Health & Social Care Policies for Older Persons with Dementia in Canada: Issues & Policy Directions

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Health & Social Care Policies for Older Persons with Dementia in Canada: Issues & Policy Directions A. Paul Williams, PhD. Full Professor, Health Policy Frances Morton-Chang, PhD. Post-Doctoral Fellow 2016 International Symposium on Health and Social Policy for Older Persons with Dementia June 29th, 2016, Seoul, South Korea w w w. i h p m e. u t o r o n t o. c a

2 Part 1 The Perfect Storm

Canada Is Still Comparatively Young: Ratio of 65+ to Population 15-64 3

4 Yet, Canada is Aging Since the mid-1960s, proportion of older Canadians has steadily increased July 1, 1983: 9.9% of Canadians were 65+ July 1, 2013: 15.3% Source: Statistics Canada 2013 http://www.statcan.gc.ca/pub/91-215-x/2013002/part-partie2-eng.htm

Speed of Aging Accelerating: 65+ Rise from 7% to 14% 5

6 One Factor: More Older Persons Source: OECD. Data. https://data.oecd.org/pop/elderly-population.htm#indicator-chart

7 Another Factor: Fewer Younger Persons Source: OECD. Data. https://data.oecd.org/pop/young-population.htm#indicator-chart

8 The Result: Now More Older Than Younger Persons in Canada Source: Statistics Canada 2015 http://www.statcan.gc.ca/pub/91-215-x/2013002/ct009-eng.htm

Bad News: Older Persons Have More Functional Needs 9

More Bad News: Growing Numbers of Persons Living with Dementia (PLWD) 10

11 Dementia: A Game Changer Often experienced in combination with other chronic health and social needs (e.g., diabetes, social isolation) Erodes capacity to conduct routine tasks and personal care (e.g., managing medications, managing finances) Associated with high health care utilization (including costly hospital and residential care beds) Also increases burden on shrinking caregiver base family, friends and neighbors

12 Dementia: By the Numbers In 2011, 747,000 Canadians were living with Alzheimer s Disease and related dementias (ADRD) -- 14.9% of Canadians 65+ By 2031, if nothing changes, this figure expected to double to 1.4 million Source: http://www.alzheimer.ca/en/about-dementia/what-is-dementia/dementia-numbers

13 Dementia: Economic Costs Combined direct (medical) and indirect (lost earnings) costs of dementia estimated at $33 billion per year If nothing changes, this number will climb to $293 billion by 2040 Source: http://www.alzheimer.ca/en/about-dementia/what-is-dementia/dementia-numbers

14 Dementia: Social Costs In 2011, family caregivers spent 444+ million unpaid hours caring for someone with cognitive impairment including dementia This figure represents $11 billion in lost income and 227,760 fulltime equivalent employees in the workforce By 2040, family caregivers will spend 1.2 billion unpaid hours per year The physical and psychological toll on family caregivers is substantial Up to 75% will develop psychological illnesses 15 to 32% will experience depression Source: http://www.alzheimer.ca/en/about-dementia/what-is-dementia/dementia-numbers

15 The Perfect Storm: As Needs Increase, Capacity to Care Declines as the babyboomer generation ages, a growing 'family care gap' will develop as the number of older people in need of care outstrips the number of adult children able to provide it creating a shortfall in our collective capacity to care for older generations Overstretched services will struggle to provide extra care, with two-thirds of all health resources already devoted to older people and social care services facing a funding crisis. Source: Institute for Public Policy Research, UK, 2014 http://www.ippr.org/publications/the-generation-strain-collective-solutions-to-care-in-an-ageing-society

16 Part 2 Where Canada Is Now

17 Canadian Medicare: Universal Health Insurance Public Financing/Private Delivery Universal coverage for medically necessary services provided by private physicians and not-for-profit hospitals Decentralized insurance model 10 provinces & 3 territories have constitutional jurisdiction over health care Federal government transfers funding to 13 separate provincial/territorial health insurance programs which meet federal Medicare principles

18 Canadian Medicare s Boundaries: Historical Focus on Episodic Curative Care Medicare s enduring strength: equity Medicare requires first dollar coverage for all medically necessary hospital and doctor services no user fees Medicare s emerging weakness: illness focus Medicare does not require coverage for care provided outside of hospitals or by non-physicians (e.g., home care, community care, drugs) Coverage for other care varies, may include user fees Creates an incentive to use hospitals & doctors

19 What Canada Spends (2015) Source: Canadian Institute for Health Information (CIHI), https://secure.cihi.ca/free_products/nhex_trends_narrative_report_2015_en.pdf

20 What Canada Buys: Mostly Illness Care Source: Canadian Institute for Health Information (CIHI), https://secure.cihi.ca/free_products/nhex_trends_narrative_report_2015_en.pdf

21 Investments in Long-Term Care More Limited: Focus on Residential Care Beds Source: Colombo, F. et al (2011), Help Wanted? Providing and Paying for Long-Term Care, OECD https://www.oecd.org/els/healthsystems/47836116.pdf

One Consequence: Problems Discharging Acute Care Hospital Patients (including many PLWD) 22 Source: http://www.oha.com/news/documents/alc%20data%20-%20march%202016.pdf

