112TH CONGRESS REPORT " ! SENATE 2d Session 112–254 

ALZHEIMER’S DISEASE AND DEMENTIA: 

A COMPARISON OF INTERNATIONAL APPROACHES 

R E P O R T 

OF THE

SPECIAL COMMITTEE ON AGING 

UNITED STATES SENATE 

Pursuant to 

S. RES. 81, SEC. 17(d), MARCH 2, 2011 

Resolution Authorizing a Study of the Problems of Aged and Aging 

DECEMBER 19, 2012.—Ordered to be printed 
(II) 

SPECIAL COMMITTEE ON AGING 

HERB KOHL, Wisconsin, Chairman 

RON WYDEN, Oregon 

BILL NELSON, Florida 

BOB CASEY, Pennsylvania 

CLAIRE McCASKILL, Missouri 

SHELDON WHITEHOUSE, Rhode Island 

MARK UDALL, Colorado 

MICHAEL BENNET, Colorado 

KIRSTEN GILLIBRAND, New York 

JOE MANCHIN, III West Virginia 

RICHARD BLUMENTHAL, Connecticut 

BOB CORKER, Tennessee 

SUSAN COLLINS, Maine 

ORRIN HATCH, Utah 

MARK KIRK, Illinois 

DEAN HELLER, Nevada 

JERRY MORAN, Kansas 

RONALD H. JOHNSON, Wisconsin 

RICHARD SHELBY, Alabama 

LINDSEY GRAHAM, South Carolina 

SAXBY CHAMBLISS, Georgia 

CHAD METZLER, Majority Staff Director 

MICHAEL BASSETT, Ranking Member Staff Director 
(III) 

LETTER OF TRANSMITTAL 

U.S. SENATE, 

SPECIAL COMMITTEE ON AGING, Washington, DC. 

Hon. JOE BIDEN, 

President, U.S. Senate, 

Washington, DC. 

DEAR MR. PRESIDENT: Under authority of Senate Resolution 81 

agreed to March 2, 2011, I am submitting to you a report of the 

U.S. Senate Special Committee on Aging entitled: Alzheimer’s Disease and Dementia: A Comparison of International Approaches. 

Senate Resolution 4, the Committee Systems Reorganization 

Amendments of 1977, authorizes the Special Committee on Aging 

‘‘to conduct a continuing study of any and all matters pertaining 

to problems and opportunities of older people, including but not 

limited to, problems and opportunities of maintaining health, of assuring adequate income, of finding employment, of engaging in productive and rewarding activity, of securing proper housing and, 

when necessary, of obtaining care and assistance.’’ Senate Resolution 4 also requires that the result of these studies and recommendations be reported to the Senate annually. 

I am pleased to transmit this report to you. 

Sincerely, 

HERB KOHL, 

Chairman. 

(V) 

C O N T E N T S 

Introduction .............................................................................................................. 1 

Chapter 1: Population, Life Expectancy, and Dementia Data: Selected Countries ....................................................................................................................... 3 

Chapter 2: International Issues in Diagnosis, Research, and Treatment of 

Dementia and Alzheimer’s Disease .................................................................... 31 

Chapter 3: Long-Term Care for Persons with Dementia and Alzheimer’s Disease Among Selected Countries .......................................................................... 54 

Chapter 4: Prevalence of Dementia and Alzheimer’s Disease in Low- and 

Middle-Income Countries .................................................................................... 77 

Conclusions ............................................................................................................... 86 

Appendix 1 ............................................................................................................... 88 

Appendix 2 ............................................................................................................... 89 

Appendix 3 ............................................................................................................... 90 

Acknowledgements .................................................................................................. 93 

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For many of us, the potential for an Alzheimer’s disease (AD) or dementia diagnosis is terrifying. In a

recent Marist poll, AD topped the list as the disease respondents feared most, with 44% naming it their

biggest fear—cancer ranked second with 33%1

. The fear is even more pronounced in seniors, with 56%

of respondents over 65 revealing that AD is the illness they most want to avoid. AD promises a chilling

tragedy of slowly losing both a sense of self and those we love, while simultaneously becoming

dependent on others. This inevitable decline is why AD and dementia are one of the leading public health

challenges we face in the 21st century.

Researchers and the health care system must face this challenge as they struggle to find new ways to

prevent, detect and treat the disease. Since many people do not want to learn if they have AD,

researchers find recruiting patients for early stage AD studies difficult. Even James Watson, who won a

Nobel Prize for discovering the double helix structure of DNA, feared AD. Watson had his entire

genome sequenced and was curious to learn all that scientists uncovered, with one exception; he did not

want to know if he carried the gene for AD. In many ways, such fear is justified. A diagnosis is a death

sentence. There are few treatments aimed at preventing disease advancement, and no treatment that could

reverse the course of the disease progression. In the same Marist poll referenced above, respondents were

split 50/50 about which option would be worse— an AD diagnosis, or caring for and living with a family

member with AD.

But concerns about AD are shared beyond the personal and familial challenges. AD remains a public

health challenge throughout the nation, and the world. Still, relatively little progress has been achieved in

the realm of degenerative neurological disorders such as dementia.

AD is an expensive disease, both for families and governments. As the prevalence of the disorder

increases, so will pressure on budgets around kitchen tables and in policy circles. The Alzheimer’s

Association (AA) estimates that in the next forty years, the cost of AD to all payers, including

governments, insurance companies and individuals, will total $20 trillion. The care requirements of

people who struggle with the disease expand with time and endure for years. In the early stages, these

responsibilities may tax family members economically and emotionally, as caregivers may forgo full-time

paid employment and expend time and money. AA estimates that 15 million Americans provide unpaid

care for those with Alzheimer’s disease or dementia valued at $210 billion2

. In addition, in 2012 alone,

AD patients and families spent an estimated $33 billion in out-of-pocket costs. Furthermore, in the last

year, AD has cost $104.5 billion to Medicare services and $33.5 billion to Medicaid. And these expenses

are expected to rise 500% over the next four decades.

The United States Senate Special Committee on Aging (The committee) has focused on AD and dementia

as critical health problems. The committee has held a series of hearings on the disease and has heard

testimony from those who suffer from the disease, their caregivers, researchers and governments on how

to combat AD, dementia and their expanding impact. Prominent voices, such as former Supreme Court

Justice Sandra Day O’Connor and former Speaker of the House Newt Gingrich, have testified to the

importance of continued research, vigilance and appropriate care. (A list of hearings can be found in

Appendix 1).

1Business Wire, Americans Rank Alzheimer's as Most Feared Disease, According to New Marist Poll for Home Instead Senior

CareNovember 13, 2012

2Alzheimer’s Association, 2012 Alzheimer’s Disease Facts and Figures, March, 2012.

http://www.alz.org/documents_custom/2012_facts_figures_fact_sheet.pdf

1
But the U.S. is not alone in facing the challenge of AD. Countries around the world have been

conducting their own campaigns against this devastating disease, and this committee thought it would be

instructing to examine how other countries are addressing AD. The committee’s goals are to highlight

efforts around the world and further the policy debate in this country about directions for AD policy.

The committee examined four countries—Japan, Australia, France and the United Kingdom—and their

approaches to the growing wave of AD. These countries were chosen because they have similar

economies and structures to the U.S., and also highlight different facets of the AD challenge for policy

makers. Japan was a clear choice since its population has a large contingent of older adults and has had to

adapt to a population that is no longer growing. Australia was included because the country, while having

a much smaller population than the U.S., is in many ways demographically similar to the U.S. France has

been a leader in AD policy, with the most extensive comprehensive national plan to confront and treat the

disease. Lastly, the UK provides an example of how a centrally managed health care system manages the

disease. The committee also thought it was important to review developing countries. Even though these

nations face challenges different from our own, the committee wanted to examine how they are reacting

to the 21st century’s “Age Wave” and their plans to provide care for a frail population without having first

developed extensive health and social services systems and the economies to support them.

As the report discusses in detail, AD is a growing public health issue everywhere as populations around

the world age. Encouragingly, there are global efforts to coordinate research and work committed to early

detection and interventions. The report also lays out how countries are increasingly focused both on

keeping AD patients in their homes, while also developing more specialized environments for those who

need intensive services.

A growing trend seems to be emerging toward specialization in dementia – both in the health and social

services sectors. Perhaps there is a realization that the needs of this population are different than other

seniors with chronic diseases, and that the services and institutions may need to be altered to keep the best

interest of AD patients and their families in mind.

2
Chapter 1: Population, Life Expectancy, and Dementia

Data: Selected Countries

This chapter provides information on and defines dementia and Alzheimer’s Disease (AD), describing the

population, life expectancy, and number of people with dementia in the selected focus countries. This

provides context and data, and illustrates the magnitude of the problem.

For the purposes of research and scope, this chapter begins with definitions of dementia and AD. AD is

discussed separately because it is the most common form of dementia, accounting for an estimated 60-

70% of dementia cases.

3

In addition to AD, there are a variety of dementias, including some that are

related to other diseases, such as Parkinson’s disease, vascular disease, or HIV/AIDS.

4

The definitions of

dementia and AD are followed by a discussion of the prevalence of, and the costs associated with, each

condition. An additional overview will include risk factors, protective factors, and prevention efforts

associated with both dementia and AD.

The chapter then discusses the data used in the country comparisons. Next, it describes the Organization

for Economic Cooperation and Development (OECD)—an organization of 34 developed countries with

market economies and pluralistic democracies;5

each of the focus countries is an OECD member and will

be compared with the OECD average. The OECD collects data on population, life expectancy, and

dementia (among other things) from its member nations and calculates the OECD average for these data.

Comparisons among OECD countries and of single countries to the OECD average are often used in

international comparisons.

The chapter then profiles each of the five countries separately (in alphabetical order) comparing the

countries to the OECD average. The countries are then compared to each other. The OECD and

subsequent country profiles include information that focuses on three areas: (1) population, (2) health, and

(3) the number of people with dementia. Specifically, general population information, population aging

information, life expectancy at birth and age 65, which are commonly used health indicators, and

estimates of the number of dementia and AD cases in the most recent year available and projected in

2050. Finally, at the end of this report there is discussion of how the focus countries were selected.

3 World Health Organization, Dementia: A Public Health Priority, 2012, p. 7.

4 World Health Organization, International Statistical Classification of Diseases and Related Health Problems, 10th Revision,

(ICD-10), United Nations, 1994, http://apps.who.int/classifications/icd10/browse/2010/en.

5 CRS Report RS21128, The Organization for Economic Cooperation and Development, by James K. Jackson.

3
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Most global medical and research scientists conceptualize dementia as deterioration in memory evident in

the lack of ability to learn new information. For instance, the individual has difficulty in recording,

storing, and recalling aspects of daily living, such as the

location of belongings, details of social and family life,

or recently communicated information. In more severe

cases of dementia previously learned information erodes.

Dementia is categorized by the stages of memory loss,

mild, moderate, and severe; however, the boundaries of

these stages are imprecise and individuals move through

these stages at different rates.

1. Mild-memory loss interferes with some

everyday activities, but does not interfere with

independent living; this stage is often termed

mild cognitive impairment (MCI);

2. Moderate memory loss presents a serious

handicap to independent living; only highly

learned or familiar information is retained; and

3. Severe memory loss is characterized by the

complete inability to retain new information;

only fragments of previously learned memory

remain; and the person may fail to even

remember close family members.

6

The diagnostic material in this section is drawn from the criteria in ICD-10: World Health Organization, International

Statistical Classification of Diseases and Related Health Problems, 10th Revision, (ICD-10), United Nations, 1994,

http://apps.who.int/classifications/icd10/browse/2010/en.

Alzheimer’s Disease

The most prevalent form of dementia is Alzheimer’s

Disease (AD), a neurodegenerative disease that leads

to the deterioration of memory, intellectual abilities,

and personality. AD is incurable, progressive, and is a

cause of death. AD has a particularly severe course;

for instance, AD can lead to changes in mood and

behavior as well as difficulty in speaking, swallowing,

and walking. AD is distinguished from other forms of

dementia by the presence of unique biological changes

in the brain, including a build-up of amyloid protein

resulting in the formation of amyloid plaques;

neurofibrillary tangles; neuronal (brain cell) death;

brain atrophy; and lesions.

Recent genetic research indicates that there are two

forms of AD with different genetic causes. Early-onset

AD is caused by specific genetic mutations and is

highly heritable, but accounts for only 5% of all AD

cases. Individuals who inherit these genes are

diagnosed with AD in their 30’s and 40’s, unlike most

patients with late-onset AD who are diagnosed in

their 60’s and beyond. Late-onset AD is most likely a

more complex illness caused by a variety of factors,

including genetics, environmental influences, and other

health and lifestyle factors. Distinguishing late-onset

AD from other dementias is complex, and there may

be situations where individuals have overlapping

physiological changes from a variety of dementias, so

that even post-mortem diagnosis of AD can be

complex.

Sources: D. L. Hoyert and H. H. Rosenberg,

"Alzheimer's Disease as a Cause of Death in the

United States," Public Health Report, vol. 112, no. 6

(Nov/Dec 1997), pp. 497-505; and D. M. Holtzman, J.

C. Morris, and A. M. Goate, "Alzheimer's Disease: The

Challenge of the Second Century," Science Translational

Medicine, vol. 3, no. 77 (April 6, 2011), pp. 1-17.

Hereafter referred to as D. M. Holtzman et al., 2011.

Vascular Dementia

Vascular dementia (VD) is the second most common type

of dementia in older adults. Multi-infarct dementia is the

most common form and is caused by mini-strokes, most

often transient events, which are temporary or partial

blockages in blood supply to the brain. Over time,

increasing brain damage leads to the symptoms of

dementia. It is possible to have both VD and AD

simultaneously. About 50% of VD occurs due to

hypertension, a treatable condition.

Source: National Institute on Aging, Vascular Dementia: A

Resource List, National Institutes of Health,

http://www.nia.nih.gov/alzheimers/vascular-dementiaresource-list.

4
There are a variety of dementias, such as AD, vascular dementia, Lewy bodies, Pick’s disease, 

Huntington’s disease, and HIV/AIDS-related.7

 AD is the most prevalent form of dementia and is 

responsible for at least 60% of cases.8

 The remaining dementia cases are generally attributed to cooccurring diseases such as Parkinson’s disease, vascular disease, or HIV/AIDS, and vascular dementia 

(VD) is the second most common form of dementia.9

 

The World Health Organization (WHO) defines dementia as: 

a syndrome due to disease of the brain—usually of a chronic or progressive nature—in which there is 

disturbance of multiple higher cortical functions, including memory, thinking, orientation, 

comprehension, calculation, learning capacity, language, and judgment. Consciousness is not 

clouded. The impairments of cognitive function are commonly accompanied, and occasionally 

preceded, by deterioration in emotional control, social behaviour [behavior], or motivation. This 

syndrome occurs in a large number of conditions primarily or secondarily affecting the brain. 10 



The WHO estimates that dementia affected 35.6 million people globally in 2011 with the rate expected to 

grow as the population ages.11 The majority of dementia cases occur in individuals aged 65 and over, but 

the WHO estimates that between 2-10% of all cases occur in individuals below the age of 65 and that the 

prevalence of dementia increases almost exponentially with age.12 For example, some have estimated that 

between 25-30% of people aged 85 and over have dementia.13

It is difficult to obtain precise estimates of dementia for a number of reasons related to methodological 

differences in studies used to obtain estimates. For example, research studies use different methodologies 

to estimate dementia rates and use different samples.14 As national, regional, and global estimates are 

based on the rates derived from these samples, any biases present in the original sample will, in turn, bias 

prevalence estimates at the national, regional, or worldwide levels. Another methodological issue that 

may occur is that the larger population changes over time, but accurate counts of the larger population 

may not be regularly available (e.g., the decennial census); therefore, the larger population may differ 

from the sample population. For example, in the United States, the decennial census is used to estimate 

the U.S. population. If the rates of dementia are estimated from a study with a sample drawn in 2008 are 

combined with Census 2000 data to estimate the U.S. prevalence, then the estimate may be biased 

because the U.S. population may have changed between 2000 and 2008.15

 

7

 Ibid. 

8

 Alzheimer's Association, "2012 Alzheimer's Disease Facts and Figures," Alzheimer's and Dementia, vol. 8, no. 2 (2012). 

9

 World Health Organization, International Statistical Classification of Diseases and Related Health Problems, 10th Revision, 

(ICD-10), United Nations, 1994, http://apps.who.int/classifications/icd10/browse/2010/en. 

10 World Health Organization, Dementia: A Public Health Priority, 2012, p. 7. 

11 Unless otherwise specified, this section is drawn from the World Health Organization, Dementia: A Public Health Priority, 

2012, Chapter 1, Introduction. 

12 Blossom Stephan and Carol Brayne, "Prevalence and Projections in Dementia," in Excellence in Dementia Care: Research into 

Practice, ed. Murna Downs and Barbara Bowers (New York: McGraw-Hill, 2008), pp. 9-34 and Chengxuan Qui, Miia Kivipelto, 

and Eva von Strass, "Epidemiology of Alzheimer's Disease: Occurrence, Determinants, and Strategies Toward Intervention," 

Dialogues in Clinical Neuroscience, vol. 11, no. 2 (2009), pp. 111-128. 

13 U.S. Department of Health and Human Services National Institutes of Health, National Institute on Aging and World Health 

Organization, Global Health and Aging, NIH Publication no. 11-7737, October 2011. 

14 Blossom Stephan and Carol Brayne, "Prevalence and Projections in Dementia," in Excellence in Dementia Care: Research into 

Practice, ed. Murna Downs and Barbara Bowers (New York: McGraw-Hill, 2008), pp. 9-34. 

15 Some studies will adjust Census data to account for population changes; see, for example, Liesi E. Herbert et al., "Alzheimer 

Disease in the US Population," Archives of Neurology, vol. 60 (2003), pp. 1119-1122. 

5
It is also difficult to estimate dementia prevalence because of challenges associated with assessing

dementia in research studies.16 Accurately assessing the presence of dementia in study participants is

challenging because dementia impairs cognitive functioning, which makes self-reported data unreliable.

There may also be problems with obtaining an accurate assessment from family members because of the

stigma associated with having dementia in general, in some countries, and in some racial and ethnic

groups.

17 Dementia diagnosis is also imprecise because clinical symptoms present differently in some

individuals, which makes it difficult to make a definitive dementia diagnosis.18

Projecting future dementia cases is also challenging. Although there is consensus that the prevalence of

dementia will increase because of population aging and increases in life expectancy,19 the pace of this

increase is debated. For example, the advocacy organization, Alzheimer’s Disease International, projects

that the number of dementia cases will double every twenty years;

20 whereas the WHO projects the

number of dementia cases to triple by 2050.21 Projections also incorporate assumptions about future

efforts to prevent and treat dementia, which would affect projections.

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Dementia is a major cause of late life disability and the leading cause of the need for care (including longterm care) in later life. Although estimates of the cost of care for dementia vary depending on the

assumptions used to derive these estimates, the WHO estimates that the global cost of dementia was $604

billion in 2010 (U.S. dollars). The agency further notes that the majority of these costs are due to the

custodial care these patients require and not medical treatment. The WHO also notes that in low and

middle income countries much of this care is being provided informally by family; given this, global costs

may be underestimated if informal care is not included in the estimation methodology. Others have noted

that some of the costs of dementia are borne by their caregivers including economic costs such as

foregone or curtailed employment, and health costs such as stress and worsening health—these are

referred to as indirect costs.22

16 Blossom Stephan and Carol Brayne, "Prevalence and Projections in Dementia," in Excellence in Dementia Care: Research into

Practice, ed. Murna Downs and Barbara Bowers (New York: McGraw-Hill, 2008), pp. 9-34.

17 Alzheimer's Disease International, National Alzheimer and Dementia Plans Planned Policies and Activities: Early Detection,

Access to Diagnosis and Stigma Reduction, April 2012, p. 12, http://www.alz.co.uk/sites/default/files/national-alzheimer-anddementia-plans.pdf and L. Phillipson et al., Exploring Dementia and Stigma Beliefs: A Pilot Study of Australian Adults Aged 40-

65, Alzheimer’s Australia, Paper 28, June 2012, http://www.alz.org/living_with_alzheimers_stigma.asp.

18 Blossom Stephan and Carol Brayne, "Prevalence and Projections in Dementia," in Excellence in Dementia Care: Research into

Practice, ed. Murna Downs and Barbara Bowers (New York: McGraw-Hill, 2008), pp. 9-34.

19 For example, see World Health Organization, Dementia: A Public Health Priority, Geneva, Switzerland, 2012,

http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf and Chengxuan Qui, Miia Kivipelto, and Eva von Strass,

"Epidemiology of Alzheimer's Disease: Occurrence, Determinants, and Strategies Toward Intervention," Dialogues in Clinical

Neuroscience, vol. 11, no. 2 (2009), pp. 111-128.

20 Martin Prince and Jim Jackson, World Alzheimer's Report: 2009, Alzheimer's Disease International, London,

http://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf.

21 World Health Organization, Dementia: A Public Health Priority, Geneva, Switzerland, 2012,

http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf; a Swedish group of researchers affiliated with the Aging

Research Center and the Stockholm Gerontology Research Center also project that dementia rates will triple by 2050; see

Chengxuan Qui, Miia Kivipelto, and Eva von Strass, "Epidemiology of Alzheimer's Disease: Occurrence, Determinants, and

Strategies Toward Intervention," Dialogues in Clinical Neuroscience, vol. 11, no. 2 (2009), pp. 111-128.

22 See, for example, Alzheimer's Association, 2012 Alzheimer's Disease Facts and Figures, Alzheimer's & Dementia, Volume 8,

Issue 2, Chicago, IL, 2012; Margaret Nowak et al., The Burden of Alzheimer's Disease, Washington, DC, August 2008 and

National Academy on an Aging Society, Alzheimer's Disease and Dementia: A Growing Challenge, Challenges for the 21st

Century: Chronic and Disability Conditions, Washington, DC, November 11, 2000.

6
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In 2008 (the year for which the most recent data are available), 18 million23 people were estimated to have

AD worldwide.

24 As discussed above, AD cannot be conclusively diagnosed without an autopsy;

therefore estimates of AD prevalence are imprecise. There is also substantial overlap between the

symptoms of AD and other types of dementia, which makes determinations of the type of dementia that

an individual has difficult.25 These difficulties complicate efforts to reliably estimate the prevalence of

AD and to determine the percentage of dementia attributable to AD.26

AD, like general dementia, may drive health care costs both for the patients and their caregivers.

27 There

are few AD specific estimates of the costs, but given that the majority of dementia cases are AD (between

60-70% of all dementia cases are estimated to be AD),28 the costs associated with AD are included in

global dementia estimates.

0.$, 1/-#&%$ '&% !)*)(#./ /(+ "!

Older age is the most significant risk factor for dementia and AD, but neither is a normal symptom of

aging.

29 As discussed above, the prevalence of dementia and AD increase with age. For each five year

time period over age 65, the number of individuals diagnosed with the disease increases about 5%.

30

Some research suggests that over 30% of individuals 90 and older have the AD, while other research

suggests that 45% of individuals aged 85 and older have AD.

31

Certain health behaviors and health conditions also appear to increase the risk of dementia and AD.

Specifically, research has found that heavy alcohol use,

32 head injury and traumatic brain injury33

are all

associated with increased dementia and AD risk. Heart disease and stroke, and conditions that increase

the risk of vascular disease such as diabetes, are also risk factors for dementia and AD.34 Female gender

appears to be associated with an increased risk of dementia and AD, but this may be exacerbated by

women’s higher life expectancy.

35

23 This AD estimate is not consistent with the WHO estimate of the percentage of dementia cases that are AD. This is likely to

occur because different methodologies are used to obtain the dementia and AD estimates, and the challenges associated with

collecting this type of data (e.g., self-reporting, imprecise clinical symptoms, stigma, and statistical error).

24 Margaret Nowak et al., The Burden of Alzheimer's Disease, Avalere Health, Washington, DC, August 2008.

25 Blossom Stephan and Carol Brayne, "Prevalence and Projections in Dementia," in Excellence in Dementia Care: Research into

Practice, ed. Murna Downs and Barbara Bowers (New York: McGraw-Hill, 2008), pp. 9-34.

26 World Health Organization, Dementia: A Public Health Priority, 2012, p. 7.

27 Alzheimer's Association, 2012 Alzheimer's Disease Facts and Figures, pp 6-8. Alzheimer's Association, Washington, DC.

28 World Health Organization, Dementia: A Public Health Priority, 2012, p. 7.

29 Centers for Disease Control and Prevention, Alzheimer's Disease, Atlanta, February 23, 2011, http://www.cdc.gov/aging/

aginginfo/alzheimers.htm.

30 Ibid.

31 Chengxuan Qui, Miia Kivipelto, and Eva von Strass, "Epidemiology of Alzheimer's Disease: Occurrence, Determinants, and

Strategies Toward Intervention," Dialogues in Clinical Neuroscience, vol. 11, no. 2 (2009), pp. 111-128 and Alzheimer's

Association Reports, "2012 Alzheimer's Disease Facts and Figures," Alzheimer's and Dementia, vol. 8 (2012), p.14.

136.

32 Ibid.

33 Alzheimer's Association Reports, "2012 Alzheimer's Disease Facts and Figures," Alzheimer's and Dementia, vol. 8 (2012), p.

136.

34Ibid.

35 Centers for Disease Control and Prevention, Alzheimer's Disease, Atlanta, February 23, 2011, http://www.cdc.gov/aging/

aginginfo/alzheimers.htm.

7
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It is possible that being cognitively active and obtaining higher levels of education may protect against

developing dementia and AD.36 Research has found that individuals who are highly cognitively active37

are at a lower risk of developing mild cognitive impairment (MCI)—an early symptom of dementia and

AD38—because they have increased cognitive reserve.

39 Research has also found that higher educational

attainment and socioeconomic status may reduce the risk of developing MCI and AD.40 There may also

be genetic mutations that are protective against AD, as recent research in Iceland found.41

).&,&$-#"$ "% *&!&$-#( ($' +*

It may not be possible to prevent all types of dementia, but those related to underlying diseases such as

vascular disease or HIV/AIDS may be the most amenable to preventive efforts. Specifically, efforts that

aim to reduce the incidence of vascular disease (such as those that attempt to prevent strokes by

controlling blood pressure) or efforts that aim to reduce HIV infection rates may also reduce dementia.

Reducing AD may be more difficult because the causes and mechanics of AD are currently unknown,

which makes it difficult to develop effective preventive efforts.

42

!#"#

The OECD and subsequent country profiles include information in three areas: (1) population; (2) life

expectancy; and (3) number of people with dementia. The country profiles include the following

information obtained from the following sources:

"&%#(!$)&'

• Total population (in millions): the number of people alive in a specific country at a

specific point in time.

43

• Percentage of population aged 65 years and over: the percent of the population alive in a

specific country at a specific point in time who are aged 65 years and over. This is a

commonly used measure of the size of the older population. It is also important in

36 C. Sattler et al., "Cognitive Activity, Education, and Socioeconomic Statistics as Preventive Factors for Mild Cognitive

Impairment and Alzheimer's Disease," Psychiatry Research, vol. 196, no. 1 (March 30, 2012).

37 Such as individuals who regularly read or do crossword puzzles.

38 Mild cognitive impairment (MCI) is isolated memory impairment that is related to the onset of incipient dementia or

Alzheimer's Disease. MCI is the onset of cognitive impairment beyond what would have been expected based on age and

education, but which is not significant enough to interfere with activities of daily living. See C. Sattler et al., "Cognitive Activity,

Education, and Socioeconomic Status as Preventive Factors for Mild Cognitive Impairment and Alzheimer's Disease," Psychiatry

Research, vol. 196, no. 1 (March 30, 2012).

39 Cognitive reserve is the brain's resilience to damage so that the brain continues to function despite neuronal loss due to trauma

or disease. It may function in two ways: (1) it may be “built up” by engaging in more intellectually complex tasks earlier in life;

or (2) individuals with more cognitive reserve may be better able to redirect functions that had been undertaken by the damaged

part of the brain to an undamaged part of the brain. Y. Stern, "Cognitive reserve and Alzheimer Disease," Alzheimer Disease and

Associated Disorders, vol. 20 (2006), pp. 112-116.

40 Ibid.

41 T. Jonsson et al., "A Mutation in APP Protects Against Alzheimer's Disease and Age-Related Cognitive Decline," Nature, vol.

488, no. 7409 (August 2, 2012), pp. 96-99.

42 C. Qui, M. Kivipelto, and E. von Strass, "Epidemiology of Alzheimer's Disease: Occurrence, Determinants, and Strategies

Toward Intervention," Dialogues in Clinical Neuroscience, vol. 11, no. 2 (2009), pp. 111-128.

43 Samuel H. Preston, Patrick Heuveline, and Michel Guillot, Demography: Measuring and Modeling Population Processes

(Malden, MA: Blackwell Publishers Ltd., 2001).

