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CANADA November 2016

DEMENTIA IN CANADA: A National Strategy for Dementia-friendly Communities

Standing Senate Committee on Social Affairs, Science and Technology

The Honourable Kelvin Kenneth Ogilvie, Chair

The Honourable Art Eggleton, P.C., Deputy Chair SBK>QB SK>Q

CANADA

SBK>QB SK>Q

CANADA

For more information please contact us:

by email: [email protected] toll-free: 1-800-267-7362 by mail: The Standing Senate Committee on Social Affairs, Science and Technology Senate of Canada, Ottawa, Ontario, Canada, K1A 0A4

This report can be downloaded at: www.senate-senat.ca/social.asp

Ce rapport est également offert en français Table of Contents

Order of Reference...... III Members...... III

Introduction...... 1

Context...... 2 The Impact of Dementia in Canada and Worldwide...... 2

Background...... 4 1. Dementia Described...... 4 2. Economic Cost of Dementia...... 6

Current Efforts and Innovative Programs...... 7 1. In Canada...... 7 2. Global Initiatives...... 15

More Efforts and Coordination are Needed...... 16 1. Increased Investment in Research...... 16 2. Improved Public Awareness to Reduce Stigma...... 17 3. Enhanced Health Human Resources: Training and Education...... 17 4. Early and Improved Diagnosis...... 18 5. Greater Support for Informal Caregivers...... 19 6. Integration of Health Services...... 20 7. Emphasized Home and Community Care...... 21 8. Affordable Housing...... 23

The Patient Perspective...... 24

Recommendations for a National Dementia Strategy...... 26

Conclusion...... 43

APPENDIX 1: Programs and Initiatives Highlighted in this Report...... 44

APPENDIX 2: List of Recommendations...... 45

APPENDIX 3: List of Witnesses...... 50

APPENDIX 4: Briefs...... 52

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ I ]

Order of Reference Members

Extract from the Journals of the Senate The Honourable Senators who of Tuesday, February 23, 2016: participated in this study:

The Honourable Senator Ogilvie Kelvin Kenneth Ogilvie, Chair moved, seconded by the Honourable Art Eggleton, P.C., Deputy Chair Senator Patterson: Linda Frum Pana Merchant That the Standing Senate Committee on Chantal Petitclerc Social Affairs, Science and Technology Nancy Ruth be authorized to examine and report on Nancy Greene Raine the issue of dementia in our society; Judith G. Seidman Carolyn Stewart Olsen That the committee review programs and services for people with dementia, the gaps Ex Officio Members: that exist in meeting the needs of patients and their families, as well as the implications for The Honourable Senators Peter Harder, P.C. future service delivery as the population ages; (or Diane Bellemare) and Claude Carignan, P.C. (or Yonah Martin). That the committee review strategies on dementia implemented in other countries; Other Senators who have participated from time to time in the study: That the committee consider the appropriate role of the federal government The Honourable Senators Beyak, in helping Canadians with dementia; Doyle, Gagné, Marshall, Munson, Omidvar, Neufeld and Patterson. That the committee submit its final report no later than January 31, 2017, and that Parliamentary Information and Research the committee retain all powers necessary Services, Library of Parliament: to publicize its findings until 180 days after the tabling of the final report. Sonya Norris, Analyst

After debate, Senate Committees Directorate:

The question being put on the Keli Hogan, Clerk of the Committee motion, it was adopted. (until April 2016) Shaila Anwar, Clerk of the Committee Clerk of the Senate (from April 2016)

Charles Robert Debbie Larocque, Administrative Assistant (until April 2016) Tracy Amendola, Administrative Assistant (from April 2016)

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ III ]

Introduction

On February 23, 2016, the Senate adopted improve the care available to patients. Over an Order of Reference authorizing the the course of the study, the committee heard Standing Senate Committee on Social Affairs, from officials from the Canadian Institutes of Science and Technology (“the committee”) Health Research and the Public Health Agency to examine and report on the issue of of Canada as well as witnesses representing dementia in Canadian society. The committee health professional organizations; dementia held 14 meetings between March 9 and and mental health advocacy organizations; June 2, 2016 and heard from a broad range of research programs; seniors’ residential experts whose testimony addressed the nature housing groups; long-term care and palliative of dementia, the burden of the conditions both care associations; home care and caregiver at a personal and societal level, prevention groups; national dementia strategies; and, and treatment, caregiver issues, housing, finally, the Assembly of First Nations. research, as well as national strategies to

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 1 ] Context

“I can think of no other disease that I can think of no other disease has such a profound effect on loss that places such a heavy burden of function, loss of independence, on families, communities, and and the need for care. I can think societies. I can think of no other of no other disease so deeply disease where innovation, including dreaded by anyone who wants to breakthrough discoveries to develop age gracefully and with dignity. a cure, is so badly needed.”

— Margaret Chan, Director General, World Health Organization (Opening remarks at the First WHO The Impact Ministerial Conference on Global Action of Dementia against Dementia, 17 March 2015) in Canada and Worldwide

Current Projected Current Projected Number of People Affected 750,000 1.4 48 131 (2011) million million million (2031) (2015) (2050)

Annual Economic Burden (direct and indirect costs) CAD$ CAD$ US$ US$ 33 293 818 1.2 billion billion billion trillion (2015) (2040) (2015) (2030)

Direct Medical Costs CAD$ CAD$ _ _ 8.3 16.6 billion billion (2011) (2031)

[ 2 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities Canada, like most industrialized countries in Dementia is a progressive and degenerative the world, has an aging population. In 2010, condition that robs an individual, over the the first of the “baby boomers” turned course of many years, of the ability to live 65 years of age. Although the proportion of and function independently. The primary risk seniors has been increasing for decades due factor for dementia is age, and this proportion to longer life expectancy, the proportion of of individuals with dementia increases with seniors has been increasing even faster since age. That is, approximately 7% of people over 2010. According to the Canadian Institute for the age of 65 is affected, but this proportion Health Information’s Health Care in Canada, increases to 35 or 40% for individuals aged 2011: A Focus on Seniors and Aging, the older than 85 years, according to testimony proportion of the Canadian population aged offered by the Canadian Institutes of Health 65 years and older increased from 10% in Research (CIHR). As such, the number of 1986 to 14% in 2010. The report projects that Canadians living with dementia is expected between 2011 and 2031, during which time to grow along with the proportion of the all baby boomers will turn 65, the proportion population aged 65 years and older. will continue to rise to almost 25%.1 This means that within the next 15 years, one in Persons affected by dementia can continue four Canadians will be over the age of 65. to live independently for some time; however, as their condition progresses, According to data from Statistics Canada, they require increasing levels of care, that projection is being realized. Population first within their home but usually ending estimates for July 2015 indicated that “for within a long-term care setting. the first time, the number of persons aged 65 years or older exceeded the number of It was within this context — increasing children aged 0-14 years.”2 The proportion numbers of Canadians affected with dementia of children aged 0-14 years was estimated to requiring considerable health and social be 16.0% while seniors aged over 65 years service support — that the committee was 16.1% of the population. This proportion undertook this study to determine the actions varies somewhat among jurisdictions, with that should be taken to most effectively the Atlantic provinces having the highest and efficiently meet this challenge. percentage of residents aged 65 years and older; at 19%, New Brunswick has the highest proportion of residents aged 65 and older of all the provinces.

1 Canadian Institute for Health Information, “Health Care in Canada, 2011: A Focus on Seniors and Aging,” 2011.

2 Statistics Canada, “Canada’s population estimates: Age and sex, July 1, 2015,” The Daily, 29 September 2015.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 3 ] Background

and cell death. This form of dementia 1. Dementia accounts for 15-20% of dementia cases. Described Some individuals may be afflicted with both vascular dementia and Alzheimer’s disease.

Witnesses explained that dementia is not a Other types of dementia include Lewy body normal part of aging, although aging is a dementia in which protein deposits called major risk factor for developing dementia. Lewy bodies form in the areas of the brain Rather, it is a slow and progressive condition used for movement and thinking. This type of that involves impairment in memory and dementia, which makes up 5-15% of dementia other cognitive functions including mood, cases, is associated with Parkinson’s disease speech, behaviour and the ability to perform and can also occur along with Alzheimer’s basic daily activities. There are a number disease. Frontotemporal dementia accounts of types of dementia, all characterized by for 2-5% of dementia cases and usually a similar collection of symptoms, but all occurs in individuals younger than 65 years progress over the course of several years. of age. This form of dementia affects the front and side lobes of the brain, areas primarily associated with speech and behaviours. A. TYPES OF DEMENTIA The most common type of dementia is Because the type of dementia is not Alzheimer’s Disease, which accounts for always specifically diagnosed and because about 60-70% of all dementia cases. A small Alzheimer’s disease makes up the majority proportion of individuals with Alzheimer’s of dementia cases, the term identifying these disease, less than 5%, develops the disease conditions that is often used in the literature is earlier in life, on average around the age “Alzheimer’s disease and related dementias.” of 50 years. This condition is called early- onset Alzheimer’s disease. Late-onset Alzheimer’s disease accounts for about B. SYMPTOMS, DIAGNOSIS AND 95% of Alzheimer’s disease cases and is PROGRESSION OF DEMENTIA diagnosed after the age of 65 years. According Dementia causes the slow and to testimony from the Alzheimer Society, progressive deterioration and loss of women account for more Alzheimer’s disease brain function. The Alzheimer Society cases than men, making up about 72% of all of Canada (ASC) has developed a list of late-onset Alzheimer’s disease diagnoses. 10 warning signs3 that is used by health professionals across the country: Vascular dementia is the second most common type and it can be caused by 1. memory loss affecting day- strokes that impair blood flow to the brain, to-day abilities; which in turn results in oxygen deprivation 2. difficulties performing familiar tasks;

3 Links relating to programs and initiatives that appear in bold type are listed in Appendix 1.

[ 4 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities 3. language difficulties; Once diagnosed, individuals affected by dementia can continue to live independently 4. disorientation in time and space; during the early stages of their disease, and 5. impaired judgement; with the appropriate support can continue 6. problems with abstract thinking; to live in their home until the later stages. Over the course of many years, individuals 7. misplacing things; with dementia will no longer be able to live 8. changes in mood and behaviour; at home as they become unable to perform the activities of daily living such as dressing, 9. changes in personality; and, eating, toileting and bathing and will often 10. loss of initiative. display behaviours that caregivers may find difficult to address. In the last stage The ASC emphasizes that anyone concerned of dementia, individuals lose the ability to about themselves or a loved one with convey when they are in pain, as well as respect to the signs listed above should see to walk, talk, chew and even swallow. a doctor. It is also important to note that factors other than dementia may produce one or more of these symptoms, such C. PREVENTION OR DELAY as medication, depression and stress. OF DEMENTIA The cause or causes for the majority of Following the elimination of other causes dementia cases are not known. Genetics such as those listed above, usually by a family and heritability of the condition do not physician, through physical examinations, appear to play a major role in this regard. blood tests, medical history reviews and While some genes have been identified that mental health assessments, screening for are associated with dementia, there is a dementia involves assessment of cognitive multitude of interacting factors that appear ability, or mental acuity. This type of test to increase or decrease a person’s chances assesses the ability to recall words, draw of developing the condition. These factors simple shapes, spell dictated words, answer also affect the age of onset and the rate of questions, make simple calculations, etc. If progression of dementia. While genetics and dementia is suspected, the physician may refer age are risk factors that cannot be modified, the patient to a specialist, such as a geriatrician many other risk factors are within the or neurologist, who will likely conduct control, to some degree, of each individual. additional mental acuity questionnaires as well as order various types of imaging such In this regard, several lifestyle factors have as X-rays, electroencephalograms (EEGs), been identified as being protective against computerized tomography (CT) scans, developing dementia, or to delaying its magnetic resonance imaging (MRI) scans, onset or speed at which it progresses. These and positron emission tomography (PET) factors include physical exercise, a healthy scans, to try to isolate the affected areas of diet, proper management of chronic disease, the brain. Research using some of these types moderate alcohol consumption, not smoking, of neuroimaging techniques has shown that intellectual stimulation and social engagement. physiological evidence of damage can be seen As well, avoiding brain injury, stress and up to 25 years before the onset of symptoms. depression, to the extent possible, can also delay the onset or progression of dementia.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 5 ] D. TREATMENT AND SUPPORT A. CANADA Currently there are no effective drugs to The Alzheimer Society of Canada’s (ASC) cure or to stop the progression of dementia. most recent estimate suggests that 747,000 Some dementias present specific symptoms people were suffering from dementia in 2011. that can be treated with drugs but they do not This number is expected to almost double in reverse, slow down or stop the neurological the next 15 years to 1.4 million, alongside the damage within the brain. Rather, various non- doubling of the number of people over the age pharmaceutical approaches have been and of 65 years. Accordingly, the Public Health continue to be developed that aim to stimulate Agency of Canada (PHAC) told the committee the brain, provoke memories and induce that the direct health costs associated with calmness and peacefulness. Many of these the care of individuals with dementia is methods are described later in this report. expected to also double from $8.3 billion in 2011 to $16.6 billion annually by 2031. The ASC informed the committee that the burden on the Canadian economy would increase 2. Economic from $33 billion annually to $293 billion Cost of annually by 2040 when both direct medical and indirect costs associated with social Dementia services and lost earnings of caregivers and dementia sufferers are combined.

