY THAT UNDERSTANDS
AND ACCEPTS DEMENTIA

Mr. Akira Funada
Fun activity time at Dementia Café | Photo credit: Soichiro Kosuga

live in a barrier-free society, in which individuals
with and without dementia lead similar, normal
lives, with minimal or no discrimination.
Efforts to Create Places Where
People Can Live Worry-Free
Despite Developing Dementia
Dementia Cafés offer spaces where people withand without dementia can spend time together andinteract. These cafés help people who are livingwith dementia lead normal lives, to the extent
that it is possible, by minimizing any restrictions,barriers, or discrimination they might experience
as a result of their dementia condition. Thoseare places where communities come together toaccept people living with dementia and their families. They also provide spaces for counseling, evenfor sensitive or delicate matters.
Perhaps one reason why early detection rates ofdementia have increased so slowly is that many
people are anxious and fearful about significant
changes to their lives and losing touch with theircommunities once they are diagnosed. Knowingthat it is still possible to live a normal life in thesame environment, even after developing dementia, can serve as great comfort to people with suchfears. Dementia Cafés will continue to play animportant role as communal gathering places forpeople of all ages and stages of life.

REFERENCES
51. “Conference Material from the National Meeting of
Directors in Charge of Nursing Care Insurance andElderly Insurance and Social Security.” Ministry of
Health, Labour and Welfare Website. March 10, 2017.
http://www.mhlw.go.jp/stf/shingi2/0000154636.html.
52. “Alzheimer café UK” http://www.alzheimercafe.co.uk/
53. Fujimoto, Naoki, and Noriko Okumura. “The roleof ‘forgetfulness clinics’ as places to support people
living with mild dementia.” Journal of the Japan
Geriatrics Society 44, no. 5 (September 2007).
54. “Direction of Dementia Policy” Ministry of
Health, Labour and Welfare Website. June 18,
2012. http://www.mhlw.go.jp/file/06-Seisakujouhou12300000-Roukenkyoku/0000079273.pdf
55. “Outline of the Comprehensive Strategy for the
Promotion of Dementia Measures (New Orange Plan)– Toward the Creation of Communities that are Friendly
to People Living with Dementia.” Ministry of Health,92 | SOCIAL MEDICINE FOR DEMENTIA

Labour and Welfare Website. http://www.mhlw.go.jp/
file/04-Houdouhappyou-12304500-Roukenkyoku-Ninchishougyakutaiboushitaisakusuishinshitsu/01_1.pdf
56. MCI: Mild Cognitive Impairment. The main
symptom of mild dementia is forgetfulness, although
it has almost no impact on a person’s daily life.
People living with MCI cannot be diagnosed as having
dementia. (“e-Health Net” Ministry of Health, Labourand Welfare Website. https://www.e-healthnet.mhlw.
go.jp/information/dictionary/alcohol/ya-033.html)
57. Normalization: The philosophy of aiming for a society
in which those with and without disabilities support
each other and live energetic, bright, and rich lives in theirregions. (“Welfare Division for Persons with Disabilities”
Ministry of Health, Labour and Welfare Website. http://
www1.mhlw.go.jp/topics/profile_1/syougai.html)

Manager, Miyamae Library, Kawasaki City
Since August 2015, the Miyamae Library in Japan’s
Kawasaki City has undertaken a number of initiatives to become a “dementia-friendly library.” Weinterviewed Mr. Funada, a manager at the library,about how this library became dementia-friendly.
Making Connections Between People andInformation at the Community Level
The efforts made by Miyamae Library revolvearound three focal points:• Providing information services. Currently,
the library has collected more than 140 books
on topics such as law, medicine, caretaking,recreation, and nonfiction. Many of these
topics are considered useful for people livingwith dementia, and those in the nonfiction
category include books on fighting against
dementia, and books detailing experienceswith dementia. These books are organized on
small shelves that are considered user-friendly
for people living with the condition.
• Foster volunteers who can read toothers. As part of Integrated Community Care
System initiatives, the library is working withlocal community centers to train senior
volunteers. The aim of this is to constructindependent and supportive relationships
among community members by encouraging
intergenerational exchanges, and giving seniorcitizens roles in their communities. This isdone with the goal of connecting people,
reference materials, and information. Senior
volunteers visit caretaking centers to read
aloud to other seniors and children in their
grandchildren’s generation. This gives older
people important social roles to play, which
is important in the prevention of dementia.
The number of older people who live alone isincreasing, and daily contact with others canhelp them feel that their lives are moremeaningful. Such interactions are also beneficial
because they make it possible for changes inolder people who live alone to be noticed quickly
by those they interact with.
• The role of the library as a bridge toconnect with community support centers.
By interacting with older people, library
employees can notice how they are changing,enabling them to get in touch with the closest
community care centers at an appropriate
time. These library initiatives are also producing the unexpected effect of allowing people
through books—to reflect on their lives and theinterests they have that their families may noteven know about.
It All Begins with Awareness on the Part of
Library Employees
The dementia-friendly library concept at Miyamae
Library was not initiated by national or local
governments. In fact, the efforts now underway
were born out of observations made by library
employees, who noticed that certain library users
would frequently ask the same questions, rush inat the same time each day to find someone, or be

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3. A DEMENTIA-FRIENDLY LIBRARY

4. THE MIMAMO OTA-KU
ELDERLY CARE NETWORK

unable to tell the difference between their own
books and library books. Library employees began
to wonder what library services could be offered
for such people amidst an aging local population. In response, Mr. Akira Funada, Manager
at Miyamae Library, came up with a response:“Libraries should not just be places that store
books. They should also provide information oncommunity issues.” To increase access to suchinformation, the library created a small space forbooks about dementia and flyers on government
services. A month and a half after this space was
set up, the library was able to officially partnerwith Kawasaki city government through theinteraction with the government officer. This was
the beginning of the initiative to create a full-on
dementia-friendly library, in collaboration withthe municipal government. Other parts of Japanare now looking into implementing their own
dementia-friendly initiatives. The short-term goalof Miyamae Library is to collaborate with librarystudies researchers to develop a Japanese versionof dementia-friendly library guidelines.

CREATING A NEW URBAN NETWORK TO ENCOURAGE
INDEPENDENCE AMONG COMMUNITY RESIDENTS

Mimam0–A Network to Watch Over theOlder People in Their Communities

Contributing to the Integrated Community
Care System as an Information Hub
The training of volunteers who can read aloudto others, as well as serving as a bridge between
community support centers, goes beyond thescope of what people normally think of when they
think of libraries. Libraries are commonly thoughtof as places that just lend books, but libraries
increasingly play a role in providing information
to communities in order to promote civic action.
Mr. Funada has demonstrated the strong mindset
that libraries are government institutions thatshould take part in the Integrated Community
Care System. Miyamae Library is currently working to serve as an entry point and information hub
for people living with dementia, connecting many
players in this field, such as municipalities, hospitals, community care centers, and the financial

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A small bookshelf for people living with dementia
at a dementia friendly library Miyamae
Photo Credit: Akira Funada (The Miyamae Library)

institutions and local shops and communities.
By overcoming small hurdles such as successfullycommunicating to people that they can drop byanytime, free of charge, even on weekends, it ishoped that more people will visit the library, andthat it will become a core piece of the community.

Ota-ku, located in the southern part of Tokyo, has
a population of approximately 710,000 people and22.5% of them are aged 65 or older (as of October,2015).58 In light of the aging of the Japanese population, the Ministry of Health, Labour and Welfare
is currently promoting an “Integrated Community
Care System.” The goals of this system are toprovide integrated housing, medical care, nursing
care, disaster prevention, and lifestyle support
to older people. To that end, efforts are being
made to open community support centers insidejunior high schools within 30 minutes of walking
distance from the homes of the people whom eachcenter will help. At each center, local residents canreceive counseling, and connect with care specialists. The overall aim of this system is to enhance
the support offered by local governments andcare specialists in each region so that the growing
number of older people can continue to live for as
long as possible in the homes and communities
that they are accustomed to. So far, twenty-one
such community support centers have been
opened in Ota-ku, and these centers are alreadyhandling 10,000 consultations per month.
The first person to call for the creation of these
Elderly Care Networks in Ota-ku was Mr.
Hisao Sawanobori, Director of the Community
Support Center of Makita General Hospital. Mr.
Sawanobori assumed the role of Center Director
for the Ota-ku Community Support Center in
Iriarai, in 2006. However, shortly after starting his