8
analyses of dementia because the majority of dementia cases occur in people aged 65

years and over; therefore, countries with larger percentages of the population who are

aged 65 and over have a greater percentage of the population at risk of developing

dementia.

44

Population data are drawn from the OECD.45 Total population data, unless otherwise

indicated, is for 2010. Data on the percentage of the population aged 65 years and over is

from 2008.

*%&' +"!'($)#(,

• Life expectancy at birth (in years): the average number of years a group of infants in a

given country could expect to live if they were to experience the current observed agespecific death rates throughout their lives.46 It is a common measure of the health of a

population as a country’s life expectancy generally increases with advances in medical

care and standard of living.

• Life expectancy at age 65 (in years) (women/men): the number of additional years a

woman/man who survives to age 65 can expect to live in a given country if she or he

were to experience the current age-specific death rates throughout the remainder of her or

his life. Data are presented separately for women and men because life expectancy for

women is higher. Life expectancy at age 65 (i.e., the life expectancy of the older

population) is a common measure of the health of the older population. In the case of

dementia, countries with higher life expectancies may have more dementia cases because

the likelihood of developing dementia increases with age (as noted above, the prevalence

of dementia increases almost exponentially with age.)47 Gender differences in life

expectancy may also be important because some studies have found that women have

higher rates of dementia in general and Alzheimer’s Disease specifically.

48

Life expectancy data are from the OECD and were calculated in 2010.

"'%'$#&!"!

• Percentage of the population aged 60 and over with dementia: the percentage of the

population aged 60 and over who have been diagnosed with dementia. These data were

most recently collected by the OECD in 2009; although data on percentages of the

population aged 65 years and older would be preferable because of the relationship

between dementia and age, these data are the best available comparable data.

44 Federal Interagency Forum on Aging Related Statistics, Older Americans 2012: Key Indicators of Well-Being, Washington,

DC, 2012, http://www.agingstats.gov/agingstatsdotnet/Main_Site/Data/2012_Documents/Docs/EntireChartbook.pdf.

45 OECD Factbook 2011-2012: Economic, Environmental, and Social Statistics, Paris, France, December 7, 2011. For general

information on the OECD, see CRS Report RS21128, The Organization for Economic Cooperation and Development, by James

K. Jackson.

46 Samuel H. Preston, Patrick Heuveline, and Michel Guillot, Demography: Measuring and Modeling Population Processes

(Malden, MA: Blackwell Publishers Ltd., 2001).

47 Blossom Stephan and Carol Brayne, "Prevalence and Projections in Dementia," in Excellence in Dementia Care: Research into

Practice, ed. Murna Downs and Barbara Bowers (New York: McGraw-Hill, 2008), pp. 9-34.

48 Whether such gender differences exist is debated; see discussion in B.L. Plassman, et al., "Prevalence of Dementia in the

United States: The Aging, Demographics, and Memory Study," Neuro-epidemiology, vol. 29 (October 29, 2007), pp. 125-132.

49 Data on Alzheimer’s Disease (AD) cases are not consistently available; therefore, these data are not included in the tables

below. Some data on U.S. current and projected AD cases are available and are discussed in the U.S. section.

9
• Number of people with dementia: the number of people diagnosed with dementia in a

given country. Data sources and years vary by country because comparable international

data are not available. The most recent estimates are used.

• Projected number of people with dementia in 2050: the number of people projected to

have dementia in 2050 in a given country. Data sources and years vary by country

because comparable international data are not available. The most recent estimates are

used.

Specifically, data are drawn from published research including efforts undertaken by the

WHO and AD-related associations such as the Alzheimer’s Association and Alzheimer’s

International. Data are not available for all countries and data available differ by year in

some cases. These data may also be imprecise or difficult to compare because of

methodological differences used in estimates of dementia prevalence or because sample

populations cannot be compared.50 Similar concerns apply to projections because most

projections are based on estimates of current year prevalence. Projections also include

assumptions about the rate that the prevalence of a disease will increase over time, but

there is little consensus about the rate of increase.51

+#!-'*.(#% +,$*&()"

The country profiles include population pyramids, which are graphical displays of the age structure of

each country’s population at four points in time: 1950, 2010, and projected to 2050 and 2100. The

population pyramids are bar charts that show the distribution of a country’s population by age and sex.

Younger ages are at the bottom, older ages are at the top, males are on the left, and females are on the

right. 52 These population pyramids were obtained from the United Nations (U.N.);

53 therefore, an OECD

composite pyramid is not available.54

The size and age composition of a country is determined by: (1) the country’s fertility in the past as well

as rates projected for the future; (2) its mortality and longevity; and (3) immigration. Specifically, past

fertility rates determine the number of people in a certain age group; this number may be supplemented

by immigration or reduced by emigration. Mortality (how many people die) and longevity (how long

people live) are also important determinants of the size and age structure of a given population. Whether

there are gender differences in these three factors can also affect a country’s population pyramid. Fertility

rates in particular are important because whether a population is replacing itself (i.e., there are as many

births as deaths) will determine both the overall size of a population and its age structure. Fewer births

would mean that a population would decline (in the absence of immigration). This would also cause

population aging as the percentage of people at older ages would increase because they would not be

counterbalanced by growing numbers at the younger ages. In contrast, more births, such as what occurred

50 Blossom Stephan and Carol Brayne, "Prevalence and Projections in Dementia," in Excellence in Dementia Care: Research

into Practice, ed. Murna Downs and Barbara Bowers (New York: McGraw-Hill, 2008), pp. 9-34. See also discussion in

“Dementia Prevalence.”

51 For example, Alzheimer’s Disease International projects that the number of dementia cases will double every twenty years

(Martin Prince and Jim Jackson, World Alzheimer's Report: 2009, Alzheimer's Disease International, London,

http://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf); whereas, the WHO projects the number of dementia cases to

triple by 2050 (World Health Organization, Dementia: A Public Health Priority, Geneva, Switzerland, 2012,

http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf).

52 CRS Report RL32701, The Changing Demographic Profile of the United States, by Laura B. Shrestha and Elayne J. Heisler.

53 United Nations, Department of Economic and Social Affairs, Population Division, World Population Prospect: The 2010

Revision, New York, NY, May 4, 2011. The U.N. uses “medium-variant” or what the agency considers to be the most likely

scenario when projecting the population of each country in future years.

54 The OECD was created in 1960 and its members countries have changed (and may continue) to change, so a population

pyramid for the member countries would involve a changing set of countries and assumptions about future membership.

10
during the baby boom, would mean a relatively younger population for as long as the increased birth rates

continued.55

The population pyramids of the five focus countries show graphically how each country’s population is

aging and also show the country’s population growth as indicated by wider population pyramids. The

chapter presents and discusses the population pyramids for each of the five countries and discusses within

country change over time (both in the past and predicted for the future). Then, within the section

discussing country comparisons on population data, the population pyramid comparisons are discussed as

relevant.

1%'0*.#0$.(* )(% !/(*(,./ "((&+%0$.(* 0*-

"!#!)&%(!'$

The Organization for Economic Cooperation and Development (OECD) is an organization of 34

developed countries (see Figure 1) with market economies and pluralistic democracies.56 The OECD is

the successor of the Organization for European Economic Cooperation, which began to administer aid for

the reconstruction of Europe after World War II. Consequently, the majority of the OECD members are

European countries;57 however, the organization includes countries from the Americas, Asia, Europe, and

Oceania (see Figure 1). The OECD, among other things, collects population and health data on its

member countries. These data are used throughout the chapter.

This section describes the OECD and then presents data on the three dimensions for the OECD. The data

include the OECD average that is used in the country comparisons and the range for OECD countries

because the country comparisons include limited discussion of where the five focus countries are ranked

relative to other OECD members.

55 The interplay of these population determinants for the United States are discussed in CRS Report RL32701, The Changing

Demographic Profile of the United States, by Laura B. Shrestha and Elayne J. Heisler.

56 CRS Report RS21128, The Organization for Economic Cooperation and Development, by James K. Jackson.

57 The 34 OECD countries are: Australia, Austria, Belgium, Canada, Chile, the Czech Republic, Denmark, Estonia, Finland,

France, Germany, Greece, Hungary, Iceland, Ireland, Israel, Italy, Japan, Korea, Luxembourg, Mexico, the Netherlands, New

Zealand, Norway, Poland, Portugal, the Slovak Republic, Slovenia, Spain, Sweden, Switzerland, Turkey, the United Kingdom,

and the United States.

11
Figure 1. OECD Member Countries

Source: The Organization for Economic Cooperation and Development, “Members and Partners”

www.oecd.org/about/membersandpartners/.

Notes: Shaded countries are OECD member nations. Territories and possessions of member nations are also shaded.

12
()+* '"$%#!&

Table 1 shows the OECD averages and ranges of the population and health indicators that are discussed

for each of the focus countries. The OECD collects some aggregate data on health conditions such as

dementia, but data collected are limited (see Table 1).

Table 1. OECD Profile

Indicator Value

Range Year of

Data

Data

Mi Source nimum Maximum

Population

Total Populationa 1.2 billion 309,000

(Iceland)

309.1 million

(United

States)

2010 OECD

Percentage of population aged 65 years and over 14.4% 5.6% (Mexico) 22.1% (Japan) 2008 OECD

Life Expectancy

Life expectancy at birth 79.8 years 74.3 years

(Hungary and

Turkey)

83.0 years

(Japan)

2010 OECD

Life expectancy at age 65 (women) 20.7 years 16.1 years

(Turkey)

23.9 years

(Japan)

2010 OECD

Life expectancy at age 65 (men) 17.4 years 13.8 years

(Hungary)

19.0 years

(Switzerland)

2010 OECD

Dementia

Percentage of population with dementia (aged 60

years and over)

5.5% 3.5% (Turkey) 6.5% (France) 2009 OECD

Number of people with dementia NAb NA NA NA NA

Projected number of people with dementia (2050) NAc NA NA NA NA

Sources: OECD: Organization for Economic Cooperation and Development, OECD Health Data 2012 at

http://stats.oecd.org/Index.aspx?DataSetCode=HEALTH_STAT; OECD Factbook 2011: Economic, Environmental and

Social Statistics: Population and Migration—Population—Total Population at http://www.oecd.org/statistics/; and Health at

a Glance 2011, OECD Indicators at http://www.oecd.org/els/healthpoliciesanddata/49105858.pdf.

Notes: NA=not available.

a. The total OECD population is reported here as this is likely more meaningful than the OECD average because the

majority of OECD countries have small populations and the average is influence by the United States, which at 309.1

million, is an outlier that raises the OECD average.

b. The NIA and WHO estimate that globally there were 35.6 million people with dementia in 2010 and that the majority

of these individuals lived in developed countries, see U.S. Department of Health and Human Services National

Institutes of Health, National Institute on Aging and World Health Organization, Global Health and Aging, NIH

Publication no. 11-7737, October 2011. Although this is not an OECD estimate, the global estimate, with its focus on

developed countries, partially reflects the OECD total.

c. The World Alzheimer’s Report projects that there will be 115 million people worldwide living with dementia in 2050.

Martin Prince, Renata Bryce, and Cleusa Ferri, World Alzheimer's Report 2011: The Benefits of Early Diagnosis and

Intervention, Alzheimer's Disease International, London, UK, September 2011. The Alzheimer’s Association projects

that there will be 108.6 million people worldwide with Alzheimer’s in 2050. Ron Brookmeyer et al., "Forecasting the

Global Burden of Alzheimer's Disease," Alzheimer's & Dementia, vol. 3 (2007), pp. 186-191.

13
+#-%"!, *!#('&)$

This section profiles each of the five focus countries in alphabetical order. These profiles include a

discussion of the five country-specific tables that provide data on population, life expectancy, and the

number of dementia cases. The discussion compares each of the five countries to the OECD average. The

discussion does not assess whether differences between the focus countries and the OECD average are

statistically significant. Following the country specific data tables, there are four population pyramids for

each country that include data on the age and sex composition of each of the focus countries’ population

at four points in time: 1950, 2010, and projected to 2050 and 2100.

"#%$&!'(!

Australia’s total population was 22.3 million in 2010. It had the 13th largest population of the OECD

countries. In 2008 (the last year for which comparable data are available), 13.3% of the Australian

population was aged 65 and over, which is below the OECD average of 14.4%.

58 Australia’s life

expectancy at birth at 81.8 was 2 years higher than the OECD average of 79.8 years. Similarly, the

country’s life expectancy for its population at aged 65 was 21.8 years for women and 18.9 years for men,

which was 1.1 and 1.5 years higher than the OECD average for women and men respectively.

According to Alzheimer’s Australia, 300,000 Australians had dementia in 2010 and they project that the

number will triple (to 900,000) by 2050. According to the OECD, 5.8% of the Australian population age

60 and over had dementia in 2009; this was slightly higher than the OECD average of 5.5%.

Table 2. Australia Country Profile

Indicator Value Year of Data Data Source

Population

Total Population 22.3 million 2010 OECD

Percentage of population aged 65 years and over 13.3% 2008 OECD

Life Expectancy

Life expectancy at birth 81.8 years 2010 OECD

Life expectancy at age 65 (women) 21.8 years 2010 OECD

Life expectancy at age 65 (men) 18.9 years 2010 OECD

Dementiaa

Percentage of population with dementia (aged 60 years and over) 5.8% 2009 OECD

Number of people with dementia 300,000 2010 Alzheimer’s Australia

Projected number of people with dementia (2050) 900,000 2050 Alzheimer’s Australia

Sources: Alzheimer’s Australia: Key Facts and Statistics 2010, Australia Statistics, at

http://www.fightdementia.org.au/media/key-facts-and-statistics-for-media.aspx. OECD: Organization for Economic

Cooperation and Development, OECD Health Data 2012 at

http://stats.oecd.org/Index.aspx?DataSetCode=HEALTH_STAT; OECD Factbook 2011: Economic, Environmental and

Social Statistics, at http://www.oecd-ilibrary.org/economics/oecd-factbook-2011-2012_factbook-2011-en; and Health at a

Glance 2011, OECD Indicators at http://www.oecd.org/els/healthpoliciesanddata/49105858.pdf.

a. Estimating the number of people with dementia is imprecise; different countries use different methodologies to derive

their estimates of dementia prevalence, which limits cross country comparisons.

58 The OECD average for the population aged 65 years and over was calculated based on 2008 data because some countries did

not have more recent data available. Organization of Economic Cooperation and Development, OECD Factbook 2011-2012:

Economic, Environmental, and Social Statistics, Paris, France, December 7, 2011.

14
The pyramids below describe the Australian population at four points in time: 1950, 2010, projected to

2050 and 2100. The pyramids demonstrate that the Australian population is getting progressively larger

(as indicated by the overall widening of the population pyramids). Australia has also aged between 1950

and 2010 as indicated by an increasing percentage of the population ages 65 and over. In 1950, Australia

experienced a baby boom, which is indicated by the larger bars for the population at ages 0 through 10—

this indicates larger percentages of the population at the younger ages. This baby boom population is

subsequently reflected by the larger bars (percent of the populations) between the ages 55 and 65 in the

2010 pyramid. In 2010, the majority of Australia’s population was working age (i.e., between 15 and 65)

and the country also had a smaller child (aged 0 through 20) and smaller older (aged 65 and above)

populations. By 2050, the relative size of the populations ages 0 to 70 is projected to be similar; this

indicates that the population is in a steady state with no large shifts in either the child or elderly

populations. This is also projected to be the case in 2100.

15
Figure 2. Australia Population Pyramids

Source: United Nations, Department of Economic and Social Affairs, Population Division, World Population Prospect: The

2010 Revision, http://esa.un.org/wpp/population-pyramids/population-pyramids.htm.

"#!$&%

France’s total population was 62.6 million in 2009 making it the 6

th largest OECD country in terms of

population size.

59 In 2008 (the last year for which comparable data are available), 16.6% of the French

population was aged 65 and over, which was more than 2 percentage points higher than the OECD

59 The OECD used 2009 data because 2010 population data were not available for all OECD countries. Organization of

Economic Cooperation and Development, OECD Factbook 2011-2012: Economic, Environmental, and Social Statistics, Paris,

France, December 7, 2011.

16
average of 14.4%.

60 France also had higher life expectancy than the OECD average. Its life expectancy

was 81.5, which was nearly 2 years higher than the OECD average of 79.8 years. Similarly, the country’s

life expectancy for its population at age 65 was above the OECD averages for women and men.

Specifically, the country’s life expectancy for women was 1.8 years higher than the OECD average while

the life expectancy for men was 1.0 year higher.

A larger percentage of the population aged 65 and over and higher life expectancy may indicate that a

larger percentage of the population is at risk for dementia because dementia rates increase with age.

61 A

WHO publication estimated that France, with an estimated 1.1 million people with dementia, was one of

the nine countries with the highest number of dementia disease cases worldwide.

62 France also had the

highest prevalence of dementia (6.5%) in the population age 60 and above among the 34 OECD countries.

Table 3. France Country Profile

Indicator Value Year of Data Data Source

Population

Total population 62.6 million 2009 OECD

Percentage of population aged 65 years and over 16.6% 2008 OECD

Life Expectancy

Life expectancy at birth 81.5 years 2011 OECD

Life expectancy at age 65 (women) 22.6 years 2009 OECD

Life expectancy at age 65 (men) 18.4 years 2009 OECD

Dementiaa

Percentage of population with dementia (aged 60 years and over) 6.5% 2009 OECD

Number of people with dementia 1.1 million 2010 WHO

Projected number of people with dementia (2050) 1.8 million 2050 Mura, Dartingues, and Berr

Sources: OECD: Organization for Economic Cooperation and Development, OECD Health Data 2012 at

http://stats.oecd.org/Index.aspx?DataSetCode=HEALTH_STAT; OECD Factbook 2011: Economic, Environmental and

Social Statistics, at http://www.oecd-ilibrary.org/economics/oecd-factbook-2011-2012_factbook-2011-en; and Health at a

Glance 2011, OECD Indicators at http://www.oecd.org/els/healthpoliciesanddata/49105858.pdf. WHO: World Health

Organization: Dementia: A Public Health Priority, Geneva, Switzerland, 2012, http://whqlibdoc.who.int/publications/2012/

9789241564458_eng.pdf. Mura, Dartingues, and Berr: Thibault Mura, Jean-Francois Dartigues, and Claudine Berr,

"How Many Dementia Cases in France and Europe: Alternative Projections and Scenarios 2010-2050," European Journal of

Neurology, vol. 17, no. 2 (February 2010), pp. 252-259.

a. Estimating the number of people with dementia is imprecise; different countries use different methodologies to derive

their estimates of dementia prevalence, which limits cross country comparisons.

The pyramids below describe the French population at four points in time: 1950, 2010, projected to 2050

and 2100. The pyramids demonstrate that the French population is aging as indicated by the progressively

larger bars (i.e., percentages of the population) at the middle and late ages. The French population

experienced a post-war baby boom in 1950 as indicated by the largest population bar (i.e., percentages of

60 The OECD average for the population aged 65 years and over was calculated based on 2008 data because some countries did

not have more recent data available. Organization of Economic Cooperation and Development, OECD Factbook 2011-2012:

Economic, Environmental, and Social Statistics, Paris, France, December 7, 2011.

61 World Health Organization, Dementia: A Public Health Priority, 2012, p. 7.

62 The other eight countries with the highest number of dementia cases and the number of cases in these countries (in

parentheses) are: (1) China (5.4 million); (2) United States (3.9 million); (3) India (3.7 million); (4) Japan (2.5 million); (5)

Germany (1.5 million); (6) Russia (1.2 million); (7) Italy (1.1 million); and (8) Brazil (1.0 million). See World Health

Organization, Dementia: A Public Health Priority, 2012.

17
the population) at ages 0 to 10 in the 1950 pyramid. This population is subsequently ages 60 to 70 in the

2010 pyramid. The 2010 pyramid shows an overall aging population as indicated by the widest bars (i.e.,

percentages of the population) at the early and late middle ages. The 2050 pyramid also projects further

aging of the French population with larger bars (i.e., percentages of the population) at the older ages and

smaller bars at the youngest ages. According to the 2100 pyramid, the French population aging is

expected to decelerate with the resulting population projected to be more evenly distributed from ages 0

to 70, with smaller percentages of the population at the oldest ages.

Figure 3. France Population Pyramids

Source: United Nations, Department of Economic and Social Affairs, Population Division, World Population Prospect: The

2010 Revision, http://esa.un.org/wpp/population-pyramids/population-pyramids.htm.

18
!$"$#

Japan’s total population was 127.5 million in 2009. It had the second largest population of the 34 OECD

countries (the United States was the largest). It was the oldest of the 34 OECD countries with more than

one-fifth of its population aged 65 or older (22.1%). This percentage was 7.7 percentage points higher

than the OECD average of 14.4%.

63 In addition to having a larger share of the older population, Japan

also had higher life expectancy than the OECD average. Its life expectancy at birth was 83.0, which was

the highest among OECD countries and is more than 3 years higher than the OECD average of 79.8 years.

Similarly, the country’s life expectancy for its population at age 65 is the highest among OECD countries

for women and among the highest for men. Specifically, the average Japanese woman who survives to

age 65 could expect to live an additional 23.9 years (i.e., to age 88.9); the OECD average was 20.7 (i.e.,

to age 85.7). The life expectancy for men at age 65 is 18.9 years (the highest for OECD countries was

Switzerland at 19.0 years), the OECD average was 17.7 years, more than two years less than Japan’s

average.

Higher life expectancy and a larger percentage of the population aged 65 and over may indicate that a

larger percentage of the population is at risk for dementia.

64 This seemed to be the case, as a WHO

publication estimated that Japan, with 2.5 million cases, was one of the nine countries with the highest

number of dementia cases worldwide.65 Japan also had a high prevalence of dementia (6.5%) in the

population aged 60 and over.

63 The OECD average for the population aged 65 years and over was calculated based on 2008 data because some countries did

not have more recent data available. Organization of Economic Cooperation and Development, OECD Factbook 2011-2012:

Economic, Environmental, and Social Statistics, Paris, France, December 7, 2011.

64 World Health Organization, Dementia: A Public Health Priority, 2012, p. 7.

65 The other eight countries with the highest number of dementia cases and the number of cases in these countries (in

parentheses) are: (1) China (5.4 million); (2) United States (3.9 million); (3) India (3.7 million); (4) Japan (2.5 million); (5)

Germany (1.5 million); (6) Russia (1.2 million); (7) Italy (1.1 million); and (8) Brazil (1.0 million). See World Health

Organization, Dementia: A Public Health Priority, 2012.

19
Table 4. Japan Country Profile

Indicator Value

Year of

Data Data Source

Population

Total population 127.5 million 2009 OECD

Percentage of population aged 65 years and

over

22.1% 2008 OECD

Life Expectancy

Life expectancy at birth 83.0 years 2010 OECD

Life expectancy at age 65 (women) 23.9 years 2010 OECD

Life expectancy at age 65 (men) 18.9 years 2010 OECD

Dementiaa

Percentage of population with dementia (aged

60 years and over)

6.1% 2009 OECD

Number of people with dementia 2.5 million 2010 WHO

Projected number of people with dementia

(2050)

7.5-10.0 milliona 2010; 2009 WHO and World

Alzheimer’s Report

Sources: OECD: Organization for Economic Cooperation and Development, OECD Health Data 2012 at

http://stats.oecd.org/Index.aspx?DataSetCode=HEALTH_STAT; OECD Factbook 2011: Economic, Environmental and

Social Statistics, at http://www.oecd-ilibrary.org/economics/oecd-factbook-2011-2012_factbook-2011-en; and Health at a

Glance 2011, OECD Indicators at http://www.oecd.org/els/healthpoliciesanddata/49105858.pdf. WHO: World Health

Organization: Dementia: A Public Health Priority, Geneva, Switzerland, 2012, http://whqlibdoc.who.int/publications/2012/

9789241564458_eng.pdf. World Alzheimer’s Report: Martin Prince and Jim Jackson, World Alzheimer's Report: 2009,

Alzheimer's Disease International, London, http://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf.

a. Estimating the number of people with dementia is imprecise; different countries use different methodologies to derive

their estimates of dementia prevalence, which limits cross country comparisons.

b. The number of dementia cases is projected to double every twenty years; using this projection there would be 10

million dementia cases in 2050. See Martin Prince and Jim Jackson, World Alzheimer's Report: 2009, Alzheimer's

Disease International, London, http://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf. The WHO projects

the number of cases to triple by 2050; using that projection there would be 7.5 million dementia cases in Japan in

2050. See World Health Organization, Dementia: A Public Health Priority, Geneva, Switzerland, 2012,

http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf.

The pyramids below describe the Japanese population at four points in time: 1950, 2010, projected to

2050 and 2100. The pyramids demonstrate that Japan’s population is rapidly aging as indicated by the

progressively larger bars (i.e., percentages of the population) at the middle and late ages. In 1950, the

Japanese population was a pyramid with larger populations at the youngest ages. Declining fertility66

resulted in the 2010 population pyramid where there are fewer individuals at the youngest ages and larger

percentages of the population at the late and middle ages. The 2050 pyramid shows continued population

aging and that the largest age groups in the population will be ages 75 years or older. By 2100, the

Japanese population is predicted to stabilize with a more even distribution throughout each of the age

groups.

66 In 2012, Japan’s total fertility rate was 1.39, which is well below replacement level fertility rate of 2.1. In some developed

countries replacement level fertility may be closer to 2.0 because of lower mortality rates in childhood. Central Intelligence

Agency, The World Factbook: 2012, Washington, DC, https://www.cia.gov/library/publications/the-world-factbook.

20
Figure 4. Japan Population Pyramids

Source: United Nations, Department of Economic and Social Affairs, Population Division, World Population Prospect: The

2010 Revision, http://esa.un.org/wpp/population-pyramids/population-pyramids.htm.

)"%#'( *%"&(!$

The total population of the United Kingdom (UK) was 61.3 million in 2010. It had the 7

th largest

population of the 34 OECD countries. The percentage of the population aged 65 years and over was

16.1%, which was more than 2 percentage points higher than the OECD average of 14.4%.

67 The UK also

had higher life expectancy at birth and at age 65 than the OECD average. Its life expectancy was 80.6,

67 The OECD average for the population aged 65 years and over was calculated based on 2008 data because some countries did

not have more recent data available. Organization of Economic Cooperation and Development, OECD Factbook 2011-2012:

Economic, Environmental, and Social Statistics, Paris, France, December 7, 2011.

21
which was higher than the OECD average of 79.8 years. Female life expectancy at age 65 was 20.9,

which was slightly higher than the OECD average of 20.7; male life expectancy was 18.3, which was

nearly a year higher than the OECD average of 17.4 years.

The percentage of the UK population aged 60 and over that had dementia was 6.1%, which is higher than

the OECD average of 5.5%. In 2010, the number of dementia cases was 800,000.

Table 5. United Kingdom Country Profile

Indicator Value

Year of

Data Data Source

Population

Total Population 61.3 million 2010 OECD

Percentage of population aged 65 years and over 16.1% 2008 OECD

Health

Life expectancy at birth 80.6 years 2010 OECD

Life expectancy at age 65 (women) 20.9 years 2010 OECD

Life expectancy at age 65 (men) 18.3 years 2010 OECD

Dementiaa

Percentage of population with dementia (aged 60 years and

over)

6.1% 2009 OECD

Number of people with dementia 800,000 2012 Alzheimer’s Society

Projected number of people with dementia (2050) 2.4 -3.2

milliona

2010; 2009 WHO and World Alzheimer’s

Report

Sources: Alzheimer’s Society: Alzheimer's Society, Alzheimer's Society Dementia 2012, London, England, March 2012,

www.alzheimers.org.uk/dementia2012. OECD: Organization for Economic Cooperation and Development, OECD Health

Data 2012 at http://stats.oecd.org/Index.aspx?DataSetCode=HEALTH_STAT; OECD Factbook 2011: Economic,

Environmental and Social Statistics, at http://www.oecd-ilibrary.org/economics/oecd-factbook-2011-2012_factbook-2011-

en; and Health at a Glance 2011, OECD Indicators at http://www.oecd.org/els/healthpoliciesanddata/49105858.pdf. WHO:

World Health Organization: Dementia: A Public Health Priority, Geneva, Switzerland, 2012, http://whqlibdoc.who.int/

publications/2012/9789241564458_eng.pdf. World Alzheimer’s Report: Martin Prince and Jim Jackson, World

Alzheimer's Report: 2009, Alzheimer's Disease International, London, http://www.alz.co.uk/research/files/

WorldAlzheimerReport.pdf.

a. Estimating the number of people with dementia is imprecise; different countries use different methodologies to derive

their estimates of dementia prevalence, which limits cross country comparisons.

b. The number of dementia cases is projected to double every twenty years; using this rate there would be 3.2 million

dementia cases in the UK in 2050. See Martin Prince and Jim Jackson, World Alzheimer's Report: 2009, Alzheimer's

Disease International, London, http://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf. The WHO projects

the number of cases to triple by 2050; using that projection there would be 2.4 million dementia cases in the UK in

2050. See World Health Organization and Alzheimer's Disease International, Dementia: A Public Health Priority,

Geneva, Switzerland, 2012, http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf.

