Dementia
Second edition

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© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

Contents
1. Dementia Policy in Japan
1.1. Past Changes in Japan’s Dementia Policy
1.2. The New Orange Plan

2. Activities related to dementia measures undertaken by the Health andGlobal Policy Institute2.1. The Research Project on the Construction and Use of a Model for an International
Public-Private Partnership (PPP) in Dementia Research
2.2. International Collaboration
2.3. Awareness-raising activities© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

Dementia Policy in Japan
As average life expectancies grow longer, it becomes increasingly necessary for society to face issues that arise inaging populations. Dementia is a representative example of these issues. An estimated 46,086,000 people livewith dementia worldwide today and their number is projected to increase to 74,070,000 people by 2030. Earlyonset dementia must also be addressed.
Currently, there are no drugs for directly treating the primary diseases causing dementia such as Alzheimer's
disease. The development of new drugs alone, however, is insufficient. Society must be reconstructed in a waythat enables people to effectively cope with the urgent issue of dementia on a global scale.

1.1

Past changes in Japan’s Dementia Policy➢

2000: The Long-term Care Insurance Act comes into effect
After its enactment in 1997, the Long-term Care Insurance Act came into effect in 2000. It aimed
to create a system for enabling society as a whole to provide long-term care to elderly people.
Before this law came into effect, the societal expectation in Japan was that elder care should be
provided within the household, particularly by women. Factors such as increased workforce
participation for women and declining numbers of multi-generation households resulted in ashortage of caregivers. This resulted in greater calls for socialized care. Meanwhile, there was ashift from the previous “sochi” or “placement” system of elder welfare. Under this system, care
was provided according to predetermined budgets decided by local governments. After the shift,elderly people began to be perceived as proactive rights holders and as “parties to contracts.”
Greater emphasis began to be placed on their independence and rights. For more details, refer tothe “Long-term Care Insurance Act” section on JHPN.

➢

2004: The Japanese terminology for “Dementia” is changed
The Ministry of Health, Labour and Welfare (MHLW) formed the Committee for Examining Affairs
Concerning the Term “Chiho” in 2004. The Committee identified three problems with the term“chiho”: that it is a derogative that causes feelings of contempt, that it does not accurately portraythe state of the person being described, and that it obstructs early detection and early diagnosis1.
The Committee then conducted a wide-ranging public opinion survey and other research andrevised the term for dementia to “ninchi-sho,” meaning “cognitive disorder.” When revising theterm, they also took the opportunity to create plans for promoting the correct understanding of
dementia and for upholding the rights of people with dementia.

➢

2008: The Emergency Project for Improvement of Medical Care and Quality of Life for People
with Dementia report is released
The Emergency Project for Improvement of Medical Care and Quality of Life for Persons with
Dementia began in 2008 to promote future measures for dementia more effectively. It released areport that identified early diagnosis as a key starting point for promoting appropriate measuresfor dementia and named it a basic principle for dementia policy. It identified five specific action
items: (1) Accurately understand the condition of the person with dementia, (2) Accelerate
research and development, (3) Promote early diagnosis and the provision of appropriate
healthcare, (4) Normalize appropriate care and support for people with dementia and their families,and (5) Implement measures for early-onset dementia.

➢

2012: The direction of future dementia measures is specified
Based on the aforementioned Emergency Project report, a proposal entitled the “Future Direction

1 MHLW ”The future direction of Dementia Measures” http://www.mhlw.go.jp/stf/shingi/2r9852000002fv2e-att/2r9852000002fv5j.pdf(Accessed:

July 2, 2018)© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

of Policies on Dementia” was prepared to re-examine past dementia policy and propose thefoundation of policy to come. It was presented by the Dementia Measures Investigation Project
team which was established by the Team for Investigating the Creation of a New Regional Mental
Healthcare System in 2010 to deepen discussion on dementia measures and recreate the path for
dementia treatment. In the past, admission to a nursing home or hospital was considered aninevitable step in dementia treatment. Hospitalization was the final step in a care path in whichpeople were moved from their home to a group home and then into a nursing home, general
hospital, or psychiatric hospital. This team set out to recreate that pathway by rebuilding society
so that the rights of people with dementia are respected and so that those people can continue
living in familiar spaces and communities. The new care pathway would provide appropriate careaccording to the condition of the person receiving it. The plan also specified a goal to encourage
efforts to research the promotion of such a policy2.
➢

2012: The Five-Year Plan for the Promotion of Dementia Measures (Orange Plan) is enacted
Based on 2012’s Future Direction of Policies on Dementia, the Five-Year Plan for the Promotion of
Dementia Measures (the Orange Plan) was developed that same year. The Orange Plan consistedof seven pillars: (1) Create a standardized dementia care pathway and make it widespread, (2)Promote early diagnosis and intervention, (3) Improve community-based healthcare services toprovide daily support, (4) Develop long-term care services that support daily living, (5) Strengthen
support for daily living and family support in communities, (6) Reinforce measures for early-onset
dementia, and (7) Accelerate the development of human resources for providing healthcare andlong-term care.