new job, he realized that he spent most of his day
busy with administrative tasks and had little timeto provide active support to the local community,
which was the original goal of the center. This led
him to the idea of creating a network that could
help watch over older people in the community.
The Ota-ku Elderly Care Network (known as“Mimamo”) was formed based on that idea. The
intention of this network is to foster communities that care for older people. Its main activities
include holding seminars on community building
for local residents, organizing “Mimamo Stations”(an initiative that makes use of empty storesin local shopping areas to create spaces where
people can relax and gather), and the creation of“Mimamo Key Chains,” trinkets containing serial
numbers that hold important information suchas names and addresses. These key chains allow
for the identification of older people during emergency situations. Because Mimamo is a volunteer
organization without the legal status of a corporation, the various contracts it signs and its bankaccounts are all under the name of its representative. It currently has cooperative arrangementswith 92 corporations and groups.
Giving Donors the Opportunity to Do
More than Just Provide Financial Aid
The organizations that cooperate with Mimamo
do not only provide financial assistance. Mimamo
also turns to them for help with running its annual community building seminars, for staffing
Mimamo Stations, and for help with planning
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4. THE MIMAMO OTA-KU ELDERLY CARE NETWORK

various events. Mr. Sawanobori commented
on the intent of having donors participate inMimamo activities: “When corporations participate as members of our network, it allows theiremployees to involve themselves in our network as
part of their job. It wouldn’t be possible to createa sustainable system just relying on volunteers.”
Furthermore, in recent years, Mimamo has sought
help from individual supporters. Mimamo is working to encourage people to take greater initiativein their own communities by having them fill out
application forms and pay annual dues.
The Two Networks that Support Mimamo
The Mimamo Ota-ku Elderly Care Network comprises two networks.
The first is its “Support Network,” a true integrated community care system. This network is
composed of care specialists, and was created tooffer integrated and continuous support throughmedical care, nursing care, and health and social
security work.

Mr. Hisao Sawanobori who started Mimamo
holding a mascot character of Mimamo
Photo Credit: Mimamo

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4. THE MIMAMO OTA-KU ELDERLY CARE NETWORK

Mimamo’s second network is its “AwarenessNetwork.” This is a casual network of linkages
among local people. The intent of this network is
to put older people in contact with the Support
Network if any of its members notice changes inolder acquaintances. The Awareness Network
is made up of the friends and neighbors of older
people, as well as the members of community
associations, older associations, and people working in shopping areas, at financial institutions,and other service sector jobs.
The linkage of these two networks allows Mimamo
to create a voluntary support circle connecting
care specialists and local community members.
Dementia in the Community
Network System
Mimamo is not currently doing anything in particular for dementia. The reason for that is because
efforts to solve the issues associated with dementia require progress on community building.
Even if care specialists went into each community and began testing the cognitive functions ofresidents, it is unlikely that many people would
respond to recommendations for further medical
consultations.
As such, Mimamo’s Awareness Network is vital for
efforts to tackle dementia. Through the AwarenessNetwork, older people can be put in contact withcare specialists when the people around them
begin to notice changes. This enables older people
to receive early diagnoses and care. The support
offered to senior citizens through Mimamo’s
network also allows older people to continue livingin their communities even after they are diagnosed. Population aging in Japan is giving rise to anumber of complex problems outside of dementia,
including the problem of social isolation amongolder people. By constructing integrated networks
to support older people, Mimamo is carrying out
a comprehensive response to the various issues of
population aging from the perspective of community building.

Lunch provided at a salon(approx. 500 yen per meal [4.5
USD, 1USD=110 yen])

Mr. Sawanobori and staff at a community center, people
from cooperative organizations and local volunteers
Photo Credit: Mimamo

Photo Credit: Mimamo

Peace of Mind
When we think about policies for dementia, there
is a tendency to focus only on the condition itself.
However, when taking a broader view on the issue
it becomes clear that there are many complications
accompanying dementia that cannot be resolved
without involving the wider communities of people
living with dementia. For instance, communities
have the ability to notice changes in their older
residents. Although it may appear on the surface
that Mimamo’s network targets only older people,
in practice, Mimamo has created a network thatserves everyone from children to older adults.

Many community networks have been created by
a top-down approach led by national and local
governments, but, moving forward, Japan willneed more community-building initiatives led
independently by various interested parties andgroups. Community residents, local businesses,
and local groups are the greatest resource that any
region in Japan has. Independent networks started by local residents are fundamental to efforts toallow senior citizens to live with greater peace ofmind—with the knowledge that people are looking
out for them and supporting them—after being
diagnosed with dementia.

REFERENCES
58. Census on Population, Population and Household in Ota-ku, 2015 https://www.city.ota.tokyo.jp/
kuseijoho/suuji/toukei_chousa/kokusei_chousa/27jinnkoutoukihonshukei.files/otakunogaiyou.pdf

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5. KIZUNAYA: RESOLVING REGIONAL PROBLEMS

5. KIZUNAYA: RESOLVINGREGIONAL PROBLEMSTHE SUPPORT CENTER FOR EARLY-ONSET DEMENTIA

the topic of early-onset dementia.
Mr. Tatsuya Wakano
Representative Director, Support Center
for Early-Onset Dementia: Social Problem
Solutions Laboratory Kizunaya
Deputy Managing Director, National Family
Association of Early-Onset Dementia
and Supporters Liaison Committee
Board Member, Dementia Friendship Club

Early-onset dementia is becoming as serious a
problem as that of late-onset dementia. Earlyonset dementia refers to dementia that occurs in
people younger than the age of 65. According toa survey conducted in 2009, it is estimated that
there are currently 37,800 cases of early-onset
dementia in Japan.59 We interviewed Mr. Tatsuya
Wakano, who manages the Support Center for
Early-Onset Dementia in Nara Prefecture.
The aim of Kizunaya—a place
for people with early-onset
dementia and their families
The Support Center for Early-Onset Dementia:
Social Problem Solution Laboratory Kizunaya
was established in April 2009, in Nara Prefecture,with the aim of providing a place for people withearly-onset dementia and their families to stay
and work. Members consist of people living withdementia, families and supporters—both individuals and corporations. The center also launcheda salon in 2010 for people living with early-onset dementia. Since its beginning, Kizunaya has
actively engaged with the local government inNara, which has supported Kizunaya throughgovernment-sponsored surveys and seminars on
98 | SOCIAL MEDICINE FOR DEMENTIA

CASE STUDIESIn the beginning, Kizunaya focused on resolving
problems faced by people with early-onset dementia, providing a wide range of support, including
job opportunities and gathering places, as wellas activities to raise public awareness. Althoughpeople living with dementia were motivated toparticipate in social engagements, initially there
were few avenues open for this. For that reason, in
April 2014, Kizunaya shifted its focus to problemsolving for the local community. Kizunaya began
to create work and gathering places throughcollaborations between people living with dementia and other community members. It was aroundthis time that Kizunaya was officially registered asa corporation.
Kizunaya’s current activities include providing
spaces where people living with dementia cangather and relax, as well as receive counseling andsupport. These spaces cater to the needs of people
at all stages of early-onset dementia and theirfamilies. Additionally, Kizunaya is undertaking
three projects for employment support throughproblem-solving activities in the local community.
These include:
1. a food project utilizing a network of local
farming and fishing villages,
2. an information-sharing project using tourist
resources, and
3. a tree-planting project that cultivates
Yamato-Tachibana and Yamato-Touki trees.
These projects were all proposed by community
members themselves. Each activity was initiatedby Kizunaya members who participated in thecommunity meetings and collected local opinions on various problems in the community.

identifies local problems by listening to community members. Once that is done, Mr. Wakano
arranges a meeting with the local government,
companies, healthcare professionals, and community members to discuss and share ideas about
how to solve the problems. Participants can offer
ideas regardless of their positions and fields ofexpertise. Based on the results of these discussions, new projects are planned and set in motion.
For instance, the cultivation of Yamato-Tachibana
and Yamato-Touki trees was originally started tosupport a community-based Yamato-Tachibana
revival project that faced a sustainability problem due to the aging of the farmers participatingin the project. Community members, including
people living with dementia, are now gathering
at Kizunaya to work on the project. The project isfunded by the Nippon Life Insurance Foundation,
which enables it to pay participants living withdementia for their work.
Mr. Wakano commented, “The issues raised
when considering support for people living withearly-onset dementia contain the issues that wewill face in the future for patients with late-onset
dementia as well.” With the aging of the Baby
Boomer generation and an increase in the numberof people receiving an early diagnosis of dementia, it is likely that there will only be more people
who are uncomfortable with conventional types of
support, such as daytime nursing services. People
living with dementia can play a vital role in theircommunities and enjoy meaningful lives. Supportshould be provided that can help them realize this.
Setting up systems to connect people—
the need for support coordinators
On the early detection and diagnosis of early-onset dementia, Mr. Wakano commented, “An early
diagnosis and the early provision of care can
improve the prognosis of the disease. That said,
in reality, there are no real connections in place totake a person from their diagnosis to the point ofreceiving care.” For early-onset dementia, symptoms tend to be detected early, due to the fact thatmost people with it are still working and socially