The pyramids below describe the population of the United Kingdom at four points in time: 1950, 2010,

projected to 2050 and 2100. The pyramids demonstrate that the United Kingdom had an aging baby boom

population, which was at the earliest ages in 1950 (between the ages of 0 and 10), and subsequently

between ages 60 and 70 in the 2010 pyramid. By 2050, the relative size of the bars (i.e., percentage of the

population) ages 0 through age 70 is projected to be similar, with slightly smaller populations at the

younger ages. This would indicate slow population growth or population declines. In 2100, the UK

population is projected to look similar to the population in 2050, a steady state with no large shifts in

either the child or elderly populations.

22
Figure 5. United Kingdom Population Pyramids

Source: United Nations, Department of Economic and Social Affairs, Population Division, World Population Prospect: The

2010 Revision, http://esa.un.org/wpp/population-pyramids/population-pyramids.htm.

!%&#'( "#)#'$

The U.S. population was 309.1 million in 2010, making it the largest OECD country.68 In 2008 (the last

year for which comparable data are available), 12.8% of the U.S. population was aged 65 years and over,

which was below the OECD average of 14.4%.69 The U.S. life expectancy at birth at 78.7 was also below

68 The OECD used 2009 data because 2010 population data were not available for all OECD countries. Organization of

Economic Cooperation and Development, OECD Factbook 2011-2012: Economic, Environmental, and Social Statistics, Paris,

France, December 7, 2011.

69 The OECD average for the population aged 65 years and over was calculated based on 2008 data because some countries did

23
the OECD average of 79.8. Similarly, its life expectancy for women at age 65 was 20.3 years, which was

just below the OECD average of 20.7 years. However, its male life expectancy at the age of 65 was 17.7

years, which was a few months more than the OECD average of 17.4 years.

According to OECD, 6.2% of U.S. population aged 60 and over had dementia, which was higher than the

OECD average of 5.5%. This high percentage along with the large U.S. population in general and aged 65

and over means that the United States had one of the world’s highest number of dementia cases with an

estimated 3.9 million people with dementia.70

Table 6. United States Country Profile

Name Value

Year of

Data Data Source

Population

Total population 309.1 million 2010 OECD

Percentage of population aged 65 years and over 12.8% 2008 OECD

Health

Life expectancy at birth 78.7 years 2010 OECD

Life expectancy at age 65 (women) 20.3 years 2010 OECD

Life expectancy at age 65 (men) 17.7 years 2010 OECD

Dementiaa

Percentage of population with dementia (aged 60 years and

over)

6.2% 2009 OECD

Number of people with dementiab 3.9 million 2010 WHO

Projected number of people with dementia (2050) 11.7-15.6

millionc

2010; 2009 WHO and World Alzheimer’s

Report

Sources: OECD: Organization for Economic Cooperation and Development, OECD Health Data 2012 at

http://stats.oecd.org/Index.aspx?DataSetCode=HEALTH_STAT; OECD Factbook 2011: Economic, Environmental and

Social Statistics, at http://www.oecd-ilibrary.org/economics/oecd-factbook-2011-2012_factbook-2011-en; and Health at a

Glance 2011, OECD Indicators at http://www.oecd.org/els/healthpoliciesanddata/49105858.pdf. WHO: World Health

Organization: Dementia: A Public Health Priority, Geneva, Switzerland, 2012, http://whqlibdoc.who.int/publications/2012/

9789241564458_eng.pdf. World Alzheimer’s Report: Martin Prince and Jim Jackson, World Alzheimer's Report: 2009,

Alzheimer's Disease International, London, http://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf.

a. Estimating the number of people with dementia is imprecise; different countries use different methodologies to derive

their estimates of dementia prevalence, which limits cross country comparisons.

b. Some data exist for U.S. AD cases. Specifically, the Alzheimer’s Association estimated that there were 5.4 million

people with AD in 2012. This estimate is higher than the WHO estimate of 3.9 million dementia cases, which includes

AD cases. The Alzheimer’s Association derived this number based on research that found that 13% of the population

aged 65 and over have AD. This is more than twice the OECD percentage of the population aged 60 and over with

dementia. For discussion of how the Alzheimer’s Association estimate was derived, see Alzheimer's Association, 2012

Alzheimer's Disease Facts and Figures, Alzheimer's & Dementia, Volume 8, Issue 2, Chicago, IL, 2012, p. 58. Another

study projects that there will be 13.4 million AD cases in 2050. See Margaret Nowak et al., The Burden of

Alzheimer's Disease, Avalere Health, Washington, DC, August 2008. These discrepancies in estimates of AD

prevalence may arise because of how different studies count those who had AD, as a found by a panel of experts

convened by the National Institute on Aging and the Alzheimer’s Association to examine discrepancies in prevalence

estimates. Specifically, the panel compared estimates from two different U.S. studies of AD prevalence and concluded

that differences arose because the two studies used different AD diagnostic criteria. The panel found that when the

not have more recent data available. Organization of Economic Cooperation and Development, OECD Factbook 2011-2012:

Economic, Environmental, and Social Statistics, Paris, France, December 7, 2011.

70 World Health Organization, Dementia: A Public Health Priority, Geneva, Switzerland, 2012,

http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf.

24
same diagnostic criteria were applied across studies, the prevalence estimates were similar. See Robert S. Wilson et

al. “Sources of Variability in Estimates of the Prevalence of Alzheimer’s Disease in the United States.” Alzheimer’s &

Dementia, vol. 7, no. 1 (2011), pp. 74–79.

c. The number of dementia cases is projected to double every twenty years; using this projection there would be 15.6

million dementia cases in 2050. See Martin Prince and Jim Jackson, World Alzheimer's Report: 2009, Alzheimer's Disease

International, London, http://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf. The WHO projects cases to

triple by 2050 using that projection; there would be 11.7 million dementia cases in the United States in 2050. See

World Health Organization, Dementia: A Public Health Priority, Geneva, Switzerland, 2012,

http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf.

The pyramids below describe the U.S. population at four points in time: 1950, 2010, projected to 2050

and 2100. The pyramids demonstrate that the U.S. population is getting progressively larger (as indicated

by the overall widening of the population pyramids. The United States has also aged between 1950 and

2010 as indicated by increasing percentages of population ages 65 and over. In 1950, the United States

experienced a baby boom as indicated by larger populations at ages 0 through 10. This population is

reflected by the larger population bars (representing the percentage of the population) between ages 55

and 65 in the 2010 pyramid. In 2010, the majority of U.S. population was working age (between 15 and

65) and the country also had a smaller child and aging (aged 65 and over) populations. By 2050, the

relative size of the population ages 0 through age 70 is projected to be similar. This indicates that the

population is in a steady state with no large shifts in either the child or elderly populations. This is also

projected to be the case in 2100. The U.S. population is also expected to increase in size through 2100.

25
Figure 6. United States Population Pyramids

Source: United Nations, Department of Economic and Social Affairs, Population Division, World Population Prospect: The

2010 Revision,

+&"'$#, +&(%*#)!&'!

This section compares the five focus countries in the three areas discussed in the country overviews: (1)

population, (2) life expectancy, and (3) dementia. Data are presented in tables or figures that are preceded

by a discussion of the data. The comparisons highlight similarities and differences across the countries;

whether these differences were statistically significant was not assessed. The first section on population

comparisons includes a discussion of the population pyramids.

26
"&%#(!$)&'

The five focus countries range in size from 22.3 million (Australia) to 309.1 million (the United States).

After the United States, Japan was the next largest in size with an estimated population of 127.5 million

in 2009. France and the UK are similarly sized with populations of 62.6 million (2009 data) and 61.3

million respectively (see Figure 7). Figure 7 shows both the total population and the number of

individuals aged 65 and over in the five focus countries. For example, it shows that the number of

individuals in the United States who were aged 65 and older was 39.6 million. This was 11.4 million

higher than the number of individuals aged 65 and over in Japan (28.2 million). Although the United

States is nearly twice the size of the Japan, Japan has a higher percentage of individuals aged 65 and over

(22.1% for Japan as compared to 12.8% for the United States), which makes the absolute numbers of

people aged 65 and over similar in the two countries. The figure also shows that given the small size of

the Australian population relative to the other five focus countries, Australia has the smallest number of

people aged 65 and over and that France and the UK, which had similarly sized populations and similar

percentages of individuals aged 65 and over, had similarly sized older populations (10.4 million for

France and 9.9 million for the UK). The size of the population affects the number of dementia cases. The

percentage of the population that is aged 65 and over and the size a country’s population, in turn,

determine the number of individuals in a given country who are aged 65 or older.

Figure 7. Total Population and Population Aged 65 and Over (in Millions)

Source: OECD Factbook 2011: Economic, Environmental and Social Statistics, at http://www.oecdilibrary.org/economics/oecd-factbook-2011-2012_factbook-2011-en.

22.3

62.6

127.5

61.3

309.1

2.9 10.4

28.2

9.9

39.6

0

50

100

150

200

250

300

350

Australia France Japan United Kingdom United States

Millions

Total Aged 65 and Over

27
Notes: Data are the latest year available. The population aged 65 and over was obtained by multiplying the 2008 percentage of

the population aged 65 and over by the total population in 2010 (or 2009 depending on the last year of data available). The

estimated number of individuals aged 65 and over in the OECD overall is estimated at 176.9 million. This number was obtained

by taking the OECD population (1,228.2 million) and multiplying it by the OECD average percentage of the population aged 65

and over (14.4%).

The percentage of the population that is aged 65 and over also influences the number of dementia cases in

a country. As shown in Table 7, of the five focus countries Australia and the United States had

percentages of the population aged 65 and over that were below the OECD average of 14.4%. The

percentages in Australia and the United States were 13.2% and 12.8% respectively. Japan (22.1%),

France (16.6%), and the UK (16.1%) were all above the OECD average.

Table 7. Country Comparisons: Population

Country Australia France Japan

United

Kingdom

United

States

OECD

Total Population (in millions) 22.3 62.6 127.5 61.3 309.1 1,228.2

Percentage of the population aged

65 years and over (2008)

13.2% 16.6% 22.1% 16.1% 12.8% 14.4%

Source: OECD Factbook 2011: Economic, Environmental and Social Statistics, at http://www.oecdilibrary.org/economics/oecd-factbook-2011-2012_factbook-2011-en.

Notes: Data are the latest year available; in some instances total population data are 2009 data because that was the latest

year reported to the OECD.

The population pyramids (see Figures 2-6) show some similarities across the five focus countries in

1950. Each of the focus countries was experiencing a post-war baby boom with larger percentages of the

population at the youngest ages. This increase then resulted in overall population growth as the younger

population moved through their child bearing years. The baby boom cohort in each of these focus

countries resulted in larger populations at ages 50 to 70 in the 2010 population pyramids.

The countries differ in the percentages of the population that were children in 2010 and in the projections

for 2050 and 2100. Much of this variation is driven by current and projected fertility rates and differences

in life expectancy across the countries. For example, Japan is projected to maintain its relatively low

fertility71 and its high life expectancy; consequently, the country is projected to have the largest

percentages of the population at ages 70 and over in 2050. In contrast, France and the United States have

fertility rates that are about at replacement level (2.08),

72 this relatively higher fertility rate is projected

through the 2050 and 2100 population pyramids where younger populations are expected to be about the

same size as the populations that succeeded them (i.e., they will replace older populations). This would

mean that these countries would maintain their age structures. However, the absolute number of people

aged 65 and over may increase, in the United States in particular, because the country’s population

continues to grow.

71 In 2012, Japan’s total fertility rate was 1.39, which is below the replacement level fertility rate of 2.1. In some developed

countries replacement level fertility may be closer to 2.0 because of lower mortality rates in childhood. Central Intelligence

Agency, The World Factbook: 2012, Washington, DC, https://www.cia.gov/library/publications/the-world-factbook.

72 Central Intelligence Agency, The World Factbook: 2012, Washington, DC, https://www.cia.gov/library/publications/the-worldfactbook.

28
*%&' +"!'($)#(,

The life expectancy at birth of the five focus countries varied by 4.3 years from 78.7 years (United States)

to 83.0 years (Japan). Four of the five focus countries had life expectancies at birth that were higher than

the OECD average of 79.8 years; the remaining country is the United States where life expectancy was

lower. In Japan (83.0 years), Australia (81.8 years), France (81.5 years) and the UK (80.6 years), the

average person born in 2010 could expect to live more than 80 years. Table 8 also includes information

about life expectancy at age 65. Specifically, Japan, at 23.9 years, had the highest life expectancy for

women who survive to the age of 65, while the United States, at 20.3 years, had the lowest among the five

focus countries. The United States was also the only one of the five focus countries that was below the

OECD average of 20.7 years. The remaining countries were above the average, although the UK’s female

life expectancy at age 65 was 20.9 years, which was just (0.2 years) above the OECD average. In both

France (22.6 years) and Australia (21.8 years), a woman who survived to the age of 65 could expect to

live to almost the age of 87, while in Japan it would be to the age of 88. The five focus countries had life

expectancies for men who survive to age of 65 above the OECD average of 17.4 years. France had the

lowest male life expectancy of the five focus countries at 17.5 years; next was the United States at 17.7

years. The UK (18.3), France (18.4), Australia and Japan (18.9 years in both countries) had similar life

expectancies for men who survived to the age of 65. In these four countries a man who survives until the

age of 65 could expect to live until at least the age of 83.

Table 8. Country Comparisons: Life Expectancy

Country Australia France Japan

United

Kingdom

United

States

OECD

Average

Life Expectancy at birth 81.8 years 81.5 yearsa 83.0 years 80.6 years 78.7 years 79.8 years

Life Expectancy at age 65 (women) 21.8 years 22.6 years 23.9 years 20.9 years 20.3 years 20.7 years

Life Expectancy at age 65 (men) 18.9 years 18.4 years 18.9 years 18.3 years 17.7 years 17.4 years

Source: Organization for Economic Cooperation and Development, OECD Health Data 2012 at

http://stats.oecd.org/Index.aspx?DataSetCode=HEALTH_STAT.

Notes: Data are the latest year available; in some instances life expectancy data are for 2009, because that was the latest

year of data reported to the OECD.

a. Data are for 2011.

"'%'$#&!

Each of the five focus countries had a higher percentage of the population aged 60 and over with

dementia than the OECD average of 5.5%. The percentage of the population aged 60 and over with

dementia was above 6.0% in four of the five countries with the exception of Australia, which, at 5.8%,

had the lowest percentage among the five focus countries. The remaining four countries had similar

percentages of the population aged 60 and over with dementia ranging from 6.1% (Japan and the UK) to

France (6.5%). The U.S. percentage of the population aged 60 years and over with dementia was 6.2%

(see Table 9).

Comparing the prevalence of dementia across countries is difficult both because of different

methodologies used to obtain estimates and because estimating dementia prevalence is difficult.

73 Of the

five focus countries, Australia had the lowest percentage of the population aged 60 and over with

dementia among the five focus countries; it also had the smallest population. Given its low percentage

73 Blossom Stephan and Carol Brayne, "Prevalence and Projections in Dementia," in Excellence in Dementia Care: Research into

Practice, ed. Murna Downs and Barbara Bowers (New York: McGraw-Hill, 2008), pp. 9-34.

29
and its small population size overall, Australia had the fewest dementia cases in 2010 and is projected to

have the fewest cases in 2050 (see Table 7 and Table 9). Specifically, Australia had 300,000 cases in

2010 and is projected to have 900,000 cases in 2050. The UK estimates were low in 2010 at 800,000

cases, but the number of cases was expected to grow to between 2.3 million and 3.2 million cases in 2050.

The United States and Japan had the two largest populations among the five focus countries;

consequently, the two countries had the largest number of dementia cases both in 2010 and projected in

2050. Specifically, the United States had an estimated 3.9 million cases in 2010, which was expected to

grow to between 11.7 million and 15.6 million cases in 2050. Japan had fewer cases—an estimated 2.5

million in 2010—and is predicted to have between 7.5 and 10.0 million cases in 2050.

Table 9. Country Comparisons: Dementia

Country Australia France Japan

United

Kingdom

United

States

OECD

Average

Percentage of Population with Dementia (aged 60

years and over)

5.8% 6.5% 6.1% 6.1% 6.2% 5.5%

Number of People with Dementia (2010 or

closest year)a

300,000 1.1 million 2.5 million 800,000 3.9 million NAb

Projected Number of People with Dementia

(2050) (range)

900,000 1.8 millionc 7.5-10.0

million

2.4-3.2

million

11.7-15.6

million

NA

Sources: Alzheimer’s Australia: Key Facts and Statistics 2010, Australia Statistics, at

http://www.fightdementia.org.au/media/key-facts-and-statistics-for-media.aspx. Alzheimer’s International: Martin Prince

and Jim Jackson, World Alzheimer's Report: 2009, Alzheimer's Disease International, London,

http://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf. OECD: Organization for Economic Cooperation and

Development, Health at a Glance 2011, OECD Indicators at http://www.oecd.org/els/healthpoliciesanddata/49105858.pdf.

Mura, Dartingues, and Berr: Thibault Mura, Jean-Francois Dartigues, and Claudine Berr, "How Many Dementia Cases

in France and Europe: Alternative Projections and Scenarios 2010-2050," European Journal of Neurology, vol. 17, no. 2

(February 2010), pp. 252-259. WHO: World Health Organization, Dementia: A Public Health Priority, Geneva,

Switzerland, 2012, http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf.

Notes: Ranges for Japan, the UK, and the United States were projected using assumptions by the WHO (lower bound)

and the Alzheimer’s Society (upper bound). The WHO projected that the number of individuals with dementia would

triple by 2050, whereas the Alzheimer’s Society projected that the number would double every twenty years.

a. Estimating the number of people with dementia is imprecise; different countries use different methodologies to derive

their estimates of the number of dementia cases; this limits cross country comparisons.

b. The WHO estimates that globally there were 35.6 million people with dementia in 2010 and that the majority of

these individuals lived in developed countries, see World Health Organization, Dementia: A Public Health Priority, 2012.

Although this is not an OECD estimate, the global estimate, with its focus on developed countries, partially reflects

the OECD total.

c. Given the number of cases in 2010, this estimate (from Thibault Mura, Jean-Francois Dartigues, and Claudine Berr,

"How Many Dementia Cases in France and Europe: Alternative Projections and Scenarios 2010-2050," European

Journal of Neurology, vol. 17, no. 2 (February 2010), pp. 252-259) seems low. Using the methodology used to project

cases in Japan, the UK and the United States, the range in France would be 3.3 million to 4.4 million.

30
Chapter 2: International Issues in Diagnosis, Research, and

Treatment of Dementia and Alzheimer's Disease

"'$%&)#!$(&'

This chapter highlights particular government initiatives and efforts in the five focus countries related to

diagnosis, research, and treatment. The chapter is divided into three sections covering each of the three

topics and summarizes scientific and medical issues in each area. Each section highlights specific trends,

areas of consensus, and descriptions of selected efforts by the five focus countries. Where there are

notable efforts in other countries, these efforts are included in text boxes. Significant efforts of each of the

five countries focus solely on AD because of its severity, prevalence, and the limits of current scientific

knowledge. Thus, some sections of this chapter are relevant to AD only.

")$'%!%&%(#

Information about diagnosis, research, and treatment in the United States was gathered from the National

Institute on Aging at the National Institutes of Health, and information from non-governmental

organizations such as the Alzheimer’s Association. Information about the four other countries was

gathered from government websites and publications; this information was limited by language barriers

and different amounts of public information. Supplemental information was gathered from professional

journals, professional societies, and non-government organizations (NGO), such as Alzheimer’s

International and Alzheimer’s Europe. This chapter summarizes selected global initiatives and trends in

each of the five focus countries presented in their National Plans.74 Given the different sources available

for each country, there is variation in the level of country-specific material presented. The information

may underrepresent efforts in the five countries to address dementia and AD and is not an evaluation of

programs or policies. Additionally, different cultural values, institutional structures, public financing

mechanisms, and public policies may affect diagnosis, treatment, and research; however, including a

discussion of those factors’ influence is beyond the scope of this report.

"&!'%$#&#!"

This section presents the current international scientific consensus on the diagnosis of dementia, with a

specific focus on diagnosis of AD. In general, international policy efforts found in the national plans aim

to diagnose the diseases earlier and more accurately.

+,//&$- *#(%$".-#' )""!.

The diagnosis of dementia and AD is based on observable symptoms, on a patient’s medical history, and

at times on neurological or psychological tests that assess cognitive impairment. Symptoms observed by

the clinician and reported by the family are also used to make a diagnosis.

Most countries use one of two diagnostic manuals. The clinician matches the symptoms evidenced by the

patient to the symptoms listed in the manual as characteristic of the disease. One diagnostic manual is the

Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM) published

74 See Appendix 3 for a chart comparing the National Plans and a brief description of the key goals of each plan.

75 A diagnosis has two major goals. It provides an efficient way for health care professionals to understand a patient and

communicate to others in the treatment team a course of disease and prognosis. Accuracy in diagnosis is key to providing

appropriate care.

31
by the American Psychiatric Association. The other is the International Statistical Classification of

Diseases and Related Health Problems (ICD), published by the World Health Organization (WHO).

There are definitional differences between the two texts, but the conceptual understanding of dementia

and AD are similar.

76

Specific clinical rating scales for AD, VD, and other dementias are growing more common to aid to

diagnosis.77 For instance, the Clinical Dementia Rating (CDR) is completed from semi-structured

interviews with the patient and someone who knows the patient well.78

6).2/5/2 8''%.' 7.-4&.0 &* &1. !/43+*'/' *5 #-$1./,.("' !/'.4'.

Both diagnostic manuals consider AD a diagnosis by exclusion; that is, if all other causes of dementia

have been ruled out, the patient is diagnosed with AD. For instance, other diseases can cause symptoms

similar to dementia and some other forms of dementia can be identified by an underlying disease (e.g.,

vascular dementia, HIV/AIDS). Diagnosis by exclusion can result in false positives, where individuals are

diagnosed with AD when another disease or condition is causing the dementia.79

The diagnosis by exclusion is due to scientific limitations. It is only recently that the unique brain changes

characteristic of AD have been discovered. These changes can only be verified with specific biomarker

tests (see text box),

80 brain imaging, or autopsy upon death.81 However, most individuals do not have

these tests or do not receive autopsy upon death, adding uncertainty to the diagnosis of AD. Rather, most

cases of dementia are diagnosed by medical

professionals based on criteria that may not

always distinguish AD from other dementias, as

the overlap between the clinical symptoms of AD

disease and other dementias is considerable.82

Even diagnosis by autopsy has limitations. For

instance, autopsies of about 900 patients from 30

National Institute on Aging (NIA) research sites

from 2005-2010 found a range of misdiagnoses.

Patients diagnosed with other dementias, not AD,

but who had signs of AD on autopsy occurred in

39% of the sample. Diagnosis of AD when

another dementia was the underlying cause of the

disorder was also as significant.83

76 M. B. First, "Harmonization of ICD-11 and DSM-V: Opportunities and Challenges," British Journal of Psychiatry, vol. 195

(2009), pp. 381-390.

77 L. Gustafson et al., "The Accuracy of Short Clinical Rating Scales in Neuropathologically Diagnosed Dementia," American

Journal of Geriatric Psychiatry, vol. 18, no. 9 (2010), pp. 810-820.

78 Gustafson, et al., 2010.

79 M. Beck, "Detective Work: The False Alzheimer's Diagnosis," Wall Street Journal, August 28, 2012, p. D1.

80 A biomarker is a biological characteristic or property that can be objectively measured and evaluated as an indicator of normal

biologic processes, disease processes, or pharmacologic responses to a therapeutic innovation. See Biomarkers Definitions

Working Group, National Institutes of Health, “Biomarkers and Surrogate Endpoints: Preferred Definitions and Conceptual

Framework,” Clinical Pharmacology and Therapeutics, 69(3) (2001), 89-95.

81 C. Qui, M. Kivipelto, and E. von Strass, "Epidemiology of Alzheimer's Disease: Occurrence, Determinants, and Strategies

Toward Intervention," Dialogues in Clinical Neuroscience, vol. 11, no. 2 (2009), pp. 111-128. Hereafter, C. Qui et al., 2009.

82 Alzheimer's Association, 2012 Alzheimer's Disease Facts and Figures, pp. 6-8. Alzheimer's Association, Washington, DC.

83 T. G. Beach et al., "Accuracy of the Clinical Diagnosis of Alzheimer Disease at National Institute on Aging Alzheimer Disease

Centers, 2005-2010," Journal of Neuropathology and Experimental Neurology, vol. 71, no. 4 (April 2012), pp. 266-273.

Alzheimer’s Disease Biomarkers

An active area of research to enhance early diagnosis is the

identification of biomarkers for AD. Certain amyloid proteins,

particularly Aÿ, are found at abnormal levels in the brains of

individuals with AD. These amyloid proteins may be markers

of AD-related changes. Detecting these amyloid proteins is

possible in several ways, including:

• Cerebral spinal fluid sampled through a spinal tap or

lumbar puncture.

• Brain scans using radioactive dyes to highlight amyloid

protein build up in the brain.

Source: : C. Qui, M. Kivipelto, and E. von Strass,

"Epidemiology of Alzheimer's Disease: Occurrence,

Determinants, and Strategies Toward Intervention," Dialogues

in Clinical Neuroscience, vol. 11, no. 2 (2009), pp. 111-128.

32
The lack of diagnostic accuracy is a problem for patients, physicians, and family members. Because most

individuals do not receive an early diagnosis, by the time an individual is diagnosed with AD, it is too late

to address the already irreversible neuronal loss, and treatments are unlikely to have a major impact on the

disease course.

84 A 2012 global survey of physicians found that almost two-thirds identified the lack of a

diagnostic test as a barrier to providing accurate diagnosis and treatment for dementia and AD.

85 This lack

of diagnostic clarity is a problem for providing anticipatory guidance to families about the course of the

disease in order to develop active coping and grieving strategies. As a result of these problems, the

National Plans of the five selected countries identify improving diagnosis as key goals.86

In 2011, the NIA and the Alzheimer’s Association (U. S.) empanelled a task force with the goal of

revising the 1984 criteria for AD. 87 This task force included members engaged in research in this area

from Australia, Canada, France, Germany, Japan, the Netherlands, the United Kingdom (UK), and the

United States. The Task Force recommendations include revising the diagnosis to identify an AD

spectrum. The spectrum would recognize progressive phases of the disease:

1. Pre-clinical (or pre-symptomatic) AD;

2. Mild cognitive impairment (MCI) due to AD; and

3. Alzheimer’s disease.

The first two phases are identified as research criteria in need of validation especially due to the inclusion

of biomarkers that have only been used in research studies, but not yet adopted for diagnostic purposes in

the general population.88 Previously only the final stage of the disease was recognized as AD. Research

validating these criteria is ongoing.

89 These criteria have not yet been adopted by the standard diagnostic

manuals DSM or ICD.

"&#&!$'%

This section presents the current global scientific consensus on research goals for dementia, with a

specific focus on AD. In general, global policy efforts follow the scientific consensus, with efforts

focused on understanding the biology of the disease, improving diagnosis, and developing cures.

90

Although all dementias are irreversible, knowing the cause allows medical and public health professionals

to focus efforts on mitigating the progression of the disease by targeting the underlying condition.

Much of the global research emphasis in this area focuses on AD as a world-wide problem due to its

prevalence, severity, and unknown causes. These research targets include: differentiating AD from the

changes of normal aging; understanding AD at the cellular and molecular levels; understanding the start

and progression of the disease; early identification and diagnosis; and genetic and environmental risk

factors.

91

84 See C.Qui et al., 2009.

85 Eli Lilly, Inc., press release, September 16, 2012,

http://files.shareholder.com/downloads/LLY/2078942632x0x600635/5bd90bd0-2ac0-4cf7-9501-

71d71f620446/LLY_News_2012_9_19_Product.pdf.

86 For more information, see.Appendix 3

87 G. M. McKhann et al., "The Diagnosis of Dementia Due to Alzheimer's Disease: Recommendations for the National Institute

on Aging - Alzheimer's Association Workgroups on Diagnostic Guidelines for Alzheimer's Disease," Alzheimer's & Dementia,

vol. 7, no. 3 (May 2011), pp. 263-269.

88 For more information on biomarkers, see this memorandum at “Biomarkers Research in Alzheimer’s Disease.”

89 Alzheimer's Association, "New Research Reported at Alzheimer's Association Global Conference Advances Validation of

New Diagnostic Guidelines," press release, July 18, 2012, http://www.alz.org/aaic/wed_130pmct_nia.asp.

90 R. J. Hodes, "Public Funding for Alzheimer Disease Research in the United States," Nature, vol. 12, no. 7 (July 2006).