As described above, most types of dementia are age-related. As a result, countries around B. INTERNATIONALLY the world will experience a surge in the Alzheimer’s disease International stated that number of individuals affected by dementia dementia affects 48 million people worldwide as the proportion of the population aged currently and this number is expected to rise 65 years and older continues to grow for to 131 million by 2050. While the number the next 15 to 20 years. Chris Simpson, of dementia cases is expected to double in past president of the Canadian Medical Canada and other high-income countries by Association, provided some information to 2031, low- to middle-income countries are the committee on rising healthcare costs as a expected to see greater increases. Globally, result of the increasing proportion of people the economic cost of dementia in 2015 was over 65 years of age. Currently, just one-sixth US$818 billion, and this cost is expected of the population is over 65 years of age and to soon reach US$1.0 trillion annually. The this group accounts for half of public health World Health Organization indicated that the expenditures. Within 20 years, more than economic burden would reach US$1.2 trillion one in four Canadians will be over 65 years by 2030. These amounts include direct of age and 62% of the healthcare budget medical costs, direct social sector costs as well will be dedicated to the care of seniors. as indirect costs associated with informal care.

[ 6 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities Current Efforts and Innovative Programs

Yves Joanette, Scientific Director of CIHR’s 1. In Canada Institute of Aging stated that the research component of the NDRPP is the CIHR Dementia Research Strategy, while the Over the course of the committee’s Institute of Aging also funds a number of study, members heard of the considerable other related initiatives.6 He indicated that amount of work on dementia currently the federal government had invested over underway across the country and by a $183 million in dementia research over the multitude of stakeholders. Below is an past five years, including $41 million in overview of the many projects, programs fiscal year 2014-2015. The strategy facilitates and technologies that were discussed. collaboration among researchers, promotes the sharing of research platforms and the dissemination of results in three areas of A. FEDERAL INITIATIVES research, or themes: dementia prevention; In September 2014, the Minister of Health improving diagnosis as well as treatment to announced the launch of the National delay the onset or stop the progression of Dementia Research and Prevention dementia, and improving the quality of life for Plan (NDRPP)4 in response to the Canadians afflicted with dementia as well as December 2013 G8 Dementia Summit their caregivers. He further detailed that the Declaration.5 The aspirational goal set at CIHR Dementia Research Strategy includes that summit was to find a cure or disease- two components: domestic and international. modifying treatment for dementia by 2025. Rodney Ghali, Director General at The domestic component is the Canadian PHAC’s Centre for Chronic Disease and Consortium on Neurodegeneration in Prevention, told the committee that the Aging (CCNA). The committee was told NDRPP provides the foundation on which that CIHR and its partners will invest the federal government’s collaboration $32 million over five years in the CCNA. with other governmental stakeholders can Partners include national, provincial and help to make dementia a public health industry organizations.7 This consortium was issue and to ensure that dementia remains launched alongside the NDRPP and comprises a national and international priority. 350 researchers, working among 20 teams within the three themes listed above.8 There are eight national platforms within the CCNA

4 Government of Canada, National Dementia Research and Prevention Plan. 2014.

5 Government of the United Kingdom, “G8 Dementia Summit Declaration,” 11 December 2013.

6 Canadian Institutes of Health Research (CIHR), IA Initiatives.

7 CIHR, CCNA, Partner Organizations.

8 CIHR, Canadian Consortium on Neurodegeneration in Aging (CCNA).

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 7 ] to “facilitate research and create opportunities and Parkinson’s disease. The expectation for collaboration by pooling and drawing on is to include these four conditions within big data,” such as a “brain bank” and a cohort PHAC’s existing Canadian Chronic Disease of volunteers suffering from dementia who Surveillance System10 by spring 2017. may wish to participate in ongoing research.9 Finally, the CCNA incorporates four cross- In terms of quality of life, members were told cutting programs that must be applied to all that PHAC has a role in identifying the risk research teams; ethical, legal and social issues, factors for developing dementia and to help training and capacity building, knowledge mitigate the impact of these risk factors. For translation and exchange, and women, gender, example, research is showing that many of sex and dementia. This structure ensures that the risk factors for developing several other issues such as gender disparity in dementia age-related chronic conditions are likely also are incorporated into all areas of dementia associated with the development of age- research funded through CIHR’s CCNA. related dementias. In this regard, conditions such as Type 2 diabetes, cardiovascular The international component of CIHR’s disease, hypertension and some cancers, Dementia Research Strategy allows to which many lifestyle behaviours have Canadian researchers to collaborate been linked, also appear to be associated with their international colleagues. For with a higher risk of developing dementia. example, the European Union Joint Poor diet, sedentary lifestyle, smoking and Programme — Neurodegenerative alcohol abuse appear to increase the risk of Disease Research supports multinational developing these chronic diseases as well as teams researching neurodegenerative dementia, and PHAC has a role in promoting conditions including Alzheimer’s and the lifestyle behaviours that can help to related dementias. Canada is one of contribute to healthy aging. While PHAC 30 countries involved in this joint venture. did not indicate any ongoing efforts in this regard, members were told that the agency is While PHAC revealed that the research assessing opportunities in this area. However, component of the NDRPP is the central pillar the committee was told of collaborations of that plan, committee members were told between PHAC and organizations such as the that PHAC has a responsibility to carry out Canadian Centre for Aging and Brain Health activities in three areas, namely surveillance Innovation. Through these collaborations, and monitoring, improving quality of life the federal government is investing in the and, promoting awareness to reduce stigma. development of innovative technologies aimed at optimizing the quality of life of individuals In terms of surveillance and monitoring of with dementia by helping them to maintain dementia, PHAC has invested $50 million their independence for as long as possible. in a four-year, national population health study co-led by the Neurological Health Finally, in terms of promoting awareness to Charities of Canada. As a result of this study, reduce stigma, the committee was told of PHAC is now working with provinces and the initiative Dementia Friends Canada, territories to establish surveillance of dementia which was launched in June 2015 and is a along with epilepsy, multiple sclerosis collaborative effort of the federal government

9 CIHR, CCNA, National Platforms.

10 Public Health Agency of Canada (PHAC), Surveillance.

[ 8 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities and the Alzheimer Society of Canada. The CCNA. Research has shown that the rate initiative is a digitally based awareness of dementia in the First Nation population program aimed at providing Canadians with is 34% higher than in the non-First Nation information about dementia and how each of population and that the age of onset is us can be supportive of affected individuals. about 10 years younger than it is in the non- Indigenous population. As well, research has established that, in contrast to the B. RESEARCH PROGRAMS general population, the rate of dementia Research was not a primary focus of the among men in Aboriginal communities committee’s study because the federal NDRPP is higher than it is among women. already places a strong emphasis in this area. CIHR has implemented the CCNA which Outside the CCNA, members heard about has a comprehensive and integrated approach an investment of $123.5 million to establish to dementia research. The CCNA was cited the Canadian Centre for Aging and Brain repeatedly by witnesses as an important and Health Innovation within Baycrest Health innovative research funding model that can Sciences in Toronto. PHAC’s contribution help to propel the understanding of dementia to this investment was $42 million. The and lead to effective treatments and models of centre is working on such innovations as care. As such it is important to acknowledge the Virtual Brain, which would provide some of the important research that is being an integrated computer model on which conducted in Canada, largely within the team experimental drugs could be tested, as well as structure of the CCNA. Additional CCNA- telehomecare11, which would improve access funded research has already gone on to to geriatric care for homebound seniors. become practice within some communities and will be described further below. C. CARE AND CAREGIVER SUPPORT The CCNA funds research teams to look Throughout the study, witnesses emphasized at different models of primary care for the need for early diagnosis of dementia. dementia patients. Primary care is essentially However, they also acknowledged the the healthcare provided in the community, difficulty of encouraging early diagnosis traditionally by a general practitioner but when there is currently no cure for dementia can incorporate other health practitioners and little treatment available to slow the as well. For example, health teams may progression of the condition. Nevertheless, be led by nurses or nurse practitioners, or several witnesses stated that early diagnosis there may be initial patient screening by is important because there is evidence to a geriatric assessor. The committee was suggest that progression of the disease can told that research into different models be delayed with lifestyle changes. In this of primary care is necessary in order to regard, eating well, keeping physically and effectively meet the individual needs of socially active and engaging in activities different communities and populations. that are intellectually stimulating are all believed to extend the early phase of Dementia research specific to the Aboriginal dementia during which an individual can population is another area of funding from maintain an independent lifestyle.

11 Telehomecare refers to the delivery of telehealth services within a patient’s home rather than within a healthcare facility.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 9 ] As mentioned above, one of the cross-cutting in the 1990s and quickly spread to several programs that supports CCNA-funded European countries. Ken McGeorge of the research is “Knowledge Translation and Alzheimer Society New Brunswick informed Exchange.” This term refers to facilitating the committee that eight Memory Cafés the dissemination of research results and to have been launched in that province. The translating research results into practice. In initiative involves providing a safe, friendly this regard, the committee was told about environment, often a church basement or a number of new technologies, programs, community hall, where people can gather on a diagnostic tools, primary care models, regular basis. While the gathering is informal, etc. that were held up by witnesses as there is some structure and planning involved. examples of best practices across Canada. For example, it includes a set start time when attendees hear from an invited lecturer or Recent research has contributed to expanding watch an informative video. Following a social the screening and diagnostic tools available break, there may be a question and answer to practitioners. One CCNA-funded research period for discussion of issues of interest to project was highlighted as an advance in dementia sufferers or their caregivers. This screening tools for assessing individuals format has proven to be popular and provides suspected of having dementia. The Montreal individuals with a supportive environment for Cognitive Assessment tool, or MoCA, is a social engagement that is free from stigma. questionnaire that helps health practitioners assess short-term memory, language, ability Several chapters of the ASC also offer the to focus, delayed recall, visuospatial ability Minds in Motion program. This program by drawing, and ability to name pictures of offers physical activity, intellectual stimulation common items. William Reichman, from and social engagement for people with early or Baycrest Health Services, described a self- mid-stage dementia along with their informal assessment tool called the Cogniciti Brain caregiver, or care partner. The program Health Assessment that measures brain usually consists of two-hour sessions offered health based on age and education level. once a week over an eight-week period.