After pruning a Yamato-Tachibana tree (NaraCity, February 2017) | Photo Credit: Kizunaya

active. However, after being diagnosed, there arefew places where people can receive counselingand support. Additionally, the information sharedby professionals at health facilities or community centers is frequently also inadequate. This
commonly results in people with early-onset
dementia and their families becoming isolated
from society, with no access to support services.
To solve this problem, Mr. Wakano suggested
the deployment of a support coordinator to eachprefecture. This coordinator would act as a focal
point, providing information and arranging fornecessary support services. Mr. Wakano also stated that it would be beneficial for doctors making
house calls to be able to provide information on

When developing a project, Kizunaya first
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5. KIZUNAYA: RESOLVING REGIONAL PROBLEMSCASE STUDIES

6. RUN TOMORROW:KEYWORDS THAT BRINGPEOPLE TOGETHERCREATING NEW VENUES FOR COMMUNICATION THATGO BEYOND COMMUNITIES AND ORGANIZATIONS

A “virtual reality dementia” seminar held to help people experience the world of a person
living with dementia (Nara City, March 2017) | Photo Credit: Kizunaya

Satoshi Ide, ND
appropriate ways in which patients and theirfamilies can receive support.
Mr. Wakano also emphasized the importance ofaddressing the fear that people feel when diagnosed with dementia. It can create a psychologicalbarrier that prevents people from seeking further
medical consultations. Kizunaya has created anenvironment in which it is easy for people to casually visit and consult others about their concerns.
In order to promote early detection and diagnosis,
more places, like Kizunaya, are needed throughout Japan.
If a system for seamless support can be establishedthat can take people from early detection to careand support services, it would enable more people
living with dementia to maintain a normal life.

and diagnosis, and efforts to listen to the voices ofpeople living with dementia, will contribute to thecreation of an improved dementia support system
for the future.” We are approaching a new era inwhich people who are living with dementia will beable to create and shape the support services thatthey need.
The issues that Kizunaya has been addressing
up until now are directly connected to otherdementia-related problems, and they represent
pressing challenges for society. The activities of
Kizunaya showcase a new model, not only for
dealing with dementia, but also for the creation ofpeople-friendly communities.

Activities enable people living with dementia to
continue leading active lives, give people satisfaction and confidence, and enhance their quality oflife. Mr. Wakano explained his vision for the future,“It is my hope that the promotion of early detection

REFERENCES
59. MHLW (Outline of the survey result about the situation surrounding patients with early-onset dementia
and the measures against it by the MHLW): http://www.mhlw.go.jp/houdou/2009/03/h0319-2.html.

100 | SOCIAL MEDICINE FOR DEMENTIA

Professor, Open University of Japan
President, NPO Dementia Friendship ClubMr. Takehito Tokuda
Board Member, NPO Dementia Friendship ClubThe Goals and Activities of the
Run Tomorrow Initiative
Dementia Friendship Club is an NPO founded in
Sapporo in 2007, with the goal of creating dementia-friendly environments in communities andtowns across Japan. The NPO, which is currently
active across the country, introduces people livingwith dementia to “friendship supporters”—volunteers who support people living with dementia—
and “friendship spots”—shops and venues that areeasily accessible for people living with dementia.
Another one of the NPO’s activities is the “RunTomorrow” initiative, an awareness-raising
event in which runners, including people livingwith dementia, run from the starting line to thefinish line sharing a single running sash. The sash
is passed from person to person in a relay race,
which symbolizes the ideal of people living withand without dementia in achieving their goals
together. The first event was held in 2011 with 171

participants, many of whom were people livingwith dementia. It covered a distance of 300 kilometers from Hakodate to Sapporo. Every year,
the relay has grown bigger. In 2016, runners
ran approximately 6,500 miles from Sapporo to
Okinawa, completing the event’s first multi-island course. It is estimated that more than 11,000
people participated.
Fostering a community through abottom-up awareness-raising activity“Run Tomorrow is a bottom-up activity,” explained
Dementia Friendship Club President, Satoshi Ide.
While top-down awareness-raising activities initiated by the government may have an immediate
effect, such activities often face difficulty in getting
full community buy-in, and they frequently cometo a halt once financial aid stops. Since the goalof the Dementia Friendship Club is to create
dementia-friendly living spaces, it is importantthat activities don’t lose sight of the need to foster
communities. Unlike top-down activities, Run
Tomorrow has spread throughout the country byslowly creating one regional network after another. Since the activity is based on efforts to foster
communities, it becomes a regular part of thecommunities that host the activity, leading people
to voluntarily sustain and expand it.

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6. RUN TOMORROW: KEYWORDS THAT BRING PEOPLE TOGETHERRun Tomorrow is managed cooperatively bynursing care facilities, medical institutions, andcompanies from each area where the event takes
place, along with the Dementia Friendship Club.
The event brings regional stakeholders to thesame table. It gathers people from different fields
and positions who would normally never interact
with one another. In doing so, it creates a platform
for collaborations and information sharing. It also
creates a beneficial opportunity for the generalpublic to gain an interest in dementia and think
about the creation of dementia-friendly communities. Mr. Ide commented, “It is especially important to create a safety net that can connect people
living with dementia and their families to appropriate medical care and social security institutions,so that they don’t suffer in isolation. The safety
net should protect people living with dementia
and their families.” Run Tomorrow contributes tothe strengthening of regional capabilities for thecreation of dementia-friendly living spaces.

6. RUN TOMORROW: KEYWORDS THAT BRING PEOPLE TOGETHER

That said, in recent years, information about
dementia is beginning to focus on people livingwith dementia. This is likely because people livingwith dementia who have chosen to live their lives
the way they see fit are starting to raise awarenessabout their own experiences. Therefore, it poses
the question: what is needed to propel the shift in
the way that people view those living with dementia to the next level? According to Mr. Tokuda, theanswer to that question is “personal, real” information. He explained that he hopes to have the public
think of people living with dementia as normal,
not by telling more stories via television, books, orother media, but by increasing the opportunities
that people have to come into contact with people
living with dementia in their daily lives. “What weneed is a variety of opportunities for the membersof the public to speak with people living withdementia in their communities and workplaces,”
explained Mr. Tokuda. In order to change the way
the public views dementia, there are high hopes
for small-scale dementia awareness-raising activities to spread across the entire country.

Photo Credit: Run Tomorrow

Creating a regional network

CASE STUDIES

A new kind of dementia awarenessactivity—bringing the real stories ofpeople living with dementia to light
When asked about the future of dementia awareness activities, Dementia Friendship Club Board
Member, Takehito Tokuda responded, “It is
important that people come into contact with new,personal, and real stories from people living withdementia.” People have strong perceptions about
the burden of dementia. That image has been fixedin the mind of the public through various reports
related to nursing care, including “The TwilightYears,” a novel by Sawako Ariyoshi that was
turned into a movie. Up until very recently, thepublic narrative around dementia has not focusedon the people living with dementia themselves.
Stories in the media about people living withdementia have tended to be especially dramaticand emotional tales, or stories about exceptional“miracle” patients. People have not seen stories
about people with dementia living vibrantly, or
the actual realities of their day-to-day lives.

Run Tomorrow is a good example of an effort tocreate opportunities for members of the generalpublic, from children to the elderly, to interact withpeople living with dementia. Mr. Ide commented
on the significance of the program, “The children

who participate in Run Tomorrow see the smilingfaces of people living with dementia. The event
has the power to change the image people haveof dementia.” There is certainly power in having aperson with dementia speak to a large group, but
the act of having multiple people living successfully with dementia in each area has the power tochange a person’s personal experience with theircommunity.
In order to promote the early detection and diagnosis of dementia, both Mr. Ide and Mr. Tokuda
pointed out the need for optimistic stories related to the way people with dementia live and theways in which they are accepted into society. They
further noted that if there is no hope that people
living with dementia will be accepted graciously
into society after solving various issues such as
securing housing and confirming coordination
among medical and care organizations, then theimage that people have about early detection anddementia in general won’t change. As Mr. Ideemphasized, “It is vital that people have hope forthe time after they are diagnosed with dementia, even if what they hope for seems far off.”
Further effort is needed to promote the creation ofdementia-friendly communities for people livingwith dementia, including the promotion of early
detection.