91 See Hodes, 2010.

33
!$#%&$ "###*)$"*,%$! %! +'-'*"(&

There has been a growing consensus that collaborating would be advantageous in researching AD. The

EU has established a European Alzheimer’s Disease Consortium (EADC) and a Joint Research Program

in Neurodegenerative Diseases (JPND), which include AD and dementia research. EADC is a network of

50 European centers for clinical and biomedical research in dementia and AD. EADC collaborates with a

U.S. lead project Alzheimer’s Disease Neuroimaging Initiative (ADNI) on bio-imaging research. JPND

publishes a strategic research agenda identifying projects that would benefit from coordination and

provides funding for research grants.92 The focus includes origins of diseases, disease mechanisms,

diagnosis, treatments and prevention, health care, and social care.

In the United States, the National Alzheimer’s Plan includes an emphasis on global cooperation and

coordination.93 In response, NIA initiated a global research inventory to collect and categorize existing

global research as a first step in efforts to determine where future research should be targeted.94 This

database is publicly available and searchable, but currently includes primarily U.S. projects.95 The

following countries and global associations participated in planning activities related to establishing such

an inventory and may participate in registering projects: Alzheimer's Society of Canada; Canadian

Institutes of Health Research; Alzheimer's Society - United Kingdom; Alzheimer’s Research - United

Kingdom; National Research Foundation on Alzheimer's and Related Diseases of France; Fatebenefratelli

Hospital of Italy; German Government; Japan Government - New Technologies; and Alzheimer's Disease

International.96 The five focus countries in this report participate in global research efforts as listed in

Table 10.

92 For more information, see http://www.neurodegenerationresearch.eu/fileadmin/Documents/2012/SRArelated/JPND_brochure_final_Hyperlink_2012.pdf.

93 Department of Health and Human Services, National Plan to Address Alzheimer's Disease, May 12, 2012 (last updated),

http://aspe.hhs.gov/daltcp/napa/NatlPlan.shtml.

94 Telephone conversation between the author and the Office of Planning, Analysis, and Evaluation, National Institute on Aging,

August 7, 2012.

95 See http://iadrp.nia.nih.gov/cadro-web/.

96 E-mail to the author from the Office of Planning, Analysis and Evaluation, National Institute on Aging, August 16, 2012.

34
Table 10. Overview of Selected Research Activities of Five Focus Countries

Project Description Australia France Japan

United

Kingdom

United

States

Alzheimer’s Disease

Neuroimaging Initiative

(ADNI)

ADNI aims to discover and

validate biomarkers (e.g., blood

tests, cerebrospinal fluid,

MRI/PET imaging) for early

diagnosis of AD.

a

! ! ! ! !

Dominantly Inherited

Alzheimer Network

(DIAN)

DIAN is an international

research partnership to

understand early-onset AD.b

! NA NA ! !

European Alzheimer’s

Disease Consortium

(EADC)

EADC is a network of

European centers of excellence

in AD.d

NA ! NA ! NA

EU Joint Program on

Neurodegenerative

Disease (JPND)

JPND is an initiative is to find

cures for neurodegenerative

diseases and to improve early

diagnosis and targeted

treatments.

NA ! NA ! NA

International Genomics

of Alzheimer’s Disease

IGAP’s aims to discover and

map all the genes involved in

AD.e

NA ! NA ! !

NIA International

Alzheimer’s Disease

Research Portfolio

(IADRP)

IADRP aims to provide a

database of current research to

improve coordination, leverage

of resources, and reduce

duplication of effort.

g

NA ! ! ! !

Source: Information compiled by CRS from information detailed in Table Notes.

Notes: A check mark indicates participation. NA = does not apply.

a. For more information on ADNI see http://www.adcs.org/studies/imagineadni.aspx.

b. Germany also participates in DIAN.

c. For more information on DIAN, see http://www.dian-info.org/faq.htm.

d. For more information on EADC, see http://www.eadc.info/sito/pagine/home.php.

e. For more information on IGAP, see

http://www.med.upenn.edu/aging/documents/FINALsummer2011IOAnewsletterinhouse.pdf.

f. For more information, see G. M. McKhann et al., "The Diagnosis of Dementia Due to Alzheimer's Disease:

Recommendations for the National Institute on Aging - Alzheimer's Association Workgroups on Diagnostic

Guidelines for Alzheimer's Disease," Alzheimer's & Dementia, vol. 7, no. 3 (May 2011), pp. 263-269.

g. For more information on IADRP, see http://iadrp.nia.nih.gov/cadro-web/.

!('+0&/,&% 1,%,0&.* () "-$*,(+,&#% 2(%,0%,

Global research efforts are centered on improving the accuracy of diagnosis of dementia as well as

increasing early diagnosis of AD;97 this effort has led researchers to focus on biomarkers for AD.98 New

research in brain-imaging indicates that the physiological changes of AD may start 10-20 years before

97 See D. M. Holtzman et al., 2011.

98 Biomarkers also have a role in research, for more information, see

http://www.businesswire.com/news/home/20120123006114/en/European-Medicines-Agency-Deems-Imaging-BiomarkerQualified.

35
symptoms appear, suggesting that medical professionals may not be detecting the disease in its earliest,

and possibly easiest to treat phases. The current scientific consensus is that tracking biomarkers of the

disease, rather than relying solely on visible symptoms, is the most accurate means to diagnose and

evaluate the progression of the illness.99 The efforts to develop tests based on biomarkers are a global

research endeavor and ADNI collaborating sites are world-wide, and include the five focus countries.

100

Figure 8 is a representation of the course of the disease tracked by key biomarkers and the integrity of

nerve cells, which is the physiological basis of adequate cognitive functioning. For instance, amyloid

plaques are a key biomarker of AD, as abnormally high levels of plaque in the brain create significant

nerve cell damage. Additionally, abnormal Tau proteins aggregate creating neurofibrillary tangles

disrupting brain function.

101 Figure 8 illustrates that as amyloid plaque increases and neurofibrillary

tangles form, neuronal integrity and normal brain function declines. The lower section of the chart

describes other physiological changes that occur with the progression of the disease, such as the presence

of Tau proteins and amyloid beta (Aβ), a specific form of amyloid protein linked to AD. Figure 8.

Selected Biomarkers and Progression of Alzheimer’s Disease (AD)

99 See C. Qui et al., 2009.

100 See http://www.alz.org/research/funding/partnerships/ww-adni_japan.asp.

101 Neurofibrillary tangles are abnormal twisted masses of protein fibers within nerve cells found in patients with AD. Source:

Gale Encyclopedia of Medicine, 2008.

36
Figure 8. Selected Biomarkers and Progression of Alzheimer’s Disease (AD)

(Progression of light to dark represents movement from health to early stages of illness to most severe illness)

Source: D. M. Holtzman, J. C. Morris, and A. M. Goate, "Alzheimer's Disease: The Challenge of the Second Century,"

Science Translational Medicine, vol. 3, no. 77 (April 6, 2011), p. 5.

Notes: CDR = Clinical dementia rating scale; AD = Alzheimer’s disease; Regional hypometabolism = decline in brain

metabolic activity as neurons die; brain network dysfunction = communication failure in the connections of the brain;

inflammation and oxidative stress = advanced physiological signs of AD; Tau accumulation = increase in another abnormal

protein; brain Aβ = amyloid-beta-a specific amyloid protein linked to AD; SNPs = Single nucleotide proteins; APOE =

Apolipoprotein E, a specific gene related to AD.

One of the challenges for researchers is to translate research on biomarkers from the laboratory to medical

practice. Progress in this area occurred in April 2012, when the Food and Drug Administration approved a

radio-diagnostic agent (florbetapir F 18) to be used for diagnostic imaging (PET scans) of amyloid

plaques in patients with cognitive impairment to determine whether a diagnosis of AD is appropriate.102

This commercially-available product allows PET scans to be used in medical practice rather than used

only as a research tool. Access to this agent is somewhat limited due to its chemical composition, which

loses its strength within hours, so it must be used close to its manufacturing sites.103

102 See FDA website for drug approvals:

http://www.accessdata.fda.gov/scripts/cder/drugsatfda/index.cfm?fuseaction=Search.DrugDetails.

103 See http://www.prnewswire.com/news-releases/amyvid-florbetapir-f-18-injection-now-available-in-select-us-markets156292875.html.

37
1+*+%'-& 0+&+/(-) '* ".$)+',+(#& !'&+/&+

Although individuals may have similar symptoms of AD, there may be different genetic pathways and

multiple genetic origins. Familial studies indicate that early - onset AD, which accounts for about 5% of

all AD cases, is caused by mutations in 3 genes located on 3

different chromosomes.

104 One mutation is in a gene that is

for amyloid protein precursors, which create an abnormal

form of amyloid protein amyloid-beta (Aβ). The two other

genes appear to cause other abnormal proteins (presenilins)

also linked to amyloid formation. Late - onset (over age 60)

AD appears to be related to the inheritance of a particular

variant of an apolipoprotein E (APOE) known as APOE

e4.

105 APOE e4 is associated in some studies with an

increased rate of cognitive decline.

106

A recent notable discovery in genetics occurred in Iceland

where researchers identified a gene that appears to play a

protective role in AD (see textbox).

Genetic research on complex diseases requires large sample

sizes.

107 This type of research is facilitated with

collaborations between research centers to pool data. There

are several examples of this type of collaboration.

In 2011, a global consortium was formed to explore the

genetic origins of AD. Four groups (two from the United

States), one from France and one from the UK joined

together to gather appropriate numbers of patients and

controls to study these issues. The groups created a shared database to record information on a pool of

40,000 individuals. This project, the Global Genomics of Alzheimer’s Project (IGAP), pools funding from

non-profit organizations, the Alzheimer’s Association (U.S.) the Foundation Plan Alzheimer, a non-profit

entity created to implement the research agenda of the French National Plan.108

In addition, NIA has funded a national genetics data repository that will be the storage site for genetic

data from all information derived from NIA-funded research on late-onset AD. The National Cell

Repository for Alzheimer’s Disease maintains biological samples and patient data to aide in research. NIA

also funds the AD genetics consortium and the National Alzheimer’s Coordinating Center; all located at

medical research institutions to coordinate data and patient information.

104 See D. M. Holtzman et al., 2011.

105 Ibid.

106 Ibid.

107 J. Craig, "Complex Diseases: Research and Applications," Nature Education, vol. 1, no. 1 (2008),

http://www.nature.com/scitable/topicpage/complex-diseases-research-and-applications-748.

108 See http://www.alz.org/documents_custom/final_alzassoc_igap_news_release_1-31-11.pdf.

Genetic Research in Iceland

Iceland took a unique step in 1999 through a

private-public partnership and created a national

genetic data base by sampling all of its then

270,000 residents. This source of genetic

material is unique and permits understanding of

many health conditions, including dementia and

AD.

A gene coding mutation, A673T, appears to be

protective against AD and general cognitive

decline. About 1,800 Icelanders carrying this

mutation were less likely to develop Alzheimer’s

Disease compared to the remaining population.

These individuals evidenced less cognitive decline

due to general aging. The mechanism of this

genetic mutation reduces amyloid beta

production by reducing the formation of amyloid

proteins. This mutation also slows the formation

of amyloid plaques.

Source: T. Jonsson et al., “A Mutation in APP

Protects Against Alzheimer’s Disease and AgeRelated Cognitive Decline.” Nature, July 11,

2012.

38
*'.')/(& "$ +&)/!)(',-%()#

*0().!($./ '"0 ,#-&(%!(0+/

!#"$%"$

There are a number of research programs

to investigate early-onset AD. For

instance, the Dominantly Inherited

Alzheimer Network (DIAN) is initiating

an international research network for

early-onset AD.109 Another international

collaboration is a study is investigating a

potential drug therapy for early-onset AD

(see text box). Studying patients who

will most likely develop the disease, but

have not yet developed symptoms,

provides researchers a better chance at a

significant discovery. The hope is that

these drugs may be effective for all AD

patients.

Another international effort by Australia,

the United Kingdom, and the United

States is studying the development of early-onset AD and will evaluate the effect of three different drugs

on those with early, pre-symptomatic AD. All volunteers have genetic mutations that have been shown to

cause early-onset AD. The goal is to evaluate the drugs’ abilities to slow or prevent the development of

the disease in these patients. This effort is significant as it attempts to intervene in pre-symptomatic

patients, and it evaluates three different drugs that affect amyloid proteins in different ways. This project

is an effort of the Dominantly Inherited Alzheimer’s Network Trials Unit, global research collaboration

(see Table 10).

Most of the experimental drugs target the amyloid protein build-up and additional studies are underway to

investigate anti-amyloid therapies that reduce production of proteins; reduce aggregation of proteins; and

increase the removal of proteins.110 Other research is investigating Tau proteins, which have an aberrant

chemical structure in AD; cellular dysfunction; and a variety of preventive strategies such as omega-2

fatty acids.

After some initial success in developing medications that target symptoms, recent research in diseasemodifying medications has led to both publicized setbacks and progress.

111 In 2011 representatives from

academia and industry met, including representatives from the European Union (EU), Japan, and the

United States to discuss these issues and recommend approaches to improve research.112 Many attribute

the setbacks in drug development to limitations in our knowledge of the AD disease process; problems in

109 For more information, see http://dian-info.org/.

110 See http://www.alz.org/documents_custom/final_alzassoc_igap_news_release_1-31-11.pdf.

111 Eli Lilly stopped development of two Alzheimer’s Disease drugs in the last two years

(http://www.bloomberg.com/news/2012-08-24/lilly-alzheimer-s-drug-slows-course-of-disease-in-some-patients.html) and Pfizer,

Johnson & Johnson stopped development of an additional drug in August 2012 (http://www.bloomberg.com/news/2012-08-

06/pfizer-j-j-drop-alzheimer-s-drug-studies-after-failure.html). However, Eli Lilly recently released results for a drug that may

improve the symptoms of mild disease, http://www.nytimes.com/2012/10/09/business/eli-lilly-drug-shows-promise-in-treatingmild-alzheimers.html.

112 B. Vellas et al., 2012.

Global Collaboration in Genetics: Colombia

Studies of genetics pose unique problems as identifying those with specific

genetic mutations often occurs only after diagnosis, if at all. A unique

population in Medellin, Colombia has provided a unique opportunity to study

genetics, as this rural clan has been identified as carrying the gene for earlyonset AD.

The National Institutes of Health, Banner Alzheimer’s Institute in Phoenix,

University of Antioquia, Colombia, and Genentech are collaborating in a global

study of 300 people in Medellin, Colombia who suffer from early-onset AD as

well as some individuals from the United States.

Three hundred members of an isolated extraordinarily large extended familyclan affected by the disease are participating in a drug trial that will focus on

amyloid plaque build-up. Early onset of AD in this family is at about age 30,

with full-blown AD by the age of 45. Genentech will be conducting a 5 year

trial of a novel immunotherapy, crenezumab.

This project is part of the Alzheimer’s Prevention Initiative created to evaluate

promising treatments and part of the U.S. National Plan. Funding is from a

private-public partnership splitting costs between National Institutes of Health

(NIH) and philanthropic funds from the Banner Institute.

Source: NIH Fogarty Global Center “First-ever Alzheimer’s prevention trial to

take place in Colombia, Press Release, May 15, 2012.

http://www.fic.nih.gov/News/Pages/2012-alzheimer-prevention-trialcolombia.aspx; and, M. G. Banner “Federal Funds Launch First Alzheimer’s

Prevention Study, Clinical Psychiatry News, May 15, 2012.

39
diagnosis; choice of therapeutic target; and design of clinical trials.113 For instance, one hypothesis is that

the brain damage caused by the disease could be too advanced for the medication to have an effect.

Alternatively, some medications could have a window of opportunity in the course of the disease that may

have elapsed. In addition, some elderly patients may have multiple forms of dementia, other than AD, that

are not affected by the medication. Because progress in this area faces challenges such as disparate

outcome measures; high patient dropout rates; and duplication of efforts,114 there is an increasing global

effort to coordinate research and to build a global consensus on methodological issues.

*&-&)"(# +,$'!$%

The five focus countries provide funding for research on dementia and AD. To put these funding levels in

perspective, Table 11 provides per capita spending levels for FY2010;115 Table 11. Total Per Capita

Spending on Research on Dementia and Alzheimer’s Disease by Focus Country in Millions of $U.S.

Table 11. Per Capita Spending (2010)

(population in millions)

Categories Australia France Japan

United

Kingdom

United

States

Population 21.5 62.5 127.0 62.3 310.2

Spending 21.4 49.0 NA 42.0 450

Per Capita

Spending-

$U.S.

1.0 0.78 NA 0.67 1.45

Source: Compiled by CRS from OECD population statistics http://www.oecd-ilibrary.org/sites/factbook-2010-

en/01/01/01/index.html?contentType=/ns/Book,/ns/StatisticalPublication&itemId=/content/book/factbook-2010-

en&containerItemId=/content/serial/18147364&accessItemIds=&mimeType=text/html; and country spending levels, see

Tables 6-7 converted to $U.S.

Note: NA = Not Available.

Note: CRS is not confident about the completeness of the funding level amounts listed for each country’s, so that this

table presents information that is potentially an under or over-estimate of spending. This accounting may underestimate

total research spending as some research on aging programs may include grants and programs relevant to dementia and

Alzheimer’s Disease.

"#%$&!'(!

Australia is currently engaged in efforts to improve the understanding of dementia and AD with a special

focus on causes, diagnosis, lifestyle, and diet that may influence onset and aide in prevention strategies.116

For instance, a new priority is $10 million ($10.5 million in 2012 $U.S)117 in funding for a program that

aims to understand the causes, including lifestyle and diet.118

113 F. Mangiatasche et al., "Alzheimer's Disease: Clinical Trials and Drug Development," Lancet Neurology, vol. 9, no. 7 (July

2010), pp. 702-716.

114 B. Vellas et al., "Alzheimer's Disease Therapeutic Trials: EU/U.S. Task Force Report on Recruitment, Retention, and

Methodology," Journal of Nutrition, Health & Aging, vol. 16, no. 4 (2012), pp. 339-345. Hereafter B. Vellas et al., 2012.

115 Due to data limitations this was the only year for which there was sufficient information.

116 For more information and funding levels, see http://www.csiro.au/Outcomes/Health-and-Wellbeing/Prevention/AIBLStudy.aspx.

117 Conversion rates calculated for each year based on exchange rate for September 19, published by

http://www.oanda.com/currency/historical-rates/.

118 For more information, see http://www.csiro.au/Outcomes/Health-and-Wellbeing/Prevention/AIBL-Study.aspx.

40
Australia’s research infrastructure includes the Dementia Collaborative Research Centres, which are a

central element of its national plan. Each center specializes in one of three areas: assessment and better

care; early diagnosis and prevention; and workforce and consumers.

119

The Commonwealth Scientific and Industrial Research Organization (CSIRO), Australia’s national

science agency, is home to large-scale national research programs. CSIRO provides support and funding

for a variety of programs in health and technology.120 For instance, the Australian Imaging, Biomarkers

and Lifestyle (AIBL) project is a collaboration of CSIRO, the National Aging Research Institute, and

Australian universities and research institutes.

AIBL aims to develop and confirm the utility of diagnostic biomarkers that could chart the course of AD.

121 Recently Australian researchers have made progress in identifying plasma biomarkers for AD that

could be developed into a blood test for AD.122 Currently biomarkers only detect amyloid proteins

through cerebral spinal fluid or a PET scan, which are costly and a burden on patients.

The most recent information on research funding on dementia and AD is presented in Table 12 as

described in the Australian national plan.123 Research funding has increased over the five-year period.

Table 12. National Health and Medical Council of Australia: Public Funding for Research in

Dementia and Alzheimer’s Disease

(in millions by calendar year)

Currency 2007 2008 2009 2010 2011

$AUS 12.7 17.3 21.8 22.8 23.4

$U.S. 10.7 14.4 18.9 21.4 24.2

Source: National Health and Medical Council of Australia, see http://www.nhmrc.gov.au/grants/research-funding-statisticsand-data/summary-funding-data.

Note: Conversion rates calculated for each year based on exchange rate for September 19, published by

http://www.oanda.com/currency/historical-rates/.

"#!$&%

France maintains a broad research program supported by public and private funding. The French National

Research and Innovation Plan includes research into dementia and AD as major goals.124 The Ministry of

Higher Education and Research administers research priorities, programs, and evaluation.

125

In 2008 France created the French National Foundation on Alzheimer’s Disease and related disorders,

126

a non-profit foundation, to coordinate the scientific goals of the French National Plan.127 The French

119 See http://www.fightdementia.org.au/dementia-collaborative-research-centres.aspx.

120 For more information see CSIRO’s website: http://csiro.au/.

121 For more information, see http://csiro.au/en/Portals/Media/Alzheimers-diseases-research-inroads.aspx.

122 J. D. Doecke et al., "Blood-Based Biomarkers for Diagnosis of Alzheimer Disease," Archives of Neurology, July 16, 2012.

123 For more information, see Appendix 3.

124 Republique Francaise, Strategie Nationale de Recherche et d’Innovation, http://media.enseignementsuprecherche.gouv.fr/file/SNRI/69/8/Rapport_general_de_la_SNRI_-_version_finale_65698.pdf.

125 For more information, see Ministere de L’Enseignment Superieur et de la Recherche, http://www.enseignementsuprecherche.gouv.fr/cid56382/organisation-du-systeme-de-recherche-et-d-innovation.html.

126 For more information, see Foundation Plan Alzheimer, http://www.fondation-alzheimer.org/.

127 Alzheimer Plan 2008-2012: L'Engagement De Tous, Alzheimer Plan 2008-2012: L'Engagement De Tous: Implementation as

of 1st February, 2012, February 1, 2012.

41
government provided an initial €200 million ($292 million in 2008 $U.S.).128 This non-profit structure

allows the Foundation to gather funding from multiple sources within the government as well as EU and

private funding. French efforts focus on a variety of areas within research, including neurology,

epidemiology, genomics, imaging, and biochemistry. The French have increased their participation in

clinical trials globally. As noted in Table 10, France participates in European and global research

programs.

129 In addition, the network of memory clinics allows the creation of a data base for

epidemiological and clinical projects, including a national prospective patient cohort.130 Table 13 lists the

French public funding for research in dementia and AD. Research funding increased in four of the fiveyears.

Table 13. France: Public Funding for Research in Alzheimer’s and Related Diseases

(in millions)

Currency 2008 2009 2010 2011 2012

€EU 29.0a 42.0 38.0 46.0 45.0

$U.S. 42.0 61.7 49.0 59.3 59.1

Source: Republique Francaise, National Plan for Alzheimer and Related Diseases 2008-2012, February 1, 2008,

http://www.plan-alzheimer.gouv.fr/, p. 7.

Notes: Conversion rates calculated for each year based on exchange rate for September 17 of each year, published by

http://www.oanda.com/currency/historical-rates/. It is unclear whether the funding is for calendar or fiscal year.

a. Includes €14.1 from the Foundation for Scientific Cooperation of the European Union (EU).

!$"$#

The Japanese National Dementia Strategy emphasizes introducing preventive measures, improving

diagnosis, and developing therapeutic procedures and care.

131 The major governmental entities funding

dementia and AD research in Japan include the Ministry of Education, Science, Sports and Technology

that funds basic research (including mechanisms of disease) and the Ministry of Health, Labor and

Welfare (MHLW) that addresses health and clinical research.132 Over the last years funding has increased

for research in genomics, large-scale basic science, and integrative neurology.

The Committee could not locate funding levels for research from government sources for the last 7 years.

The Committee did locate a description of past funding levels in a journal article and that information is

included in Table 14. Research funding increased between 2003 and 2004, but has declined across the

entire five-year period reported.

128 Calculated based on exchange rate for September 24, 2008 at http://www.oanda.com/currency/historical-rates/.

129 Republique Francaise, Alzheimer Plan 2008-2012: Implementation as of 1st February 2012, http://www.planalzheimer.gouv.fr/IMG/pdf/Plan_Alzheimer_4th_anniversary-2.pdf.

130 See, http://www.plan-alzheimer.gouv.fr/IMG/pdf/Foundation_Plan_Alzheimerthe_need_for_a_major_concerted_action_in_research_in_France.pdf.

131 Y. Arai, A. Arai, and Y, Mizuno, "The National Dementia Strategy in Japan," Global Journal of Geriatric Psychiatry, vol. 25

(2010), pp. 896-899.

132 T. Iwatsubo, Y. Ihara, and I. Kanazawa, "Alzheimer Disease Funding in Japan: Public Funding," Nature Medicine, vol. 12, no.

7 (July 2006), pp. 778-779.

42
Table 14. Japan: Public Funding of Research in Dementia and Alzheimer’s Disease

(in millions)

Currency 2001 2002 2003 2004 2005

¥JAP 1,600 1,400 1,300 1,450 1,200

$U.S. 13.6 11.6 11.2 13.2 10.8

Source: T. Iwatsubo, Y. Ihara, and I. Kanazawa, "Alzheimer Disease Funding in Japan: Public Funding," Nature Medicine, vol.

12, no. 7 (July 2006), p. 778.

Note: Conversion rates calculated for each year based on exchange rates for September 17, published by

http://www.oanda.com/currency/historical-rates/. It is unclear whether the funding is by calendar or fiscal year.

)"%#'( *%"&(!$

The UK has several governmental agencies and research institutes that are responsible for research on

dementia and AD. One unique aspect of UK research is a focus on evaluating treatment. For instance, the

National Institute for Health Research (NIHR) performs applied health research, whose overarching goals

are cause, cure, and care. Research areas include: efficacy and mechanism evaluation; health services

research; health technology assessment; grants for applied research; public health research; research for

patient benefit; and service delivery and organization.

133 Treatment evaluations assess the effectiveness of

treatments to improve all levels of care, including evaluating medications for behavioral symptoms,

evaluating cost benefit analysis of brain imaging in diagnosis, and evaluating community-based care.

134

Research into treatments is complicated by the long course of the disease. As the progression of the

disease occurs over decades, assessing the success of any treatment will necessitate long observational

periods.

135

As part of his Dementia Challenge, the Prime Minister, David Cameron, has committed £66 million

($107 million in 2012 $U.S.) for dementia research by 2015, which more than doubles the 2010 funding

level of £26.6 million ($42 million in 2010 $U.S.).136 The Committee could not locate more

comprehensive information on research funding.

!%&#'( "#)#'$

The U.S. National Plan envisions a coordinated strategy to accelerate early diagnosis, increase treatment

development, and improve global research efforts.137 Research funding for dementia and AD at the NIH

dates back to the establishment of the NIA in 1974;138 the NIA is the major research institute at the NIH

for dementia and AD research grants, although many institutes have dementia and AD projects. A full list

of NIA funding programs for dementia and AD can be found at the NIH website.139 The total FY2009-

FY2012 for NIH programs on AD is shown in Table 6.

140 Research funding was highest in 2009.

133 See NIHR website for a list of treatment-oriented research projects: http://www.nihr.ac.uk/research/Pages/Dementia.aspx.

134 See http://www.nihr.ac.uk/research/Pages/Dementia.aspx.

135 H. Hampel et al., "Biomarkers for Alzheimer's Disease Therapeutic Trials," Progress in Neurobiology, vol. 95, no. 4

(December 2011), pp. 579-593.

136 Conversion rates calculated for each year based on exchange rate for September 17, published by

http://www.oanda.com/currency/historical-rates/.

137 Department of Health and Human Services, National Plan to Address Alzheimer's Disease, May 12, 2012 (last updated),

http://aspe.hhs.gov/daltcp/napa/NatlPlan.shtml.

138 P.L. 93-296 authorized the creation of National Institute on Aging and required the institute to develop a national

comprehensive plan to coordinate the Department of Health, Education and Welfare (now Department of Health and Human

Services) agencies involved in aging research.

139 For more information, see http://grants.nih.gov/grants/guide/search_results.htm?text_curr=alzheimer%27s&scope=pa43
Table 15. U.S.: NIH Funding for Alzheimer’s Disease Research

(in millions by fiscal year)

Currency FY2009

American

Recovery and

Reinvestment

Act of 2009a

Funds

Distributed in

FY2009

FY2010

American

Recovery and

Reinvestment

Act of 2009a

Funds

Distributed in

FY2010

FY2011 FY2012

$U.S. 457 77 450 79 448 498

Source: National Institutes of Health, Estimates of Funding for Various Research, Condition, and Disease Categories

(RCDC) http://report.nih.gov/categorical_spending.aspx confirmed by Moyer Materials, Department of Health and Human

Services.

a. P.L. 111-5.

FY2012 includes funding for National Alzheimer’s Plan as authorized by P.L. 111-375. NIA established

specialized AD research and treatment centers located at medical centers across the U.S to translate

research to advance diagnosis and treatment. The participating centers perform basic and clinical science,

as well as develop specialized expertise.141 A shared goal is to create a collaborative network. Data and

information from the centers are managed by the National Alzheimer’s Coordinating Center illustrated in

Figure 9.

Figure 9. Map of U.S. NIH Alzheimer Disease Centers

(by city and state)

Source: National Institute on Aging, NIH: http://www.nia.nih.gov/alzheimers/alzheimers-disease-research-centers. Site has

complete list of all medical centers.