23 Part 3 Where We Want To Go

24 Ontario s Emerging Seniors Strategy: A Community-Based Continuum of Care Places Source: Samir Sinha, Lead, Ontario Seniors Strategy http://www.crncc.ca/knowledge/events/pdf- IntegratingCareforOlderPersons/Symposium%20Dec10_Sinha.pdf

25 Start With the Basics: Health Promotion and Prevention There is persuasive evidence that the dementia risk for populations can be modified through reduction in tobacco use and better control and detection for hypertension and diabetes, as well as cardiovascular risk factors. A good mantra is What is good for your heart is good for your brain. Source: World Alzheimer Report 2014. http://www.alz.co.uk/research/world report 2014

26 Good News: Top Health Risks Appear Manageable (Canada) Source: Global Burden of Diseases, Profile: Canada, 2013. http://www.healthdata.org/canada

27 Create Dementia Care Strategies: Key Themes of Provincial Strategies Theme 1: Inform/Educate Enhance awareness, information, education and research Theme 2: Promote Person-Centred Care Care through dementia journey: prevention and early detection; primary care and home care; acute care and crisis management; residential and end-of-life care Theme 3: Engage Caregivers Expand unit of care to acknowledge and support unpaid caregivers

28 Scale-Up & Spread: Proven Services and Supports For PLWD: memory clinics, homemaking, transportation, medication management, MedicAlert, meal programs, early and ongoing care management For Caregivers: counselling and education, peer support, respite, caregiver allowances For Providers: specialized dementia care training; resources to manage dementia-related behavioral challenges in community and in residential care For Researchers and Policy-makers: grants, knowledge exchange e-platforms

29 Innovate: ipod Project Initiated by Alzheimer Society of Toronto in 2013 Provides ipod Shuffles, free of charge, to persons living with dementia (PLWD) and their caregivers Music (and counselling) can improve lives Low cost, little risk Improved cognition, communication, and quality of life Reduced caregiver burden and stress Greatest impact for PLWD experiencing depression, anxiety, agitation and aggression Sources: http://musicandmemory.org/blog/2013/02/19/alzheimer-society-of-toronto-launches-musicmemory-ipod-project/

30 Build Integrating Models Alzheimer Society First Link Connect PLWD and caregivers to needed communitybased services and supports at point of diagnosis Alzheimer day programs Assessment, care management and a mix of health and social care (e.g., meals, personal care, medication checks) in a social environment, while also offering respite to family caregivers Supportive housing Buildings with dedicated care staff offering 24/7 monitoring, personal care, and coordinated access to a range of services on-site and through other agencies

31 An International Example: Japan s Open Houses Run by volunteers who offer people with dementia and carers access to all-day support in private homes Small grants Volunteer training Caregiver peer support 24/7 help line Light touch regulation Sources: http://www.ryerson.ca/content/dam/crncc/enews/pdfs/2015/2015 fall winter crncc enews vol35.pdf & http://www.housinglin.org.uk/_library/resources/housing/practice_examples/housing_lin_case_studies/hlin_case Study_105_Japan Grassroots.pdf

32 A Canadian Example: SMILE (Seniors Managing Independent Living Easily) Supported self-management Focus on frail older persons with complex health and social needs and caregivers living at home in urban and rural areas Professional case managers use modest budgets to help older persons and caregivers identify their needs, create solutions, coordinate access to available services and supports, monitor outcomes Neighbors can be paid to provide non-medical services like meals, transportation

33 Looking Further: Supportive Neighborhoods Hub & Spoke models use supportive housing sites as hubs to provide services to people living in their own homes

34 An International Example: Neighborhood Networks in Leeds, UK Since 2005, each local area across the cityregion has had its own dedicated Neighbourhood Network Local older people and their families get help with the everyday tasks of care, such as free or cheap transport, social activities, shopping, practical help at home, cleaning, gardening and breaks for carers. Families and carers get help to juggle the demands of family, work and caring, delay entry into formal care, and reduce reliance on the NHS.

35 The Ultimate Goal: Multi-Generational Dementia-Friendly Communities Welcome persons living with dementia back into their communities Engage younger older-persons to help older-older persons Train school children, bank tellers, letter carriers, convenience store clerks as dementia friends Older persons lost or wandering Older persons having trouble with bank machines Mail not collected, garbage not put out

Sum 36

37 The Perfect Storm: Rising Needs, Declining Care Capacity While relatively young, Canada is aging rapidly Numbers of persons living with dementia rising Dementia is a game changer Often experienced in combination with other chronic health and social needs Limits the ability to self-manage Collective care capacity is increasingly stretched Hospitals are costly and often inappropriate Traditional family caregiving is in decline

38 What We Need to Do: Change the Business Model Build an integrated community-based continuum Starting with health promotion and supports for everday living (e.g., nutrition, transportation, housing, home care) Extending to hospital and institutional care Care in the least restrictive setting possible Encourage grass-roots community initiatives which build broad caring capacity and normalize dementia as a shared social challenge

39 The Goal: Multi-Generational Dementia-Friendly Communities Source: Alzheimer Society, UK. http://www.actonalz.org/sites/default/files/documents/dementia_friendly_communities_full_report.pdf

Health & Social Care Policies for Older Persons with Dementia in Canada: Issues & Policy Directions A. Paul Williams paul.willaims@utoronto.ca Frances Morton-Chang 2016 International Symposium on Health and Social Policy for Older Persons with Dementia June 29th, 2016, Seoul, Korea w w w. i h p m e. u t o r o n t o. c a