Without follow-up support, a diagnosis Access to healthcare in rural and remote of dementia can leave a person feeling communities, including Aboriginal very isolated and can lead to depression. communities, is a well-known challenge, Several witnesses endorsed the Alzheimer and access to dementia diagnosis and Society of Canada‘s (ASC) First Link ® follow-up services is no exception. The early intervention program. This referral committee was told about the Rural and program is offered by several ASC chapters Remote Memory Clinic in Saskatoon, across the country and it provides recently Saskatchewan developed by Rural diagnosed dementia individuals and their Dementia Action Research, or RaDAR, families with information, including ASC’s which facilitates a one-day memory First Steps for patients and families, and assessment clinic for people in rural and connects them to a variety of support services remote communities. For individuals within their respective communities. diagnosed with dementia, follow-up services consist of telehealth clinics, which reduce Memory Cafés are for people suffering from travel distances considerably. This model dementia and their caregivers. The Memory received CCNA funding and successfully Café concept was born in the Netherlands demonstrated that the follow-up care

[ 10 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities offered through telehealth was just as increased since the program’s inception and effective and efficient as in-person care. remains based upon 1997 population statistics.

With respect to First Nation communities, Members also heard about an innovative Health Canada’s First Nations and Inuit approach to dementia care within a First Health Branch has delivered the Home and Nation community. Isadore Day, National Community Care Program over the past Health Portfolio Holder and Assembly of ten years. This program aims to work with First Nations Regional Chief for Ontario these communities to develop appropriate with the Assembly of First Nations, home and community care services. The described the JOY Program, joining old model of home care delivery can vary from and young, where elders spend time in the one community to the next across Canada. day care community alongside children. Norma Rabbitskin, a Senior Health Nurse Structured programming helps keep skills with Sturgeon Lake First Nation Health elevated for seniors and maintains social Centre, explained that home care services cohesion. This program uses community can be delivered by tribal council, in which resources, looks at the life-long learning case it comprises only home nursing care. continuum and is a culturally based model. Alternatively, it can be delivered at the community level and include home nursing For the majority of individuals suffering assessment, case management and personal from dementia in Canada, primary care care including personal aides. However, takes place within a number of healthcare members were told that the program requires silos, which involves different specialists additional resources as its budget has not been attending to a patient’s specific ailments or

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 11 ] conditions. The committee was told that a that family caregivers provide an average recently developed model of primary care of 8.2 hours of support a day. As a result, memory clinics in Ontario, called Linda Lee caregiver burnout is the principal reason clinics, aims to remove these silos. These for dementia patients being hospitalized clinics use a collaborative approach where or placed prematurely in long-term care the primary care team is linked to specialists facilities. The committee was told of the in geriatric medicine and geriatric psychiatry. C.A.R.E. tool which is a questionnaire There are over 70 of these clinics across that helps to identify the needs of family Ontario. Similarly, members were told of caregivers so that burnout can be avoided. the GEM Plus program in Ontario. As part of Ontario’s Aging at Home Strategy, the Informal caregivers sacrifice their time, their program integrates geriatric nurses within social life, their jobs and often their good hospital emergency departments. Finally, health to provide care to their loved ones and New Brunswick’s Home First Strategy several witnesses noted that 80% of informal has attempted to remove some of the silos caregivers are women. One way in which and offers a range of supports in order to informal caregivers can get the respite they keep seniors in their own homes as long as require in order to avoid burnout is through possible and discourages hospital admissions. increased access to home care services. The committee was told that the demand Dementia sufferers are often able to stay in for home care had increased 55% in just their home, with the proper supports, until the past seven years in Canada, with few if the later stages of the condition, and as much any new resources over that same period. as 90% of individuals with dementia live within the community. While maintaining Although members heard only anecdotally of independence in the home is usually the programs that provide respite to caregivers best option, this situation can place a lot of by offering Adult Day programs to dementia responsibility and stress on family and friends sufferers, they did hear testimony regarding to provide informal care. It also presents various technologies available that can a challenge in terms of providing formal help to reduce some of the burden. Sensor home care services. Dementia in its early technology in the form of wearable devices stages can still require vigilance on the part or motion sensors in the home can be used of informal caregivers who must be alert to alert a caregiver or emergency response to memory lapses that can create safety or to unusual or abnormal situations. Wearable security concerns. Examples include leaving GPS technology can be used for individuals the stove on, water running or doors unlocked. who are at risk of wandering. Medication The role of informal caregivers also includes reminder prompters can be programmed providing reminders about dressing properly, into watches, TVs or phones to help eating meals and keeping appointments. caregivers adhere to dosing schedules.

As the disease progresses, changes in behaviour and personality can be particularly D. HOUSING AND difficult for caregivers and can, at times, COMMUNITY MODELS present a danger. Many dementia sufferers As dementia progresses, affected individuals exhibit a wandering tendency at this stage often move into assisted-living facilities. as well, requiring the caregiver to always This move may be by choice in order to ease be on the alert. The committee was told the caregiving responsibilities of informal

[ 12 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities caregivers, or it might be because there be tailored for a person-centred approach. are no long-term care options available. The committee was told about programs Assisted-living facilities can also be referred that have been implemented that aim to to as seniors housing, retirement residences improve overall quality of life. In this regard, or retirement communities. As well, some members were intrigued by the Butterfly seniors already living in this type of facility model. This approach was created in the U.K. may develop dementia during their stay. by David Sheard, the founder of Dementia Care Matters. It strives to make the living Assisted-living residences may house as environment for dementia sufferers as familiar few as four or as many as several hundred as possible and to make it feel more like home residents. However, most provinces do not rather than an institution. It is based on the subsidize these facilities so individuals who concept that “feelings matter most” and that live in these facilities are responsible for although a resident may not remember the the cost, which can be as high as $5,000 per people around them or recent events, they month. Witnesses testified that as much will respond to their environment because of as 70% of the residents in assisted-living how it makes them feel. Irene Martin-Lindsay, residences have various stages of dementia. Executive Director of Alberta Seniors These facilities are responding to the Communities & Housing Association, stated increasing number of dementia cases by that this approach allows residents to thrive creating secure memory care units within as they become more sociable and active and existing assisted-living accommodations. medications are sometimes reduced as a result. Memory care units are areas of a retirement home that have been separated from the Several witnesses mentioned the dementia rest of the building by the use of passcode village model developed in the Netherlands. protected access. This security limits Dementia villages are entire communities the entry of non-dementia residents and specifically designed for individuals others into the units and prevents residents with dementia and their caregivers. The with dementia from wandering away and communities provide a safe and secure becoming lost. These memory care units environment while encouraging full social remain under the management of the engagement and a high quality of life. assisted-living facility and the cost is the The dementia village concept includes responsibility of the resident. This approach grouping residents with similar interests and addresses the long wait times for long-term backgrounds and creates an environment to care beds, which can be in the order of suit each of these groupings. The buildings months to a few years. It also provides an that make up each village are surrounded by alternative to moving, which can be very a wall, and all pathways lead back to a central disruptive and can potentially accelerate area. This approach encourages residents to decline in dementia patients, and also allows remain active, both physically and mentally. resident couples, who might otherwise have to be separated, to remain close. Long-term care includes both privately and publicly run facilities, but all are subsidized Members were told that one of the benefits of by provincial or territorial governments. caring for individuals with dementia within As such, long-term care is not as costly to assisted-living homes, both in the memory residents as assisted living but residents must care units and within the main facility, is that still assume some costs if they are able to care is not institutionalized but rather can pay. Long-term care offers 24 hour a day

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 13 ] medical and supportive care. The committee Start the conversation about end-of-life was told that because seniors with dementia care awareness campaign, which came out are now staying in their homes or retirement of the Advance Care Planning in Canada community longer than ever before, they project. This campaign provides information are now coming in to long-term care at a and assistance on issues such as substitute later stage of the disease than has been the decision makers and personal directives. case in the past and therefore their needs are greater. Candace Chartier, Chief Executive In addition to the innovative practices Officer of the Ontario Long Term Care evolving among seniors’ residences and Association, stated that 62% of long-term long-term care facilities across Canada, other residents have dementia but emphasized that initiatives have taken on a larger scope. In innovative practices are also being adopted this regard, the committee found the concept in some long-term care facilities, despite of dementia-friendly communities to be the institutional setting that is restricted by very compelling. This approach refers to regulations. These practices include doll communities at large that are inviting and therapy which provides a patient with a doll supportive of individuals with dementia as to care for, the ipod (music) program, and well as their caregivers. One element of this pet therapy. The committee was told that approach involves reducing or eliminating programs like these can reduce the stress and the stigma associated with dementia through anxiety in dementia patients responsible for increased awareness and education campaigns producing behaviour that can increase the as well as the uptake of specific initiatives by chance of harm to themselves or others. As a business operators and other service providers result these programs have a positive influence to deliver dementia-friendly interactions. on behaviours and potentially reduce the use of medications, such as antipsychotics One initiative of dementia-friendly and benzodiazenpines (eg., valium) that are communities is the Blue Umbrella program. used to reduce aggression and agitation. This program allows businesses to place a blue umbrella symbol in their window to signal Integrating appropriate palliative and that their employees have been provided with end-of-life care has become an important training so that they can provide dementia- component of the care offered, regardless friendly service. Individuals with dementia of where dementia patients live out the last can similarly wear a blue umbrella pin on their of their days. Louise Hanvey of the Canadian clothing so that employees can easily identify Hospice Palliative Care Association noted them. The specific approach would depend on that the federal government provided the the nature of the business. A cashier may be association with funding to create a national trained on how to offer help to a customer who framework for integrating a palliative is having trouble counting money. A clerk in a approach to care across Canada called busy store may realize that a customer should The Way Forward. She explained that be re-directed to a quiet area. A salesperson the approach focuses on meeting the full may helpfully make suggestions to someone range of needs of both individuals and their having difficulty naming an item that they families, including physical, psychosocial and are looking for. Regardless of the approach spiritual needs and spans all stages of illness, taken, the goal is the same: create a safe not just the end of life. Part of the palliative and inviting environment in which dementia approach involves advance care planning sufferers and their caregivers feel welcome. and members were told of the Speak Up:

[ 14 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities 2. Global Initiatives

Shekhar Saxena from the World Health Organization and Marc Wortmann of Alzheimer’s Disease International provided some details to the committee about global efforts to address the challenge of rising dementia cases. The World Dementia Council, currently chaired by CIHR’s Yves Joanette, was recently created as a result of a commitment made at the 2013 G8 Dementia Summit. This entity aims to help make dementia a public health priority in countries across the world and to advocate for innovation and development of treatment options for dementia.

The committee learned that the World Health Organization is creating a “Global Dementia Observatory” projected to be functional later this year, for the collection and dissemination of dementia data and that Canada has been chosen to be one of the pilot countries. As well, the World Health Organization is developing an online platform called “iSupport” designed to provide information and support to people with dementia as well as their caregivers.

Alzheimer’s Disease International has created a virtual Alzheimer’s University that provides training to people who work in Alzheimer associations and societies around the world. The program offers basic training for newly created Alzheimer associations as well as more advanced training in public policy.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 15 ] More Efforts and Coordination are Needed

These diseases have benefitted from greater 1. Increased research investment than dementia research Investment is currently receiving. While research on Alzheimer’s disease and related dementia in Research received $41.1 million in funding from CIHR in 2014-15, cancer, heart disease and stroke and HIV/AIDS received $150 million, As mentioned earlier, CIHR has placed $96.2 million and $49.2 million, respectively. significant focus on dementia research. CIHR’s Canadian Consortium on Members were told by Ronald Petersen, Neurodegeneration in Aging (CCNA) Director of the Mayo Clinic’s Alzheimer’s was lauded by several witnesses who Disease Research Center in Rochester, appeared during this study. As noted earlier, Minnesota that dementia research funding as much as 72% of dementia sufferers in G8 countries should be 1.0% of the cost are women. The reason, or reasons, for of dementia care. Direct medical costs this are not yet known. Whether this is a are currently in the order of $10 billion result of women living longer than men, annually for dementia care in Canada and, or a consequence of hormonal changes as mentioned earlier, the federal government at menopause, lifestyle differences, a invested $41 million in dementia research combination of these issues or something in 2014-2015. An investment of 1% of else entirely, has yet to be determined. direct medical costs would translate to a Committee members are pleased that CIHR research budget of about $100 million, more has included a requirement that a gender than twice the current CIHR investment. lens must be applied to all CCNA-funded The committee was told that this level of research and expect that such an approach investment would likely permit researchers to will help to quickly resolve this mystery. find a disease-modifying treatment by 2025.