Note: There are no centers in Alaska or Hawaii.

rfa&year=active&sort= and dementia; and http://grants.nih.gov/grants/guide/search_results.htm?text_curr=dementia&scope=parfa&year=active&sort=.

140 These funds may include funding for dementia and related diseases.

141 For more information, see http://www.nia.nih.gov/alzheimers/alzheimers-disease-research-centers.

44
"$'!#&'%#

This section presents the most recent international consensus on the treatment of dementia, including

selected efforts of the five focus countries.

"$!%$&!#

The five focus countries have the same tools available for treating dementia and AD; however, access to

care varies depending on the health care systems in each country. Further, the stigma of dementia and AD

and the pessimism about the course of the disease have become barriers for patients to seek treatment and

divulge information helpful to providers in making a diagnosis of dementia or Alzheimer’s Disease.142 As

a result, some patients may still not have access to treatments that could be helpful.143

Expert opinion recommends focusing on early diagnosis and prompt treatment.144 Further, a global effort

is underway to develop more effective treatments for dementia and AD. Once dementia and AD are

diagnosed, treatment is dependent on the stage of the disease. Figure 10 illustrates the different

treatments based on the stage of disease. Treatment is best initiated in the early phases when individuals

are asymptomatic or have signs of mild cognitive impairment (MCI) before major brain damage occurs.

145

Unfortunately, current treatments are limited, and currently dementia and AD are progressive chronic

diseases for which there are no known cures. The treatments that are available attempt to maintain

cognitive abilities. The treatments available include prescription medications that enhance cognitive

function and cognitive training that increases the ability to perform activities of daily living (ADL). For

instance, cognitive training146

appears to have a protective function and may maintain levels of cognitive

functioning.

147 However, there is limited evidence that such activities prevent the eventual characteristic

cognitive decline of dementia and AD.148

As dementia and AD progress, the ability of the patient to live independently is reduced. Over time

patients are no longer able to perform certain ADLs, the self-care necessary for daily living, such as

bathing, budgeting, buying and preparing food, and dressing. Eventually care in the middle to late stages

of the diseases involves long-term care services, including social services and residential treatment.

142 Eli Lilly, Inc., press release, September 16, 2012,

http://files.shareholder.com/downloads/LLY/2078942632x0x600635/5bd90bd0-2ac0-4cf7-9501-

71d71f620446/LLY_News_2012_9_19_Product.pdf and Alzheimer’s Disease International, Overcoming the Stigma of Dementia,

World Alzheimer Report 2012, http://www.alz.org/documents_custom/world_report_2012_final.pdf.

143 Alzheimer's Disease International, National Alzheimer and Dementia Plans Planned Policies and Activities: Early Detection,

Access to Diagnosis and Stigma Reduction, April 2012, p. 12, http://www.alz.co.uk/sites/default/files/national-alzheimer-anddementia-plans.pdf.

144 See C. Qui et al., 2009.

145 J. L. Cummings, R. Doody, and C. Clark, "Disease-Modifying Therapies for Alzheimer's Disease: Challenges to Early

Intervention," Neurology, vol. 69, no. 16 (August 15, 2007), pp. 1622-1634.

146 Cognitive training consists of exercises designed to improve cognitive functioning, including memory, concentration,

reasoning, and planning. Exercises for dementia and AD exercises are designed to improve learning, memory, executive

functioning, and activities of daily living, depression, and general cognitive problems. See M. Crowe et al., "Does Participation in

Leisure Activities Lead to Reduced Risk of Alzheimer's Disease? A Prospective Study of Swedish Twins," The Journal of

Gerontology, vol. 58, no. 5 (2003), pp. 249-255.

147 J. W. Williams et al., Preventing Alzheimer's Disease and Cognitive Decline, Agency for Healthcare Research and Quality,

Evidence Report/Technology Assessment No. 193, Rockville, MD, April 2010, p. 309,

http://www.ahrq.gov/downloads/pub/evidence/pdf/Alzheimers/alzcog.pdf.

148 M. Crowe et al., "Does Participation in Leisure Activities Lead to Reduced Risk of Alzheimer's Disease? A Prospective Study

of Swedish Twins," The Journal of Gerontology, vol. 58, no. 5 (2003), pp. 249-255.

45
Figure 10. Care Continuum for Dementia Patients

Source: Adapted from P. Moise, M. Schwarzinger, and M. Um, Dementia Care in 9 OECD Countries, Organisation for

Economic Co-operation and Development (OECD), Working Paper no. 13, 2004, p. 10 by Jamie Hutchinson, CRS.

Note: ADLs means “Activities of Daily Living”.

503'*31(,(2.13, 4'-3%*-)% (+ !-*-)%.3 3)/ ",$0-.*-'#& !.&-3&-

There are two types of pharmacological treatments for dementia and AD: medications to improve

cognitive functioning and medications to control behavioral and psychological symptoms. Each approach

will be discussed separately.

0',&.'()%(+- !'$*& %+ 1/)'+#, "+*-(%(#, 2$-.%(+-(-*

Certain prescription drugs aim to maintain cognitive functions, manage behavioral symptoms, and delay

the onset of cognitive deterioration present in dementia and AD.149 For instance, cholinesterase inhibitors,

including Donepezil (Aricept), Riastigmine, and Galantamine, are prescribed for mild to moderate AD;

they may delay or prevent symptoms (e.g., memory loss) from worsening for a limited time and may

control negative behavioral symptoms. Memantine is prescribed for those with moderate to severe AD to

improve symptoms; however, none of these drugs stop the progression of the disease and most patients’

condition will worsen over time. Serious side effects accompany many of these medications making them

unsuitable for some patients.

150

Table 6 lists the prescription drugs approved to mitigate the cognitive decline in dementia and AD in the

five focus countries and the dates of their approval. Most drugs have been available in these countries for

several years, with the exception of Japan that approved three of these medications only recently.

149 P. Moise, M. Schwarzinger, and M.Y. Um, Dementia Care in 9 OECD Countries, OECD, Working Paper no. 13, 2004,

http://www.oecd.org/health/healthpoliciesanddata/33661491.pdf.

150 "New Drugs," Australian Prescriber, vol. 26, no. 5 (2003), p. 119.

46
Table 16. Prescription Drugs Approved For Dementia

Selected Countries and Approval Dates

Country Tacrineb Donepezil

(Aricept)

Rivastigmine Galantamine Memantine

Australia 1995 1998 2000 2001 2003

France 1994 1997 2000 2001 2002a

Japan NA 1999 2011 2011 2011

United Kingdom NA 2001 2001 2001 2002

United States 1993 1996 2000 2001 2003

Source: Moise, et al., Dementia Care in 9 OECD Countries, p. 11,

http://www.oecd.org/health/healthpoliciesanddata/33661491.pdf; Editorial, “New drugs for Alzheimer’s disease in Japan”

Psychiatry and Clinical Neurosciences, 2011, 65: 399-404; and Alzheimer Research Forum:

http://www.alzforum.org/new/detail.asp?id=411; and Australian Prescriber:

http://www.australianprescriber.com/magazine/26/5/118/9/new-drugs-439/memantine.

Notes: NA = Not Approved.

a. Date of approval by the European Union’s Committee of Proprietary Medicinal Products (CPMP).

b. At the present this medication is rarely used due to its side effects.

5(-'1(0)&0*+ !(%4' &* 6,)(*$- "-23$0*(3. 3+/ 5'#12*.*4013. 7%+1&0*+0+4

Other pharmacological treatments attempt to contain the behavioral symptoms (e.g., aggressiveness,

sleeplessness, and wandering) or mood disorders (e.g., anxiety, anger, delusions, and hallucinations) that

can accompany dementia and AD. 151 Symptom management provides relief to the patient and can aid

caregivers in maintaining the patient in their homes or in the least restrictive setting possible. A recent

systematic review of the literature found evidence that certain anti-psychotic medications are useful in

reducing aggression and psychosis, but these medications are associated with significant negative health

effects in some patients and should not be used for routine care.

152 A separate meta-analysis found an

increase in mortality with these treatments.153 Non-medication-oriented treatments for behavioral

symptoms include managing and simplifying the patient’s environment and reducing change and stress.154

The Australian, French, and English National Plans emphasize finding alternatives to these medications

where appropriate due to these serious side effects.155

151 Alzheimer's Disease Education and Referral Center, National Institute on Aging, “Alzheimer's Disease Medications: Fact

Sheet,” NIH Publication No. 08-3431, Washington, DC, November 2008 (updated December, 2010),

http://www.nia.nih.gov/alzheimers/publication/alzheimers-disease-medications-fact-sheet.

152 C. G. Ballard, J. Waite, and J. Birks, "Atypical Antipsychotics for Aggression and Psychosis in Alzheimer's Disease,"

Cochrane Library: Intervention Review, February 21, 2012.

153 L. S. Schneider, K. S. Dagerman, and P. Insel, "Risk of Death With Atypical Antipsychotic Drug Treatment for Dementia:

Meta-Analysis of Randomized Placebo-Controlled Trials," Journal of the American Medical Association, vol. 294, no. 15

(September 19, 2005), pp. 1934-1943.

154 American Psychiatric Association, Treatment of Patients with Alzheimer's Disease and Other Dementias, Second Edition,

Washington, DC, 2007, http://psychiatryonline.org/content.aspx?bookid=28§ionid=1679489#152606.

155 See H. Brodaty and A. Cumming, “Dementia Services in Australia” International Journal of Geriatric Psychiatry, vol. 25

(2010), pp. 891-892; French National Plan at http://www.plan-alzheimer.gouv.fr/IMG/pdf/Plan_Alzheimer_2008-2012_uk.pdf,

39; and Department of Health, United Kingdom, “Living Well With Dementia: A National Dementia Strategy,” February, 2009,

p. 57. Hereafter H. Brodaty et al., 2010.

47
!'(%#& "($' )$*%)1/( 3(2),),- ), !/./,&)2 2,1 "0$+/)./(#' !)'/2'/

A growing concern in Australia, England, and

Scotland is the lack of training of primary care

providers in the treatment of dementia and

AD.156 Additionally, France and Japan are

concerned about the lack of resources for

assessment.157 An effort is underway under the

auspices of the European Alzheimer’s Disease

Consortium (EADC) to assess the education and

training of primary care providers in dementia

and AD in Europe. The initial focus is to assess

current levels of education and to determine

what additional training is necessary to prepare

providers to care for patients with dementia and

AD.158 Australia, the UK, and the United States

emphasize improving primary care provider

training in their National Plans.

159 Canada has

also initiated specific training efforts for primary

care providers described in the adjacent text box.

156 H. Brodaty et al., 2010, p. 893 (Australia); and Department of Health, United Kingdom, “Living Well With Dementia: A

National Dementia Strategy,” February, 2009, pp. 64-67; and, The Scottish Government, Scotland's National Dementia Strategy,

June 201, pp. 3-4.

157 See Alzheimer Plan 2008-2012: L'Engagement De Tous, Alzheimer Plan 2008-2012: L'Engagement De Tous: Implementation

as of 1st February, 2012, February 1, 2012, p. 5; and S. Awata, "New National Health Program Against Dementia in Japan: The

Medical Center For Dementia," Psychogeriatrics, vol. 10 (2010), p. 106. Hereafter referred to as S. Awata, 2010.

158 M. Tsolaki et al., "Consensus Statement on Dementia Education and Training in Europe," Journal of Nutrition, Health, and

Aging, vol. 14, no. 2 (February, 2010), pp. 131-135.

159 For more information, see Department of Health, Living Well with Dementia: A National Dementia Strategy,

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_094058; and,

http://www.health.gov.au/internet/main/publishing.nsf/Content/B9616604C02332D5CA25701B0075A997/$File/NFAD%20low

%20res%20Web%20Version%20Oct%2006.pdf; and U.S. National Alzheimer’s Plan

http://aspe.hhs.gov/daltcp/napa/NatlPlan.shtml.

Primary Care Training in Canada

Canada is creating a memory clinic training program to increase

primary care capacity in dementia and AD treatment. The

memory clinic program aim is to create new infrastructure as

well as improve the skills of family physicians and other primary

care providers. The training program trains primary care

providers who then become part of a memory clinic team.

These teams then provide services to other primary care

providers. Providers learn to distinguish normal aging from mild

cognitive impairment and other forms of dementia and develop

knowledge in a variety of treatments and care management. This

program addresses the lack of geriatricians and other specialists

in many areas, so that primary care providers must provide

more specialized services.

Source: L. Lee, M. Kasperski, & W.W. Weston, Building capacity

for dementia care, Canadian Family Physician, 57 (July, 2011),

http://cognopedia.com/images/0/00/Developing_primary_care_m

emory_clinics_for_dementia.pdf.

48
1$.',0 !+-#/$.(* "))(&$%

In a 2012 global survey of physicians by the pharmaceutical company Eli Lilly, physicians reported that

stigma and denial made discussing a diagnosis with patients and their caregivers difficult. In this study,

physicians in the UK and France reported the highest level of stigma.

160 Given the symptoms, the limited

treatment options, the loss of abilities, and the progressive course of the disease, fear and anxiety in

patients and families with dementia and AD are expected.161 This fear can translate into avoidance, denial,

and inaction leading to delays in seeking treatment

and reporting symptoms to physicians.162 Some

individuals may believe that dementia and AD are

a normal part of aging and may not recognize that

medical treatment is necessary.

163

The stigma surrounding the disease can increase

the isolation of the patient and the caregivers

because neighbors and friends may be reluctant to

have contact with the patient and his or her family.

One study surveying caregivers of patients with

dementia and AD found that patients experienced

a loss of social relationships and were treated differently by family and members of their social

network.164

The perception of exclusion by patients is corroborated by public attitudes in at least one country. A

recent study by Alzheimer’s Australia found significant negative attitudes toward people with dementia,

including a desire to avoid those with the disease. The study found that the fear of being diagnosed with

the disease was also common and could be a factor in stigma formation.165

Several countries have made combating the stigma surrounding the disease a central

element in their National Plans.

Table 17 highlights the efforts included in the National Plans of the five focus countries.

160 Eli Lilly, Inc., “New International Survey Reveals Multiple Barriers to an Accurate and Timely Alzheimer’s Disease

Diagnosis” September 16, 2012, http://files.shareholder.com/downloads/LLY/2078942632x0x600635/5bd90bd0-2ac0-4cf7-

9501-71d71f620446/LLY_News_2012_9_19_Product.pdf.

161 Alzheimer's Disease International, National Alzheimer and Dementia Plans Planned Policies and Activities: Early Detection,

Access to Diagnosis and Stigma Reduction, April 2012, p. 12, http://www.alz.co.uk/sites/default/files/national-alzheimer-anddementia-plans.pdf.

162 Ibid., and Department of Health, United Kingdom, “Living Well With Dementia: A National Dementia Strategy,” February

2009, pp. 25-30.

163 Alzheimer's Disease International, National Alzheimer and Dementia Plans Planned Policies and Activities: Early Detection,

Access to Diagnosis and Stigma Reduction, April 2012, p. 12, http://www.alz.co.uk/sites/default/files/national-alzheimer-anddementia-plans.pdf.

164 P. Werner and J. Heinik, "Stigma by Association and Alzheimer's Disease," Aging and Mental Health, vol. 12, no. 1 (2008),

pp. 92-99.

165 L. Phillipson et al., Exploring Dementia and Stigma Beliefs: A Pilot Study of Australian Adults Aged 40-65, Alzheimer’s

Australia, Paper 28, June 2012, http://www.alz.org/living_with_alzheimers_stigma.asp.

Stigma and Research

Another reported impact of stigma appears to be increased

difficulty recruiting patients and their families for research

studies, especially in the early stages of the disease.

Researchers attribute difficulties in recruitment to patients’

and families’ difficulty accepting the diagnosis, perception of

limited benefit, and lack of time and resources.

Source: L. Garand et al., "Diagnostic Labels, Stigma, and

Participation in Research Related to Dementia and Mild

Cognitive Impairment," Research in Gerontological Nursing, vol.

2, no. 2 (April 2009), pp. 112-121.

49
Table 17. Selected Global Stigma Reduction Efforts

National Plan Selected Stigma Reduction Efforts

Australia Survey of attitudes and public awareness programs

France Survey of attitudes and public information campaign

Japan Unable to locate information

United Kingdom

England Public and professional information campaign

Campaign to reduce vascular disease and VD

Scotland Publication on stigma

Creation of a public information infrastructure

Wales Public information

United States Mentioned, but no objective

Source: Alzheimer's Disease International, National Alzheimer and Dementia Plans Planned Policies and Activities: Early

Detection, Access to Diagnosis and Stigma Reduction, April 2012, p. 12, http://www.alz.co.uk/sites/default/files/nationalalzheimer-and-dementia-plans.pdf.

5%('.- 6++*&2'1*+( 1+ '3. 4).2'-.+' *, !.-.+'12 2+0 "/$3.1-.)#(

!#"$%"$

The National Plans of the five focus countries address two of the key issues in the treatment of dementia

and AD: ensuring accurate and early diagnosis and improving pathways of care. Two of the five focus

countries, France and Japan, have worked on these issues for long periods of time and have specific goals.

These two countries’ efforts are highlighted in this chapter because they describe in depth efforts to

improve diagnosis and early treatment, coordinate medical treatment with social services, and create new

dementia and AD-specific infrastructure.

"#!$&%

France has had three national dementia and AD plans starting in 2001. In each plan, treatment is a prime

focus. The first plan prioritized early diagnosis; creation of memory centers with staff able to provide

accurate diagnosis; establishment of adult day centers and residential homes; and funding of research.

Currently, France is prioritizing efforts in the following areas: changing the image of dementia to combat

stigma; increasing support for care givers; coordinating care between providers; enabling more support at

home; improving access to diagnostic and care pathways; increasing residential care; developing training

for health professionals; and increasing resources for clinical research, epidemiology, public information,

and ethics.

166

The French treatment model envisions a continuum of care similar to the model of treatment presented

earlier in this chapter (Figure 10); treatment evolves based on the disease stage. France aims to create the

infrastructure to implement this model. Based on the two earlier plans, the most recent national plan

166 Republique Francaise, National Plan for Alzheimer and Related Diseases 2008-2012, February 1, 2008, http://www.planalzheimer.gouv.fr/.

50
envisions an integrated pathway of care for those patients who depend and need long-term care services

as shown in Figure 11.

167

In this model, primary care providers and memory centers (specialized diagnosis and medical treatment

centers) are the point of entry for patients for comprehensive services. The government is expanding the

number of memory centers, currently 469, to ensure that all regions have a center. At the center of this

new treatment plan is a new institution, the Maison pour l’autonomie et l’integration des maladies

d’Alzheimer (MAIA), literally translated, “Home for the autonomy and integration of Alzheimer’s

Diseases.” This model was piloted in 2009-2010 and, after some refinement, is being expanded in certain

regions. These facilities’ objective is to connect dependent dementia and AD patients to the services they

need. The MAIA is designed to help families who are overwhelmed and/or lost in a maze of multiple and

compartmentalized services.168 In some cases, a special case manager is assigned to the patient.

Evaluation indicates that MAIA reduces the number of different agencies that a patient comes into contact

with, and it is hoped that the MAIA will reduce hospitalizations and other related problems. In 2011 there

were 40 MAIA; France hopes to have a total of 500 MAIA by 2014.

Figure 11. French Treatment Pathway for Person with Dementia

As Envisioned in the Alzheimer Plan of France, 2012

Source: Republique Francaise, Alzheimer Plan 2008-2012: L’Engagement de Tous, Implementation as of 1st February 2012,

http://www.plan-alzheimer.gouv.fr/IMG/pdf/Plan_Alzheimer_4th_anniversary-2.pdf, p. 4.

Notes: “MAIA” = Maison pour l’autonomie et l’integration des maladies d’Alzheimer, House for the autonomy and

integration of Alzheimer’s Diseases [literal translation].

France aims to integrate research with treatment, by creating a database of AD cases and related

dementias, and is collecting data on patients from over 427 memory centers throughout metropolitan

France and its overseas regions.

169 These memory centers can also facilitate clinical trials and treatment

evaluations.

170 Figure 12 illustrates the distribution of these centers throughout all regions. This database

167 Republique Francaise, Alzheimer Plan 2008-2012: Implementation as of 1st February 2012, http://www.planalzheimer.gouv.fr/IMG/pdf/Plan_Alzheimer_4th_anniversary-2.pdf.

168 Ibid., p. 5.

169 France has overseas regions that are part of the French Republic and include French Guyana, La Reunion, Guadeloupe, and

Martinique. The French island of Corsica also has a memory center.

170 F. Le Duff, 2012.

51
will allow tracking of care and research on the course of the illness. Already France has collected data on

almost 120,000 patients.

Figure 12. Distribution of Memory Centers in France and Overseas Regions Participating in

Integrated Information Project

(for CY2010)

Source: F. Le Duff et al., “The 2008-2012 French Alzheimer Plan: Description of National Alzheimer Information System”,

Journal of Alzheimer’s disease, 29 (2012), p. 894. Hereafter referred to as F. Le Duff, 2012.

France is also increasing the number of facilities such as cognitive-behavioral rehabilitation units,

facilities for younger patients, adult day centers, and respite facilities.171 The French plan also envisions

reducing the use of psychiatric medications to control behavioral symptoms. Finally, a new health care

provider, a gerontology care assistant, is being developed, and the number of physical and occupational

therapists has increased.172

!$"$#

Japan introduced specific programs for dementia and AD in the late 1980s.173 For instance, the Dementia

Center for Elders (DCE) project was established in 1989 to improve local services provided in areas of

medical treatment and community-based services. Given increasing numbers of patients, in 2008 Japan

initiated the “Medical Centers for Dementia” (MCD).174 The aim is to provide specialized medical

services for dementia patients that are linked to community resources so as to build a comprehensive

treatment network for patients. MCD provides: special medical consultations for dementia; differential

diagnosis and early evaluation; medical treatment for any acute behavioral and psychological symptoms;

education for general practitioners and community care providers; efforts to strengthen medical and

171 Le Duff, 2012, p. 85.

172 Ibid., p. 86.

173 S. Awata, 2010.

174 Awata, 2010, p. 105.

52
community care ties; and public information.175 Japan’s efforts include quality measures to ensure that all

the appropriate services are provided. A special focus of the MCD effort is improving the connection

between general practitioners, who may be the first medical professional making the diagnosis, and

community support agencies. Japan reports that, as a result of these efforts, in one particular hospital the

waiting times for consultation decreased dramatically and the number of services provided increased.

176

175 Ibid.

176 Ibid., p. 106.

53
Chapter 3: Long-Term Care for Persons with Dementia and

Alzheimer’s Disease Among Selected Countries

Introduction

This chapter highlights particular government long-term care (LTC) initiatives and efforts in the five

focus countries to assist individuals with dementia, including those with AD, as well as their caregivers. It

is divided into three topic sections that describe the need for LTC among persons with dementia; the

range of LTC services provided to such individuals; and government policies and programs to support

informal caregivers of persons with dementia. Each section provides information regarding the provision

of LTC in general in the five focus countries with specific information on the provision of LTC for

persons with dementia, including AD, in these countries, where information is available.

Methodology

Information about LTC services for persons with dementia in the five focus countries was obtained from

government websites and publications, professional journals, professional societies, and nongovernmental organizations (NGOs) such as the Alzheimer’s Association, Alzheimer’s International, and

Alzheimer’s Europe. This information is limited by language barriers and the availability of up-to-date

public information on these topics. This chapter highlights global trends as well as selected government

programs and initiatives in the five focus countries. However, given the different sources of information,

there is variation in the level of information and country-specific detail provided. Thus, the information

presented in this chapter is selective and is not meant to be representative of efforts in the five focus

countries to address dementia and AD. In addition, this information is descriptive and is not meant to be

an evaluation or comparative analysis of government programs or policies nor is it meant to suggest any

statement about the relative merit of government programs or policies in these countries. Finally, there are

different cultural norms, institutional systems and structures, public and private financing mechanisms,

and public policies that affect the delivery of LTC to persons with dementia in each identified country.

Including a comprehensive discussion of these factors for each country is beyond the scope of this report.

Long-Term Care for Persons with Dementia

Individuals with dementia, including AD, generally have both medical and non-medical needs. Medical

needs related to dementia include diagnosis, regular assessment, and symptom management, including

prescription drug therapy. Non-medical needs may include assistance with personal care activities or

other support services that can assist individuals to live independently. Moreover, the health and social

services needs for persons with dementia can be complex and may change over time as individuals’ needs

or conditions change. Often such needs intensify as persons with dementia progress through more

advanced and debilitating stages of illness. Thus, individuals with dementia, including AD, often develop

a need for care over an extended period of time, or long-term care.

54
What is Long-Term Care?

Long-term care (LTC) refers to a broad range of health and social services or supports needed by

individuals who lack the capacity for self-care due to a physical disability or condition, or due to a

mental disability or cognitive impairment, such as dementia. Such persons may need assistance or

supervision in self-care activities over an extended period of time.

The need for LTC is generally measured, irrespective of age and diagnosis, by the presence of

functional limitations in the ability to perform basic activities of daily living (ADLs), or by the need

for supervision or guidance with ADLs because of a mental or cognitive impairment such as

Alzheimer’s Disease and related dementia. ADLs generally refer to activities such as eating, bathing,

using the toilet, dressing, walking across a small room, and transferring (i.e., getting in or out of a

bed or chair). Instrumental activities of daily living (IADLs) are also used to measure a person’s

need for LTC. These activities are necessary for an individual’s ability to live independently in the

community. IADLs include activities such as preparing meals, managing money, shopping for

groceries or personal items, performing housework, using a telephone, doing laundry, getting around

outside the home, and taking medications.

Formal caregiving refers to LTC that is provided by health professionals who may be employed by a

third-party, such as a nursing facility or home care provider. Informal caregiving refers to LTC that

is provided by family members, friends, or neighbors. A substantial portion of LTC is provided by

informal caregivers.

In general, LTC services for persons with dementia can be grouped into the following three categories:

(1) post-diagnostic services, (2) home and community-based services, and (3) continuing care services.

The following provides examples of services in each of these categories.

177

• Post-diagnostic services—these are services to individuals with dementia and their

caregivers that assist them in planning for the future; that offer information about and

referral to various local health and social service providers; and that stress counseling and

other types of individual or group support.

• Home and community-based services (HCBS)—these are services such as personal care,

meals, and housework that allow individuals with dementia and their families to remain

at home for as long as possible. Other services include adult day health services and

programs; respite care for informal caregivers; and planned opportunities for social

engagement of the dementia care recipient.

• Continuing care—this category of services encompasses various options for housing with

supportive services, such as assisted living residences or nursing home care for persons

who can no longer stay in their own home and need supervised care (e.g., in a small

group home) or in an institutional living arrangement (e.g., a residential LTC facility).

177 World Health Organization (WHO), Dementia: A Public Health Priority, 2012, http://www.who.int/mental_health/

publications/dementia_report_2012/en/index.html.

55
Who Receives Long-Term Care?

While the need for LTC varies among individuals over the lifespan, the probability of needing and using LTC

increases with age. According to the World Health Organization (WHO), individuals age 80 and over are six

times more likely to receive LTC than those ages 65 to 79.178 Figure 13 provides information on the percent of

the population aged 65 and over receiving LTC in Australia, Japan, France, and the U.S., as well as the OECD

average. Data from the WHO show that the number of LTC recipients as a share of the population 65 and older

was 12.2% on average across OECD countries in 2009. Australia had a higher than average share of the older

population receiving paid care at 13.9% followed by Japan at 12.6%. France and the United States were lower

than the OECD average at 11.1% and 6.5%, respectively. Variation in receipt of paid long-term care across the

five focus countries may be related to differences in public and private financing arrangements, access to care

providers, and cultural norms specific to each country, among other factors.

Figure 13. Percent of Population Aged 65 and Over Receiving Long-Term Care (LTC)

in Selected Countries

(2009 or nearest year)

Source: Organization for Economic Cooperation and Development (OECD), Health at a Glance 2011: OECD

Indicators, 2011, pp. 168–169, http://dx.doi.org/10.1787/health_glance-2011-en.

Notes: LTC recipients are defined as persons receiving LTC by paid providers and include recipients of cash

benefits through consumer-choice or cash allowance programs. Data for Australia do not include recipients who

access Veterans’ Home Care Program and those who access services under the National Disability Agreement.

Data for Japan underestimate the number of recipients in institutions because many elderly people receive LTC

in hospitals. Data for France refer to people aged 60 and over. Data for the United States refer to 2007 for home

care recipients and 2004 for recipients in institutions. Data for the UK are not available.

Long-Term Care in the Focus Countries

For persons with dementia who are in need of LTC, most care is provided within the country’s existing

LTC system. Among the five focus countries, there is wide variation in the financing and delivery of

long-term care. As a result, access to and coverage of LTC services for persons with dementia, including

the types and amount of coverage, varies considerably. The following provides a general overview of the

LTC financing and delivery systems in each focus country. Information about specific dementia care

eligibility criteria or services are provided where information is available.