➢

2013: The G8 Dementia Summit is held
The first G8 Dementia Summit was held in the United Kingdom in December 2013. In addition torepresentatives from every G8 nation, the European Commission, the World Health Organization(WHO), and Organization for Economic Co-operation and Development (OECD), the Senior Vice
Minister of Health, Labour and Welfare from Japan also participated. He explained population aging
in Japan, the then-current situation surrounding dementia, and the Orange Plan. The Summit
agreed on the necessity of a new, international approach in which issues related to aging such as
dementia research and accelerating research are pursued as a common goal for every nation
instead of letting these efforts be shouldered by a single nation.

➢

2014: The Global Dementia Legacy Event Japan is held
In response to the G8 Dementia Summit, the Global Dementia Legacy Event Japan was held inTokyo in November 2014 with the theme of planning a new care and prevention model. HGPI
supported this event and HGPI Chairman Kiyoshi Kurokawa participated by giving a speech. A newstrategy consisting of three pillars was announced after the event. Those pillars were: (1) Constructa circular medical system that offers seamless service dependent on the condition of the person
receiving healthcare, in which healthcare and long-term care services coordinate organically and inwhich early diagnosis and prevention are promoted, (2) Create a holistic, cross-ministerial strategy
for building dementia-friendly communities, and (3) Promote policies that emphasize theperspectives of people with dementia and their families.
Together with this event, HGPI and the OECD held the Taking Action on Dementia: Opportunities
for Social Investment – A G7 Global Dementia Legacy Event Private Sector Side Meeting. This
meeting provided an opportunity for the private and public sector to discuss private sector-led
strategies and approaches for addressing various issues related to dementia using social

2 MHLW ”The future direction of Dementia Measures” http://www.mhlw.go.jp/stf/shingi/2r9852000002fv2e-att/2r9852000002fv5j.pdf(Accessed:

July 2, 2018)© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

investment.
➢

2015: The Comprehensive Strategy to Accelerate Dementia Measures (the New Orange Plan) isannounced
In January 2015, a new plan based on the strategy announced after the Global Dementia Legacy
Event Japan called the New Orange Plan was unveiled. The New Orange Plan was created after awide-ranging survey was conducted to collect stories and opinions from people with dementia,
their families, and other related parties. It emphasizes the perspectives of people with dementia
and their families. Although the New Orange Plan is effective until 2025, its numerical targets andother targets will be reviewed every three years. A unique feature of the New Orange Plan is that
it is not driven by efforts from the MHLW alone, but that it involves multiple government agencies,
including the Cabinet Secretariat; the Cabinet Office; the National Police Agency; the Financial
Service Agency; the Consumer Affairs Agency; the Ministry of Internal Affairs and Communication(MIC); the Ministry of Justice (MOJ); the Ministry of Education, Culture, Sports, Science andTechnology (MEXT); the Ministry of Agriculture, Forestry and Fisheries (MAFF); the Ministry of
Economy, Trade and Industry (METI); and the Ministry of Land, Infrastructure, Transport andTourism (MLIT).

© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

1.2

The New Orange Plan

The The New Orange Plan is based on the utilization of Integrated Community Care Systems. It aims topromote the development of dementia-friendly communities and to improve the living environments ofpeople with dementia by enabling them to continue living in familiar spaces and environments as long as
possible. It consists of seven pillars: six measure provisions and one principle provision. The principal
provision is to “Prioritize the perspectives of people with dementia and their families.” Each provision islinked to specific systems. These pillars and measures are as follows.
➢

Raise awareness and promote understanding of dementia
This pillar aims to raise awareness of dementia so that society as a whole can remember thatdementia is a common disease.
✓ Example 1: The Dementia Supporters training programThis program trains Dementia Supporters who possess accurate knowledge and understanding of
dementia so that they can aid people with dementia and their families in communities andworkplaces.
The Dementia Supporters training program aims to train 12 million Dementia Supporters by 2020.

➢

Provide healthcare and long-term care services in a timely and appropriate manner as the person
receiving care progresses through the stages of dementia
This pillar aims to provide healthcare and long-term care services that can collaborate effectively
and provide timely and appropriate services for each stage of dementia progression. This pillar isfor replacing the system which responded to the Behavioral and Psychological Symptoms of
Dementia (BPSD) and physical complications of dementia with hospitalization in medical
institutions and nursing homes with a system that consistently provides appropriate services atsuitable facilities with a specific focus on early diagnosis and prevention.
✓

Example 1: Training primary care doctors to improve their capabilities for responding todementia
For people receiving healthcare, primary care doctors are reliable first points of contact for
medical issues and are sources of advice on health concerns3. They can introduce people tomore specialized medical centers when necessary. Prefectures and designated cities have
implemented training programs for primary care doctors (who will specialize in various fields
in the future) in order to improve their ability to respond to dementia and so that they can
become mediators between people seeking healthcare and medical specialists.
This initiative aims to train 75,000 primary care doctors by 2020.
✓

Example 2: Training dementia support doctors
These doctors exist between primary care doctors and doctors specializing in dementia. This
training project began in 2005 in hopes that these dementia support doctors can become
drivers of regional cooperation. The training course is similar to the course for training primarycare doctors and is centered on prefectures and designated cities. Dementia support doctors
are not primary care doctors. The aim of the program is to train dementia support doctors
who can be leaders in regional coordination efforts involving dementia specialists andspecialized medical institutions.
This initiative aims to train 10,000 dementia support doctors by 2020.