People living with dementia and fellow community members participate in a relay (September
2015 – Fujinomiya City, Shizuoka Prefecture) | Photo Credit: Run Tomorrow
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7. DAYS BLG!

7. DAYS BLG!: WORKINGWHILE LIVING WITH
DEMENTIA
FINDING A CLEAR PURPOSE IN LIFE

Mr. Takayuki Maeda
Chief Director of Machida City Connecting
Living with Dementia Association
Mr. Shinichi Okuzawa (alias)
Member, DAYS BLG!

Members decide voluntarily how they want tospend their time. Services are not forced on them.
People living with dementia are able to choose
what they want to do with their life as a matter ofcourse. They’ll be able to work and earn money andcontribute to society, which will be offered by BLG!
This process is already helping people preventthe advancement of dementia and to maintain or
improve their day-to-day functionality.

Moving beyond conventional frameworks
for day-nursing: going from a beneficiaryto someone supporting society

Filling the time after dementia has been
diagnosed—a strategy for creating ways forpeople to enter and exit their communities

DAYS BLG!, a new type of day-nursing facility forpeople living with dementia, was established in
Machida City, Tokyo, in August 2012. DAYS BLG!
will be attracting a lot of attention from across thecountry by advancing it activities to change theconcept of what day service is.

What is the significance of early detection anddiagnosis for people living with dementia? Mr.
Takayuki Maeda, Chief Director of Machida City
Connecting Living With Dementia Association, theNPO that runs DAYS BLG!, explained, “There aremany benefits for people if they receive an earlyand correct diagnosis, and then realize the kindof changes they will face. Of course, the diagnosis
will also change the treatments they can receive…
connecting people quickly to appropriate placesof support helps to manage the advancement ofdementia.”

DAYS BLG! places a heavy emphasis on social
participation by people living with dementia, andruns activities in which such people can play arole in their communities. DAYS BLG! collaborates with companies to offer people living withdementia jobs and compensation for their work.
These jobs include tasks such as washing vehicles
for businesses that sell cars. Participants alsoteach about dementia at child care centers. This
allows people living with dementia to function as
members of society with meaningful roles.
Given the nature of the program, DAYS BLG!
does not differentiate between people giving andreceiving services—everyone who participates in
DAYS BLG! programs is considered a “member.”

CASE STUDIES

and social security providers, people stuck inthese blank periods frequently have nowhere to go
and little information about what they should do.
They often become isolated and shut themselvesin their homes, and there are a few cases in which
their dementia progresses rapidly because of this.
Mr. Shinichi Okuzawa, a DAYS BLG! member withfrontotemporal dementia, pointed out the seriousness of this problem: “If people are diagnosed andleft on their own, there is nothing for them to do
but fall into despair. We need a framework thatcan follow up with people and their families after
their doctor has told them their diagnosis.”
Mr. Maeda emphasized the importance of support
for “exits” from blank periods. Urgent efforts areunder way to create positions in society for people
with dementia. There are also support programs
that can help those with early-stage or early-onset dementia exit the blank period after theirdiagnosis. Dementia cafés, early-onset dementia
coordinators, and dementia advocates in each
community can serve as resources to help withthis. Mr. Maeda says that the important thing isnever to lose sight of “the places that people livingwith dementia want to go, and the things that theywant to do.” DAYS BLG! helps dementia patients
realize their hopes and dreams related to working.
It presents one of the few ideal “exits” for people
living with dementia in Japan, in that it supports
people after they have exited the “blank period.”
Mr. Okuzawa said about the program, “It provides
the support that people need to break out of thecurrent situation in which ‘an early diagnosis
equals early despair.’ It allows people to continue
to live the way they choose, even after they havebeen diagnosed with dementia.”
If there are “exits” from blank periods, then there
must surely also be “entrances.” Currently, one
common way in which people enter a blank period is by being let go from their jobs after being
diagnosed with dementia, which cuts them offfrom society. Mr. Maeda has begun initiatives
to prevent such situations. The initiatives aim
to encourage the creation of “work continuation
simulation plans” in various corporations. These
plans anticipate ways in which employees cancontinue to work for a period of time, perhaps bychanging their work duties or departments, evenafter they have been diagnosed with dementia.
Mr. Maeda commented, “Currently, people will

One issue preventing people from receiving appropriate support is what Mr. Maeda calls the “blankperiod.” This is a period of time that sometimes
occurs for people after they have been diagnosed.60
During the blank period, those with early-stage or
early-onset dementia often find that they have nohelpful social support resources available to them,
due to the nature of the current frameworks inplace to support dementia patients. Because of alack of cooperation between medical professionals
A meeting of DAYS BLG! members (May 2016). | Photo Credit: DAYS BLG!

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7. DAYS BLG!

CASE STUDIES
7. DAYS BLG!

A store owner watches over children gathered at his Japanese sweets
shop (around February 2016). | Photo Credit: DAYS BLG!

have coworkers who are diagnosed with dementia, and they won’t be at work the very next day.
We can’t change the hopeless image people haveabout dementia in this kind of society.” The plans
assure people that they won’t suddenly lose theirplace in society if they are diagnosed with dementia. These plans are being made with the belief
that there will be a positive impact on the social
image of dementia if people start to feel optimistic
about their lives after receiving a diagnosis.
Changing the image people have about
dementia from the ground up
Although an early diagnosis is important, it is hardfor many people to understand its merits, giventhat there are no complete cures for many typesof dementia. The fears that people have about
dementia outweigh the merits of early diagnosis,
so many avoid visiting medical institutions. Suchfears have become a major barrier to promoting
early diagnosis. Mr. Maeda believes that enhanced
exit- and entrance-side support will eliminate theblank periods that can cause people living with106 | SOCIAL MEDICINE FOR DEMENTIA

dementia to suffer so much. Therefore, changing the image that the general public has about
dementia, can help to promote early diagnosis.
DAYS BLG! members talk with others about
their situations willingly. They provide theirfellow community members with a new image of
people living with dementia that was previously
unheard of—one in which such people continue
to work and contribute to their communities on adaily basis. For this reason, DAYS BLG! activities
are also sometimes called “community building
initiatives.” There have already been some casesin Machida City of people seeking early diagnosis
after participating in gatherings with local community members and people living with dementia
held by DAYS BLG! It is expected that an increasein the number of active people with dementia in acommunity will help to decrease the barriers thatpeople face to receiving an early diagnosis themselves. Machida City is starting to see this kind of
positive cycle already.

People wash a car at a HONDA CARS TOKYOCHUO showroom (around February 2016).
Photo Credit: DAYS BLG!

The importance of early detection and early diagnosis is gradually starting to be understood bypeople living with dementia and the people who
support them. However, many issues remain
before a society can be created in which everyone can enjoy the benefits of an early diagnosis.
Mr. Okuzawa summarized the issue: “Support
for people living with dementia isn’t currently
done from the perspective of people who havedementia. If we want people to understand thisissue, we need to give people living with dementia
a voice.” Society needs to respond to the courageof people living with dementia as they attempt tocommunicate their feelings. In DAYS BLG! we cansee a strong catalyst for change that is working toconvince many people that being diagnosed withdementia doesn’t have to be devastating.

REFERENCES
60. Japanese Dementia Working Group Prospectus (October 11, 2014).

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INTERVIEW
DR. KIYOSHI MAEDA
PROFESSOR EMERITUS AT THE INTEGRATED REHABILITATIONFACULTY AT KOBE GAKUIN UNIVERSITYPROFESSOR EMERITUS AT KOBE UNIVERSITYMONITORING SUPERVISOR FOR KOBE CITY DEMENTIA MEASURESCHAIRMAN, FOURTH SUBCOMMITTEE, KANSAI HEALTH
AND MEDICAL CARE INNOVATION COUNCIL

As a multidisciplinary team, there was much
more that we could collectively do for a patientthan I could as an individual physician.