178 Organization for Economic Cooperation and Development (OECD), Health at a Glance 2011: OECD Indicators, 2011,

http://dx.doi.org/10.1787/health_glance-2011-en.

56
Australia

Australia’s federal government has primary responsibility for planning and funding LTC for the aged

(persons aged 65 years and older) while states and territories plan and fund services to persons under age

65 with disabilities.179 Aged care services are financed through taxes, with the provision of services

largely focused on community care. The Aged Care Program includes home care and residential care

services as well as service-integrated housing to individuals with a range of LTC needs. LTC delivery to

older Australians is administered by the federal and state governments through public and private

organizations. Eligibility for these care programs is assessed by Aged Care Assessment Teams (ACAT)

that independently determine eligibility for residential care or home-based support packages based on

need. Specialized home-based care packages provide services for persons with dementia. Some LTC

services require copayments and/or are means-tested. Tax offsets exist for individuals whose private LTC

expenditures exceed an annual threshold. Australia also provides targeted benefits to eligible informal

caregivers such as cash allowances through the pension system and respite care services through a

network of providers.

France

Public funding for the provision of LTC in France is provided through the public health insurance system

and a social insurance system of cash support that individuals may use toward the cost of LTC. The

public health insurance system covers health care services for persons who require LTC due to a chronic

or acute medical condition, including institutional care and at-home nursing care. The French government

also provides certain individuals aged 60 and older who also have ADL limitations with an allowance

called the Allocation Personnalisée d’Autonomie (APA). Older individuals who live at home or in a

community residential care setting can use the APA toward their LTC expenses. The APA is financed

through general revenues funded jointly by the central and regional governments, and administered at the

regional level. Those who meet the disability test are eligible for a cash benefit which is based on level of

need. Benefit amounts are reduced for individuals with higher incomes. Covered LTC expenses under the

APA are those identified under a personalized support plan that is established by a social-medical team.

Certain tax deductions or exemptions are also available to eligible individuals for their LTC expenses.

France also has a well-developed private Long-Term Care Insurance (LTCI) market, which covers

individuals in both individual and group markets. In 2010, private LTCI in France covered the equivalent

of 15% of the population aged 40 and older.

180 Private LTCI benefits are paid in cash similar to the public

assistance program.

Japan

Japan’s government has a mandatory social insurance program that covers LTC for citizens aged 65 and

older.

181 LTC coverage is also available to individuals ages 40 to 64 due to an age-related illness such as

dementia. The LTCI program requires all individuals aged 40 and over to contribute premiums; the

benefit is managed by municipal governments. About 50% of the LTC costs are covered through

government taxes (national, prefectural, and municipal), with the remaining half covered through

179 Information for this section was obtained from the following sources: Henry Brodaty and Anne Cumming, “Dementia services

in Australia,” International Journal of Geriatric Psychiatry, vol. 25 (2010), pp. 887–895; and Francesca Colombo, Ana LlenaNozal, Jérȏme Mercier, et al., Help Wanted? Providing and Paying for Long-Term Care, Australia: Long-Term Care, OECD

Health Policy Studies, OECD Publishing, 2011, http://dx.doi.org/10.1787/9789264097759-3en.

180 Francesca Colombo, Ana Llena-Nozal, Jérȏme Mercier, et al., Help Wanted? Providing and Paying for Long-Term Care,

France: Long-Term Care, OECD Health Policy Studies, OECD Publishing, 2011, http://dx.doi.org/10.1787/9789264097759-3en;

data from an earlier study report 3 million policyholders in 2007, from Blanche LeBihan and Claude Martin, “Reforming LongTerm Care Policy in France: Private-Public Complementarities,” Social Policy & Administration, vol. 44, no. 4 (2010), pp. 392–

410.

181 Mary-Jo Gibson, Steven R. Gregory, and Sheel M. Pandya, Long-Term Care in Developed Nations: A Brief Overview, AARP

Public Policy Institute, October 2003.

57
insurance premiums. Those who receive care through the program are responsible for a 10% copayment,

with those receiving public assistance responsible for a smaller share (2%). The program pays for public

or private LTC services by certified providers in institutions, community-based settings, or in the home.

Eligibility criteria are uniform across Japan with individual eligibility based on an assessment by a

municipal specialist that establishes an applicant’s level of impairment. Accepted applicants work with a

care manager, in consultation with care providers, to develop a service plan.

United Kingdom

Long-term care services in the UK are financed by the National Health Service (NHS), by local

authorities, charities, and out-of-pocket payments. Institutional LTC services, such as nursing facility

care, are publicly financed under the NHS and are free at the point of service with access to such services

based on need for care. However, most formal LTC is considered social care with government provided

care as a separate means-tested benefit. Under the UK’s LTC system, Wales, England, Scotland, and

Northern Ireland manage their LTC systems separately. Access to publicly funded LTC services in the

UK is mainly through an assessment of care needs coordinated by the local authority social services

department.182 Benefits include a range of home care and residential care services. The UK also has two

non-means tested cash benefits, one for older disabled persons with personal care needs and one for

informal caregivers called a Caregiver’s Allowance.

United States

In the United States, LTC services are financed by a variety of public and private sources such as

Medicaid, Medicare, private health and LTCI, and private out-of-pocket payments. The majority of LTC

is paid for by public programs such as Medicaid, a means-tested program financed jointly by federal and

state governments. Medicaid funds services for beneficiaries in both institutional settings and HCBS,

though the portfolio of services offered differs substantially by state. Federal law requires state Medicaid

programs to cover nursing facility services for Medicaid beneficiaries in need of LTC. States also have

the option of offering a range of HCBS. This flexibility has led to widespread variation in state Medicaid

benefit packages offered to the elderly and younger persons with disabilities. Medicaid eligibility for LTC

is determined according to the state’s functional eligibility requirements where beneficiaries must

demonstrate a need for such care, among other requirements.183 Private financing for LTC includes both

out-of-pocket costs and some private LTCI. In 2008, about 11% of the population aged 55 and older and

12% of the population aged 65 and older owned a LTCI policy.

184

Range of Long-Term Care Services Provided

In general, LTC services for persons with dementia are provided within each country’s existing health and

social services delivery systems. This next section provides information from selected health indicators

with respect to the range of LTC services and settings in the five focus countries. Information presented in

this section broadly describes home care services and continuing care services and is not necessarily

specific to persons with dementia or AD. Information presented in this section highlights particular

aspects of LTC for persons with AD and related dementia in the five focus countries, where information

is available.

182 Adelina Comas-Herrera, Linda Pickard, Raphael Wittenberg, et al., The English Long-Term Care System, European Network

of Economic Policy Research Institutes (ENEPRI), Research Report No. 74, May 2010.

183 Pierre Moise, Michael Schwarzinger, Myung-Yong Um, et al., Dementia Care in 9 OECD Countries: A Comparative

Analysis, OECD Health Working Papers, 2004.

184 CRS Report R40601, Factors Affecting the Demand for Long-Term Care Insurance: Issues for Congress, by Janemarie

Mulvey.

58
One challenge among focus countries is providing coordinated and integrated LTC across the continuum

of health and social services delivery to persons with AD and other forms of dementia. The need for

service coordination among persons with AD and related dementia becomes greater over the course of

disease. As a result, some countries, such as France, are working toward a more person-centered approach

to care that involves greater care coordination between their health and LTC systems (see text box entitled

France: Care Coordination).

France: Care Coordination

France’s National Alzheimer’s and Related Diseases Plan for 2008 through 2012 includes, as a stated

objective, strengthening coordination between actors such as hospitals, practitioners, day care centers, AD

centers, social services, and home care workers, who are involved in the care and treatment of individuals with

AD. The goal of the Maisons Pour L’Autonomie Et Intégration Des Malades Alzheimer (MAIA) model is to

reduce uncertainty for patients and families regarding whom to contact and how to negotiate and coordinate

the provision of health and LTC services. The MAIA model creates a one-stop shop through which individuals

diagnosed with AD and related dementia can enter the health and LTC systems. MAIAs provide a single-point

of contact through professionals known as “coordonnateurs” (“case managers”) who provide personalized

support to patients with AD and their families. Such professionals coordinate both medical and social

interventions for AD patients and are also responsible for follow-up and on-going support for patients and

their families through the disease course. According to France’s AD Plan this system, which was initially

designed for AD patients, will be extended to all elderly individuals with LTC needs.

Source: WHO, Dementia: A Public Health Priority, 2012, http://www.who.int/mental_health/publications/

dementia_report_2012/en/index.html; 3

rd French National plan for “Alzheimer and related diseases” 2008–

2012 (English version), June 2008, http://www.alzheimer-europe.org/Policy-in-Practice2/National-DementiaPlans/France#fragment-1.

Home Care Services

The majority of individuals with dementia worldwide live at home in the community.185 According to

research from the OECD, in almost all countries studied, between half and three quarters of paid LTC is

provided in home-care settings to persons who need LTC regardless of diagnosis or condition.186 The

WHO notes that most individuals with chronic conditions, including those with dementia, would prefer to

remain in their homes for as long as possible. Moreover, there appears to be broad support among the

focus countries for keeping older individuals in need of LTC, including persons with dementia, in their

homes.

187 In intermediate to late stages of dementia formal home care services may support informal

caregivers, particularly when there is a greater burden of care on the informal caregiver. Data indicate

older LTC recipients (those ages 80 and older) are less likely to receive home-care than younger

recipients which may indicate the current role of institutional care for persons with dementia where

advanced age is a risk factor for AD.

According to the WHO, many OECD countries have engaged in efforts to expand the provision of LTC to

individuals in their own homes. Figure 14 provides information on the share of each country’s LTC

recipients that receive home care in the U.S., Australia, and Japan, as well as the OECD average. In most

countries for which trend data are available, data show that the number of persons receiving care at home

has increased over the past decade. This trend, in part, may be attributed to countries introducing

programs to promote the delivery of LTC at home through expanded support of HCBS. The share of LTC

recipients receiving care at home is greatest in Japan at 77.0% and has increased at a much faster rate in

that country compared to Australia and the United States, where just over half of LTC recipients receive

care at home (54.4% and 50.6%, respectively).

185 Ibid., p. 53.

186 Ibid., p. 42.

187 Pierre Moise, Michael Schwarzinger, Myung-Yong Um, et al., Dementia Care in 9 OECD Countries: A Comparative

Analysis, OECD Health Working Papers, 2004.

59
Figure 14. Share of Long-Term Care Recipients Receiving Care at Home

(1999 and 2009 or nearest year)

Source: Organization for Economic Cooperation and Development (OECD), Health at a Glance 2011: OECD Indicators, 2011,

pp. 168–169, http://dx.doi.org/10.1787/health_glance-2011-en.

Notes: LTC recipients are defined as persons receiving LTC by paid providers and include recipients of cash benefits through

consumer-choice or cash allowance programs. Data for Australia do not include recipients who access Veterans’ Home Care

Program and those who access services under the National Disability Agreement. Data for the United States refer to 1999 and

2007 for home care recipients. Data for France and the United Kingdom are not available.

Some research suggests a common core of home care services is provided across countries; although

definitional differences in the types of services make analogous comparisons between countries

difficult.188 Research suggests that there may be wider inter-country variation in the provision of HCBS

than in the provision of institutional services. Other studies note that the extent and level of services may

vary among countries.

189 Despite these variations, the HCBS core services identified include: needs

assessment, advice and counseling, support groups, respite care, crisis management, support centers, adult

day health services and programs. Core services also include home care such as assistance with personal

care activities or meals, and increasingly a range of residential housing options with services (e.g.,

sheltered housing, group homes, and retirement communities). Researchers also suggest that a dementia

diagnosis can be a barrier to accessing appropriate care.

190

In general, home and community-based services (HCBS) for persons with dementia are provided within

each country’s existing LTC delivery system (see Table 18). In a comparative analysis of nine OECD

countries, which included the five focus countries, researchers found that most countries did not provide

dementia-specific home care services. Thus, dementia care is often integrated within the larger LTC

delivery system which includes care for persons with physical and developmental disabilities. One

exception is Australia, which has introduced the Extended Aged Care at Home Dementia (EACHD)

188 Martin Knapp, Adelina Comas-Herrera, Ami Somani, et al., Dementia: international comparisons, Summary report for the

National Audit Office, Personal Social Services Research Unit, London School of Economics and Political Science and Section of

Mental Health and Ageing, The Institute of Psychiatry, King’s College London, May 2007.

189 Pierre Moise, Michael Schwarzinger, Myung-Yong Um, et al., Dementia Care in 9 OECD Countries: A Comparative

Analysis, OECD Health Working Papers, 2004.

190 Martin Knapp, Adelina Comas-Herrera, Ami Somani, et al., Dementia: international comparisons, Summary report for the

National Audit Office, Personal Social Services Research Unit, London School of Economics and Political Science and Section of

Mental Health and Ageing, The Institute of Psychiatry, King’s College London, May 2007.

60
Program, a package of targeted home care services for individuals with AD and other forms of dementia

(see Text Box entitled Australia: Home Care Packages).

Table 18. Available Home and Community-Based Services and Dementia Services

Country Home Care Services Dementia Services

Australia Domestic assistance, personal care, homedelivered meals, adult day health services,

community nursing, transportation, home

modification and maintenance, and social support

Information services, education, support groups,

counseling, respite support

France Home nursing care; cash support for service plan

that covers costs associated with home and

community-based services, such as hiring

caregivers (including certain family members) or

home modifications, service plan includes case

management services

Programs and services offered in memory centers

which are involved in early diagnosis and

treatment (greater medical focus than social

services focus)

Japan Home care, adult day health services, assistive

devices, and minor home remodeling

Many services are covered: at home they include a

home helper (housekeeping and personal care),

visiting nurse, bathing, remodeling, assistive

devices; outside of home they include institutional

services including nursing homes, homes with

more medical service, chronic-care hospitals.

Additionally, caring costs in private nursing homes

and dementia group homes are covered.

United Kingdom Home care (home help), meals services, visiting

services, support for caregivers, day activities,

equipment and adaptations to the home, respite

care, alarm systems, direct payments

Range of specialist residential services and

community-based dementia services, memory

clinics, respite care, information for caregivers

United States Case management, homemaker/home health aide

services, personal care services, adult day health

services, meals services, habilitation, respite care,

non-medical transportation, home modifications,

adult day health services

Group residential settings, special care units in

LTC facilities, Alzheimer’s Disease Centers,

counseling and information services

Source: Martin Knapp, Adelina Comas-Herrera, Ami Somani, et al., Dementia: international comparisons, Summary report for

the National Audit Office, Personal Social Services Research Unit, London School of Economics and Political Science and

Section of Mental Health and Ageing, The Institute of Psychiatry, King’s College London, May 2007; Henry Brodaty and Anne

Cumming, “Dementia services in Australia,” International Journal of Geriatric Psychiatry, vol. 25 (2010), pp. 887–895; WHO,

Dementia: A Public Health Priority, 2012, http://www.who.int/mental_health/publications/dementia_report_2012/en/index.html;

Inge Cantegreil-Kallen, Clément Turbelin, Pierre Angel, et al., “Dementia management in France: Health care and support

services in the community,” Dementia, vol. 5, no. 3 (2006), pp. 317–326.

61
Australia: Home Care Packages

The Australian government has made a concerted effort to support the preference of many older individuals to remain in the

community with the policy goal of shifting the balance of care for the aged from residential to home care settings. The WHO

notes that in response to projected increases in the number of persons with dementia, the Australian government has developed

comprehensive plans and systems including specific services to address symptoms of AD and dementia. Since 1992, the

government has provided individually tailored packages of community LTC services for older individuals that are planned and

managed by an approved provider. Australia provides the following home care programs and services, often referred to as

“packages” for older individuals. One type of home care in particular, the Extended Aged Care at Home Dementia (EACHD)

Program, provides specialized services for persons with dementia, including AD. Services such as respite care are also available

to support caregivers.

Commonwealth Home and Community Care (HACC)—Provides services that support older persons to stay in their home and

be more independent in the community. Services include domestic assistance; personal care; assistance with food preparation and

meal delivery; adult day health centers; community nursing; podiatry; physical therapy; speech pathology; transportation; home

modification and maintenance; and social support. HACC services also include support for caregivers, including respite. HACC

services are available to persons aged 65 and older (50 and older for Aboriginals and Torres Strait Islanders) who are at risk of

admission to long-term residential care and their caregivers. As of July 1, 2012, HACC is funded by the Australian government

in most territories with the exception of Western Australia and Victoria.

Community Aged Care Packages (CACP)—Provides a package of services for older individuals with complex care needs that

assists them to remain in their own homes. CACP is targeted towards those who would be eligible for low-level residential care.

CACP packages are individually planned and coordinated services that are tailored to the recipient’s individual care needs. The

package provides the following types of services: meal preparation; laundry; personal care assistance; social support; home help;

transportation; and temporary in-home respite care. CACP packages are funded by the Australian Government with approved

providers receiving a daily subsidy per package to provide services and coordinate care. Care may be provided by a variety of

local organizations, but is planned by the approved service provider. Recipients may be required to contribute up to 17.5% of the

maximum basic pension rate toward the cost of their care; additional contribution amounts may apply to those with higher

incomes (but no more than 50% of the higher income).

Extended Aged Care at Home and Extended Aged Care at Home for Dementia (EACH and EACH D)—Provides a

package of services for frail older individuals that assists them to remain in their own homes. EACH packages are targeted

towards those who would be eligible for high-level residential care. Service packages are individually planned and coordinated

services that are tailored to meet the recipient’s individual care needs. EACH D provides a package of services for frail older

individuals with dementia to assist them to remain in their own homes. EACH D packages are specifically targeted towards

dementia care recipients who experience behavioral or psychological symptoms that impact their quality of life. EACH and

EACH D packages provide the following types of services: registered nursing care; care by an allied health professional such as a

physiotherapist or podiatrist; personal care, transportation to appointments; social support; home help; and assistance with

oxygen and/or eternal feeding. EACH and EACH D packages are funded and administered similarly to the CACP program.

Source: Henry Brodaty and Anne Cumming, “Dementia services in Australia,” International Journal of Geriatric Psychiatry,

vol. 25 (2010), pp. 887–895; For more information on these programs see http://www.health.gov.au/internet/main/publishing.nsf/

Content/ageing-cacp-guidelines.htm1; WHO, Dementia: A Public Health Priority, 2012, http://www.who.int/mental_health/

publications/dementia_report_2012/en/index.html.

Continuing Care Services

Most high-income countries are moving away from institutional care provided to older persons and

persons with mental health conditions, including dementia, placing greater priority on home and

community-based care.

191 Despite this shift to community service provision, the role of continuing care

services, including institutional and other types of residential care that provide both housing and LTC

services, remains an important setting for dementia care delivery. The OECD finds that persons in the late

stages of dementia almost always require continuous care; as a result they are often admitted to a LTC

facility where 24-hour supervision is provided. Moreover, two key predictors of admission to a LTC

institution for persons with dementia are severity of dementia and lack of adequate informal caregiving.

192

191 WHO, Dementia: A Public Health Priority, 2012, http://www.who.int/mental_health/publications/dementia_report_2012/en/

index.html.

192 Pierre Moise, Michael Schwarzinger, Myung-Yong Um, et al., Dementia Care in 9 OECD Countries: A Comparative

Analysis, OECD Health Working Papers, 2004.

62
Long-Term Care Facilities

One measure that provides some information about the availability of resources to deliver LTC outside of

the home is the number of LTC beds in institutions and hospitals in each country. However, it is difficult

to compare data on LTC facility settings by country because there is no uniform definition for a LTC

facility, other than the recognition that most persons are admitted to such settings as full-time residents.

Figure 15 provides information on LTC beds in institutions and hospitals in the five focus countries and

the OECD average. Across OECD countries there were approximately 50 beds in LTC institutions and

hospitals per 1,000 persons aged 65 and over. LTC institutions in this analysis refer to nursing and

residential facilities that provide housing and services as a package. Among the five focus countries,

France had the highest LTC bed per older person ratio, followed by Australia and the UK. The ratios for

the United States and Japan were lower than the OECD average. While most institutional beds are in LTC

facilities, some countries use hospitals for LTC purposes. According to the WHO, Japan has a large

number of hospital beds that have traditionally been used for LTC.193

Figure 15. Long-Term Care Beds in Institutions and Hospitals

(Per 1,000 population Aged 65 and Over)

Source: OECD, Health at a Glance 2011: OECD Indicators, 2011, pp. 174–175, http://dx.doi.org/10.1787/health_glance2011-en.

Notes: LTC institutions refer to nursing and residential care facilities which provide accommodation and services as a

package. Variation in data coverage exists across countries.

An OECD comparative analysis of nine OECD countries, which includes the five focus countries, found

that LTC facilities tend to admit individuals based on the level of care needed, regardless of disease type

(see Table 19). Thus persons with dementia are assessed similarly to other persons with physical,

developmental, or other cognitive impairments. Facilities may also tailor services to residents with a

certain level of care need, such as low, medium, or high. As a result, persons with late-stage dementia,

and in particular those with behavior problems, who tend to require higher levels of care, may have

greater difficulty with admissions to facilities. Facilities may have policies that restrict or deny admission

to certain individuals. For example, a survey of French residential facilities found that some may impose

restrictions in accepting individuals with behavior problems.

194

193 OECD, Health at a Glance 2011: OECD Indicators, 2011, http://dx.doi.org/10.1787/health_glance-2011-en, pp. 174–175.

194 3rd French National plan for “Alzheimer and related diseases” 2008–2012 (English version), June 2008,

63
In most countries, once admitted to a care setting, dementia residents receive the same care as other

residents. However, some research indicates that specialist dementia services in institutions and other

residential care homes have been developed or are in the process of being developed in many countries,

including France, the UK, and the United States. Those services include special dementia care units

within larger facilities or specialist dementia care facilities.195 According to the OECD, the aim of

specialized care is not to isolate dementia care residents but rather to facilitate care that can enhance

quality of life as well as reduce the burden to personnel.196 In an attempt to address access and care

burden issues, one objective of the French AD plan is to improve residential care for persons with AD and

dementia through increased use of specialized units in facilities, as well as emphasize smaller residential

care settings; both would provide additional staffing and trained personnel for dementia residents with

behavior problems.

Table 19 provides data on the number of LTC beds and rate of bed growth between 2000 and 2009,

where information is available. Average annual growth rates of LTC beds, separately shown for

institutions and hospitals, reveal that countries such as France and the UK experienced relatively little

growth in institutional LTC beds and declines in LTC hospital beds from 2000 to 2009. Other countries

such as Japan and Australia (institutional data only available) experienced growth in LTC beds over this

time period. Increases in LTC beds over the past decade may reflect demand for institutional services in

certain countries due to an aging population as well as government policies that provide greater coverage

and financing for institutional care, among other factors. Conversely, stagnation or decline in the rate of

LTC beds may reflect government policies that have emphasized home care and as a result may have

shifted public financing away from institutional care toward home and community-based settings.

Estimates of the proportion of residents with dementia receiving institutional care are also provided in

Table 19. Countries also report a substantial proportion of residents with dementia in LTC facilities.

Three out of four focus countries for which data are available report about half or more residents in LTC

facilities with dementia.

http://www.alzheimer-europe.org/Policy-in-Practice2/National-Dementia-Plans/France#fragment-1.

195 Martin Knapp, Adelina Comas-Herrera, Ami Somani, et al., Dementia: international comparisons, Summary report for the

National Audit Office, Personal Social Services Research Unit, London School of Economics and Political Science and Section of

Mental Health and Ageing, The Institute of Psychiatry, King’s College London, May 2007.

196 Pierre Moise, Michael Schwarzinger, Myung-Yong Um, et al., Dementia Care in 9 OECD Countries: A Comparative

Analysis, OECD Health Working Papers, 2004.

64
Table 19. Long-Term Care (LTC) Facilities

Country Eligibility Number of

LTC Beds

Average Annual

Growth Rate of LTC

Beds

(2000–2009)a Residents with

Dementia

Other Information

InstitutionsHospitals

Australia Persons with a high

level of disability and

care needs, assessed

by ACATs

143,000 7.8% NA 50% to 55% of

people with

dementia in

residential careb

Dementia is not a specific

condition for admission;

funding is provided by

the Australian

Government according to

the Resident

Classification Scale

(RCS)

France Persons who require

long-term care due to

a chronic or acute

medical condition

684,159

c

0.3% -6.1% Not available LTC facilities are defined

as medicalized

institutions where

medical care is provided;

institutional care is a

covered service under the

public health insurance

system

Japan Persons aged 65 and

older needing

nursing care who are

insured by LTCI

NA 3.6% 3.3% 30% of nursing

facility residents

had dementiad

Dementia is one of 15

age-related diseases that

determine eligibility for

LTCI; nursing care is

provided by local

government or private

licensed providers

United

Kingdom

Persons eligible for

local authority

funded services who

pass the means test;

eligibility criteria set

by the local authority

441,335

e NA NA 60% of persons in

care homes have

dementia

Institutional care includes

residential care homes

and nursing homes, and

long-stay hospitals.

Long-stay hospital

coverage is under the

National Health Service

United

States

Persons in need of

LTC generally

measured by

limitations in

activities of daily

living or need for

supervision in such

activities

1,704,182

f

0.9% -1.9% 48.40%fLTC facilities include

either skilled nursing

facilities (SNFs) or

nursing facilities (NFs)

certified to participate in

Medicare and/or

Medicaid

Source: Martin Knapp, Adelina Comas-Herrera, Ami Somani, et al., Dementia: international comparisons, Summary report for

the National Audit Office, Personal Social Services Research Unit, London School of Economics and Political Science and

Section of Mental Health and Ageing, The Institute of Psychiatry, King’s College London, May 2007; Pierre Moise, Michael

Schwarzinger, Myung-Yong Um, et al., Dementia Care in 9 OECD Countries: A Comparative Analysis, OECD Health Working

Papers, 2004; OECD, Health at a Glance 2011: OECD Indicators, 2011, http://dx.doi.org/10.1787/health_glance-2011-en, pp.

174–175.

Notes: ACAT = Aged Care Assessment Teams; LTC = long-term care; LTCI = long-term care insurance; NA = not available.

a. “Institutions” data for France is from 2003 to 2007; “Hospitals” data for United States is from 2000 to 2007, from

OECD, Health at a Glance 2011: OECD Indicators, 2011, http://dx.doi.org/10.1787/health_glance-2011-en.

65
b. Henry Brodaty and Anne Cumming, “Dementia services in Australia”, International Journal of Geriatric Psychiatry,

vol. 25 (2010), pp. 887–895.

c. 2009 data, as reported in Marie-Eve Joël, Sandrine Dufour-Kippelen, Catherine Duchêne, et al., “Long-Term Care in

France”, European Network of Economic Policy Research Institutes (ENEPRI), Research Report No. 77, June 2010.

d. Data from the late 1990s, as reported in Martin Knapp, Adelina Comas-Herrera, Ami Somani, et al., Dementia:

international comparisons, Summary report for the National Audit Office, Personal Social Services Research Unit,

London School of Economics and Political Science and Section of Mental Health and Ageing, The Institute of

Psychiatry, King’s College London, May 2007.

e. 2006 data for England, as reported in Martin Knapp, Adelina Comas-Herrera, Ami Somani, et al., Dementia:

international comparisons, Summary report for the National Audit Office, Personal Social Services Research Unit,

London School of Economics and Political Science and Section of Mental Health and Ageing, The Institute of

Psychiatry, King’s College London, May 2007.

f. American Health Care Association, Nursing Facilities’ Operational Characteristics Reports, June 2012, analysis of

Centers for Medicare and Medicaid Services (CMS) Form 1539 data; and American Health Care Association, Nursing

Facilities’ Patient Characteristics Report, June 2012, analysis of CMS Form 672 data.

In general, providing LTC in institutions is more expensive than home-based care. Yet, researchers

caution against the assumption that government policies that attempt to shift the balance between

institutional and community-based care will achieve cost-savings for providers or payers.

197 Others note

that continuing care options may be a more appropriate and effective way to provide for the LTC needs of

persons with dementia, particularly in advanced stages of illness and in the absence of informal or other

community-based supports.

198 This has led countries to explore alternative models of residential care

delivery, such as those in small group homes that provide an intermediate level of care that may fall

somewhere between home care and institutional care.

Alternative Residential Care Models

Approaches to alternative residential care models focus on care that is patient-centered with respect to the

patient’s preferences and needs. Services are arranged to support older persons with dementia to maintain

their autonomy and quality of life. These alternative models tend to focus on a psycho-social model of

care delivery that emphasizes normalization of daily life for persons with dementia with a focus on both

psychological and social aspects of behavior. These care settings differ from traditional institutional care

settings that emphasize a medical model of care delivery in which the focus is on curative care and

treatment of disease. As there is no cure for dementia yet, care delivery has shifted toward development

of various purpose-built environments, which offer residential care that emphasizes a psycho-social

model of care delivery. Such approaches also consider the importance of the physical environment in the

provision of dementia care. For example, residential care settings might include features such as

communal kitchens and living rooms, outdoor seating areas and gardens, private bedrooms, and in some

models private bathrooms. Some care settings encourage residents to bring their own furniture and

decorations. According to researchers, some studies have suggested that small, home-like environments

can be beneficial to older persons with dementia.199

Table 20 provides a brief summary of various models of small, home-like residential care environments

in each of the five focus countries across certain characteristics including their physical setting, the

number of residents, residents’ characteristics, and domestic characteristics and care concepts found in

each model. In general, these smaller residential settings provide care to anywhere from 5 to 15 residents.