3 Japan Medical Association 「かかりつけ医を持ちましょう」https://www.med.or.jp/people/kakari/（Accessed：July, 10, 2018）© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

✓ Example 3: Establishing medical centers for dementia
These medical institutions will be bases for the dementia medical provider system withincommunities. They will provide differential diagnoses and other diagnoses. Dependent on
their function, their number of hospital beds, and the doctors working there, these centers
are divided into three categories: Basic, Community, and Clinical. All three types will havemedical facilities for providing comprehensive examinations related to differential diagnosis.
This initiative aims to establish 500 medical centers for dementia with at least one center inall secondary medical areas.
✓ Example 4: Establishing the Initial-phase Intensive Support Team system
These teams consist of several specialized professionals including doctors and nurses. They
support independent living by visiting people with dementia and people who are suspected of
dementia (upon family request) to assess their condition and provide comprehensive andconcentrated initial support to the families. This initial-phase support is provided forapproximately six months. This system has been established in every municipality as of 2018.
✓ Example 5: Establishing dementia care pathways
Dementia care pathways show which services are appropriate to provide according to thecondition of the person with dementia. Every municipality is responsible for establishing such
pathways. This initiative aims to understand local resources to build seamless support
frameworks and cross-occupational, coordinated frameworks that take both the stage towhich the condition has progressed and the disease timeline into account.
✓ Example 6: Training community dementia support promoters
Because community dementia support promoters fulfill a central role in efforts to construct
healthcare and long--term care support networks, improve dementia response capabilities,
and provide advisory support, they have been established in each municipality. To become apromoter, one must be a medical or welfare professional or have one’s level of knowledge andexperience recognized by the municipality as equal to a professional.

➢➢

Reinforce measures for early-onset dementia
In addition to the issues that are common among elderly people with dementia, people with earlyonset dementia face hurdles in maintaining employment and daily living as well as providing
support for their children. To provide people with early-onset dementia with support that is morewell-suited to them, counseling service counters for people with early-onset dementia and theirfamilies were established in every prefecture. Support for the families of people with early-onset
dementia, their care workers, and the companies that employ them is essential.
✓

Example 1: Establishing the national early-onset dementia call center was established andtraining early-onset dementia coordinators✓

Example 2: Publishing and distributing handbooks and guidebooks on early-onset dementia

Support dementia caregivers
Because providing direct support for dementia caregivers will improve the quality of life for people
with dementia, the physical and mental burdens placed on the people providing care to people
with dementia must be reduced.
✓ Example 1: Holding events called “Alzheimer Cafés”
These café-based events have been set up all over the country to provide places for people© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

with dementia and their families to share information and exchange opinions with thecommunity, their supporters, and specialists. Although they are mainly held by community
comprehensive care centers, in some cases, they are held by local NPOs and private enterprisesthat have started initiatives in elder support.
➢

Build communities that are friendly to elderly people, including those with dementia
Communities that are friendly to elderly people including people with dementia can be promoted
by establishing systems to provide support for daily living as a soft goal and by constructing
comfortable environments to live in as a hard goal. Fulfilling these goals will make it easier for thepeople receiving support to participate in employment and in society.

➢

Promote the research and development of prevention, diagnosis, cures, rehabilitation models,and care models for dementia and disseminate the results
Elucidating the causes of dementia and the mechanisms of BPSD will promote research anddevelopment on prevention, diagnosis, cures, rehabilitation models, and care models for dementia.

➢

Prioritize the perspectives of people with dementia and their families
In all the initiatives listed above, the perspectives of people with dementia and their families are to
be prioritized. To this end, people with dementia and their families have participated in meetings
on dementia held by the national government and local governments in recent years. In addition,
opportunities for people with dementia and their families to be involved in community-building
activities have increased in several regions. One example of these activities are special conferenceswhere people with dementia discuss experiences and challenges together with other people withdementia.

© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

Activities related to dementia measures undertaken by the Health and Global Policy
Institute
In the recent years, HGPI has focused on research and advocacy for dementia measures. As the country in which
population aging has advanced the most, dementia is a critical issue for Japan. Countries that will soon face
population aging will face the issues that Japan is currently facing. We believe that in order to build a society thatenables better living with dementia, it is crucial for multi-stakeholders to collaborate in building a platform in eachfield to seek solutions to issues related to aging. We are moving forward in a central role as a driver of global
cooperation and we are working to deepen bonds with people with dementia and their families.

2.1

The Research Project on the Construction and Use of a Modelfor an International Public-Private Partnership (PPP) in
Dementia Research➢

Research Summary
This research was conducted with support from Japan Agency for Medical Research andDevelopment (AMED) through the joint participation of HGPI Chairman Kiyoshi Kurokawa as
research and development representative and co-researchers HGPI Vice-Chairman Hiroaki Yoshida
and Yoshiki Niimi, Assistant Professor of Fujita Health University, School of Medicine.
This research program aims to propose the best possible method for establishing an International
Public-Private Partnership (PPP) that will promote dementia research in an effective and efficientmanner and incorporate their methods into a concrete framework in Japan. It also aims to spread
Japan’s knowledge so that international initiatives can be included in frameworks created abroadwhen they are proposed to related government agencies and international organizations.