However, some witnesses questioned whether sufficient resources have been invested in dementia research given the number of people affected and the economic burden it will produce in the coming years. Lynn Posluns of the Women’s Brain Health Initiative noted that dementia is now the third leading cause of death in Canada and is rising while the death rates for cancer, heart disease and stroke and HIV/AIDS have been declining.

[ 16 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities 2. Improved Public that need to be strengthened to effectively Awareness to support individuals with dementia and their caregivers, as discussed below. Reduce Stigma Improved public awareness will also have an effect on public policy in general so “We must broaden society’s that existing community services become perspective of the lived experience adapted to the needs of dementia sufferers. of Alzheimer’s beyond the last For example, the committee was told that few years of its course.” public transportation that is made available to the disabled is sometimes restricted to — Lynn Posluns, President, the physically disabled, rather than the Women’s Brain Health Initiative cognitively disabled. Implementation of dementia-friendly policies will be more Witnesses frequently emphasized the hope inclusive of the needs of dementia sufferers. that dementia-friendly environments can be achieved. However, it was also frequently noted that there is significant stigma attached to dementia and that in order to 3. Enhanced achieve dementia-friendly neighbourhoods, Health Human communities, housing, etc., much more work needs to be done to reduce that Resources: stigma. Reducing the stigma starts with a Training and greater emphasis on public awareness. Education Although members heard from the Public Health Agency of Canada that the federal government has a responsibility in this area, “Our current healthcare workforce the launch of the Dementia Friends Canada is not prepared to provide website, without any public awareness dementia care, and I don’t think the component to direct Canadians to it, is not curriculum in the majority of those sufficient. Similarly, the Alzheimer Society professional groups is there.” of Canada’s Still Here Campaign does not appear to have captured the attention needed — Bonnie Schroeder, Executive Director, to reduce the stigma around dementia. Canadian Coalition for Seniors’ Mental Health

Currently, the level of stigma attached Members were told that the nursing to dementia results in a reluctance by curriculum is regularly modified to keep individuals to seek additional information. pace with the needs and demands of the As such, considerably more effort needs to population. Carolyn Pullen, a director with be dedicated to informing the public of the the Canadian Nurses Association, emphasized practical realities as well as to dispelling that the first clinical rotation for student fears and anxiety. However, efforts to nurses is usually a long-term care setting, improve public awareness and reduce which gives them early exposure to the stigma should not be initiated in isolation unique health needs of this population, the but rather alongside the many other issues majority of which suffers from dementia.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 17 ] With respect to physician training however, this disparity has been largely addressed in members were surprised to hear that there Ontario, the problem has not been addressed is little focus in medical curricula about in other provinces. Members were told that as geriatric medicine in general or dementia a result, it is difficult to attract new physicians in particular. The committee was told to the field of geriatrics, which leaves Canada that there is poor integration of senior poorly equipped to provide specialized care in medical schools and that there is a geriatric care to its aging population. disconnect between the curriculum content and society’s needs. On one hand, members heard that all medical students do a clinical rotation in paediatrics, despite the statistic 4. Early and that only 2% of physicians will enter that Improved specialty. On the other hand, there is no requirement to do a rotation in geriatrics even Diagnosis though most physicians will provide care to seniors at some point in their careers. Members heard that estimates suggest that There has been some focus on providing only 50% of dementia cases in the community training in the area of geriatrics to newly have been diagnosed. While stigma and graduated physicians who begin their fear of the diagnosis partially accounts for residency programs. Francine Lemire, this low rate, some witnesses suggested Executive Director of the College of Family that the medical community could be more Physicians of Canada, indicated that proactive in assessing patients as they age. the two-year family medicine residency In this regard, the committee heard that training requires that residents acquire core regular screening of mental acuity should competencies in the care of the elderly be considered. Other witnesses noted that including the diagnosis and management of dementia diagnosis often takes too long as dementia. Similarly, physicians entering the family physicians refer them to specialists, psychiatry residency program must undertake which frequently entails a long wait for an a geriatric psychiatry rotation. However, the appointment. Other witnesses mentioned the residency program for internal medicine12 need to ensure validation of the screening does not require a geriatric rotation. and diagnostic tools that are available to both physicians and individuals for self- In addition to the lack of required geriatric screening because there are many tests and training, the committee was also told that questionnaires available that have not been there has been a financial disincentive to enter validated and could provide false results. that specialty. Physicians entering internal medicine, a three-year residency program, A number of witnesses emphasized the tend to receive higher compensation than observation that physical evidence of damage those doctors who go on to enter the geriatric in the brain can be identified many years specialty which requires an additional two- before the onset of dementia symptoms year residency after the internal medicine using neuroimaging technology. While program. While further testimony revealed that individuals may question the value of

12 Internists are physicians who care for adults with complex multi-system diseases. (Canadian Society of Internal Medicine (CSIM), About CSIM.)

[ 18 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities knowing this information decades before The progression of dementia spans many the inevitable decline into dementia, it was years and for most of those years a person can pointed out that early detection could be maintain some level of independence. The beneficial in modifying lifestyle in order optimal situation for most people affected to delay the onset of symptoms as long by dementia is to remain in their homes and as possible. Improving diet, increasing this is usually possible until the later stages physical activity, engaging socially and of the condition, when the needs of dementia expanding cognitive reserve through sufferers often surpass the capacity of intellectual stimulation can all contribute to informal caregivers and home care providers. extending the years of good mental health. Informal caregivers, most of whom are Although several witnesses agreed that women, sacrifice their own time, finances and early diagnosis is preferable, testimony also health in order to care for a loved one with confirmed that improved diagnosis cannot dementia. Caregivers shoulder a tremendous happen in isolation. Rather, it must be responsibility as they strive to provide the addressed in tandem with the gaps identified attention and care that is necessary. As a below. They emphasized that patients who result, caregivers are vulnerable to health are handed this difficult diagnosis must problems. As the committee heard from be offered a range of supports at the time Jo-Anne Poirier of VON Canada, informal of diagnosis, which is the case for other caregivers are Canada’s silent patients. types of diagnoses, such as cancer or heart She noted that one-third of the caregivers disease. Diagnosis should mark the beginning for dementia sufferers report symptoms of of a process of healthcare management depression. Members also heard that the rather than an end point where a newly stress and anxiety of providing care can lead diagnosed individual is left to find his or to premature dementia in the caregiver. her own way through a complex system. Caregiver burnout often results in premature hospitalization of dementia patients. As Katherine McGilton, a senior scientist 5. Greater at Toronto’s University Health Network, Support for described, premature hospitalization can precipitate further cognitive decline and result Informal in the patient having to stay in hospital to Caregivers await placement in a long-term care facility. Members were told that on average across Canada, 15% of people in acute-care hospitals are waiting for placement in long-term care. “The biggest challenge in caregiving is avoiding caregiver Witnesses emphasized that society should burnout, when a caregiver can offer a range of supports for caregivers in no longer perform their role.” order to lengthen the time that dementia patients can stay in their homes while also — Angus Campbell, Executive Director, reducing the burden on the caregivers. Caregivers Nova Scotia Suggestions for needed support included

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 19 ] adult day programs that provide supervised activities for dependent adults in order to provide some respite for caregivers; overnight stays for dementia patients in residential care facilities; additional tax incentives; extended Employment Insurance benefits under the Compassionate Care program; a caregiver allowance; flexible work conditions; training and information; support groups; and, improved home care services, discussed below.

6. Integration of Health Services

“Dementia is the godfather of chronic diseases in that it will lead to an ongoing litany of many other diseases.”

— Chris Simpson, Past-president, Canadian Medical Association

As mentioned above, there is a need to address the number of health professionals with specialized training in geriatric and dementia care. In addition to that challenge, however, is the need to adjust the current model of healthcare delivery. Elderly Canadians are the most likely sector of the population to suffer from multiple chronic conditions requiring multiple prescriptions. Patients suffering from dementia present an additional challenge in chronic disease management as they are limited in their ability to describe symptoms, relay medical history and, if not properly supported by caregivers, may not be adhering to their medication regimen.

[ 20 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities Frank Molnar of the Canadian Geriatrics for Rural and Northern Health Research Society noted that 90% of dementia patients at Laurentian University noted that access who live in the community have at least to broadband services is inconsistent two other chronic conditions. Currently, across the country, especially in rural and healthcare delivery, both primary care remote areas. The committee was told physicians and acute-care hospitals, that the limited connectivity significantly emphasize treatment of a single issue at a restricts the capacity for telemedicine. time. However, individuals with multiple chronic conditions would be better served by a healthcare delivery model that can manage all of these conditions together, instead of 7. Emphasized individually. In this regard, it was suggested Home and that a “dementia-plus care” model would be a fully integrated chronic disease management Community system that would permit all the required Care specialists to work together to determine the most effective treatment approach. It was noted that such an approach would help to improve the monitoring of patients “If we get this right, we can postpone taking multiple medications, sometimes or avoid the need for people to called polypharmacy, which is associated move into that institutional care with increased adverse reactions, drug- that is on no one’s bucket list.” drug interactions and reduced compliance. Similarly the committee heard from Veronique — Irene Martin-Lindsay, Executive Director, Boscart of the Canadian Gerontological Alberta Seniors Communities & Nursing Association that the complexity of Housing Association caring for a dementia patient requires the integration of health as well as social services. In addition to the healthcare challenges presented by dementia patients, primarily Without the population base to support the due to the co-morbidities of other chronic significant presence of health professionals conditions, dementia patients require or services, rural, remote and First Nations increased supervision and assistance with communities present challenges with activities that are both health-related respect to healthcare delivery. For dementia and non-health related as their dementia care, Andrew Kirk of the Rural Dementia progresses. While these issues are often Action Research described the innovative assumed by informal caregivers, as Rural and Remote Memory Clinic at the discussed above, there is an increased University of Saskatchewan, which requires need to provide these services in-home. rural and remote patients to travel to a one- day memory clinic for diagnosis but then With respect to healthcare services that could provides effective follow-up care remotely. be made available through home care, the However, funding is stretched for this committee heard about the importance of innovative program, and it seems to have rehabilitation, especially following a hospital little capacity to promote this model to other visit. Rehabilitation services help to prevent communities across Canada. Perhaps more the sudden decline that often accompanies importantly, Wayne Warry from the Centre health crises in dementia patients. In-home

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 21 ] nursing care was also held up as an important The provision of home and community component of home care for dementia services is particularly important in rural and sufferers to ensure that medications are taken remote communities where other housing properly and that prescriptions are up to date. options are likely to be very far away, which Nurses could also help to identify evolving would remove the dementia sufferer from a health issues before they necessitate a hospital familiar environment and away from their visit, could consult with physicians as needed loved ones. Suzanne Dupuis-Blanchard, and could keep the health team updated on President of the Canadian Association health status. The committee was also told of on Gerontology, described a program in the Home-Care-Plus model which includes New Brunswick which permits a geriatric specialists in dementia care as part of the assessment team to travel from Fredericton home care model. As explained by Nadine to rural parts of that province. Despite the Henningsen of the Canadian Home Care success of this program it has not been Association, expanded use of innovative adopted elsewhere. Marie-France Tourigny- technologies within the home can further Rivard, from the Canadian Academy of improve care, including self-care, reduce Geriatric Psychiatry, discussed her experience emergency room visits and admissions to with geriatric mental health teams that hospital as well as reduce medication errors. consult with rural physicians, either in person or via telehealth. In addition, this Personal support workers are equally component of care is critical for First Nations important in a comprehensive home and communities where alternative housing community care approach. With appropriate options may not be culturally acceptable. training to support individuals with dementia, personal support workers can help to provide Several witnesses noted that effective many social services, depending on the level provision of home and community services of care required, including meal preparation, to individuals affected by dementia will house cleaning, laundry, shopping, dressing, require a re-structuring of the current bathing, toileting, feeding, skin care, etc. The approach in order to allow for the integration committee was cautioned, however, that the of health and social services. The committee provision of home care services to dementia was told about and applauds the efforts patients is challenged by the observation that of the Canadian Nurses Association, the these individuals often do not want strangers College of Family Physicians of Canada, in their homes. It is essential, therefore, to the Canadian Home Care Association and start home care services as early as possible in other key stakeholders to come together to order to build relationships with the patients. discuss the policy and practice implications for transitioning from traditional primary Some witnesses questioned whether care and acute care to community-based volunteers could help to address the needs care. Witnesses cautioned that this approach of dementia sufferers, whether in their home would result in an initial increase in costs but or in other settings. It was pointed out that that, if the change is properly managed, the specialized training is essential and that these new system would produce cost savings. dementia patients are particularly sensitive to changes in personnel. For these reasons the committee was told that it would be difficult to rely on volunteers in the area of dementia care.