Physical features that are similarly found in these settings include common spaces such as kitchens,

197 Martin Knapp, Adelina Comas-Herrera, Ami Somani, et al., Dementia: international comparisons, Summary report for the

National Audit Office, Personal Social Services Research Unit, London School of Economics and Political Science and Section of

Mental Health and Ageing, The Institute of Psychiatry, King’s College London, May 2007.

198 WHO, Dementia: A Public Health Priority, 2012, http://www.who.int/mental_health/publications/dementia_report_2012/en/

index.html.

199 Hilda Verbeek, Erik van Rossum, Sandra M.G. Zwakhalen, et al., “Small, home-like care environments for older people with

dementia: a literature review,” International Psychogeriatrics, vol. 21, no. 2 (2009), pp. 252–264.

66
dining areas, and living rooms. Care to persons in these settings is typically focused around daily life with

resident opportunities to participate in daily household or housekeeping activities. Some models have a

home for life care concept where care needs may intensify as residents’ needs increase over time, it is

expected that individuals will receive care in these settings until their death. (As a further example of

small group homes for persons with dementia, see Text Box entitled Japan: Small Group Homes.)

67
Table 20. Selected Models of Residential Care Settings for Persons with Dementia

Model (Country) Physical

Setting

Number of

Residents

Residents’

Characteristics

Domestic

Characteristics Care Concept

CADE units

(Australia)

Purpose built

environment;

proximity to

local

community

8–14 Moderate to severe

dementia; ambulant,

with no significant

physical problems;

behaviorally

disturbed; few

psychiatric problems

Opportunities to

participate in

household activities;

familiar decor

Based on

normalization; staff

work patiently at the

resident’s pace; needs

of the resident take

precedence over the

needs of the unit;

staff include

registered nurses and

residential care

assistants

Cantou

(France)

Community

living in a

separate

enclosed area;

large kitchen

and living room,

with adjacent

private

bedrooms

12–15 Senile dementia Participation in daily

activities

Non-medical,

communal care;

stable multi-purpose

staff; home for life

Domus

philosophy

(United

Kingdom)

Purpose built

facility or

conversion of

existing facility;

private bedroom

with shared

bathroom and

living room

9–12 Dementia, requiring

intensive nursing

care; elderly

psychiatric patients

Psychological/

emotional needs of

residents above

physical aspects;

emphasis on

maintaining

independence and

residual capacities;

home for life

Green House

(United States)

Self-contained

semi-attached

private homes;

large kitchen

and living room,

with adjacent

private

bedrooms and

bathrooms

7–10 Dementia-specific or

general nursing home

level of care

Garden/fireplace;

participation in

typical home

activities

Social model with

necessary clinical

care; emphasis on

competence;

universal worker

concept where direct

care worker provides

housekeeping and

personal care

assistance

Group Homes

(Japan)

Self-containing

residences or

attached to

larger facility

5–9 Mild to moderate

dementia

Residents participate

in daily

housekeeping, if

possible

Care around daily

life; specialized inhome care services

with mutual support

for elderly with

dementia

Source: Excerpted from Hilda Verbeek, Erik van Rossum, Sandra M.G. Zwakhalen, et al., “Small, home-like care environments

for older people with dementia: a literature review”, International Psychogeriatrics, vol. 21, no. 2 (2009), pp. 252–264.

68
Japan: Small Group Homes

Research suggests that the establishment of the LTCI program in Japan has led to innovative models for care delivery, many of

which are directed at assisting those with dementia. In particular, Japan has introduced small group homes, many in rural areas,

as an intermediate level of care between home and institutional care for persons with dementia. In 2000, there were

approximately 369 group homes nationwide; by 2006 that number had increased to 8,052. Authors suggest that the growth of

group homes increased not only because of the LTCI program, which reorganized the way LTC is paid for in Japan, but changes

to government policies created new opportunities for care delivery in the private sector. One model program, Welfare Foundation

Zenjinkai located in Iwate Prefecture, provides adult day health services to those with dementia, but does not exclusively target

such persons. For those with dementia, Zenjinkai also offers a hotel and two group homes. Other group-living units in Japan exist

within traditional nursing homes. Traditional nursing homes in Japan are based on a medical model where residents usually share

bedrooms. These smaller group residential units provide a home like environment where residents have a private room with

common areas, such a dining rooms, to facilitate interaction between residents and staff. There are also stable staff assignments in

these homes. Some evidence suggests that residents with dementia have improved quality of life in Japan’s small group-living

situations compared to their traditional nursing homes.

Source: John W. Traphagan and Tomoko Nagasawa, “Group Homes for Elders with Dementia in Japan,” Care Management

Journals, vol. 9, no. 2 (2008); Miharu Nakanishi, Taeko Nakashima, and Kanae Sawamura, “Qualify of life of residents with

dementia in group-living situation: an approach of creating small, homelike environments in traditional nursing homes in Japan,”

Nihon Koshu Eisei Zasshi, Institute for Health Economics and Policy, vol. 59, no. 1 (2011).

Informal Caregiving

Informal caregivers are often referred to as the backbone of the LTC system.

200 However, it is also noted

that variation exists across countries in the use of informal caregiving relative to formal LTC providers. In

developed countries the presence of informal caregiving may reflect the extent of available formal

services and providers, financial support provided by governments to encourage informal caregiving, as

well as cultural norms concerning the role of family members in providing needed care. The following

provides information about informal caregiving to persons with dementia with some data on caregiving to

those in need of LTC, including persons with AD and related dementia. The next sections provide

selected information on programs and policies in the five focus countries that can assist caregivers such as

targeted services or interventions to reduce caregiver stress and burden, financial support to caregivers,

and respite care services and programs.

Caregiving to Persons with Dementia

Informal caregiving to persons with dementia encompasses a wide range of activities and assistance that

may change over time as the needs of the care recipient progress. In early stages of dementia, informal

caregivers may support family members in accessing the health care and social services systems and

communicating with providers. For persons with moderate to severe dementia, caregiving activities may

include assistance with personal care needs, such as bathing, dressing, or eating, as well as other activities

that are necessary for community living, such as shopping, managing medications, and preparing meals.

In addition, caregivers may also arrange, supervise, or pay for formal care provided to the care recipient.

For persons with dementia, the availability of informal care may influence the amount of formal care a

beneficiary receives. As dementia progresses into later stages of the illness and individuals develop

greater care needs the role of informal caregiving may shift to formal care providers, if available.201

The OECD comparative analysis of dementia care found that support for informal caregivers is a shared

policy goal among the countries studied, including the five focus countries. As dementia care has shifted

200 WHO, Dementia: A Public Health Priority, 2012, http://www.who.int/mental_health/publications/dementia_report_2012/en/

index.html.

201 Martin Knapp, Adelina Comas-Herrera, Ami Somani, et al., “Dementia: international comparisons,” Summary report for the

National Audit Office. Personal Social Services Research Unit, London School of Economics and Political Science and Section

of Mental Health and Ageing, The Institute of Psychiatry, King’s College London, May 2007.

69
to community-based settings, researchers have noted that the role of informal caregiving is an essential

element. According to the WHO, there is some concern that there may be too few informal caregivers

over the long term as globally the number of persons with dementia is projected to increase substantially.

Demographic trends, such as smaller family sizes, may limit the number of available caregivers to

persons with dementia, as well as the capacity for caregivers to provide needed care. Increased labor

market participation among women, who traditionally have assumed the role of informal caregiver, may

make them unavailable to take on this role as well.202

Figure 16 provides information about the percentage of the population reporting to be caregivers in

France, Australia, and the UK, compared to the OECD average. In OECD countries, on average, during a

period around 2007, one-in-nine persons aged 50 and older reported providing assistance with activities

of daily living (ADLs) for a relative, regardless of diagnosis or condition. A higher proportion of the

population 50 and older reported providing care in the UK than in France or Australia. The higher

proportion of family members reporting that they provided care to relatives may be associated with

limited availability of accessible or affordable paid LTC and/or government policies that financially

support informal caregiving.

Figure 16. Percent of Population Aged 50 and Over Reporting to be Informal Caregivers

(around 2007)

Source: OECD, Health at a Glance 2011: OECD Indicators, 2011, http://dx.doi.org/10.1787/health_glance-2011-en, pp.

170-171.

Notes: Informal caregivers are defined as persons aged 50 and older providing assistance to a family member with basic

activities of daily living (ADLs) for at least one hour per week. Data are based on national and international health surveys;

OECD estimates based on the 2005-2007 HILDA survey for Australia; the 2007 BHPS survey for the United Kingdom, and

the 2004-2006 SHARE survey for other European countries. Survey results may be affected by reporting biases and recall

problems. Data were not reported for Japan and the United States.

Family members are most likely to provide informal care, and most informal caregivers are women. On

average, about two-thirds (66%) of caregivers ages 50 to 64 in OECD countries are women. Adult

children or spouses tend to take primary responsibility for informal caregiving. However, different

cultural norms about responsibility for providing care for aging parents exist across countries. One

example is in Japan where changing attitudes about the responsibility of adult children, and in particular

202 U.S. Congress, House Committee on Foreign Affairs, Subcommittee on Africa, Global Health, and Human Rights, Global

Strategies to Combat the Devastating Health and Economic Impacts of Alzheimer's Disease, 112th Cong., 1st sess., June 23,

2011, H.Hrg. 112-96 (Washington: GPO, 2011).

70
daughters-in-law, to care for elderly parents has led to changes in approaches to care, such as coverage of

formal care including adult day health centers.203

Figure 17 provides information on the percent distribution of informal caregivers providing certain hours

of care in France, Australia, the U.S., and the UK as well as in comparison to the OECD average. On

average, across OECD countries the majority (52%) of informal caregivers reported providing less than

10 hours of care per week. In the United States, 34% of informal caregivers reported providing 10 to 19

hours of care per week, a percentage twice the OECD average and greater than any of the other focus

countries. It may be that efforts in certain focus countries to reduce caregiver burden, possibly through

formal care for those with significant LTC needs, reduce the amount of time informal caregivers may

spend providing needed care.

Figure 17. Percent Distribution of Weekly Hours of Care Provided by Informal Caregivers

(around 2007)

Source: OECD, Health at a Glance 2011: OECD Indicators, 2011, http://dx.doi.org/10.1787/health_glance-2011-en, pp.

170-171.

Notes: Informal caregivers are defined as persons aged 50 and older providing assistance to a family member with basic

activities of daily living (ADLs) for at least one hour per week. Data are based on national and international health surveys;

OECD estimates based on the 2005-2007 HILDA survey for Australia; the 2007 BHPS survey for the United Kingdom, and

the 2004-2006 SHARE survey for other European countries; and the 2006 HRS survey for the United States which includes

care provided for parents only. Survey results may be affected by reporting biases and recall problems. Data were not

reported for Japan.

Caregiver Interventions

Some observers have expressed concern over the stress informal caregivers to persons with dementia may

experience, particularly in caring for persons with advanced stages of illness. In addition to memory loss,

persons with moderate to advanced dementia may have challenging behavioral symptoms that include

failing to recognize the caregiver, a tendency to become lost in familiar places or frequently wandering

from home. Other behavioral problems that can pose challenges to caregivers include repeated

questioning, aggression, and disturbed sleeping. These behaviors can be emotionally and physically

stressful for caregivers. Some research suggests that there may be adverse health outcomes related to

203 Nanako Tamiya, Haruko Noguchi, and Akihiro Nishi, et al., “Population ageing and wellbeing: lessons from Japan’s longterm care insurance policy,” The Lancet, vol. 378, pp. 1183-1192.

71
caregiving, including elevated blood pressure, an impaired immune system, and potential increased risk

for cardiovascular disease.204 Research has also documented high levels of depressive symptoms and

other mental health problems among those who provide care compared with those who do not. In

particular, higher levels of depression are associated with caregivers assisting those individuals with

dementia. Studies in the United States have shown that about 30% of dementia caregivers suffer from

depression, and more than 40% report high levels of emotional stress as a result of caregiving.205

Most focus countries offer information, education, and training programs, to help informal caregivers

provide care to persons with dementia as well as provide emotional support for the caregiver role. Many

of these dementia-specific programs are provided through AD organizations and in some countries the

government provides funding to support these initiatives. One example of such a program in Australia

aims to provide individuals in early stages of dementia and their caregivers with information, education,

and support with diagnosis and treatment of the disease and its symptoms.

Australia’s National Dementia Support Program

The Australian government funds Alzheimer’s Australia to deliver the National Dementia Support Program (NDSP) which

provides a range of programs and services for persons with early stages of dementia and their caregivers. Some of these

programs and services are described below, many of them are free of charge:

• The National Dementia Helpline–provides a centralized telephone number for persons with dementia, family

members, and caregivers seeking advice, information, and referral services.

• Dementia and Memory Community Centers–provides a range of services including counseling, recreational

activities, education courses, and informational resources to persons with dementia, family members, and

caregivers.

• The Living with Memory Loss Program–provides individuals with dementia and their caregivers with a structured

group program that provides participants with information, advice and peer support to assist them in understanding

the condition and in planning for the future. Persons with dementia and their caregivers meet separately in small

groups for 2 hours a week for seven weeks.206

• Counseling and Caregiver Support Groups–provides the opportunity for persons with dementia, their family

members, and caregivers to discuss issues confidentially or with others in similar situations in supportive

environments with skilled counselors.

• Education and Training–provides a nationally accredited competency based training course in dementia for families

and dementia caregivers and others who work with persons with dementia.

Source: Alzheimer’s Australia, http://www.fightdementia.org.au/about-us/what-we-do.aspx.

Other caregiver interventions have been developed to specifically target stress and burden associated with

caregiving to persons with dementia. In the United States, the REACH II intervention to reduce stress and

burden among caregivers to persons with AD has shown positive improvements to caregiver quality of

life through clinical trials.

204 Carolyn C. Cannuscio et al., “Reverberation of Family Illness: A Longitudinal Assessment of Informal Caregiver and Mental

Health Status in the Nurses’ Health Study,” American Journal of Public Health, vol. 92, iss. 8, pp. 1305-1311; Nadine Marks et

al., “Transitions to Caregiving, Gender, and Psychological Well-Being; A Prospective U.S. National Study,” Journal of Marriage

and Family, vol. 64, no. 3, pp. 657-667.

205 Kenneth E. Covinsky et al., ”Patient and Caregiver Characteristics Associated with Depression in Caregivers of Patients with

Dementia,” Journal of General Internal Medicine, vol. 18 (2003), pp. 1006-1014.

206 Sallyanne Aarons, "Living with Memory Loss: A Program for People with Early Stage Dementia and their Carers: A Case

Study," Clinical Psychologist, vol. 7, no. 1 (2003), pp. 63-66.

72
United States: Resources to Enhance Caregiver Health II (REACH)

Resources for Enhancing Alzheimer's Caregiver Health II (REACH II) is an intervention designed to reduce stress, burden, and

depression in caregivers of persons with AD and dementia. Funded by the NIH and tested in a randomized clinical trial, the

intervention aims to improve caregivers’ ability to provide self-care, provide caregivers with social support, and help caregivers

learn how to manage difficult behaviors in care recipients. REACH II was also designed to address the needs of culturally diverse

caregivers of persons with AD and dementia, including White, Hispanic, and African-American caregivers. The REACH II

protocol includes a variety of targeted intervention strategies selected to address the caregiver’s needs that are based on an

individualized assessment.

Intervention strategies include: the provision of educational information; skills training to manage care recipient behaviors; social

support; cognitive strategies for reframing negative emotional responses; and strategies for enhancing healthy behaviors and

managing stress. Methods used in the intervention include: didactic instruction, role-playing, problem-solving tasks, stress

management techniques, and telephone support groups. Results from the REACH II intervention show improvements in

caregiver quality of life for all racial and ethnic caregiver groups. Compared to caregivers who did not receive the intervention,

REACH II caregivers reported better self-rated health, sleep quality, physical health, and emotional health, which was related to

less burden with their caregiving role. REACH II has also been effective in delaying the time of institutionalization in individuals

with AD and dementia, so that are able to spend more time at home with their families and loved ones.

The REACH II intervention has been disseminated in the United States through the Administration on Aging (AoA) and the

Department of Veterans Affairs (VA). NIH is also looking to disseminate the REACH II intervention internationally. Most

recently, efforts have been undertaken to adapt the intervention to caregivers in Hong Kong.

Source: Amanda F. Elliott, Louis D. Burgio, and Jaime DeCoster, “Enhancing Caregiver Health: Findings from the Resources

for Enhancing Alzheimer’s Caregiver Health II Intervention,” Journal of the American Geriatrics Society, vol. 58, no. 1 (2010);

SAMHSA’s National Registry of Evidence-Based Programs and Practices: Resources for Enhancing Alzheimer’s Caregiver

Health II (REACH II), http://nrepp.samhsa.gov/ViewIntervention.aspx?id=129; U.S. Congress, House Committee on Foreign

Affairs, Subcommittee on Africa, Global Health, and Human Rights, Global Strategies to Combat the Devastating Health and

Economic Impacts of Alzheimer’s Disease, 112th Cong., 1st sess., June 23, 2011, H.Hrg. 112-96 (Washington: GPO, 2011).

Financial Support

In the five focus countries government policies that provide financial support to informal caregivers either

in the form of tax relief or direct financial support may assist dementia caregivers. While these policies

are not specifically targeted at dementia caregivers, financial support can assist family members who may

make employment and other workplace adjustments to provide dementia care, such as reducing paid

employment hours or taking a leave of absence from paid work to care for a relative with dementia. Some

countries provide allowances directly to caregivers to help compensate. Other countries provide cash

payments that are paid directly to persons with disabilities. In the five focus countries these policies

include caregiver payments (Australia and UK); cash allowances to beneficiaries that can pay informal

caregivers (France and the United States); and tax relief (France and the United States). Table 21

provides a brief description of selected government financial support programs and benefits in the five

focus countries.

73
Table 21. Financial Support Programs for Informal Caregivers

Country Program Description

Australia Caregiver Support–Provides a Carer Payment, which is considered financial support to caregivers

to persons with a severe disability or medical condition, or a frail older individual, who are unable

to work in paid employment because they provide full-time daily care. The Carer Payment is

subject to an income and assets test and individuals may not receive a Carer Payment and another

income support payment such as an Age Pension. The Carer Payment rate for a single individual in

2012 is $712 Australian dollars (AUD) per month ($739 U.S.). Also provides a Carer Allowance

to informal caregivers providing care at the caregiver’s or care recipient’s home. The Carer

Allowance is not subject to income and assets tests and is not taxable. In 2012, the Carer

Allowance is $114 AUD per month ($118 U.S.). Informal caregivers receiving either the Carer

Payment or Carer Allowance are also eligible for an annual Carer Supplement of up to $600 AUD

per year ($623 U.S.), per person who qualifies the caregiver for other financial support.

France Cash Allowance to Beneficiaries—Provides a personalized allowance to individuals age 60 and

older in need of LTC services who meet a needs test (L’Allocation personnalisée d’autonomie).

Individuals with income above a certain threshold receive a benefit reduction. There are four

benefit levels with a maximum benefit amount for each level. In 2007, benefit amounts ranged

from up to 525 Euros ($667 U.S.) in the lower level of dependency to 1,245 Euros ($1,582 U.S.) in

the highest level of dependency, with an average benefit amount 494 Euros ($628 U.S.). The cash

benefit pays for a benefit package that is defined by care professionals. Family members can be

hired as informal caregivers, with the exception of spouses.

Tax Policy–Offers the following tax benefits: income tax reduction for the out-of-pocket costs

associated with hiring and individual to support with personal care activities; exemption from

employer contributions for individuals aged 70 and older who hire a personal care provider;

income tax reduction to individuals living in institutions for out-of-pocket costs associated with

their care.

Japan Not Applicable–Does not provide financial support to caregivers. Japan’s Long-Term Care

Insurance System provides formal LTC services directly to older individuals, which provide paid

services that may supplement informal caregiving or provide respite to caregivers.

United Kingdom Caregiver Support–Provides a caregiver’s allowance, which is considered compensation to the

informal caregiver for loss of earnings, instead of a wage for providing informal care. In 2010, the

allowance, which amounts to £58.45, or approximately $93 U.S., a week is provided to informal

caregivers who provide at least 35 hours of informal care per week, earn less than £100 (or $159

U.S.) per week, and are not full-time students or receiving any qualifying disability benefits.

United States Tax Policy–Offers tax relief to employed family caregivers, which includes the dependent care tax

credit (DCTC) and the exclusion from income for employer-provided dependent care assistance

programs (DCAP). Other tax provisions may provide indirect assistance to family caregivers,

regardless of employment status. These provisions are: (1) the dependency exemption, (2) the head

of household filing status, and (3) deductions for unreimbursed medical expenses. Rules regarding

eligibility and other limitations sometimes restrict the use of these benefits for certain taxpayers.

Cash Allowance to Beneficiaries—State Medicaid programs may offer beneficiaries the ability to

hire family members to provide care. Under these consumer-directed service delivery models, the

Medicaid beneficiary may receive a cash allowance for their LTC services that they can then use to

pay an informal caregiver, including family members. In some situations, spouses and other legally

liable relatives can be hired to provide personal care.

Source: Pierre Moise, Michael Schwarzinger, Myung-Yong Um, et al., Dementia Care in 9 OECD Countries: A Comparative

Analysis, OECD Health Working Papers, 2004; Information for Australian obtained from Australian Government, Department of

Human Services web-site, at http://www.humanservices.gov.au/customer/themes/carers; Information for France obtained from

Barbara DaRoit and Blanche LeBihan, “Similar and Yet So Different: Cash-for-Care in Six European Countries’ Long-Term

Care Policies,” The Milbank Quarterly, vol. 88, no. 3, 2010, pp. 286-309; and WHO, Dementia: A Public Health Priority, 2012,

http://www.who.int/mental_health/publications/dementia_report_2012/en/index.html; Information for UK obtained from Adelina

Comas-Herrera, Linda Pickard, Raphael Wittenberg, et al., The English Long-Term Care System, European Network of

Economic Policy Research Institutes (ENEPRI), Research Report No. 74, May 2010; Information for the United States from CRS

Report RL34123, Family Caregiving to the Older Population: Background, Federal Programs, and Issues for Congress, by

Kirsten J. Colello.

74
Note: All currency conversion amounts were obtained by using the XE currency conversion tool found at http://www.xe.com.

For Australia, currency conversion from Australian dollars to U.S. dollars was obtained for November 9, 2012. For France,

currency conversion from Euros to U.S. dollars was obtained for January 1, 2007. For the UK, currency conversion from British

pounds to U.S. dollars was obtained for November 9, 2012, eligibility rules and benefit amounts were obtained from the

following sources: http://www.dwp.gov.uk/docs/benefitrates2012.pdf and http://www.carersuk.org.

Respite Care

Most countries also support informal caregivers in general through respite care programs and services.

Respite care provides caregivers with a temporary break from caregiving responsibilities, with the aim of

reducing caregiver stress and associated burden. The term “respite care” is used to describe a range of

services from paid care provided in the home, to community-based care provided in a adult day health

center, to residential care provided for a short duration in a care home or nursing facility. Respite care is

typically the most requested form of support by caregivers. Some focus countries indicate that demand for

respite care services is greater than the available supply. For example, in Japan respite care appointments

must be made weeks in advance in many areas, which may be difficult for informal caregivers needing

access to respite care in emergencies or time-limited situations.207 Table 22 mentions selected respite care

programs and benefits in the five focus countries; descriptive information is provided when available.

207 Nanako Tamiya, Haruko Noguchi, and Akihiro Nishi, et al., “Population ageing and wellbeing: lessons from Japan’s longterm care insurance policy,” The Lancet, vol. 378, pp. 1183-1192.

75
Table 22. Selected Respite Care Services: Community-Based and Residential

Country Community-Based Respite Care Residential Respite Care

Australia Network of adult day health centers and in-home

respite services with at least one Carer Respite

Center in each region; centers have pooled funds,

or brokerages, which can be used to purchase

short-term or emergency respite care; centers are

encouraged to develop respite care services and

link caregivers to appropriate respite care services

including residential respite care; benefit is nonmeans tested.

Annual subsidies for short-term care in aged

care homes for person who need temporary

residential care; may be used on a planned or

emergency basis. The benefit is means-tested.

France Therapeutic day care centers and respite centers Respite Hospitalization Program; respite care

associated with group living is restricted to

persons with dementia living in residential

institutions

Japan Day care, day care with rehabilitation Short-stay respite care in an institutional setting;

group living for the elderly with dementia;

provides up to one week of respite stay per

month for care recipients in the highest level of

disability and shorter periods for lower levels of

disability

United

Kingdom

Day care respite, which is restricted to persons

living at home; sitter services

Respite admissions to hospitals and nursing

homes, or residential homes

United

States

State Medicaid programs can offer in-home respite

care and adult day health services as covered

services to beneficiaries in need of LTC who

typically have a level of care need that is

equivalent to nursing facility care.

Limited provision of residential respite care

options that are provider specific, mostly

financed privately.

Source: Pierre Moise, Michael Schwarzinger, Myung-Yong Um, et al., Dementia Care in 9 OECD Countries: A

Comparative Analysis, OECD Health Working Papers, 2004; Information for Australia from Gibson, Mary-Jo, Steven R.

Gregory, and Sheel M. Pandya, Long-Term Care in Developed Nations: A Brief Overview, AARP Public Policy Institute,

October, 2003; Joost van Hoof, Helianthe S.M. Kort, and Hugo van Waarde, “Housing and care for older adults with

dementia: a European perspective,” Journal of Housing and the Built Environment, vol. 24 (2009), pp. 369-390; Nanako

Tamiya, Haruko Noguchi, and Akihiro Nishi, et al., “Population ageing and wellbeing: lessons from Japan’s long-term care

insurance policy,” The Lancet, vol. 378, pp. 1183-1192.

76
Chapter 4: Prevalence of Dementia and Alzheimer’s Disease

in Low- and Middle-Income Countries

"'$%&)#!$(&'

This chapter will discuss the prevalence of dementia and Alzheimer’s disease in middle and low-income

countries, the unique challenges facing these regions, and the international efforts being undertaken to

address and raise awareness about mental health issues, including dementia.

"$'#!&'%('

According to WHO, an estimated 35.6 million people are living with dementia worldwide as of 2010.

This population is projected to nearly double every 20 years (Figure 18).208 Researchers are developing a

stronger understanding about dementia and its prevalence209

, though the bulk of prevalence data that

WHO collects continues to be sourced mostly from high-income countries.210

Figure 18. Estimated and Projected Prevalence of Dementia by Region

Source: Alison Abbott, "A Problem for Our Age," Nature, vol. 475 (July 14, 2011), p. S3.

208 WHO, Dementia: A Public Health Priority, 2012, p. 2, http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf.

209 Prevalence is the percentage of a population that is infected with a particular disease at a given time.

210 The income groups are: low income, <$1,025; lower middle income, $1,026-$4,035; upper middle income, $4,036-$12,475;

and high income, >$12,476. See http://data.worldbank.org/about/country-classifications/country-and-lending-groups.

77
WHO estimates that more than half of global

dementia cases occur in low- and middle-income

countries (LMIC, Figure 19),211 where this is

projected to become a growing problem should

prevalence continue to rise as expected (Figure

20). LMIC are an aggregate of countries with

gross national income (GNI) ranging from

<$1,025 through $12,475 (Figure 21). In 2010,

roughly 53% of dementia cases were in LMIC. By

2050, WHO expects 70% of all cases to be found

in the region.212

Figure 20. Estimated and Projected Prevalence of Dementia by Income Group

Source: Edited by CRS from WHO, Dementia: A Public Health Priority, 2012, p. 19.

+#($$&"%&- *('!"% ).,! !"# !#%%"$!*%)#&( +#,%"!'($

In high-income countries, familial efforts to care for those affected by dementia are augmented by

pharmaceutical therapies and formal care provided in institutional and home- and community-based

settings, which are often funded through insurance or other governmental programs. In the majority of

LMIC, however, low awareness of dementia and its impact are reflected in few government policies and

programs aimed at addressing the disease. As a result, care for people living with dementia in these

regions falls predominantly on families. This dynamic exemplifies unique challenges facing people living

211 WHO, Dementia: A Public Health Priority, 2012, p. v.

212 Ibid, p. 13.

Figure 19. Share of Global Dementia Cases

by Income Group, 2010

Source: Created by CRS from WHO, Dementia: A Public

Health Priority, p. 13.