➢

Research Research on projects and organizations related to dementia that make use of the PPP
model in Japan and abroad
We conducted a survey of research projects and organizations related to dementia that make useof the PPP model. The survey also included representative organizations that are making progressin research on the formation of PPPs.
✓

Dementia research programs around the world － Large-scale, multi-institutional joint
studies and partnerships© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

✓Dementia research programs around the world－Large-scale study-funding organizations
Abbreviation

IMI

EPAD

DPUK

GAP

Official Name Innovative Medicines Initiative

European Prevention of Alzheimer
The MRC Dementias Platform UK
Dementia Consortium

Global Alzheimer’s Platform
Foundation

Year of2008
Establishment

2015

2014

2013

Randall Bateman, Charles F.,
Joanne Knight

John Dwyer

The European Union, represented
by the European Commission andManagement the European Federation for
Dr. Serge Van der Geyten
Pharmaceutical Industries andAssociations

the National Institute on Aging(NIA), the National Institute of
Bioimaging and Bioengineering(NIBIB), Araclon Biotech,
Collaborated Janssen Pharmaceutical, Eisai
organizations Pharma, Bayer Pharma…etc

35 organisations including Eurpean Cambridge Cognition,
Union, EFPIA companies and
MedImmune, the global biologics Janssen, Eli Lilly and Company,
Universities, and researchresearch & development arm of Roche, Lundbeck
organisations
AstraZeneca, GlaxoSmithKline,
Invicro, Ixico, Janssen
Pharmaceuticals, in collaboration
with Johnson & Johnson
Innovation, SomaLogic.

Aims

To develop next generation
vaccine, medicine, treatments

Abbreviation

To improve the understanding of
the early stages of Alzheimer’s
disease and deliver new
preventative treatments

AMP

To help define the rate ofprogression of mild cognitive
impairment and Alzheimer’s
To speed up the delivery of
diseaseinnovative therapies to those
To develop improved methods for
afflicted with Alzheimer’s byidentifying the appropriate patient
reducing the time and cost of
populations to participate in clinicalAlzheimer’s disease (AD) clinical
trials.
trials.
To standardize the methods used
for conducting imaging scans andgathering and testing fluid samples

IADRP

GAAIN

International Alzheimer's andOfficial Name Accelerating Medicine Partnership Related Dementias Research
Portfolio

Global Alzheimer’s Association
Interactive Network

Year of2014
Establishment

2010

2010

Management Maria C, Freire

NIH, the National Institute on
Ageing, and the Alzheimer’s
Association

USC Laboratory of Neuro Imaging,
USC Mark and Mary Stevens
Neuroimaging and Informatics
institute, Keck School of Medicine
of USC

Food and Drug dministration(FDA),
National Institutes of Health (NIH),
40 organizations from 10 countries
AbbVie, Biogen, Bristol-Myers
including, Administration on
Squibb, GlaxoSmithKline, Johnson
Ageing, CDC, Alzheimer’s
24 organizations including,Collaborated & Johnson, Eli Lily and Company,
Association, BrightFocus
Alzheimer’s Association, DIAN, Aibl,
organizations Merck, Pfizer, Sanofi, Takeda
Foundation, Canadian Institute of ADNI, I-ADNI, CAMD
Pharmaceutical
Company,
Health Research, Alzheimer’s
Alzheimer‘s Association,
Research UK
Alzheimer’s Drug Discovery,
American Diabetes Association

Aims

Enable public and private funders
To transform the current modelof Alzheimer’s research tofor developing new diagnostics and coordinate research planning,
treatments by jointly identifying
leverage resources, avoid
and validating promising biological duplication of funding efforts andtargets for therapeutics
identify new opportunities inpromising areas of growth.

Promotes big data sharing among afederated, global network of data
partners who are studying
Alzheimer’s disease and otherdementias.
To address the need to coordinate
and leverage existing resources toadvance research into the root
causes of the disease, improve
diagnostics and discover novel
therapeutics, and find better ways
to deliver care.

© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

✓Dementia research programs in Japan – Large-scale, multi-institutional joint studies,
partnerships, and large-scale study-funding organizations
Abbreviation J-ADNI

IROOPJapanese-Alzheimer’s Disease
Official Name
Neuroimaging Initiative

Organized Registration for theAssessment of dementia on Nation-wide
Integrated Registry Of Orange Plan
General consortium toward Effective
treatment in Japan

Year of2007
Establishment

2016

Management University of Tokyo

National Center for Geriatrics andNational Center of Neurology and Gerontology, National Center of Neurology
Psychiatry (NCNP), Japan Agency and Psychiatry (NCNP), Tokyo dementia
forMedicalResearchand care research and training
Development
center, Ministry of Health, Labor andWelfareCollaborated
30 academic organizationsorganizations

National Center for Geriatrics andGerontology, Yokohama Brain
30 academic organizations
and Spine Center, Osaka City
University Faculty of Medicine

Aims

ORANGE Registry

2015

To clarify symptoms that appear
To conduct joint clinical studies
before the onset of dementia and To establish appropriate care methods forwith other facilities to develop
to elucidate risk factors by dementia by collecting information on
criteria for evaluating theimproving lifestyles, habits, etc.
people in various stages of healthefficacy of AD drugs. To track
To promote clinical research and including: Healthy, Preclinical stage, MCI,
healthy elderly patients, MCI
clinical trials for the development Mild dementia, Moderate dementia, andpatients, and early AD patientsof drugs expected to improve Advanced dementia.
for two to three years.
cognitive function.