INTERVIEW

IMPROVING PATIENTSAND FAMILY’S QUALITY
OF LIFE WITH A
COLLABORATIVE TEAM
The challenges surrounding dementia gobeyond medicine. They involve society as
a whole, and include the fields of publichealth, nursing care, and welfare. You
have been working as a psychiatrist,
and in recent years, you have also
been involved in creating policies tosolve problems related to dementia
in Kobe City. Please tell us about yourown relationship with dementia.
After graduating from medical school, I chose to
specialize in psychiatry because during my residency I found that psychiatrists were the kindest
among all the physicians I worked with. There
are also a few different fields within psychiatry tochoose from; I chose geriatric psychiatry because I
had a strong interest in the mental health of seniorcitizens. While working as a physician, I’ve seen theemergence and rapid progression of issues related
to the aging of society. I was thinking about what
to do about that issue when Mr. Tsutomu Hotta,
who was a prosecutor for the Lockheed bribery
scandal, retired from the Ministry of Justice toestablish the Sawayaka Fukushi Foundation61 This
foundation was created with the goal of solving
problems related to end-of-life care for people
with dementia. I was deeply touched by his efforts.
At that time, the aging rate62 in Japan was stillaround 14%, and Japan had just recently become
an “aged society.” I read Mr. Hotta’s book, and it
made me realize that many people see end-of-lifecare for people with dementia as somebody else’s
problem. However, this issue will become a serious
problem for Japan in the future. It was at that timethat I started to think that I wanted to contributeto this issue as a physician. That is the reason why
I decided to specialize in dementia.
During my time working at Kobe University
Hospital, I worked both as a professor and a physician in the hospital, so I was very busy. This may
be a custom unique to Japan, but as a professor, I
was responsible for not only clinical practice, butalso personnel management at related hospitals.
As such, the work that I was involved in at thattime ranged widely from hospital-related anddepartment-related issues to work in other hospitals. Aside from management work, I also saw
patients every day. At that time, university hospitals were not very active in engaging with community health, so I was not very aware of what was
happening outside the hospital, especially related
to things that were happening within the field ofcommunity health.
In 2012, after I resigned from Kobe University
Hospital, I was asked by Kobe City to help themestablish and promote an “initial-phase intensive
support team” (IPIST)63 for dementia. After a
preparatory period, the team began operations in2013. To be honest, I was initially just interested
in providing advice for the project. However, as
time went on, I became more and more interested
in the project, and decided to be involved as muchas I could be—for example, by attending teammeetings.
Since I had worked for a long time on dementia
within a university hospital, and had only viewed
the issue from the perspective of clinical medicine,
I was astonished by the discussions that were going

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on within the IPIST on how to support patients as
a community, featuring various health professionals, including nurses, public health nurses, andsocial workers. I also realized how fun it was towork collaboratively in a team full of people withpride and expertise. As a multidisciplinary team,
there was much more that we could collectively do
for a patient than I could as an individual physician. Gradually, I became fully involved in thefield of community health and related policies.
What do you find most interesting about
working in a multidisciplinary team?
At the university hospital where I used to work,
I worked mainly with other physicians and nurses, and my interactions with other fields, suchas occupational therapists and social workers,
were limited. On the contrary, at the IPIST that
I became involved in, everyone did their best tofind a solution for every case, using each person’s
expertise, beyond any occupational boundaries.
For example, we have medical professionals,
including physicians, nurses, public health nurses,
care workers, social workers, and others who are
all supporting patients and their families as muchas they can. This collaborative process, in which
everyone fully utilized their own expertise, while
also respecting other occupations, was very novel
to me. I have come to strongly believe that thisapproach will become indispensable for dementia
care in the future.
One of the problems with dementia is that as
people’s cognitive functions decline, they find it
harder and harder to continue to have a social life.
As dementia progresses, people often find it difficult to continue with certain aspects of their daily
life. In light of that, physicians should not just focus
on diagnosing patients, but also provide support
for their daily lives. Otherwise, it cannot truly besaid that we are doing something for our patients.
In other words, when it comes to dementia, weshould focus more on caring about our patients,
rather than focusing on traditional physician tasks
such as diagnosis or treatment. I think that this iswhat is special about treating dementia. Patients
face certain issues that can’t be solved by physicians and nurses alone. It is important to establish
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committees that involve people with expertise in
all relevant areas. It seems in recent years, publicattention has focused on the fact that drugs totreat dementia have not yet been developed. But
even after therapeutic drugs are developed, we
will still have the problem of finding people who
can support people with dementia in their everyday lives. Multidisciplinary teams are very important for that purpose, since they can consider theneeds of those with dementia and their families ona day-to-day basis.
You have been working in the fieldof dementia for many years. Do
you feel that the way society views
dementia has changed over time?
I think that ever since the official terminology used
for dementia in Japanese changed64 from “Chihoushou” (Senile disease) to “Ninchi-shou” (Cognitive
disease) in 2004, we have seen a slight decreasein dementia-related stigma and discrimination.
Of course, the symptoms of dementia have notchanged, so I think that there are people who still
hold prejudices about those living with dementia.
In order to eliminate stigma and discrimination,
it is important to raise awareness and help people
realize that they could one day have dementia
themselves, and that everyone is at risk for developing dementia. I’ve heard that in the near future,
the average life expectancy will increase to 90
years old. Beyond the age of 85, the proportion ofpeople with dementia is over 45%.65 It is common
for people to see a gradual decline in their cognitive function by the time they are 85. Therefore, it
is important that people recognize that dementia
is one of the many diseases that people get as they
get older and as cognitive functioning declines. In
short, we have to create a society in which everyone
realizes that they could be diagnosed with dementia one day. If we can do that, I think people will
become more interested in dementia, and they will
be able to accept their diagnosis if they receive one
in the future. A deeper understanding of dementia would also help people to support friends andfamily better when they are diagnosed.

INTERVIEW

Especially withearly-onset dementia,
it is often difficult, evenfor physicians, to offer
appropriate advice.
This is why it isimportant thatphysicians have a goodunderstanding of thebenefits and resources
available to suchpatients in theircommunities.
What do you think about the attitudes of
medical professionals toward dementia?
In the past, there were some physicians who were
unwilling to treat those with dementia becauseof the misconception that patients are difficult tocare for, or that if patients caused trouble duringhospitalization they would be quickly discharged
and switched to outpatient care. However, it is nolonger possible to deny patients care just because
they have dementia. It has become normal forphysicians to take care of dementia patients since
the prevalence of dementia started increasing.
The government has begun to organize workshops
for medical professionals (mainly physicians andnurses) to improve their understanding of dementia as part of their policies on dementia.66 Similar
events are also recently being held in rural areas,
too. I get the impression that both the number ofhospitals that are holding such workshops and thenumber of medical professionals who are participating in them are increasing. Similarly, I believethat the attitude of healthcare workers towarddementia continues to change and improve.
I would like to share the story of a case that I
recently encountered of a person in his 50s who
was diagnosed with Lewy-body dementia67 at oneof the largest hospitals in his region. After the
diagnosis, he was advised by his physician to seek
support from his family doctor, but unfortunately,
his family doctor was not a dementia specialist.68
As a result, he did not receive appropriate careafter his diagnosis and, left with no alternative, hecame with his wife to visit me.
I usually encourage my patients to enroll in thelong-term care insurance system69 when diagnosed with dementia. However, he was hesitant
to take advantage of this benefit, as he was justunder 60 years old. He could not accept the factthat he was in a condition that made him needsuch benefits. The burden placed on his wife forhis care grew substantially over time, and she
was also becoming psychologically drained. They
apparently came to see me because they werestarting to have more and more fights at home.
Considering the condition his wife was in, I told
him to accept the fact that it was important to ask
for help when there was something that he could
not do on his own. I thought that by doing so, hemight be able to find a new purpose in his life. I
tried telling him that rather than being locked up
in his house because of dementia, it was importantfor him to take a positive attitude toward dementia
and to actively use benefits such as the long-termcare insurance, which would increase the opportunities he has to go outside and take on various newchallenges. Despite my efforts, he did not change
his mind.
At my hospital, we aren’t able to see the same
patient over a long period of time, and since his
type of dementia was not my specialty, I introduced
him to a neurologist. I also encouraged him to start
exercising. As for his wife, I suggested that shejoin a family support group.70 Since this patient’s
dementia was technically early-onset dementia,71
I introduced him to a support group, where
people living with dementia, their families, andcaregivers get together to exchange information

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and share their experiences. In that group, theyalso have information exchange sessions just for
caregivers. I suppose they may still need additional support, but I hope that their Quality of Life
(QOL) improved by joining that group.
I think that this case shows that we can no longer
assume that a dementia diagnosis means that thepatient no longer requires care. Especially withearly-onset dementia, it is often difficult, evenfor physicians, to offer appropriate advice. This
is why it is important that physicians have a goodunderstanding of the benefits and resources available to such patients in their communities. We
should not only offer diagnosis, but also provide
extra support and attempt to help people maintaintheir QOL.
What do you think is necessary to
improve awareness levels related todementia among medical professionals?
I personally believe that the best support systemis the Dementia Link Worker system72 they havein Scotland, in which support is provided fromthe time of diagnosis throughout the course of apatient’s life, for both patients and their families.
Physicians cannot prescribe medicine to patientsin the early stages of dementia or mild cognitive
impairment, so patients may sometimes feel that
we are unkind or not doing enough. This is why I
think it is necessary to have a support system for