[ 22 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities 8. Affordable living. This situation is detrimental to the Housing individual, whose health will deteriorate more quickly in the long-term care environment, it is a costlier alternative than providing the supports needed to keep the person in their “Despite all the investments, home, and it takes a long-term care bed away acute care hospitals are being from someone who may be more in need. overwhelmed by the care of persons with dementia. We do Laurie Johnston of the Ontario Retirement not have the resources to meet Communities Association stated that Canada their needs. We are losing ground is one the few Western countries that does and need immediate help.” not provide any flexible funding for seniors’ housing, an approach that would address — Frank Molnar, Vice-president, the affordability issue as well as the waiting Canadian Geriatrics Society lists for long-term care. She suggested that flexible funding would allow greater Dementia patients who can no longer remain access to assisted-living facilities and could in their homes have essentially two housing include, for example, subsidies provided options as described earlier, assisted living and directly to individuals so that they can long-term care. While assisted-living facilities choose the housing or services that best suit have the capacity to provide care to most their situations, or could be in the form of dementia patients and some have integrated mandatory long-term care insurance. The special memory care units, this option is Canadian Medical Association suggested only available to individuals who can afford that the federal government should make a the cost, which can be as high as $5,000 per capital investment of about $540 million, with month. Sadly, some seniors, including funding awarded on a cost-share basis with dementia patients, are being transferred applicants, to renovate and retrofit existing to subsidized long-term care residences infrastructure as a means of quickly increasing prematurely if they are no longer able to be the number of available long-term care beds. cared for at home but cannot afford assisted

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 23 ] The Patient Perspective

Of all the expert testimony offered throughout Members heard first-hand experience of this study, none was more compelling the current disjointed approach to dementia than that which was given by members of care, beginning with the reluctance or the Ontario Dementia Advisory Group, inability of healthcare providers to provide Mary Beth Wighton, Phyllis Fehr, Bill Heibein supportive and helpful advice so as to and Bea Kraayenhof. This group represents minimize the devastation of this diagnosis individuals suffering from dementia and is or how to maintain a good quality of life. committed to being an influential participant in policy making, research projects and “You get your diagnosis and when education initiatives in Ontario. you get your diagnosis, I will honestly say, you get prescribed “We are parents, grandparents, disengagement…People are spouses and friends. We have had prescribed disengagement. long and successful careers. When we They’re sent home to sit in that were diagnosed with dementia, these chair and do nothing. We need to experiences did not disappear; they keep them engaged and active. are and will always be a part of us.” That is not happening.” — Mary Beth Wighton, Member, Ontario Dementia Advisory Group — Phyllis Fehr, Member, Ontario Dementia Advisory Group

[ 24 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities Committee members were moved by Finally, the committee was reminded that the the strength and determination of these United Nations Convention on the Rights of individuals who have been let down by a Persons with Disabilities ensures that persons compartmentalized system that is ill-equipped with dementia, as with other disabilities, are to integrate the range of services needed to entitled to participate as equals in discussions properly address the needs of individuals with about the programs and services that affect dementia. It is clear, they deserve nothing less them. As members listened to their personal than a dementia-friendly Canada in which stories, it became not only obvious but they are not only accepted but embraced. imperative that Canadians living with dementia must be included in all aspects of a coordinated “The more we can be seen and approach to dementia care in Canada. heard in public the better. One of the reasons I say that is I know “Don’t ignore us, because we still have when I was first diagnosed, the so much to offer. As with the dementia first thing you want to do is just strategy program, we could be the withdraw and hide. The more we experts because we live with it.” can be seen, the more people who have just been diagnosed and — Bea Kraayenhof, Member, start to pay attention to what’s Ontario Dementia Advisory Group happening, hopefully they’re going to get their self-confidence back to be able to go out and participate.”

— Bill Heibein, Member, Ontario Dementia Advisory Group

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 25 ] Recommendations for a National Dementia Strategy

“All over the world there is a need that such a jurisdictional arrangement is not for national dementia strategies, and unusual among countries that currently have 24 countries have done that now.” national dementia strategies, Australia and the United States are examples. In fact, the — Marc Wortmann, Executive Director, committee notes that national strategies have Alzheimer’s Disease International been implemented in Canada for other health- related issues. These strategies include the It became clear to members from listening to Canadian Diabetes Strategy, the Canadian the testimony of multiple experts on the issue Strategy for Cancer Control and the Integrated of dementia over the course of 14 meetings Strategy on Healthy Living and Chronic that there is a considerable amount of Disease13 and additional strategies have excellent work being done by a vast number of existed in previous years. Finally, members dedicated individuals and groups in Canada. were told that Canada supported the 2015 However, as noted by Mimi Lowi-Young “Strategy and Plan of Action on Dementias of the Alzheimer Society of Canada (ASC), in Older Persons” developed by the Pan we are far behind other countries in our American Health Organization, which listed approach to this challenge, being one of only five areas of action to address dementia:14 two G7 countries (along with Germany) that do not have a comprehensive national • Promote plans, policies and dementia strategy. This observation is of programs for risk reduction, particular concern given the warning by prevention, quality of life and care; some witnesses that the nearly doubling • Establish interventions for of dementia cases in the next 15 years will prevention and care; overwhelm Canada’s healthcare system unless the country addresses the situation • Implement a long-term care system head on with targeted programs, clear goals that addresses the needs of the and proper monitoring and accountability. patients as well as their caregivers; • Strengthen health human In Canada, the direct provision of health and resources training; and, social services is primarily under the authority of the provinces and territories, with the • Improve research and surveillance. exception of certain populations for whom the federal government is responsible including In order to more effectively address the surge First Nations. While this situation may limit of dementia cases in Canada, the committee the nature of the direct interventions promoted believes that a comprehensive approach under a national strategy, members were told must be taken and agrees with testimony

13 Public Health Agency of Canada, Chronic Disease Initiatives, Strategies, Systems and Programs.

14 Pan American Health Organization, Strategy and Plan of Action on Dementias in Older Persons, 29 September 2015.

[ 26 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities from the World Health Organization that In establishing a dementia strategy for Canada, dementia must be given a higher priority. the committee supports the model proposed by the ASC that calls for the creation of a As discussed earlier, the federal government partnership,15 an adaptation of the approach has implemented the “National Dementia taken in the Canadian Strategy for Cancer Research and Prevention Plan,” however, only Control. That strategy is the responsibility the research component of this plan appears of the Canadian Partnership Against Cancer, to be comprehensive. In fact, many witnesses which is made up of representatives from congratulated the Canadian Institutes of cancer and health organizations; federal, Health Research (CIHR) on its work in this provincial and territorial government agencies area. Despite the strong research focus, all and departments; patient organizations; witnesses called on the federal government individuals and families affected by to assume a leadership role to establish a cancer; clinicians and healthcare providers; strategy that; brings together all of the great researchers; and the Aboriginal community. work being done; facilitates the scaling up The work of the Canadian Partnership Against of promising practices in healthcare, home Cancer spans prevention and screening; care, housing and social services; promotes diagnosis and clinical care; person-centred the translation of successful research perspectives; First Nations, Inuit and into policy and programs; encourages the Métis; system performance; knowledge uptake of guidelines and standards across management; and public engagement and the country for dementia care; provides outreach. The Canadian Partnership Against assistance to improve access to home care Cancer receives $50 million annually from services and alternative housing options; the federal government and is currently and supports informal caregivers. operating under its second five-year mandate. The ASC proposes that a similar partnership In terms of structure and accountability of be established to develop and implement the dementia strategy, the committee heard a national dementia strategy that is “built about the “U.S. National Plan to Address on the collective vision, expertise and Alzheimer’s Disease,” which is under firsthand experience of dementia leaders, the authority of the U.S. Department of researchers, experts, practitioners, caregivers Health and Human Services and involves and those living with the disease from partnerships among several federal agencies across the country.”16 The ASC proposes and departments. An Advisory Council annual federal funding of $30 million. on Research, Care and Services was established to create a national strategic “Hundreds of thousands of plan to address the increasing prevalence of Canadians living with dementia dementia and to coordinate efforts across are counting on the Government the federal government. The committee of Canada to lead the way.” was informed that the U.S. plan must be evaluated, reported on and updated annually. — Ken McGeorge, Acting Executive Director, Alzheimer Society of New Brunswick

15 ASC, The Canadian Alzheimer’s Disease and Dementia Partnership: Strategic Objectives, September 2015.

16 Ibid., page 2.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 27 ]

RECOMMENDATION 1: RECOMMENDATION 2:

The committee therefore The committee further recommends that the federal recommends that the federal government immediately government, when establishing establish the Canadian the Canadian Partnership Partnership to Address to Address Dementia, take Dementia with a mandate to into consideration the create and implement a National structure and function of the Dementia Strategy. Canadian Partnership Against Cancer, however the new organization must:

• include representation from, but not be limited to, federal, provincial and territorial governments, dementia and other health-related organizations, individuals affected by dementia and their caregivers, healthcare professionals, housing organizations, researchers and the Indigenous community;

• be required to evaluate, report on and update the strategy annually; and,

• receive adequate federal funding of at least $30 million annually.

[ 28 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities

RECOMMENDATION 3: RECOMMENDATION 4:

The committee further The committee therefore recommends that the federal recommends that the proposed government adjust the annual Canadian Partnership to Address funding provided to the proposed Dementia, in its development and Canadian Partnership to creation of Canada’s National Address Dementia in response Dementia Strategy, be guided by to annual evaluations and the following documents: strategy updates. • The Canadian Alzheimer’s Disease and Dementia Partnership: Strategic Objectives (Alzheimer The committee agrees that the federal Society of Canada); and, government’s “National Dementia Research and Prevention Plan” is not sufficient to • Improving Dementia Care address the increasing demands for dementia Worldwide: Ideas and care in Canada and would like to see the Advice on Developing and establishment of a more comprehensive strategy. In developing the National Dementia Implementing a National Strategy, the Canadian Partnership to Dementia Plan (Alzheimer’s Address Dementia should take advantage Disease International). of the good work conducted by the ASC in its proposed model and as well as the strategies that have been implemented in As recommendation 4 illustrates, the countries around the world. In this regard, committee prefers not to be overly prescriptive Alzheimer’s Disease International produced in this report in the description of a National the 2013 report “Improving Dementia Care Dementia Strategy and leaves many of the Worldwide: Ideas and Advice on Developing particulars up to members of the proposed and Implementing a National Dementia partnership. Rather, the committee would like Plan,” which provides an assessment of to emphasize some of the components that several national dementia strategies.17 must be included within the new strategy. Some aspects specifically include a role for the federal government while still respecting jurisdictional limitations. Other aspects of the strategy, where the federal role is smaller, require that the partnership’s collaborative structure promote and facilitate uptake across jurisdictions for a uniform approach to dementia care across the country.