This research identified that the essential element of an effective PPP is clarity in organizational values,
mission, and goals.
Furthermore, those interviewed commented on the strong need for Japan to be involved ininternational research collaborations including those using the PPP model. To achieve this, it isimportant to strengthen the basic foundations of clinical trial research in Japan, including the practices
by which participants and workers who can collaborate internationally are recruited. It is also crucial
to secure stable funding streams to make all of this possible.
➢

Collection of case studies on dementia research and research promotion efforts led by PPPs
In a study of fields that can be expected to be promoted by a PPP excluding drug discovery, we
conducted interviews and other surveys with care service providers and related services, local
governments, town planning experts, robotics experts, and IoT researchers. We also conducted asurvey of precedent cases of research promoted by PPPs on topics other than dementia and usedthem as references for modeling the construction of a dementia PPP.

© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

✓ Challenges facing stakeholders undertaking advanced efforts in areas related to dementia andtheir needs
Stakeholder
Challenges and needs
People with dementia
and their families







Medical and care service
providersCompanies and academia
involved in clinical trials
and clinical research










Companies providing
technology and services
that promote andimprove care






Self-governing bodies
that implement
progressive initiativesAs a whole

There is a lack of support other than public services.
There is a lack of understanding towards people withdementia from industry.
These stakeholders require a society designed to respond topeople with dementia and that is comfortable for the entire
aging population.
These stakeholders desire for more recognition to be paid tothe fact that people with dementia are capable of supporting
society rather than unilaterally receiving support.
Proven services and technologies should be adopted.
These stakeholders require technologies that reduce theburden on caregivers.
These stakeholders need longer research periods, larger
sample sizes, and generous funding to collect evidence anddevelop medicines needed for dementia treatment.
These stakeholders need clinical research funding due to thefact that preclinical trial tests and medicines are exempt fromhealth insurance.
These stakeholders face difficulties recruiting participants in
preclinical trials and need for recruitment to not only be
conducted in clinics.
These stakeholders need standardization in test procedures
and diagnostic standards.
These stakeholders lack the infrastructure needed to give
integrated support during large-scale multi-institutional joint
studies.
Clearly presenting evidence of effects is difficult, and the costeffectiveness of doing so is low.
Reputable private services with verified effectiveness need to
be promoted and disseminated.
Investments in private services and research planscommensurate with their societal achievements are needed.
There is a lack of communication between research institutes
and those in the field (such as at care facilities).
It is difficult for lateral initiatives undertaken by local
governments and NPOs to overcome regional boundaries.
Collaboration between communities, social networks, andhealthcare institutions is necessary.
Data collected by the private sector must be utilized
effectively.
All stakeholders require a clear vision and mission to be shared
among the various stakeholders.
All stakeholders require neutral management that involves
outside professionals while keeping conflicts of interest underconsideration.
All stakeholders face difficulty covering the security andoperational maintenance costs of maintaining a registry withjust annual public research grants.

© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

✓Suggestions for the PPP mechanism in JapanClassification
Visions, missions, andvaluesBusiness modelAdministrative structure








Publicity campaigns

Collaboration with otherorganizations

Institutional design

Suggestions for PPP mechanism
Clear goals must be set. These goals and the methods for achieving
them should be differentiated from other efforts to avoid difficulties
when fundraising.
It is necessary to be transparent and independent so that thedecision-making process regarding project implementation and fundprovider intent can be explained clearly.
To build a sustainable business model, it is necessary to involve fundproviding entities that can eventually fund the model. It is possiblethat initial investments can be made by the government andorganizations like foundations.
Continuously promoting the construction of evidence-based scientificprograms is of the utmost importance.
Strong fundraising and communications team are required.
As dementia has issues related to multiple fields (such as treatment,
the transition from care facilities to housing, and mobility), multistakeholders should be involved in planning the PPP. It will then benecessary that continuous efforts are made to create a unified senseof purpose among participants.
To develop the next generation of human resources, it is necessary to
involve multiple generations.
It is important to decide how to enable people with dementia andtheir families to actively participate in decision-making.
Collaboration between the public and private sectors is required toraise awareness and educate the general public.
Publicity campaigns with messages based on scientific knowledge areimportant in promoting the correct understanding of dementia withinsociety.
Organizations such as private insurance companies have conductedvarious investigations and research initiatives. A system that enables
the government to make use of their research findings would be
useful.
Evidence collected in each field should be shared as much as possible
so that it may be utilized.
There is no definite answer or system for formulating PPPs and longterm care systems. PPPs should be designed to enable considerationof the culture of each country and region from the bottom up throughdiscussions between multi-stakeholders.
As for the medical and nursing fields, the private sector is easily
influenced by changes in government systems. Therefore, a systemthat enables the private sector to collaborate with the government
during the institutional design stage is necessary.

Interviews identified the need for a PPP to facilitate knowledge sharing within the research community
and to assess new technology. Also, interviews highlighted the importance of having a clear sharedvision and mission within the PPP and of promoting transparency and impartiality in project
management.

© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

➢Collaboration with the World Dementia Council (WDC)
Interviews with stakeholders revealed that they are highly interested in the role that Japan is
expected to fill in the WDC and in other global policy planning endeavors. After sharing opinions with
the WDC on this matter, the WDC decided to investigate the current situation of and future topics ineach field it focuses on.
✓ Suggestions and expectations for Japan from the WDC
Category

Suggestions and expectations for Japan

FinanceIntegrated Drug
Development

Research, OpenScience, and Data



Care





Risk Reduction

Japan only devotes 0.2% of its total research funding to dementia, making
Japan’s investment into dementia research the smallest among G7 countries.
Therefore, Japan is expected to rapidly increase investments into dementia
research. Japan is also expected to actively adopt a successful, revolutionary
private and public collaboration model like the Dementia Discovery Fund (DDF).
Continuing with the Pharmaceutical and Medical Device Agency (PMDA) as themain constituent, the Japanese government should form partnerships withregulatory authorities in each Asian country and establish itself as a leader inthe region.
Furthermore, the MHLW and insurers should make concrete proposals for drug
prices and the extent to which insurance should cover dementia drugs. Policy
direction should be decided after consulting with other countries to examine
which approaches should be taken (for example, to examine drug evaluation
methods).
Japan should actively strengthen its partnerships with research centers inother countries. As one method for accomplishing this, AMED suggested
participation in the EU Joint Programme – Neurodegenerative Disease
Research (JPND). Furthermore, it is desirable that a platform for sharing
various data is established.
As a super aging society, Japan should share best practices for dementia careand its experience with the world. It has been brought up that there are no
examples of policies that involve society like the New Orange Plan. Japan is also
receiving attention for its utilization of ICT in treatments.
The efforts of Dementia Friends in the UK are very highly praised. In order tocontribute to the establishment and expansion of similar programs in othercountries, it is important to promote the evaluation of similar programs inJapan.
Japan should follow risk reduction recommendations from the World HealthOrganization (WHO). In addition, since Japan is unique in that it has a superaging society, Japan should actively conduct research for identifying risk factors
to delay the progression of dementia.

These conversations allowed for opinions on the concept of the PPP model to be exchanged and they
reaffirmed the need for Japan to actively contribute to the WDC. They also stressed the importanceof long-term strategic efforts for effective drug discovery and the standardization of care andevaluation methods.
➢ Multinational comparative analysis of the current state of PPPs for dementia
A multinational comparative analysis was carried out to examine the current status of international
PPPs for dementia research. It identified elements and functions required for cooperation between
industry, government, and academia regarding dementia research in Japan.

© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

✓ The number of people with dementia
According to the estimate for the number of people with dementia in member nations of the OECD
reported in the OECD’s Health at a Glance 2015, both the prevalence of dementia and its future rateof growth in Japan are high. Western Europe and the Nordic countries mostly had high levels of
dementia among the OECD member states, and countries such as Chili, South Korea, and Brazil were
projected to have high growth rates in the future.

✓

Dementia-related research and development funding
Although funding for the Government Budget Appropriations or Outlays on Research andDevelopment (GBAORD) in Japan is around the same as countries excluding the United States
and the United Kingdom, the amount of funding for dementia and neurodegenerative diseaserelated research and development is very low.

Source: OECD Health Policy Studies Addressing Dementia✓

Cost of Dementia in JapanThe overall cost of dementia in Japan is 14.5 trillion yen (2014 estimation). The breakdown ofcosts reveals that the costs of nursing and informal care together account for a much larger
proportion (87%) of total costs than medical treatment.
Regarding the dementia related cost ratio around the world, Asian countries have especially
low medical costs, and Western countries often have high cost ratios for social centers.

© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

Source: World Alzheimer Report 2015✓

Status Development status for national strategies and guidelines
The United States signed the National Alzheimer’s Project Act (NAPA) into law as a national
project on Alzheimer’s disease, while Britain and Japan have implemented policy measures aspart of their national strategies. It is necessary for Japan to consider establishing basic laws in
the future like the United States. Furthermore, Japan’s guidelines on clinical trials are
inadequate compared to Western countries, and therefore their improvement will be a goal
for the future.
© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

Dementia-related national strategies and guidelines in Western countries and Japan

Guidance

Dementia
relatednational
strategies
Name・
Guidelines

ExplanationUnited States
The National
Alzheimer’s Project Act（NAPA）

United Kingdom
Living well withdementia: A National
Dementia Strategy

Guidance for Industry,
Alzheimer’s Disease :Developing Drugs for
the Treatment of Early
Stage Disease

Draft guideline on theclinical investigation of
medicines for thetreatment of Alzheimer’s
disease and otherdementias
These guidelines aim tocreate new diagnostic
criteria for AD, including
early-stage andasymptomatic AD
patients based on the
results of impact
assessments; selecttreatments based on
outcomes for each stageof progress of AD; enable
the effective use of
biomarkers; and design
trials to determine thelong - term effectivenessand safety of dementia
treatment drugs.

The FDA’s current
approach covers areas
such as: diagnostic
methods for early-stage
Alzheimer’s disease
patients who areparticipating in clinical
trials; patient selection
and diagnostic methods
for patients for whom
the disease has thepossibility of
progressing; directions
for setting theendpoints of clinical
trials; and directions forusing biomarkers tomeasure treatment
outcomes.