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those in the early stages of dementia, especiallythose who cannot receive support from community-based integrated care centers.73
In this respect, I think that Kobe City, where
I’m based now, is doing well in involving healthcare professionals for dementia care. There are
77 community-based integrated care centers(called Anshin Sukoyaka Center in Kobe City72) inKobe. The current Director-General of the Kobe
Biomedical Innovation Cluster (a program thatworks to attract healthcare companies) has been
involved in the program for a long time, and has
established a good network of connections, so
we have managed to attract specialists actively
involved in dementia care in Kobe City. I have theoverall impression that there are many dementia
specialists in Kobe City compared to other areas,
and they are often willing to collaborate with local
governments. Kobe City also strongly believes that
it is essential to gain support from and collaborate with specialists in order to promote effective
health policies. I feel that there are probably not
many municipalities that have involved as many
specialists in their efforts to promote dementia
innovations as Kobe City has.
This spring (2017), one of the physicians who wasin my class at Kobe University will start working
as a member of the city government, specializing in dementia care. I hope that by having
someone like her join the local government, we

INTERVIEW

can strengthen collaborations with community
healthcare providers, leading to the promotion of
new interventions. In other municipalities, I often
hear that people struggle to bring specialists andlocal governments together for collaborations.
When I was working in the university hospital,
I also attempted to organize new programs, butthere are limits to how much a university alone
can do. We could only hold lectures or do things
like that. Universities have expertise, but ingeneral, there are not many that work with local
municipalities. On the other hand, municipalities
have both human and financial resources. When
we bring people with expert knowledge together
with organizations that have sufficient humanand financial resources, it becomes much easier
to conduct projects. I have had opportunities towork with municipalities, so I know how important and fun that is, but such opportunities may
not be abundantly available for many physicians.
I think, therefore, that it is important to increase
opportunities for universities and medical institutions to interact more with local governments inthe future.

We conducted a literature review on
the early detection and diagnosis ofdementia. One of the reasons that medical
professionals said they could not actively
engage in early detection and diagnosis
was that there is no point in diagnosing apatient if there is no effective medicine totreat them. What is your opinion on this?

Even though we
don’t have anytreatments available,
there have been various
initiatives carried out
as a part of policies
and projects for early
detection and diagnosis.
These initiatives are
sometimes referred toas “social therapies.”

It is also important to improve the support
system in place for people after they receive theirdiagnosis. The majority of people who come toour hospital have mild or early-stage dementia.
Most of them are not able to receive a nursing
care requirement authorization, and thus are notentitled to use long-term care insurance. This isbecause eligibility for long-term care insurance
is determined based on the extent of a person’s
disability, and it is difficult for a dementia patient,
especially at an early stage, to be judged as qualified, as it is often difficult to assess the severity ofmental health disorders. In order to help people
understand that early detection and diagnoses areimportant, we must improve the support systemfor people after they have received a diagnosis, andwork to improve their cognitive functions basedon evidence. After being diagnosed with dementia,
if there is no way for a person to receive a nursing

Even though we don’t have any treatments available, there have been various initiatives carriedout as a part of policies and projects for early
detection and diagnosis. These initiatives are
sometimes referred to as “social therapies.” It
is important to prove the effectiveness of such
efforts. I have begun to hear comments from local
governments to the effect that there is no point ininvesting in programs unless their effectivenesshas been clearly proven. We normally use RCTs
(Randomized Controlled Trials)73 in the fields of
medicine and biology to prove the effectiveness oftreatments. I think that even with social dementia interventions, it is important that we assess
their effectiveness using RCTs and other types ofstudies. Some of these projects have relatively big
budgets, so it is urgent that we assess their effectiveness based on evidence.

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care requirement authorization, and no medical
interventions or social care support offered, they
will have no option but to despair.
Are there any other barriers to early
detection and diagnosis of dementia?
I think that stigma and prejudice against people
living with dementia causes people to delay visitswith their doctors. I feel that this is not only an
issue in Japan, but also present in other developed
countries. I think that people with dementia often
show strong resistance to treatment because theyfear becoming dependent once they begin to experience more symptoms, and they fear being looked
down upon. This could apply to other diseases aswell. That said, people can only start to receive
benefits after they are medically diagnosed. Oncepeople are diagnosed, it makes it much easier for
medical professionals to intervene and provide
necessary medical care.
One of the aims of the IPIST76,77 is to help people
overcome these barriers. As the name suggests, it
is a team of medical professionals, such as physicians, nurses, public health nurses, care workers,social workers, and others, who come together
to provide appropriate medical and nursing carefor those with dementia, and those who may havedementia, based on information obtained fromlocal governments. For example, rather than waiting for patients at clinics, nurses, public healthnurses, and nursing care workers, along withsupport from a physician, visit the homes of people
with suspected dementia. This makes it easier todetect dementia at an early stage, since the patientand family in need of assistance do not have to
visit a hospital by themselves. It lowers the bar
for receiving medical assistance. Through repeat
visits, the nurses build trust and good relationships with patients and their families, which often
leads the patient to visit a hospital for an appropriate examination and diagnosis. In the case of
Kobe City, members of the Social Welfare Council
sometimes accompany patients and their families
to the hospital, which seems to be encouraging forpeople with dementia. Even after the diagnosis,
medical professionals such as physicians, public

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health nurses, and rehabilitation professionals
continue to work as a team to support patientsand their families. I think that this is an excellent
system. However, the truth is, it is not yet wellknown to the public, so the current system has not
yet achieved its full potential.
With respect to early detection and diagnosis,
there is still so much that we can do, not only
related to the psychological barriers that patientsand families face, but also from an institutional
point of view. For example, the best way to findpeople living with dementia who have not yet
received appropriate medical care or nursing careservices would be to conduct a full survey of all thehouseholds in the city. This may be easy in a small
municipality, but it is another thing in Kobe City.
Currently, information is obtained through the
networks of specialists and from various public
institutions. In the future, I think that the one big
factor that could help encourage early detection
and diagnosis would be to enrich systems andmechanisms to make it easier for specialists to get
more information.
Interventions against dementia havebeen advancing based on the mayor’s
draft, “Dementia-friendly Community
Regulations.”78 Could you please explain
the background of these regulations,the current situation, and the future
direction for such policies?
Most of the time, local policies are made based onnational policies. Depending on the municipality,
there are differences in what can be achieved.
Since Kobe City is an ordinance-designated city,
we have sufficient human and financial resources. Therefore, it seems like most of the projects
recommended by the national government are
implemented. As a physician, I think that Kobe
City is particularly active in the field of dementia,
compared to other municipalities.
I became involved in Kobe City in 2012. At thattime, early detection and early diagnosis werealready two pillars of national policy, and projects were under way to identify people at theearly stages of dementia and connect them to

INTERVIEW

appropriate medical and nursing care. In the earlystages of dementia, it is often the case that neither
people with dementia nor their families notice
their condition, and as such, consultations areoften delayed. Also, in the case of Japan, there aremany older adult households. One third of thesehouseholds are people living alone, and anotherone-third are two-person households.79 This oftencauses a delay in the detection of early symptoms,
which is a major issue for us.
Kobe’s“Dementia-Friendly
Community
Regulations” are scheduled to go into force in2017. There have been cases where people livingwith dementia have caused accidents, including
one in 2007 in which a person with dementia
died after stepping in front of a train.80 For thisreason, when considering urban development, it
is important to also create a support system forcases in which people living with dementia cause
accidents.

We have set the final goal as the creation of communities where people with dementia and their family members can live safely and comfortably. From
this year forward, a council, which I am a memberof, will meet on this issue. Kobe City is advancing
the concept of the Kobe Biomedical Innovation
Cluster81 in its work to promote community development, centering on medical industry.
Thanks to this and the increasing number ofhealthcare companies located on Kobe Port Island,I think that people here have a good understanding
about healthcare. With regard to diagnostic andtherapeutic drugs, we hope to continue building a
network in Kobe that can enable pharmaceuticalcompanies, universities, and research institutes
to share data for the development of new drugs
and to conduct clinical trials efficiently. One of themany good features of Kobe City is that there is agood environment for the promotion of community healthcare and community development, andfor research and development in clinical fields.
The city itself is very active in its efforts related todementia. I hope to continue contributing to thisfield by providing appropriate training to others
and by linking medical professionals with ourcommunities.