17 A.M. Pot and I. Petrea, Improving Dementia Care Worldwide: Ideas and Advice on Developing and Implementing a National Dementia Plan, London: Bupa/Alzheimer’s Disease International, October 2013.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 29 ] A. RESEARCH RECOMMENDATION 5: “Research on dementia ranging from prevention to living with dementia The committee therefore to a cure must be encouraged, along recommends that the federal with continued research funding.” government allocate to the Canadian Institutes of — Suzanne Dupuis-Blanchard, President, Health Research’s Dementia Canadian Association on Gerontology Research Strategy, as a The Canadian Institutes of Health Research’s component of the proposed Institute on Aging, which currently invests National Dementia Strategy, $41.1 million annually in dementia research, 1% of current direct dementia has implemented the Canadian Consortium care costs, or approximately on Degeneration in Aging (CCNA), which $100 million annually. was applauded by many witnesses. In particular, the committee commends CIHR’s requirement that all CCNA-funded research include gender-based analysis. While the B. PUBLIC AWARENESS committee is of the view that Canada can be very proud of its dementia research efforts, it “Dementia is a growing cause questions the level of investment. Dementia of death in this country and we is now one of the leading causes of death and need to pay attention to it.” one of the most costly medical conditions in terms of care and housing. As well, members — Louise Hanvey, Project Manager, note that Canada supported the 2013 G8 Canadian Hospice Palliative Care Association Dementia Summit Declaration from which the proposal for a research investment level More effort must be placed on public at 1% of dementia care costs was derived. awareness. While the Public Health Agency of Canada emphasized stigma reduction, it appeared to play only a passive role in this regard through the creation of Dementia Friends Canada. In addition, members are concerned that the federal government has not fully embraced its responsibility for increasing public awareness about dementia. That is, public awareness campaigns should not be restricted to stigma reduction, but rather, should include prevention strategies, the importance of early diagnosis, symptom recognition, reassurance that a good quality of life can be maintained for years with the proper supports, and information about the supports available and organizations to contact for more help.

[ 30 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities

RECOMMENDATION 6: RECOMMENDATION 7:

The committee therefore The committee further recommends that the Public recommends that, with respect Health Agency of Canada create to prevention strategies, the and implement, within the federal government implement National Dementia Strategy, a recommendations 20 and 21 of comprehensive public awareness the Standing Senate Committee campaign that includes promotion on Social Affairs, Science and of the Dementia Friends Canada Technology’s 2016 report entitled website as well as high-visibility/ Obesity in Canada: A Whole-of- high-impact approaches regarding Society Approach for a Healthier prevention, early diagnosis, Canada, by: symptom recognition, quality of life, and services and supports. • designing and implementing a public awareness campaign on healthy eating based on tested, simple messaging, and

• implementing a comprehensive public awareness campaign on healthy active lifestyles in collaboration with other relevant departments, agencies, experts and trusted organizations.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 31 ] C. SURVEILLANCE to be filled with the proper follow-up supports The committee is concerned that the that these individuals need and deserve. surveillance model that the Public Health Agency of Canada has indicated should In this regard, the committee heard from be operational by 2017 may not be David Berry, from the Dementia Policy Unit, resourced sufficiently to meet the needs Government of Scotland. He emphasized of the National Dementia Strategy. that the Scottish dementia strategy has recently been updated with a guarantee of follow-up care for people who have received a diagnosis of dementia. Scotland RECOMMENDATION 8: is now undertaking the third iteration of its national dementia plan, which is updated The committee therefore every three years. He explained that the new recommends that the federal strategy will offer a year of person-centred government ensure that Public support, coordinated through a trained “link Health Agency of Canada worker” to any newly diagnosed person who wishes to take advantage of the supportive receive adequate resources for care. The individual can choose to engage the Canadian Chronic Disease with the coordinator at the time of diagnosis or Surveillance Program so that at some time later on. This approach is similar it can provide robust, timely to the ASC’s First Link® early intervention and accessible dementia program, which the committee was told surveillance data beginning has not been effectively communicated in 2017. to, or taken up by, all health providers.

RECOMMENDATION 9: D. DIAGNOSIS AND FOLLOW-UP The committee therefore “This will become one of the great recommends that the proposed public health challenges of our time.” Canadian Partnership to Address Dementia ensure that Canada’s — William Reichman, President, National Dementia Strategy Baycrest Health Sciences encourages the implementation Testimony from individuals affected with of the Alzheimer Society of dementia revealed that pursuing and receiving Canada’s First Link® early a diagnosis of dementia must be improved. intervention program across Some of the inadequacies will be addressed Canada, adapted as necessary through issues described below, such as to be appropriate and improved training, better access to specialists, culturally sensitive to and improved access to healthcare services for rural and remote regions. However, the each community. committee also heard that once a diagnosis has been made, it creates a vacuum which needs

[ 32 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities E. SUPPORT FOR INFORMAL CAREGIVERS RECOMMENDATION 10:

“The tipping point for placement The committee therefore in long-term care is most recommends that the frequently caregiver burnout.” federal government explore fiscal options to reduce the — Candace Chartier, financial stress on informal Chief Executive Officer, Ontario Long Term Care Association caregivers including:

Members heard repeatedly that informal • expanding the Employment caregivers shoulder a tremendous Insurance compassionate responsibility when caring at home for a care benefit beyond person suffering from dementia. As a result, palliative care; and, caregivers sacrifice income, job security, and their own good mental and physical health. • amending the Caregiver Committee members agree with the sentiment Tax Credit and the Family expressed, for example, by Bonnie Schroeder Caregiver Tax Credit to of the Canadian Coalition for Seniors’ Mental make them refundable Health, that these caregivers need support to maintain good physical, emotional, social and in order to benefit lower financial health. In fact, financial challenges income Canadians. were put forth by Angus Campbell of Caregivers Nova Scotia as one of the primary concerns expressed by caregivers. In addition, the committee notes the work of the Employer RECOMMENDATION 11: Panel for Caregivers, which was established under Employment and Social Development The committee further Canada in 2014. This panel engaged with recommends that the federal employers to assess practices and policies government promote the that support caregivers in the workplace workplace best practices and encourage their full participation identified in the 2015 report in the workforce. In 2015 it released its report entitled When Work and Caregiving commissioned by Employment Collide: How Employers Can Support and Social Development Their Employees Who Are Caregivers.18 Canada entitled When Work and Caregiving Collide: How “The problems seem huge and Employers Can Support Their complex, but the solutions Employees Who Are Caregivers. can be very simple.”

— Jo-Anne Poirier, President, VON Canada

18 Government of Canada, When Work and Caregiving Collide: How Employers Can Support Their Employees Who Are Caregivers, 2015.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 33 ] publicly subsidized long-term care setting RECOMMENDATION 12: or the privately paid assisted-living setting.

The committee further Comprehensive coverage of home care recommends that the proposed services should include visits by health Canadian Partnership to Address providers for care as well as rehabilitation, Dementia ensure that additional and personal support workers or social workers for meal preparation, assistance caregiver supports be promoted with transportation, and house cleaning, through the National Dementia maintenance, etc. This support reduces the Strategy including: burden on informal caregivers, allows patients to remain in a familiar environment and • education and training; reduces demand for other housing options.

• respite services; and, The committee notes that the Minister of Health has a mandate to “support the delivery • a web resource portal that of more and better home care services. This provides access to information includes more access to high quality in-home about these programs caregivers, financial supports for family care, and initiatives. and, when necessary, palliative care” and to include this within the upcoming Health Accord.19 The government has indicated its intention to invest $3 billion over four years in home care,20 however, there has F. HOME CARE SERVICES been no government announcement to date on this issue. The committee notes that “The idea of home care and aging at implementation of a home care strategy is home not only supports patients’ self- a critical element for all seniors who would determination and aging with dignity like to age at home, not only for those with but is generally considered less dementia. In fact, comprehensive coverage costly than institution-based care.” for home care services would help to keep seniors who are not suffering from dementia — Francine Lemire, Executive Director, at home longer, which would free up beds College of Family Physicians of Canada in long-term care facilities for dementia patients who require the round-the-clock Testimony throughout this study indicated care offered at these facilities. These that access to home care services is a critical individuals would then not be forced to stay element of a national dementia strategy. Not in hospital or pay the high costs associated only do individuals generally prefer to stay with memory care units in assisted-living in their homes as long as possible, but this facilities. In order to encourage innovation approach is better in terms of the progression and implementation of publicly-funded of dementia and is less expensive than the home care, the committee suggests that the publicly funded acute-care hospital setting, level of funding be adjusted annually using

19 Prime Minister of Canada, Minister of Health Mandate Letter.

20 Liberal Party of Canada, Investing in Health and Home Care, 2015.

[ 34 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities a reward mechanism that acknowledges positive outcomes within each jurisdiction. RECOMMENDATION 15:

“There is enormous potential for The committee further technology-enabled home care. recommends that the federal government assess the need The time is right, the need is now for home care funding beyond and the opportunities are endless.” the initial four-year period as

— Nadine Henningsen, Executive Director, provincial budgets for health Canadian Home Care Association services and social services develop and implement integrated models of care.

RECOMMENDATION 13:

The committee therefore RECOMMENDATION 16: recommends that the federal government provide, in the The committee further upcoming Health Accord, recommends that the proposed targeted funding of $3 billion Canadian Partnership to Address over four years for a Dementia engage stakeholders comprehensive package of in promoting innovative home care services. technologies and the Home- Care-Plus model that integrates specialists in dementia care into the home care model. RECOMMENDATION 14:

The committee further recommends that the federal government require that the targeted funding for home care services under the new Health Accord be subject to regular evaluation and reporting that demonstrates effective use of funds, which will provide the basis for annual, success-based adjustments to funding.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 35 ] G. INTEGRATION AND in silos, with little or no communication COORDINATION OF SERVICES or cooperation between them. As well, palliative and end-of-life care should be a “We have to deal with part of the integration of services regardless symptoms in a much more of the patient’s place of residence as it is an multidisciplinary approach… essential component of the continuum of care. Existing agencies including Canada We have to look at how to care Health Infoway and the Canadian Foundation for this population differently.” for Healthcare Improvement could provide data and expertise to accomplish this goal. — Katherine McGilton, Members note that seamless integration Senior Scientist, University Health Network of health services requires comprehensive implementation of electronic health records, Witnesses were clear that better integration which this committee recommended in its of all aspects of dementia care can improve 2014 report Prescription Pharmaceuticals access to care, allow for coordination with in Canada — Unintended Consequences.21 social services, provide for a continuum of care along the whole course of the condition, “Health services in Canada are allow for the optimal use of professional organized around providers skills and reduce hospital admissions. and siloed funding envelopes However, the current system limits the ability as opposed to around patients to truly achieve an integration of services and programs of care.” because of the separate funding envelopes for all health providers and institutions. As a — Carolyn Pullen, Director, Policy, Advocacy result, health and social services are offered and Strategy, Canadian Nurses Association

21 Senate, Standing Committee on Social Affairs, Science and Technology, Prescription Pharmaceuticals in Canada — Unintended Consequences, October 2014.