78
with dementia in these regions, as well as their caretakers. The section below highlights additional

challenges.

Figure 21. Map of World Bank Income Groups, 2011

Source: Created by CRS based on the World Bank’s income groups categories. See http://data.worldbank.org/about/

country-classifications/country-and-lending-groups.

"&$# &' "!%(

WHO estimates that total global spending on care for people living with dementia reached $604 billion in

2010.213 Roughly 90% of those resources were spent in high-income countries. Support for people with

dementia is funded differently across the world. In high-income countries, roughly 40% of associated

costs are borne by the family through informal care, whereas in LMIC, nearly 60% are (Figure 22).

Health insurance or other social safety net schemes are typically employed in high-income countries to

alleviate some of the financial burden associated with caring for loved ones with dementia. Such fiduciary

supports are not widely available in most LMIC (Figure 23) and the formal social care sector in these

areas is ill-equipped (Figure 24), requiring families to assume not only the cost of care, but also the

delivery of care. WHO estimates that while 30% of people with dementia live in assisted living facilities

or nursing homes in high-income countries, only 11% do in LMIC.

213 Unless otherwise indicated, data in this paragraph was taken from WHO, Dementia: A Public Health Priority, 2012.

79
Figure 22. Sources of Funding for Dementia Care by Income Group, 2010

Source: Created by CRS from WHO, Dementia: A Public Health Priority, 2012, p. 27.

Note: Direct social costs are those associated with the provision of care by a trained professional; direct medical costs

relate to the expenses associated with medical treatment (e.g., pharmaceutical treatments, medical screening and hospital

stays); and informal care refers to uncompensated care provided by untrained persons, usually family members.

Figure 23. Availability of Social/Financial Benefits for People With Dementia by Income

Group, 2010

Source: WHO, Dementia: A Public Health Priority, 2012, p. 44.

Notes: Results reflect a survey conducted by WHO of 41 countries including: 8 high-income; 9 upper middle-income; 8

lower middle-income; and 5 low-income countries.

80
Figure 24. Median Rate of Mental Health Personnel by Income Group, 2011

(Per 100,000 Population Working in the Health Sector)

Source: Created by CRS from WHO, Mental Health Atlas 2011, 2011, p. 57.

*%&(")$'!'$#

The World Bank (the Bank) expects LMIC to experience higher rates of economic growth than highincome countries. In 2012 and 2013, the Bank projects economies in LMIC will expand by 5.4% and

6.0%, respectively, while anticipated growth in high-income countries is 1.4% and 2.0%.

214 Trends

indicate that populations age as they become increasingly prosperous. With immature health systems and

inadequate health resources, ailments that afflict the elderly, such as dementia, risk derailing economic

growth as the productive population attempts to care for their older loved ones. Caring for loved ones

with dementia consumes familial resources and can decrease productivity. Without a formal social sector

upon which to rely, adults of productive working age in LMIC face lost work hours as they struggle to

care for older family members with dementia. Several studies have revealed a high proportion of

caretakers had stopped or reduced paid work to care for loved ones affected by dementia. Researchers

also found alarming rates of food insecurity among households caring for someone afflicted with

dementia and little to no access to any pension.215

At the same time, traditional familial networks weaken as countries become increasingly prosperous and

larger segments of societies enter the workplace (particularly women), further complicating efforts to care

for dementia sufferers in LMIC.

214 The World Bank, Global Economic Prospects: Uncertainties and Vulnerabilities, Volume 4, January 2012, p. 1,

http://siteresources.worldbank.org/INTPROSPECTS/Resources/334934-1322593305595/8287139-1326374900917/

GEP_January_2012a_FullReport_FINAL.pdf.

215 WHO, Dementia: A Public Health Priority, 2012, p. 43.

81
!$#"'!*#&%) +&%("$

Prosperity is often linked with declines in birth rates. Industrialized countries are already facing economic

and societal challenges associated with aging populations. LMIC will soon face these challenges while

attempting to sustain economic advancement. China faces particular challenges as its “one child policy”,

which was enacted in 1978, has reduced family size and indirectly weakened the capacity of family

members to care for their elderly relatives. While unpaid informal care is the dominant source of care in

LMIC, declining birth rates and aging population trends erode familial capacity to assume the bulk of

dementia-related costs, which can lead to greater demand for government services.

)(&,+(*' %.# *!"!.-$%

HIV/AIDS poses an additional challenge to older persons in LMIC. In the wake of the global HIV/AIDS

epidemic, thousands of children have been orphaned by the disease. Nearly 17 million children worldwide

are estimated to have lost at least one parent to HIV/AIDS, almost 90% of whom reside in Africa.

216 In

the region, the elderly play a large role in caring for children orphaned by HIV/AIDS. In some countries,

more than half of all children who lost a parent to HIV/AIDS are being cared for by their grandparent

(Figure 25).217

Figure 25. Share of Orphans Aged 0–14 Living with Grandparents

Source: UNAIDS, Africa’s Orphaned and Vulnerable Populations: Children Affected by AIDS, 2010, p. 16.

Elderly caretakers of orphaned children may be contending with dementia and may need additional care

themselves. At the same time, HIV-associated dementia is also a growing problem in LMIC, particularly

in high-prevalence countries like South Africa.

218 LMIC face the prospect of contending with the

intersection of HIV/AIDS and dementia both as a possible outcome of HIV infection and as a

consequence of aging.

216 UNAIDS, UNAIDS Report on the Global AIDS Epidemic, 2010, p. 112, http://www.unaids.org/documents/

20101123_globalreport_em.pdf.

217 UNAIDS, Africa’s Orphaned and Vulnerable Populations: Children Affected by AIDS, 2010, p. 16, http://www.unicef.org/

publications/files/Africas_Orphaned_and_Vulnerable_Generations_Children_Affected_by_AIDS.pdf.

218 See John A. Joska, “Clinical Correlates of HIV-Associated Neurocognitive Disorders in South Africa”, AIDS and Behavior,

vol. 14, no. 2 (2010), pp. 371–378.

82
+!%&), *('!$#"

Health systems in many LMIC are under-resourced and predominantly focused on combating infectious

diseases. Health-related consequences of aging is an emerging issue that has not historically been

prioritized in most LMIC. In fact, some LMIC have placed the responsibility of care and financial support

of the elderly squarely upon the shoulders of family members. The parliament in India, for example,

passed a law in 2007 that could impose fines or imprisonment on adult children who fail to care for their

parents.219 At the same time, the legislation authorized the establishment of old-age homes for the poor

and childless. Despite this example, LMIC are increasingly recognizing the need to address ageing and its

health consequences. October 17–20, 2012, the International Association of Gerontology and Geriatrics

will host its first conference in Africa.220 At the conference, leaders are expected to affirm their support

for improving national responses to issues facing older persons, including dementia and its related

illnesses.

Figure 26. Countries With National Mental Health Policies by Income Group and Region

Source: Created by CRS from WHO, Mental Health Atlas 2011, 2011, p. 17.

!"#% "$ +#"'$#)"&!#)% )#( *!#!*$#("%&(%!)'

*$()&'#)!'%&"

A variety of organizations are engaged in ameliorating living conditions for elderly persons. Below is an

illustrative list of some of these groups. The summary below is not intended to endorse or prioritize a

particular institution. Instead, it offers examples of the types of groups engaged in enhancing the

livelihood of older people and their caretakers, including advocating for improved dementia care. For an

219 WHO, Dementia: A Public Health Priority, 2012, p. 43.

220 The Web page for the conference is http://iagg.cmc-uct.co.za/.

83
additional list of organizations working on dementia and Alzheimer’s Disease, see

http://www.helpage.org/who-we-are/our-affiliates-/affiliates-list/.

AARP International. Based in the United States, AARP International raises awareness about issues

facing the elderly, shares best practices on related policy issues, and builds alliances with other groups to

advance policies and programs that “help people live longer, healthier, more financially secure and

productive lives.” The association also serves as a convening body that facilitates information sharing

among experts around the world through international conferences and other forums on “health and longterm care, older workers, financial security, retirement income, and livable communities.” In those

efforts, AARP International has established relationships with a variety of international actors, including

several bodies of the U.N. system like the International Labor Organization (ILO) and the World Health

Organization (WHO), the Organization for Economic Cooperation and Development (OECD), the

European Commission, the World Bank and the International Monetary Fund (IMF). AARP International

regularly hosts international visitors and facilitates their outreach efforts.

Alzheimer’s Disease International (ADI). Based in Britain, ADI empowers local and international

Alzheimer’s Disease associations “to promote and offer care and support for people with dementia and

their carers, while working globally to focus attention on dementia.” The organization aims to improve

quality of life for people with dementia and their families. In that capacity, ADI serves as the international

federation of Alzheimer’s Disease associations worldwide and maintains official relations with WHO.

One of its most prominent accomplishments is co-publishing the 2012 global dementia report with WHO.

The organization also holds an annual international conference on dementia and runs the Alzheimer

University—a workshop series aimed at bolstering capacity of Alzheimer’s Disease associations.

HelpAge International. Based in Britain, HelpAge International is an organization that advocates for and

implements programs that help “older people discrimination and overcome poverty, so that they can lead

dignified, secure, active and healthy lives.” In 2011, the organization reached 750,000 older people and

their families through Help Age health, emergency, and finance services. The group also helped two

million older people in filing for or increasing their pensions; offered legal support to 50,000 older people

in their fight against abuse and discrimination; trained 25,000 professionals and 16,000 community

members to provide healthcare, legal advice and financial support for older people. HelpAge International

also enables other groups who do similar work. In 2011, the organization supported 2,700 related groups.

International Association of Gerontology and Geriatrics (IAGG). Based in France, IAGG partners

with WHO to “promote the highest levels of achievement in gerontological research and training

worldwide, and to interact with other international, inter-governmental and non-governmental

organizations in the promotion of gerontological interests globally and on behalf of its member

associations.” It also sponsors the World Congress of Gerontology and Geriatrics, which is held every

four years. The conference is a forum through which experts share their knowledge.

World Health Organization (WHO). Based in Switzerland, WHO is the directing and coordinating

authority for health within the United Nations (U.N.) system. In this capacity, WHO serves as a

convening body for information sharing; assists countries in strengthening their health systems; and raises

awareness about key health issues. In addition, WHO leads the Mental Health Gap Action Program

(mhGAP), which seeks to bolster “political commitment of governments, international organizations and

other stakeholders” to address mental health needs.221

)&, *!-&"!(-%$!(# +'-%$!.

The international community is increasingly recognizing the impact of mental disorders associated with

aging, including Alzheimer’s Disease. Below are a list of actions taken by global actors to address and

221 WHO, Scaling Up Care for Mental, Neurological, and Substance Use Disorders, 2008, p. 1.

84
raise awareness about mental health issues, including dementia. Regional actions, such as those taken by

the European Union and the African Union are not included here.

• In May 1975 and May 1986, the World Health Assembly adopted resolutions

(WHA28.84 and WHA39.25, respectively) that urged Member States to strengthen

mental health components within their general health services and public health

programs.

• In July 1982, the United Nations convened the first international conference on aging in

Vienna, Austria. At the conference, Member States agreed to the Vienna International

Plan of Action on Aging, which was the first international policy document guiding the

formulation of policies and programs on global aging. The plan called on Member States

to develop, among other things, “comprehensive mental health care services ranging from

prevention to early intervention, the provision of treatments services and the management

of mental health problems in older persons.” Endorsed by the United Nations General

Assembly through (A/RES/37/51), the plan specified these plans were to target

Alzheimer’s Disease and other dementia-related diseases.

• In 2001, discussions about mental health were incorporated into the annual WHO World

Health Report for the first time.

• In April 2002, the United Nations sponsored the Second World Assembly on Ageing to

assess the progress made by Member States since implementing the Vienna Plan of

Action. Participating countries adopted two key documents: the Political Declaration on

Ageing and the Madrid International Plan of Action on Ageing. Both documents included

commitments from governments to devise and implement measures to address the

challenges posed by aging, including Alzheimer’s Disease and other dementia-related

diseases. Through these documents, governments agreed to link questions of aging to

other frameworks for social and economic development and human rights for the first

time.

• In May 2002, the World Health Assembly adopted a resolution (WHA55.10) that urged

Member States to support the WHO global action program for mental health and bolster

investments in mental health through national budgets and foreign aid.

• In May 2008, the WHO Mental Health Gap Action Program (mhGAP) was launched.

• In September 2011, the U.N. General Assembly adopted a resolution (A/RES/66/2) that

recognized that mental and neurological disorders, including Alzheimer’s Disease, are an

important cause of morbidity and contribute to the global non-communicable disease

burden, for which there is a need to provide equitable access to effective programs and

health care interventions.

• In May 2012, the World Health Assembly adopted a resolution (WHA65.4) on the global

burden of mental disorders, urging countries to develop national responses that are

comprehensive and coordinated across health and social sectors.

85
Conclusions

We all have a shared interest in deepening common understandings about the best strategies and

solutions for addressing the immense challenge posed by dementia and specifically Alzheimer’s

Disease to our aging societies. In issuing this report, it is the hope of the committee that the facts

and findings presented here will contribute to the sense of urgency felt by many policymakers,

researchers, and families around the world to address this growing public health threat.

With the number of individuals with AD in the U.S. set to triple during the next quarter century,

both the pace of research and the quality and cost-effectiveness of services must improve.

Recommendations from the World Health Organization’s 2012 report titled “Dementia: A Public

Health Priority,” are a useful guide. The recommendations include:

• improving public and professional attitudes about, and understanding of, dementia;

• investing in health and social systems to improve care and services for people with

dementia and their caregivers;

• promoting a dementia-friendly society globally;

• making dementia a public health and social care priority worldwide; and

• increasing the priority given to dementia in the public health research agenda.

Among the countries analyzed in this report, there appears to be considerable consensus in goals

for diagnosis, treatment, and research; however, some variations exist in treatment due to

different countries’ policy priorities, health care systems, and resources. Most countries prioritize

developing a more accurate and earlier diagnosis; identifying biomarkers for diagnosis and

charting the course of the disease; translating genetic advances into treatments; committing

resources to reduce the stigma associated with the disease; improving the continuity of care; and

developing a trained workforce. There is widespread global collaboration in basic and clinical

research within the scientific community independent of governmental efforts, especially in the

area of biomarkers, pharmacology, and genetics.

However, researchers do not definitively know the cause(s) of AD, and medical professionals do

not and cannot always properly diagnose it. To date, there is no cure for the disease in sight.

These difficulties highlight and demonstrate the vital need for investing in research for improved

treatments of AD and other dementias. Therefore, both international collaborations and national

investments in research should be applauded.

Despite challenging fiscal climates in many countries, investments in scientific research should

remain a priority. According to the Alzheimer’s Association, absent significant progress, the

cost of AD to the United States alone could be as high as $20 trillion over the next 40

years. These staggering projections underscore not only the human, scientific and clinical

challenges, but also the financial impact of AD without new discoveries in treatments, cures,

treatment and care for AD.

A principle shared policy goal among the focus countries identified in this report is to craft

policies that can enable individuals with dementia to live in their own homes for as long as

86
possible.222 To this end, countries have engaged in efforts to expand the provision of LTC

through programs and policies that support home and community-based services within their

existing health and social services delivery systems. Some countries have established, or plan to

establish, specialized home care services and specialized dementia care units in LTC facilities

that are designed to focus on meeting the particular needs of individuals with dementia. A

common challenge faced by the countries analyzed in this report is the ability to provide

coordinated and integrated care across their health and social services systems to persons with

dementia, particularly to those in more advanced and debilitating stages of illness. Several

countries have looked to person-centered care and service coordination as objectives of their

national AD plans by emphasizing targeted programs and services, such as those that offer

designated case managers who are trained in dementia care in order to facilitate access to the

most appropriate services.

Another shared policy goal among the countries that the committee examined is support of

informal family caregivers as primary care providers to persons with dementia. Reliance on

informal caregiving may partly reflect the extent of locally available formal services and

providers. The extent to which families provide informal care may also reflect cultural norms

about the willingness of families to provide extended care to loved ones. Among the focus

countries, efforts to support caregivers include providing various interventions targeted at

reducing caregiver stress and burden. While assessing the effectiveness of these caregiver

interventions is beyond the scope of this report, caregiver support services in these countries

include targeted financial support to compensate caregivers for their specific activities or

initiatives that provide general income support to offset a lack of income from other sources,

such as paid employment. There is some indication among focus countries that demand for

targeted services to caregivers, such as respite care, is greater than the available supply of such

services.

With a majority of global dementia cases expected to occur in low and middle-income countries

in the coming decades, the unique challenges facing these regions will become a growing

concern for those living with the disease as well as their family caregivers. These challenges

include low awareness of the signs of dementia, the high cost of care, and few dementia-related

policies and programs to address the need. However, many international and non-governmental

organizations are taking steps to address and raise awareness about mental health issues,

including dementia.

The growing need for Alzheimer’s disease and dementia research and development, diagnosis

and treatment, as well as long-term services and supports are well documented. It is also clear

that continued dialogue among the international community is necessary for lasting progress in

this global public health plight.

222 Pierre Moise, Michael Schwarzinger, Myung-Yong Um, et al., Dementia Care in 9 OECD Countries: A Comparative

Analysis, OECD Health Working Papers, 2004.

87
"%%(&!'$ #! "&#(!'%!$!$ "'$(!$( !%) "(&(%#'!

"(!$&%'# !') "&%#($ !),+ /# $') 1%)-.0, "&**.$$)) &(

!$#"$

"%&'$!## !$"# "'!#%$&

112 November 30, 2011 Overprescribed: The Human and Taxpayers’ Costs of Antipsychotics

in Nursing Homes

111 December 8, 2010

March 25, 2009

Forum: Until There’s a Cure: How to Help Alzheimer’s Patients and

Families NOW

The Way Forward: An Update from the Alzheimer’s Study Group

110 May 14, 2008 The Future of Alzheimer’s: Breakthroughs and Challenges

108 March 22, 2004 Crime Without Criminals? Seniors, Dementia and the Aftermath

104 April 23, 1996 Alzheimer’s Disease in a Changing Health Care System: Falling

Through the Cracks

98 September 12, 1983 Endless Night, Endless Mourning: Living With Alzheimer’s, New

York, NY

88
"&&)'!(% $# +#"%$!, *(&()$'#%""!

The four chapters describe five focus countries that were selected by the committee. These countries were

selected after review of the data available and National Alzheimer’s Disease Plans. The five focus

countries are not intended to represent world-wide dementia and Alzheimer’s Disease trends or efforts.

Rather, these focus countries, along with efforts in additional countries that are highlighted throughout the

report, provide examples of single and multi-country dementia and Alzheimer’s Disease diagnosis,

research, treatment, and care activities. The committee chose OECD members so that countries could be

compared with OECD averages. Additionally, the committee included countries that could be instructive

to the United States because of similar age structures (Australia)224

or because of disproportionately

“older populations” (Japan).225 The committee was also interested in including European countries

because of research and long-term care activities occurring in both the United Kingdom and France and

because of existing European Union-wide activities. With these specifications, the following five focus

countries were selected: (1) Australia, (2) France, (3) Japan, (4) the United Kingdom, and (5) the United

States.

223 This appendix does not apply to the fourth chapter that focuses on the prevalence of dementia and Alzheimer’s Disease in low

and middle income countries because that chapter does not discuss the five focus countries.

224 Although the absolute size of the Australian population is smaller than that of the United States, it has a similar percentage of

its population aged 65 and over and its population pyramids look similar to those of the United States (see Figure 2 and Figure

6).

225 For example, Japan was included as a focus country because it has the largest percentage of its population aged 65 and over of

OECD countries; therefore, it may have greater need for dementia care and services. For information about OECD populations

aged 65 and over, see Organization for Economic Cooperation and Development, OECD Factbook 2011: Economic,

Environmental and Social Statistics, at http://www.oecd-ilibrary.org/economics/oecd-factbook-2011-2012_factbook-2011-en.

89
,""&!'%. -+ *(/%$!(# )#(!0 )$' *-/)-&#!&. "% +"(,.

"'#($&)!%

The five selected countries included in this chapter have national plans that address dementia and AD.

These documents outline policy efforts in each country and are the source of most of the information in

this chapter.

The national plans provide policy road maps for each of the five countries.226 The major features of the

plans are highlighted below and Table 23 provides identifying information on the national plan by

country (in alphabetical order).

Table 23. National Dementia and/or Alzheimer’s Plans in Selected Countries

Country

Date or

Years

Covereda Plan Title Source

Australia 2006–2010 National Framework for

Action on Dementia: 2006–

2010

http://www.health.gov.au/internet/main/publishing.nsf/Content/B96

16604C02332D5CA25701B0075A997/$File/NFAD%20low%20res

%20Web%20Version%20Oct%2006.pdf

France 2008–2012 National Plan for Alzheimer

and Related Diseases

2008–2012

http://www.plan-alzheimer.gouv.fr/IMG/pdf/Plan_Alzheimer_2008-

2012_uk.pdf (in English)

Japan 2008–(no

end date)

Emergency Project for

Improvement of Medical

Care and Quality of Life for

People with Dementia

http://www.mhlw.go.jp/houdou/2008/07/dl/h0710-1a.pdf (in

Japanese)

United

Kingdom:

Englandb

2009 Living Well with Dementia:

A National Dementia

Strategy

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/Publi

cationsPolicyAndGuidance/DH_094058

United

Kingdom:

Northern

Irelandb

2011 Improving Dementia

Services in Northern Ireland:

A Regional Strategy

http://www.dhsspsni.gov.uk/improving-dementia-services-innorthern-ireland-a-regional-strategy-november-2011.pdf

United

Kingdom:

Scotlandb

2010 Scotland’s National

Dementia Strategy

http://www.scotland.gov.uk/Resource/Doc/324377/0104420.pdf

United

Kingdom:

Wales

b

2011 National Dementia Vision

for Wales: Dementia

Supportive Communities

http://wales.gov.uk/docs/dhss/publications/110302dementiaen.pdf

United

States

2012 National Alzheimer’s Plan http://aspe.hhs.gov/daltcp/napa/NatlPlan.shtml

Source: Alzheimer’s Disease International, Government Alzheimer Plans, at http://www.alz.co.uk/alzheimer-plans.

a. This refers to the year that the plan was published. If the publication year is not available, then the dates covered are

presented.

b. Each country in the United Kingdom (England, Northern Ireland, Scotland, and Wales) has a separate plan.

226 The dementia and Alzheimer’s Disease plan for the United Kingdom is divided into a group of plans. The UK includes

England, Northern Ireland, Scotland, and Wales. The plan for England is a national plan covering England and national health

policy. The plans for Northern Ireland, Scotland, and Wales are regional plans.

90
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The Australian “National Framework for Action on Dementia” (2006–2010) identifies five key areas:

care and support, access to care and equitable care, information and education, research, and workforce

and training.

227 A priority of the National Plan envisions activities in population-based prevention efforts

to reduce chronic health problems such as diabetes and improve cardiovascular health that can lead to

vascular dementia.

228

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France has had three national dementia and AD plans starting in 2001. In each plan treatment is a prime

focus. The first plan prioritized early diagnosis; creation of memory centers with staff able to provide

accurate diagnosis; establishment of adult day centers and residential homes; and funding of research.

Currently, France is prioritizing efforts in the following areas: changing the image of dementia to combat

stigma; increasing support for caregivers; coordinating care between providers; enabling more support at

home; improving access to diagnostic and care pathways; increasing residential care; developing training

for health professionals; and increasing resources for clinical research, epidemiology, public information,

and ethics.229

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The Japanese national strategy includes: (1) understanding the realities of daily life for patients with

dementia; (2) performing epidemiology surveys; (3) improving prevention and diagnosis; (4) developing

therapeutic tools; (5) facilitating and disseminating guidelines for care; (6) strengthening the diagnostic

infrastructure; (7) providing education in schools and through a public campaign; and (8) increasing

public information.230

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The English national plan “Living Well With Dementia” is a five-year strategy focused on improving

awareness and reducing stigma; increasing early diagnosis and intervention; and ensuring a high quality

of care.

231 The plan also encourages public awareness, early diagnosis and intervention, prevention of

chronic diseases linked to dementia and AD (such as vascular disease), and better planning for caregivers.

The plan also stresses linkages between medical and social services especially in the area of housing and

community care.

232 There is concern that primary care physicians do not diagnosis dementia and AD as

early as possible and may not have received sufficient training in assessment, so that British efforts

227 K. Rosow et al., “Countrywide Strategic Plans on Alzheimer’s Disease: Developing the Framework for the Global Battle

Against Alzheimer’s Disease,” Alzheimer's & Dementia, vol. 7 (2011), p. 618.

228 Australian Health Ministers’ Conference, National Framework for Action on Dementia 2006–2010, North Sidney, AU, May

2006,

http://www.health.gov.au/internet/main/publishing.nsf/Content/B9616604C02332D5CA25701B0075A997/$File/NFAD%20low

%20res%20Web%20Version%20Oct%2006.pdf.

229 Republique Francaise, National Plan for Alzheimer and Related Diseases 2008–2012, February 1, 2008, http://www.planalzheimer.gouv.fr/.

230 Y. Arai, A. Arai, and Y. Mizuno, “The National Dementia Strategy in Japan,” Global Journal of Geriatric Psychiatry, vol. 25

(2010), pp. 896–899.

231 S. Banerjee, “Living Well with Dementia-Development of the National Dementia Strategy for England,” Global Journal of

Geriatric Psychiatry, vol. 25 (2010), pp. 917–922.

232 Ibid.

91
include enhanced provider training. In addition, the UK is focusing on improving home care, developing

quality assessment and treatment, and supporting caregivers.

Northern Ireland, Scotland, and Wales have their own regional plans. Northern Ireland’s plan focuses on

preventing disease, and delaying the onset of the most serious symptoms, raising awareness, improving

initial assessment and diagnosis, and supporting patients and their families across the spectrum of care.

233

Scotland’s National Dementia Strategy focuses on developing common standards of care for dementia;

improved provider knowledge and skills; advancing early and accurate diagnosis; upgrading the response

to behavioral and psychological problems; integrating care pathways; supporting research through a

patient registry; and developing a specialized workforce, such as “specialist dementia nurse.” An

additional initiative is dedicating some of lottery revenues for programs that help dementia patients and

their caregivers.234

Wales prioritizes integrated and comprehensive services and reduction of stigma.

235 This is seen in four

priority areas: improved services by integrating health, social services, and other programs; early and

accurate diagnosis; increased access to information and support for caregivers and patients; research; and

additional training for health care providers. The Welsh plan includes employing a new type of health

care professional, specialized dementia clinical co-coordinators, to help with access and integration of

care.

!%&#'( "#!#'$

The U.S. National Plan identifies the following goals: increasing research for prevention and early

diagnosis; enhancing care quality; supporting patients and caregivers; increasing public awareness and

engagement. Within each of these goals there are multiple objectives. In the area of treatment, the U.S.

National Plan identifies building a skilled workforce; ensuring accurate and timely diagnosis; increasing

education for patients and families; identifying care guidelines across all settings; exploring the

effectiveness of new care models; ensuring effective and safe care transitions; advancing coordinated and

integrated treatment; improving outcomes for those at higher risk of the disease, including ethnic minority

populations; and global coordination.

236 The plan also provides an inventory of all federal programs that

affect dementias and AD and a timeline to achieve different goals.

233 Department of Health, Social Services, and Public Safety, Improving Dementia Services in Northern Ireland, November 2011,

http://www.dhsspsni.gov.uk/improving-dementia-services-in-northern-ireland-a-regional-strategy-november-2011.pdf.

234 The Scottish Government, Scotland’s National Dementia Strategy, June 2011,

http://www.scotland.gov.uk/Resource/Doc/350341/0117259.pdf.

235 See National Dementia Vision for Wales: Dementia Supporting Communities,

http://wales.gov.uk/docs/dhss/publications/110302dementiaen.pdf.

236 Department of Health and Human Services, National Plan to Address Alzheimer’s Disease, May 12, 2012 (last updated),

http://aspe.hhs.gov/daltcp/napa/NatlPlan.shtml.

92
+*&!$,%()'#(!-"

The Committee would like to thank everyone who had a role in putting this report together. Committee

Staff Director Chad Metzler and staffers Cara Goldstein, Sarah Levin, Joy McGlaun, and Anne

Montgomery, were instrumental in fashioning this project, while Carissa Lewis and Zach Tretow made

the final report preparation a swift and efficient process. Once again the minority staff was a pleasure to

collaborate with, and Minority Staff Director Michael Basset and Alicia Hennie had valuable insights

from the very beginning. This report would not have been possible, however, without the hard work and

assistance of the Congressional Research Service. Kirsten Colello and her team helped the committee

shape our study goals and provided valuable research assistance. Judith Glassgold, Elayne J. Heisler, and

Tiaji Salaam-Blyther once again proved why CRS is such a valued part of the legislative branch. We

would also like to thank the Alzheimer’s Association and USAgainstAlzheimer’s whose comments

improved this report in many ways and whose advocacy on this issue is helping to bring hope to millions.

93