PROFILE: KIYOSHI MAEDA, MD, PhD
Dr. Maeda graduated from Kobe University School of Medicine in 1971.
In 1976, he completed his PhD at the Graduate School of Medicine, Kobe
University. From 1976 to 1978, he worked as a researcher at Michael
Leasing Medical Center in the School of Medicine of the University of
Chicago. From 1983 to 1988, he served as a lecturer at Kobe University
Medical School Hospital. From 1986 to 1987, he was a visiting researcher
at the National Institutes of Health (NIH). From 1993 to 1998, he became
the Deputy Director of the Hyogo Prefectural Elderly Brain Function Center. From 1998 to 2010, he
was a professor at the Graduate School of Medicine, Kobe University. Between 2006 and 2010, he was
Deputy Director at the Kobe University Medical School Hospital. Since 2010, he has been a professor
at the Kobe Gakuin University School of Integrated Rehabilitation. Today, he is a professor emeritus
at both the Integrated Rehabilitation Faculty at Kobe Gakuin University and also at Kobe University.
He also serves as a monitoring supervisor for Kobe City dementia measures, and serves as the fourthsubcommittee chairman for the Kansai Health and Medical Care Innovation Council.

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REFERENCES
61. Sawayaka Fukushi Foundation home page:
http://www.sawayakazaidan.or.jp/.
62. Aging rate: A value that shows the proportion of theover-65 population. When this value exceeds 7%, a society
is considered to be an “aging society.” When it exceeds
14%, a society is considered to be an “agedsociety.” And when the rate is over 21%, the society
is considered a “super-aged society.” (2016 White
Paper published by MWHL, Chapter 1: The current
status of aging in Japan: http://www8.cao.go.jp/
kourei/whitepaper/w-2016/zenbun/28pdf_index.html).
63. Initial phase intensive support team (IPIST): A teamof healthcare professionals that visits people suspectedof having dementia due to complaints from family
members and others, to provide initial comprehensive
and intensive support (including assessments andfamily care) for about six months, enabling people withdementia and their families to be able tolive independently. (MHLW. “About the initial
phase intensive support team.”
http://www.mhlw.go.jp/file/06-Seisakujouhou12600000-Seisakutoukatsukan/0000035310.pdf).
64. MHLW set up a study group to reconsider the term
“Chihou” (senile). This is because the term Chihou
in Japanese includes some connotations that could
be considered discriminatory, and thus the name wasconsidered a barrier for early detection and diagnosis. In
December 2004, this group compiled a report stating that
“Ninchi-shou” (cognitive disease) was a more appropriate
term than “Chihou-shou” (senile disease) MHLW.
“Report on the Study Group on Terms toReplace ‘Chihou’.”
http://www.mhlw.go.jp/shingi/2004/12/s1224-17.html).
65. National Center for Research and Development, National
Center for Long-Term Medical Research, Monowasure
Center. “The first step to living with dementia.
Chapter 1, Prevalence of dementia by age group.”
http://www.ncgg.go.jp/monowasure/news/documents/0511-5.pdf.
66. In its New Orange Plan, MHLW listed “the improvementof the ability to work with dementia among family
doctors, and the fostering of physicians to support people
with dementia,” “the improvement of the ability ofdentists and pharmacists to respond appropriately to thosewith dementia and their families,” and “the improvementof the ability of nurses to respond appropriately to thosewith dementia and their families,” as important points
under Section II, “Provision of timely and appropriate
medical and nursing care according to the state ofdementia.” In addition, MHLW aims to increase thenumber of family doctors who have attended training
courses on dementia to 60,000 people, and aims to provide
training programs for physicians on supporting people
with dementia to 5,000 people. MHLW. “Comprehensive
Strategy for Promoting Dementia Measures—Towards
the Creation of Dementia Friendly Community ~ (NewOrange Plan) (Overview).” http://www.mhlw.go.jp/file/06Seisakujouhou-12300000Roukenkyoku/0000079008.pdf).

68. Dementia specialist: In Japan, academic societies areorganized based on expertise. In the field of dementia,
there are several academic societies focusing on
clinical aspects, including the Japan Society for
Dementia Research, and these societies certify physiciansas dementia specialists if they have acquired a certain
level of experience and knowledge with dementia. Suchphysicians are called dementia specialists (Ninchishou
senmoni). Japan Society for Dementia Research.
“Japan Society of Dementia, Dementia Specialization
Scheme.” http://dementia.umin.jp/specialist.html).
69. Long-term care insurance scheme: One of the public
insurance schemes in Japan. Payers prioritize people
over the age of 65, followed by those aged 40 to 64 years
old. People in the first category can obtain a certificate, but
for those in the second category, only become
eligible for the scheme when nursing care is needed
due to illnesses brought on by aging. MHLW. “Whatis the long-term care insurance scheme.”
http://www.mhlw.go.jp/file/06-Seisakujouhou12300000-Roukenkyoku/201602kaigohokenntoha_2.pdf.
70. Alzheimer’s Association Japan:
http://www.alzheimer.or.jp/.
71. Early-onset dementia: This refers to cases in which
dementia is diagnosed in a person younger than 65
years old. (MHLW. “Outline of survey results on theactual conditions of early-onset dementia andmeasures against early-onset dementia laid out.”
http://www.mhlw.go.jp/houdou/2009/03/h0319-2.html.

75. Randomized controlled trial: In an RCT, the subjects ofa study are randomly divided into two groups. One group
receives the treatment or prevention to be evaluated (theintervention group) and the other group does not (thecontrol group). Measures such as disease morbidity rates,
mortality rates and survival rates are assessed
after some time to evaluate the effectiveness of theintervention. For example, if researchers wanted toinvestigate the effectiveness of a drug that apparently
prevented a certain cancer, the outcomes of thecontrol group (receiving conventional treatment)
and the intervention group (receiving the newdrug) would be compared, and if the relapse rate
dropped for the intervention group, the drug would beconsidered to not be ineffective. National Cancer ResearchCenter Cancer Information Service Glossary, “Randomized
controlled trial.” http://ganjoho.jp/public/qa_links/
dictionary/dic01/randomized_controlled_trial.html.
76. MHLW. “Conceptual framework for the initial
phase intensive support team.” http://www.mhlw.
go.jp/topics/kaigo/dementia/dl/gainenzu.pdf.

77. Yukihiko Washimi. “The role of dementia specialists.”
Igakunoayumi. (2016) Vol.257 No.5 568-574.
78. Kobe City. “Designing dementia-friendly
communities.” http://www.city.kobe.lg.jp/
information/press/2017/01/20170125132001.html
79. Cabinet Office. “2016 Aged Society White
Paper.” http://www8.cao.go.jp/kourei/
whitepaper/w-2016/html/zenbun/s1_2_1.html.
80. In December 2007, the family of a person with dementia
was sued by a railroad company for causing financial
damage when the person stepped onto the tracks andwas hit by a train. In March 2016, the Supreme Court
stated that the family did not have an obligation tosupervise their family member. Court casetrial information. http://www.courts.go.jp/
app/files/hanrei_jp/714/085714_hanrei.pdf.
81. Kobe City. “Kobe Biomedical Innovation Cluster.”
http://www.city.kobe.lg.jp/information/project/iryo/.

72. Dementia Link Worker: A scheme started in Scotland,in which “Link Workers” specializing in providing
initial support for those who have just been diagnosed
with dementia offer help to people who were recently
diagnosed (including everyday support and mental
and physical care). Alzheimer Scotland: http://www.
alzscot.org/services_and_support/recently-diagnosed.
73. Community-based integrated care system: The purpose ofthis system is to comprehensively support the
improvement of public health and promote welfare among
the elderly by conducting comprehensive consultations
for senior citizens in the community, advocate for theirrights, develop regional support systems, and provide
necessary assistance for care. Such centers are being
set up as a core institution for community healthcare
by municipalities MHLW. “Community Comprehensive
Care System 2. Community-based integrated carecenter.” http://www.mhlw.go.jp/stf/seisakunitsuite/bunya/hukushi_kaigo/kaigo_koureisha/chiiki-houkatsu/.
74. Kobe City “Anshin Sukoyaka Center.”
http://www.city.kobe.lg.jp/life/
support/carenet/ansuko-center/.