Japan
Comprehensive Strategy
to Accelerate Dementia
Measures(New Orange Plan)
Guideline on the clinicalevaluation of medicines
for the treatment of
Alzheimer’s Disease (AD)Currently being
produced.

The results of this project emphasized the need for Japan to become involved in improving relevant
guidance and guidelines for dementia. It also emphasized the importance of developing a registry
framework for clinical trials in order to further advance global collaborations in dementia research.

➢

Organizing meetings involving people with dementia and their families and representatives fromgovernment, academia, and the private sector
An advisory board and an expert committee that brought together people with dementia and theirfamilies and representatives from industry, government, and academia was established in order toexchange opinions regarding the promotion of research by a PPP. (*All affiliations are current at thetime of writing)© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

✓Expert Committee✓

Advisory board© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

➢Proposals for the establishment of an international PPP model and policy
Three key approaches that will enable Japan to demonstrate leadership in Asia as a society
experiencing advanced aging have been identified. First, the PPP must provide a platform for datacollection and assessment that can facilitate discussion among organizations from various sectors.
Second, the PPP must also function as a high-quality dementia registry that can enable Japan’s
participation in large-scale international clinical trials. Last but not least, the PPP should function
as an organization that can raise awareness of dementia among the public and thereby promote
understanding and acceptance.
✓

Stakeholders for promoting a PPP
The promotion of a PPP for dementia policy will require not only cooperation between
stakeholders and people with dementia and their families, but also mutual cooperation among
stakeholders. Furthermore, people with dementia should not be positioned to only receive
unilateral support; rather, we should aim to create a world in which those with dementia canalso actively contribute to tackling the challenges dementia presents to society.

✓ The ideal dementia PPP as suggested by this research
Detailed below is a vision for the field of dementia and for society that the dementia PPP structure
proposed by this research aims to create. In the future, we must present a vision and mission andcreate a PPP roadmap.
‑ In pursuit of an effective and efficient PPP
Ideally, in the future this PPP will:・ Develop research themes and activities based on the needs of people with dementia andtheir families.
・ Appropriately prioritize research funding and activities based on an understanding of theissues surrounding dementia and evaluate the effects of research constantly.
・ Enable all stakeholders to access and share data and knowledge from dementia research andrelated services.
・ Encourage the private sector to invest actively in dementia policy and motivate further
participation in this area.
・ Actively adopt and utilize scientific and technical innovations for its work, including
innovations related to ICT and robotics.
‑ Goals of the dementia PPP
The PPP should aim to:・ Solve latent social issues in Japan that are at the backdrop of dementia-related problems,
including but not limited to issues related to low birthrates and an aging population; issues© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

that women face; and issues related to people leaving employment to care for family
members. Multifaceted and systematic solutions should be developed.
・ Take the initiative in creating global policy and serve as a hub for global research as a PPP
based in the country with the highest proportion of elderly people in the population in theworld. It should build links to the government’s Asia Health and Human Well-Being Initiative.
✓ The functions that Japan’s PPP platform on dementia should have, and the course of action thatit must takeWe will establish a PPP platform on Dementia so that Japan can successfully manage the social
challenges brought about by long life expectancies among Japanese people and to demonstrateleadership in Asia as a country already experiencing population aging.
This platform shall:
1.

Offer a space for stakeholders, including people with dementia and their families, to cooperateand conduct discussions, evaluations, and inspections of dementia-related issues using
objective data.

2.

Work to raise awareness and understanding of dementia in society, and to disseminate
information internationally.

3.

Prioritize the development and objective evaluation of new technologies relating to dementia
care.

4.

Strengthen the foundation for implementing clinical trials via various initiatives to promoteinternational cooperation, such as by developing a registry or participating in large-scale,international clinical trials.

*The contents of Section2.1 is based on the information as of March 2017 when we published our research
results.
© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

2.2International Collaboration➢

The collaboration with the World Dementia Council (WDC)
The WDC is an independent charity that is based in London and operates internationally. The
Council comprises 24 members from all sectors of society around the globe, including HGPI
Chairman Kiyoshi Kurokawa. The Council aims to improve dementia countermeasures throughinternational advocacy, international leadership, and the building of global networks.
In addition, the WDC, together with HGPI, has conducted research on the current situation ofdementia and the problems presented by dementia prevention as a partner in the “Research
Project on the Construction and Use of a Model for International Public-Private Partnerships (PPP)in Dementia Research” joint research project which was conducted by HGPI with the support of
AMED. It also gave its recommendations and suggestions for Japan.
Based on these achievements, the 12th meeting of the WDC was held in March 2018, co-sponsoredby HGPI and WDC. During that meeting, members discussed which actions that need to be taken
to accelerate progress and agreed to focus on four areas: awareness, research, care, and risk
reduction. On the sidelines of the WDC12 meeting, a Japan-UK Dementia Conference was held. It
was organized by HGPI together with WDC and media organizations from Japan and the United
Kingdom (Nikkei and the Financial Times). During this conference, guests shared knowledge about
dementia from Japan and the United Kingdom and had an in-depth discussion on how to create
and make use of international Public-Private Partnerships (PPPs).