[ 36 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities

RECOMMENDATION 17: RECOMMENDATION 18:

The committee therefore The committee further recommends that the recommends that the federal federal government in government implement collaboration with provincial and recommendation 1 of the territorial counterparts: Standing Senate Committee on Social Affairs, Science • assess the fiscal barriers and Technology’s 2014 report currently preventing the Prescription Pharmaceuticals integration of health and in Canada — Unintended social services; and, Consequences, regarding:

• implement the necessary • establishing targets for the changes in order to facilitate implementation of electronic the re-structuring necessary health and prescription for integrating health and drug systems; social services. • promoting the use of and accelerating the uptake of electronic databases by health professionals through an aggressive targeted awareness campaign; and,

• public reporting on the progress of implementing electronic health and prescription drug systems.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 37 ] increases. While the committee is optimistic RECOMMENDATION 19: that improvements in home care services will result in fewer admissions to hospital and The committee further fewer premature moves into long-term care, recommends that the proposed the aging demographic makes it imperative that Canadian Partnership to Address immediate action be taken to improve housing Dementia, within the National options for vulnerable dementia patients. The committee agrees that investment in long-term Dementia Strategy, promote: care infrastructure is necessary and it endorses the suggestion from the Canadian Medical • models of dementia care that Association in this regard. As well, members integrate healthcare delivery, feel that there should be greater uniformity such as the Dementia-plus across Canada within seniors’ residences Care Model; regarding accommodation, care and staffing requirements. Finally, the committee agrees • integration of social services that a substantial investment in infrastructure is into dementia care; and, necessary to increase long-term care capacity, that is, the $540 million awarded on a cost- • a continuum of care that share basis as recommended by the Canadian includes advance care Medical Association. Finally, that options such planning for integrating as flexible funding for assisted living as well as long-term care insurance should be explored. of palliative and end-of- life care. “We should ensure that Canadians with dementia, regardless of their socio-economic status, have H. HOUSING access to appropriate housing.”

“We all need to work collaboratively — Veronique Boscart, President, to find affordable solutions that Canadian Gerontological Nursing Association are respectful of the choices, needs and dignity of seniors living with dementia in Canada.” RECOMMENDATION 20: — Laurie Johnston, Chief Executive Officer, Ontario Retirement Communities Association The committee therefore recommends that the The committee is concerned about the high federal government invest number of people in acute-care hospitals $540 million in continuing waiting for a vacancy in long-term care and by care infrastructure to the high cost associated with assisted-living options. The current housing situation for increase the capacity for individuals with dementia who cannot remain long-term care in provinces in their homes is strained, and will continue and territories. to worsen as the population ages and the number of Canadians suffering from dementia

[ 38 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities The committee notes that access to health RECOMMENDATION 21: and social services in rural and remote communities is limited. This observation The committee further is particularly concerning given that recommends that the proposed rural and remote communities often have Canadian Partnership to proportionally more seniors than urban Address Dementia ensure that centres, and seniors require more healthcare services than younger Canadians. Further, the National Dementia Strategy residents in these communities are less includes efforts to: likely to choose assisted-living or long-term care residences since such a move would • examine and update as likely require them to be located quite a necessary the staffing, distance from family and friends and a care and accommodation familiar environment. For dementia patients standards applied to seniors’ in rural and remote communities, access residences, including to integrated services either at home or via legislation and regulations; telehealth or mobile health technologies should be enhanced. The committee notes and, that the Minister of Innovation, Science and Economic Development has a mandate to • explore and assess a range increase high-speed broadband coverage in of opportunities to improve Canada22 and that Budget 2016 announced an access to seniors’ housing. investment of $500 million over five years, beginning in 2016-17, in this regard.23

“With respect to First Nations being so disadvantaged and 1. RURAL AND underdeveloped, with the Internet REMOTE COMMUNITIES we have Telehealth in the North and it seems to be helpful.” “Remote communities face incredible challenges when — Isadore Day, caring for older adults.” National Health Portfolio Holder, Assembly of First Nations Regional Chief, — Wayne Warry, Director, Ontario, Assembly of First Nations Centre for Rural and Northern Health Research, Laurentian University

22 Prime Minister of Canada, Minister of Innovation, Science and Economic Development Mandate Letter.

23 Department of Finance, Budget 2016: Growing the Middle Class, Chapter 2: Growth for the Middle Class, Ottawa, 22 March 2016.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 39 ] general population. As mentioned earlier, RECOMMENDATION 22: the rate of dementia is significantly higher in the First Nation population and the rate The committee therefore is higher for men than for women in these recommends that the proposed communities. Committee members were told Canadian Partnership to that the symptoms, experiences and disease Address Dementia include progression of dementia are consistent with Indigenous culture, world view and of the within the National Dementia circle of life and that dementia is accepted Strategy the assessment and as a natural part of many individuals’ life promotion of specific models course. Members were told that being of dementia care for rural and cared for by family and friends within the remote communities including community is particularly important and that that of Rural and Remote other housing options are not acceptable. Memory Clinics. Therefore, sufficient resources must be provided in order to deliver culturally appropriate home and community care. The committee is concerned that the federal RECOMMENDATION 23: government has not ensured that the funding for the Home and Community Care Program, The committee further run by Health Canada’s First Nations and recommends that the federal Inuit Health Branch, has kept pace with government expedite the funding population levels of Indigenous communities. of the new program to enhance “It’s not the traditional way to place a high-speed broadband coverage family member in a nursing home. throughout Canada. It’s not something that was taught to us.”

— Norma Rabbitskin, Senior Health Nurse, J. FIRST NATIONS COMMUNITIES Sturgeon Lake First Nation Health Centre

“In my experience, I find it’s often the Aboriginal communities that are the most dementia friendly.”

— Andrew Kirk, Professor, University of Saskatchewan

Many First Nations communities are located in rural and remote areas and therefore have many of the same challenges as the communities described above. However, First Nations people are affected by and respond differently to dementia than the

[ 40 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities equipped for dementia care and often have RECOMMENDATION 24: not provided their staff with the skills and information they need to provide such care. The committee therefore recommends that the Home and Community Care Program, RECOMMENDATION 25: delivered by Health Canada’s First Nations and Inuit The committee therefore Health Branch: recommends that the • be funded to reflect current proposed Canadian Partnership Indigenous population levels; to Address Dementia work and, with Accreditation Canada, within the context of the • permit and encourage National Dementia Strategy, innovative approaches to to develop standards of program delivery. dementia care for acute- care hospitals.

K. TRAINING OF HEALTH PROFESSIONALS RECOMMENDATION 26:

“There is a need for more training, The committee further and we need to make sure that recommends that the proposed the educational content of all Canadian Partnership to university and college programs Address Dementia, within …include caring for persons with the context of the National dementia in their curriculum.” Dementia Strategy, in

— Marie-France Tourigny-Rivard, Member, collaboration with provincial Canadian Academy of Geriatric Psychiatry governments, medical faculties, nursing programs, and their The committee is concerned that there will regulatory and licensing continue to be a lack of specially trained bodies, address health human health professionals to attend to the need of resource capacity, training and Canada’s aging population. Not only are there insufficient numbers of health professionals professional development being trained for geriatric specialties, but in with respect to aging and some cases, basic education does not include dementia care. elder care. As well, acute-care hospitals, where too many individuals are spending too much time waiting for a long-term care bed, are not

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 41 ] L. BEST PRACTICES PLATFORM RECOMMENDATION 28: “There is a lot of great work being done across the country, but there The committee further is nowhere to bring it together.” recommends that the Canadian Partnership to Address Dementia — Mimi Lowi-Young, Chief Executive consider the programs and Officer, Alzheimer Society of Canada practices listed in Appendix 1 for The committee is encouraged by the inclusion in the proposed Best considerable amount of great work on Practices Portal. dementia that is going on all around the country. However, it is also discouraged by the lack of any coordinated effort to share best practices in this area. A considerable number of witnesses called for the creation of a best practices platform. M. A FINAL THOUGHT

“The person with dementia must be heard.” RECOMMENDATION 27: — Shekhar Saxena, Director, The committee therefore Department of Mental Health recommends that the proposed and Substance Abuse, Canadian Partnership to World Health Organization Address Dementia ensure the development, implementation and promotion of a secure RECOMMENDATION 29: Best Practices Portal available to health and social service The committee therefore providers of dementia care. recommends that the proposed Canadian Partnership to Address Dementia ensure that persons with dementia are included in all aspects of its work.

[ 42 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities Conclusion

Dementia currently affects close to one situation a public health priority. In response, million Canadians, robbing them of their the Government of Canada must lead the quality of life and stretching our social, way by working with all jurisdictions and health and housing resources. Decisive relevant stakeholders to implement a National action by the federal government is urgently Dementia Strategy. Such a strategy would needed as the proportion of seniors continues help to ensure adequate care for individuals to grow over the next two decades. suffering from dementia, the availability of appropriate housing options, funding Now is the time for Canada to implement a for research and innovation to develop National Dementia Strategy. An impressive treatments and disease management, and amount of work has been done by healthcare facilitate the translation of new discoveries professionals, researchers, dementia into practice. This committee notes a lack advocates, housing providers and governments of innovation in the delivery of healthcare of all levels. However, a greater coordination and would like to see incentives such as of efforts is essential to effectively meet performance-based funding to encourage the oncoming surge in dementia cases. The changes in how the healthcare system World Health Organization has labelled this approaches the evolving needs of Canadians.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 43 ] APPENDIX 1: Programs and Initiatives Highlighted in this Report

Program/Initiative URL to the program or for further information Alzheimer Society’s http://www.alzheimer.ca/en/About-dementia/ 10 warning signs Alzheimer-s-disease/10-warning-signs http://www.alzheimer.ca/~/media/Files/chapters-on/pklnh/ Blue Umbrella job%20posting/Release%2023%20Feb%202015%20%20 Alzheimer%20Staff%20has%20New%20Role.pdf Butterfly model http://www.dementiacarematters.com/pdf/modern.pdf C.A.R.E. Tool (Caregivers’ http://www.cihr-irsc.gc.ca/e/48555.html Aspirations, Realities and Expectations Tool) Cogniciti Brain https://cogniciti.com/ Health Assessment Dementia friendly communities http://www.alz.co.uk/dementia-friendly-communities Dementia Friends Canada www.dementiafriends.ca Dementia villages http://dementiavillage.com/ http://www.alzheimer.ca/~/media/Files/national/ First Link® Core-lit-brochures/ASC_first_link_e.pdf http://www.canadiangeriatrics.ca/default/assets/ GEM Plus File/CJG-CME%20Vol4-2%20Wilding(3).pdf New Brunswick’s Home http://www2.gnb.ca/content/gnb/en/departments/ First Strategy social_development/promos/home_first.html Memory Cafés https://www.alzheimersspeaks.com/memory-cafes http://www.alzheimer.ca/en/nb/We-can-help/Support/ Memory Cafés New Brunswick memory-cafe http://www.alzheimer.ca/en/on/We-can-help/ Minds in Motion Minds-In-Motion Montreal Cognitive www.mocatest.org Assesment tool (MoCA) Rural Dementia Action http://www.cchsa-ccssma.usask.ca/ruraldementiacare/radar.html Research (RaDAR)-Rural and Remote Memory Clinic Speak Up — Advance http://www.advancecareplanning.ca/resource/acp-workbook/ Care Planning Still Here Campaign http://www.alzheimer.ca/stillhere The Way Forward-Integrated http://www.hpcintegration.ca/ Palliative Approach

[ 44 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities APPENDIX 2: List of Recommendations

RECOMMENDATION 1: RECOMMENDATION 4: The committee therefore recommends The committee therefore recommends that the federal government immediately that the proposed Canadian Partnership establish the Canadian Partnership to Address to Address Dementia, in its development Dementia with a mandate to create and and creation of Canada’s National implement a National Dementia Strategy. Dementia Strategy, be guided by:

• the Alzheimer Society of Canada’s RECOMMENDATION 2: The Canadian Alzheimer’s Disease The committee further recommends that the and Dementia Partnership: federal government, when establishing the Strategic Objectives, and Canadian Partnership to Address Dementia, • Alzheimer’s Disease International’s take into consideration the structure and report Improving Dementia Care function of the Canadian Partnership Against Worldwide: Ideas and Advice on Cancer, however the new organization must: Developing and Implementing a National Dementia Plan. • include representation from, but not be limited to, federal, provincial and territorial governments, RECOMMENDATION 5: dementia and other health-related The committee therefore recommends organizations, individuals affected that the federal government allocate to the by dementia and their caregivers, Canadian Institutes of Health Research’s healthcare professionals, housing Dementia Research Strategy, as a component organizations, researchers and of the proposed National Dementia Strategy, the Indigenous community; 1% of current direct dementia care costs, • be required to evaluate, report on and or approximately $100 million annually. update the strategy annually; and, • receive adequate federal funding RECOMMENDATION 6: of at least $30 million annually. The committee therefore recommends that the Public Health Agency of Canada create and implement, within the National RECOMMENDATION 3: Dementia Strategy, a comprehensive The committee further recommends that public awareness campaign that includes the federal government adjust the annual promotion of the Dementia Friends Canada funding provided to the proposed Canadian website as well as high-visibility/high- Partnership to Address Dementia in response impact approaches regarding prevention, to annual evaluations and strategy updates. early diagnosis, symptom recognition, quality of life, and services and supports.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 45 ] RECOMMENDATION 7: RECOMMENDATION 10: The committee further recommends that, The committee therefore recommends with respect to prevention strategies, that the federal government explore fiscal the federal government implement options to reduce the financial stress recommendations 20 and 21 of the Standing on informal caregivers including: Senate Committee on Social Affairs, Science and Technology’s 2016 report entitled • expanding the Employment Obesity in Canada: A Whole-of-Society Insurance compassionate care Approach for a Healthier Canada, by: benefit beyond palliative care; and, • amending the Caregiver Tax Credit • designing and implementing a public and the Family Caregiver Tax Credit awareness campaign on healthy eating to make them refundable in order to based on tested, simple messaging, and benefit lower income Canadians. • implementing a comprehensive public awareness campaign on healthy active lifestyles in collaboration with RECOMMENDATION 11: other relevant departments, agencies, The committee further recommends experts and trusted organizations. that the federal government promote the workplace best practices identified in the 2015 report commissioned by Employment RECOMMENDATION 8: and Social Development Canada entitled The committee therefore recommends that When Work and Caregiving Collide: the federal government ensure that Public How Employers Can Support Their Health Agency of Canada receive adequate Employees Who Are Caregivers. resources for the Canadian Chronic Disease Surveillance Program so that it can provide robust, timely and accessible dementia RECOMMENDATION 12: surveillance data beginning in 2017. The committee further recommends that the proposed Canadian Partnership to Address Dementia ensure that additional RECOMMENDATION 9: caregiver supports be promoted through the The committee therefore recommends National Dementia Strategy including: that the proposed Canadian Partnership to Address Dementia ensure that Canada’s • education and training; National Dementia Strategy encourages • respite services; and, the implementation of the Alzheimer Society of Canada’s First Link® early • a web resource portal that provides intervention program across Canada, access to information about these adapted as necessary to be appropriate and programs and initiatives. culturally sensitive to each community.

[ 46 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities RECOMMENDATION 13: RECOMMENDATION 17: The committee therefore recommends The committee therefore recommends that that the federal government provide, in the federal government in collaboration with the upcoming Health Accord, targeted provincial and territorial counterparts: funding of $3 billion over four years for a comprehensive package of home care services. • assess the fiscal barriers currently preventing the integration of health and social services; and, RECOMMENDATION 14: • implement the necessary changes The committee further recommends that the in order to facilitate the re- federal government require that the targeted structuring necessary for integrating funding for home care services under the new health and social services. Health Accord be subject to regular evaluation and reporting that demonstrates effective use of funds, which will provide the basis for RECOMMENDATION 18: annual, success-based adjustments to funding. The committee further recommends that the federal government implement recommendation 1 of the Standing Senate RECOMMENDATION 15: Committee on Social Affairs, Science and The committee further recommends that Technology’s 2014 report Prescription the federal government assess the need for Pharmaceuticals in Canada — home care funding beyond the initial four- Unintended Consequences, regarding: year period as provincial budgets for health services and social services develop and • establishing targets for the implement integrated models of care. implementation of electronic health and prescription drug systems; • promoting the use of and RECOMMENDATION 16: accelerating the uptake of electronic The committee further recommends that databases by health professionals the proposed Canadian Partnership to through an aggressive targeted Address Dementia engage stakeholders awareness campaign; and, in promoting innovative technologies and the Home-Care-Plus model that • public reporting on the progress integrates specialists in dementia care of implementing electronic health into the home care model. and prescription drug systems.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 47 ] RECOMMENDATION 19: RECOMMENDATION 22: The committee further recommends that The committee therefore recommends the proposed Canadian Partnership to that the proposed Canadian Partnership to Address Dementia, within the National Address Dementia include within the National Dementia Strategy, promote: Dementia Strategy the assessment and promotion of specific models of dementia care • models of dementia care that for rural and remote communities including integrate healthcare delivery, such that of Rural and Remote Memory Clinics. as the Dementia-plus Care Model; • integration of social services into dementia care; and, RECOMMENDATION 23: The committee further recommends that the • a continuum of care that includes federal government expedite the funding advance care planning for integrating of the new program to enhance high-speed of palliative and end-of-life care. broadband coverage throughout Canada.

RECOMMENDATION 20: The committee therefore recommends that RECOMMENDATION 24: the federal government invest $540 million The committee therefore recommends in continuing care infrastructure to that the Home and Community Care increase the capacity for long-term Program, delivered by Health Canada’s care in provinces and territories. First Nations and Inuit Health Branch:

• be funded to reflect current RECOMMENDATION 21: Indigenous population levels; and, The committee further recommends that • permit and encourage innovative the proposed Canadian Partnership to approaches to program delivery. Address Dementia ensure that the National Dementia Strategy includes efforts to: RECOMMENDATION 25: • examine and update as necessary the The committee therefore recommends staffing, care and accommodation that the proposed Canadian Partnership to standards applied to seniors’ Address Dementia work with Accreditation residences, including legislation Canada, within the context of the National and regulations; and, Dementia Strategy, to develop standards of • explore and assess a range dementia care for acute-care hospitals. of opportunities to improve access to seniors’ housing.

[ 48 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities RECOMMENDATION 26: RECOMMENDATION 28: The committee further recommends that The committee further recommends that the proposed Canadian Partnership to the Canadian Partnership to Address Address Dementia, within the context Dementia consider the programs and of the National Dementia Strategy, in practices listed in Appendix 1 for inclusion collaboration with provincial governments, in the proposed Best Practices Portal. medical faculties, nursing programs, and their regulatory and licensing bodies, address health human resource capacity, RECOMMENDATION 29: training and professional development The committee therefore recommends that with respect to aging and dementia care. the proposed Canadian Partnership to Address Dementia ensure that persons with dementia are included in all aspects of its work. RECOMMENDATION 27: The committee therefore recommends that the proposed Canadian Partnership to Address Dementia ensure the development, implementation and promotion of a secure Best Practices Portal available to health and social service providers of dementia care.

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 49 ] APPENDIX 3: List of Witnesses

Wednesday, March 9, 2016 Dr. Yves Joanette, Scientific Director Canadian Institutes of Health Research of the CIHR Institute of Aging, Chair of the World Dementia Council Rodney Ghali, Director General, Public Health Agency of Canada Centre for Chronic Disease Prevention Thursday, March 10, 2016 Dr. Shekhar Saxena, Director, Department World Health Organization of Mental Health and Substance Abuse Wednesday, March 23, 2016 Alzheimer Society of Canada Mimi Lowi-Young, Chief Executive Officer Canadian Coalition for Seniors’ Mental Health Bonnie Schroeder, Executive Director Women’s Brain Health Initiative Lynn Posluns, Founder and President Thursday, March 24, 2016 Canadian Medical Association Dr. Chris Simpson, Past President Carolyn Pullen, Director, Policy, Canadian Nurses Association Advocacy and Strategy Dr. Francine Lemire, Executive Director College of Family Physicians of Canada and Chief Executive Officer Dr. Frank Molnar, Vice-President, As an Individual Canadian Geriatrics Society Wednesday, April 13, 2016 Dr. Marie-France Tourigny-Rivard, Geriatric Psychiatrist and Professor, Canadian Academy of Geriatric psychiatry Department of Psychiatry, Division of Geriatric psychiatry, Ottawa University Canadian Association on Gerontology Dr. Suzanne Dupuis-Blanchard, Professor Canadian Gerontological Nursing Association Veronique Boscart, President Thursday, April 14, 2016 Alzheimer’s Disease International Marc Wortmann, Executive Director Wednesday, April 20, 2016 Isadore Day, National Health Portfolio Assembly of First Nations Holder, AFN Regional Chief, Ontario Norma Rabbitskin, Senior Health Nurse, Sturgeon Lake First Nation Health Centre Dr. Andrew Kirk, Professor and Head, Division of As Individuals Neurology, University of Saskatchewan, Rural Dementia Action Research Network (RaDAR) Wayne Warry, Director, Centre for Rural and Northern Health Research, Laurentian University

[ 50 ] Dementia in Canada: A National Strategy for Dementia-friendly Communities Thursday, April 21, 2016 Canadian Home Care Association Nadine Henningsen, Executive Director Susan May, National Director, GE Healthcare VON Canada Jo-Anne Poirier, President and CEO Wednesday, May 4, 2016 Alberta Seniors Communities & Irene Martin-Lindsay, Executive Director Housing Association (ASCHA) Ontario Retirement Communities Association Laurie Johnston, Chief Executive Officer Thursday, May 5, 2016 Canadian Hospice Palliative Care Association Louise Hanvey, Project Manager Ontario Long Term Care Association Candace Chartier, Chief Executive Officer Wednesday, May 11, 2016 Caregivers Nova Scotia Angus Campbell, Executive Director Dr. William E. Reichman, President and HealthCareCAN Chief Executive Officer, Baycrest Health Sciences Katherine McGilton, Senior Scientist, As an Individual Associate Professor, Toronto Rehabilitation Institute – University Health Network Thursday, May 12, 2016 Alzheimer Society of New Brunswick Ken McGeorge, Acting Executive Director Dr. Frank Molnar, Vice-President, As an Individual Canadian Geriatrics Society Wednesday, May 18, 2016 Ontario Dementia Advisory Group (ODAG) Phyllis Fehr, Board Member Bill Heibein, Board Member Bea Kraayenhof, Board Member Mary Beth Wighton, Board Member Thursday, June 2, 2016 Government of Scotland (Edinburgh) David Berry, Policy Officer, Dementia Policy Unit Dr. Ronald C. Petersen, Chair, Advisory Council on As an Individual Research, Care and Services for the US National Plan to Address Alzheimer’s Disease

Dementia in Canada: A National Strategy for Dementia-friendly Communities [ 51 ] APPENDIX 4: Briefs

• Alzheimer’s Disease International Copies of the briefs submitted to the committee can be found on the • Assembly of First Nations committee’s website here. • Canadian Gerontological Nursing Association • Canadian Medical Association • Canadian Nurses Association • Caregivers Nova Scotia • HealthCareCAN • Heart and Stroke Foundation • Kirk, Dr. Andrew (as an individual) • Molnar, Dr. Frank (as an individual) • Ontario Dementia Advisory Group (ODAG) • Parkinson Canada • Rochon, Dr. Paula (as an individual)

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