67. Lewy body dementia: A type of dementia. Dementia
with Lewy bodies (DLB) was first discovered by
Mr. Kenji Kosaka in 1975, and has attracted global
attention in recent years. Currently, it is estimated that
there are approx. 500,000 patients in Japan. Dementia
with Lewy Bodies Family Association: What is Lewy
body dementia? http://www.dlbf.jp/about_dlb1.html.
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VII

RECOMMENDATIONS AND CONCLUSIONVII

RECOMMENDATIONSAND CONCLUSION

In this report, we reviewed the literature on theearly detection and diagnosis of dementia, as well
as relevant programs published in peer-reviewed
journals. We additionally conducted interviews
with key opinion leaders and informants, and highlighted innovative case studies in Japan.
Our recommendations are as follows:

THE GOAL
1. REDEFINE
OF DEMENTIA CARE
AND TREATMENT

THE IMPORTANCE
2. PROMOTEOF A SOCIAL AND
COMMUNITY-BASEDAPPROACH FOR DEMENTIA
PREVENTION, DETECTION,
CARE, AND SUPPORTOur review demonstrated that a key obstacle for early detection and diagnosis of dementia is hesitation on the part of
Health Care Providers (HCPs), especially medical doctors,
to act in the absence of a cure. To address this concern, key
informants suggested that it is important to redefine the roleof HCPs. For instance, if HCPs believe that their role is to“cure” dementia, until a treatment is ready, there is, in fact,nothing that HCPs can do from a biomedical standpoint.
Instead, we need to shift the role of HCPs and redefine thegoal of dementia care and treatment, to improve qualityof life of patients and caregivers. With this new definition,
HCPs and other practitioners can begin to see that there aremany ways in which they can offer support.
In line with the first recommendation, to achieve the redefined goal, it is important to promote the importance ofsocietal and community-based care and support in Japanand other countries that are confronting population aging.
Through global promotion we can create a strong, supportive norm for this agenda.

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VII

RECOMMENDATIONS AND CONCLUSIONAEVIDENCE-BASED
3. USE
SOCIAL AND COMMUNITYAPPROACHES, AS WELLAS EARLY DETECTION AND
DIAGNOSIS PROGRAMSA PLATFORM
4. CREATETO SHARE DATA AND
ACTIVITIES (INCLUDING PPP)

PUBLIC5. ACCELERATEPRIVATE PARTNERSHIPSIn order to establish the aforementioned norm, it is important to provide “evidence” with social aspects – generating
scientific evidence for policy and program development aswell as assessment of policies and programs using data. It is
important to develop evidence-based policies and programsfor early detection and diagnosis (i.e., using behavioral
sciences and other public health approaches to support
programs). Also, for social and community-based approaches, like the Taketoyo salon project (in the case study), moreevidence of the efficacy of the approaches is needed to assess
the effort and inform future endeavors.
It is important to create a platform and database to sharefindings among researchers and relevant organizations. This
would be helpful not only for medical research networks,
but also public health research. The platform would jumpstart the emerging dementia field. Japan can lead this andestablish itself as a leader in aging-related research.
Finally, the involvement of the private sector is critical to
execute this particular recommendation. Their expertiseand network can be useful for developing new activities,
disseminating programs, and for creating a public-private
partnership framework, etc. In Japan, many corporations
are already engaged in dementia-related activities andprograms. As a next step, we recommend that these corporations partner with researchers to evaluate the efficacy ofthese activities and programs, and assess how impactfuleach of them has been (or will be) in terms of behavioral andhealth outcomes, as well as cost effectiveness. Visualizing
their contributions through these evaluations will generate
evidence that can contribute to the sustainability of these
programs—a win-win that would benefit not only publichealth, but also private interests.

All these recommendations are interconnected. We sincerely hopethat actors in the field of dementia will strongly consider theserecommendations, and, together, contribute to the creation of adementia-friendly society.
October, 2017

SOCIAL MEDICINE FOR DEMENTIA AUTHORS
120 | SOCIAL MEDICINE FOR DEMENTIAAPPENDIXA

APPENDIXA

APPENDIXACKNOWLEDGMENTS

We appreciate your willing participation in the key
informant interviews (names appear in Japanesealphabetical order), in addition to Dr. Kiyoshi
Kurokawa, Dr. Katsunori Kondo and Dr. Kiyoshi
Maeda.
Mamoru Ichikawa

Takuya Nakamura

Japan Broadcasting Corporation
Program Director

Executive Director, Policy Planning Department
Fukuoka City Public Health & Welfare Bureau

Toshiyuki Ojima, MD, PhD

Masahiro Kimoto

Professor, Department of Community Healthand Preventive Medicine,
Hamamatsu University School of Medicine

Director, Policy Planning Section
Policy Planning Department

Masahiro Shigeta, MD, PhD
Director, Department of Psychiatry,
The Tokyo Jikei
University School of Medicine

Fukuoka City Public Health & Welfare Bureau
Yoshiki Niimi, MD
Research Associate, Department of
Neurology, Fujita Health University, Former
Senior Specialist for Dementia, Officefor Dementia Policy, Ministry of Health,Labour and Welfare (MHLW), Japan

SUPERVISORSAUTHORS
Health and Global Policy Institute

McCann Global Health

Kohei Onozaki (MSc), Board Member

Andrew Schirmer, President

Ryoji Noritake (MSc), President,
Health and Global Policy InstituteHana Hayashi (ScD, SM., MEd.),
Associate Director, McCann Global HealthEri Yoshimura (MSc), Manager, Healthand Global Policy InstituteJames Etheridge (MPH),
Strategy & Account Associate

Manami Takamatsu (MPH), Manager,
Health and Global Policy InstituteKento Nakamura, Scientific Associate,
McCann HumanCare (U.S.)

Amina Sugimoto (MSc), Senior Associate,
Health and Global Policy InstituteSpecial Thanks

Shunichiro Kurita, Associate, Health and Global
Policy Institute, Master’s Student, Graduate
School of Public Management, Waseda University
Ikuko Tsumura(MMA), Administrative
Officer, Health and Global Policy InstituteCherri Zhang, Master’s Student, Graduate Schoolof International Health, University of Tokyo

Yongjoo Kim (ScD, MPH), Postdoctoral
Research Fellow, Harvard T.H.
Chan School of Public HealthAkihiro Shimoda (MPH), Researcher,
Division of Social Medicine, Graduate Schoolof Medicine, the University of Tokyo
Mio Tamori (MSc), Strategic Planner,
McCann Healthcare Worldwide JapanCONTRIBUTORS
Health and Global Policy Institute

McCann Healthcare Worldwide Japan

Matthew McEnany (MPH), Epidemiologist

Junji Yokokawa,
Chief Operating Officer, Rx Healthcare

Yukiko Yoshida (RNM, MPH), Program Specialist

Shigeru Sakata, Business Director
Ichiro Kawachi (MD, PhD.)John L. Loeb andFrances Lehman Loeb
Professor of Social Epidemiology
Chair, Department of Social
and Behavioral Sciences,
Harvard T.H. Chan Schoolof Public Health

Kasisomayajula
Viswanath (PhD.)
Lee Kum Kee
Professor of HealthCommunication, Department ofSocial and Behavioral Sciences,
Harvard T.H. Chan Schoolof Public Health and in the
McGraw-Patterson Center for
Population Sciences at the DanaFarber Cancer Institute (DFCI)Faculty Director, HealthCommunication Core,
Dana-Farber/Harvard
Cancer Center (DF/HCC).

122 | SOCIAL MEDICINE FOR DEMENTIA

Naoki Kondo (MD, PhD.)

McCann Global Health

Associate Professor, Department
of Health and Social Behavior

John Washburn, Executive Creative Director

Associate Professor and Chair,
Department of Health Educationand Sociology, School of Public
Health, The University of Tokyo

Masataka Sato, Senior Account Executive

Alexis Reid, Art Director
Zoe Hamann, Account Director
Matt Kavanaugh, Project Manager
Essie Quakyi, Intern

Research Associate, Departmentof Neurology, Fujita Health
University, Former Senior
Specialist for Dementia,
Office for Dementia Policy,
Ministry of Health, Labourand Welfare (MHLW), Japan

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A

APPENDIXALEADING SPONSOR
Eli Lilly Japan
Eli Lilly Japan K.K. is a Japanese affiliate of Eli Lilly and Company
in the U.S. We contribute to Japanese society through innovative
medicine, helping people live longer, healthier, and more active lives.
For nearly 30 years, Lilly has been committed to Alzheimer’s diseaseresearch and development. During this time, we’ve made significant
scientific advances and we’re not slowing down. In fact, our commitment
is stronger than ever. Through perseverance and discovery, our goal is tomake life better for those affected by Alzheimer’s disease around the world.

124 | SOCIAL MEDICINE FOR DEMENTIAAPPENDIXSUPPORTING SPONSOR

McCann Healthcare Worldwide Japan
McCann Health is the world’s most connected community of Healthcare
experts united by one vision: to help our client’s brands and businesses
play a meaningful role in people’s lives.

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