➢

Research Proposal on Post Diagnosis Support in Scotland
Early diagnosis and early response are considered important in dementia measures. Although thisconcept is described with various expressions, the situation is same for every country. However, it
is not rare for the patients to become isolated and have their condition worsen due to the lack ofappropriate post diagnosis support (PDS). Therefore, a research proposal was created withsuggestions for Japan based on the policy in Scotland, which is the country with the most highlydeveloped PDS.
*This investigation was held with the support from the Global Health Innovation Policy Program(GHIPP) by the National Graduate Institute for Policy Studies.
✓ Observation report of Scotland “Alzheimer’s Scotland and the Link Worker System”© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

2.3

Awareness-raising activities➢“A Social Prescription for Dementia-Enabling Early Detection and Diagnoses through the Buildingof a Dementia-friendly Community”
This white paper aims to fill the knowledge gap concerning dementia on various topics including
evidence for supporting the early detection and early diagnosis, to investigate the current situation,and to offer opportunities for interested parties, health professionals, researchers engaged in thefield of dementia, policymakers, and NGO personnel to further deepen their understanding of theimportance of early detection and diagnosis.

➢

Implementation of study groups featuring various subject of dementia✓ HGPI Breakfast Meeting‑ 57th Breakfast Meeting (March 8, 2016)
・ “Losing Marbles! - Experiences of Early Treatment for Dementia-“ Mr. Tomofumi
Yamamoto (Member of the editor board of Asahi Weekly),‑ The 62nd Breakfast Meeting (June 22, 2017)
・ “Building a Dementia-Friendly Community? Expectations for Japan’s National Dementia
Strategy and the Role of Stakeholders” Mr. Yuto Tokuda (Director of Dementia FriendshipClub NGO)‑ The 64th Breakfast Meeting (October 27,2017)
・ “Action Plan Towards a More Dementia Friendly Society -Making VR Dementia
Experiences a Key Part of Integrated Community Care-” Dr. Satoko Hotta (Professor,
Graduate School of Health Management at Keio University), Mr. Tadamichi Shimogawara(President, Silverwood Co., Ltd., Japan)‑ The 69th Breakfast Meeting (May 31, 2018)
・ “A World Young Leader in Dementia on the Current Issues and Topics in Dementia at the
Global Level – What Does It Mean to Build Dementia-Friendly Communities?” Miharu
Nakanishi (World Dementia Young Leaders (WDYL))➢

Diet Study Group on Dementia
It is important to increase the number of diet members that have a strong interest in dementia andpossess correct awareness and understanding of the current situation in order to implement
further measures in the future in addition to the “Comprehensive Strategy to Accelerate Dementia
Measures (New Orange Plan)”. HGPI supports the management of the Diet Study Group on
Dementia, which is a voluntary, regular and non-partisan study group headed by House ofRepresentatives member Hayato Suzuki.
‑ First session of the Diet Study Group on Dementia (February 27, 2018)
・ “The Current State of Dementia in Japan – Building a Dementia-friendly Society” Mr. Yuto
Tokuda (Director of Dementia Friendship Club NGO)・ “Community Support for People with Dementia and their Families” Mr. Takahiro
Sugiyama (Vice-director of Alzheimer’s Association Japan – Director of Kanagawa branch)‑ Second session of the Diet Study Group on Dementia (March 27, 2018)
・ “Listening to the Voices of People with Dementia” Mr. Tomofumi Yamato (Member of theeditor board of Asahi Weekly)‑ Third session of the Diet Study Group on Dementia (April 19, 2018)
・ “Event Report on the Nikkei Financial Times-hosted Japan-UK Dementia Conference” Ms.
Yuko Shiozaki (Executive officer and Head of Special Programs Section)© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)

‑‑・ “Event Report on a Meeting of the World Dementia Council” (Dr. Kiyoshi Kurokawa (HGPI
Chairman and member of the World Dementia Council)
・ “The Future of Dementia Care” Dr. Yoshimasa Takase (President of Takase Clinic)
Fourth session of the Diet Study Group on Dementia (May 31, 2018)
・ “Frontline Research on Alzheimer’s Disease and Dementia” Mr. Takeshi Iwatsubo(Professor at the Department of Neuropathology at the Graduate School of Medicine in
the University of Tokyo)
Fifth session of the Diet Study Group on Dementia (June 26, 2018)
・ “What I myself had dementia?” Mr. Takayuki Maeda (Psychiatric Social Workers,
President of "Let's make Machida an open town" NPO; Member of the board of directorsof Young onset dementia support center NPO; Member of the advisory board of
Dementia friendship club NPO; Member of the board of directors of Japan dementia
working group general incorporated association)

Contributors:
Mariko Oyamada (COO, HGPI)
Shunichiro Kurita (Senior Associate, HGPI)
Yoshiki Niimi (Research Associate, Department of Neurology, Fujita Health University)
Amanda Ruth Mundt (Translator)
Tyler J. Koltak (Translator)(In no particular order)
Note: The information above denotes titles and affiliations at the time of the first edition.

Dementia
November 2018 First edition
September 2019 Second edition© 2019 Health and Global Policy Institute* When quoting the research results, please specify the citation. (Contact: info@hgpi.org)