w w w . i h p m e . u t o r o n t o . c a

Caring For Caregivers:

Creating a Culture of Change

A. Paul Williams, PhDProfessor Emeritus, Health Policy

Health Workforce Training Meeting

Covenant Health: Network of Excellence in Seniors’ Health & Wellness

Edmonton, Alberta

March 15, 2019

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Part 1: Changing Roles

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Changing Roles: Rise of Scientific Medicine

The 20th century saw the rise of scientific medicine

Previously most people born and died at home

“Care” the responsibility of family, especially unpaid

women

With hospitals, “citadels of science,” care context

shifted

People now born and died in hospitals

“Cure” the responsibility of increasingly specialized

health professions

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Changing Roles: Rise of the Professions

Scientific medicine defined the health professions

Doctors, nurses, allied health professions

Increasing specialization and division of labour

Narrowing focus on illnesses, body parts,

procedures

“Big five:” cancer, heart, diagnostic imaging, joint

replacements, sight restoration

Caregivers, when present, supporting actors

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Changing Roles: Unpaid Informal Caregivers Back at Centre Stage

The 21st century reverses that trend

Illnesses that can be cured on an episodic basis

supplanted by multiple chronic health and social needs

managed “closer to home”

Caregivers again take a lead role

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New Perspectives: Caregivers the Base of the Health Care Iceberg

Source: Lilly. Who really cares? Caregiving intensity, labour supply and policymaking in Canada. 2011.

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Part 2: Changing Realities

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What Changed? Aging Population

Source: Statistics Canada 2015 http://www.statcan.gc.ca/pub/91-215-x/2013002/ct007-eng.htm

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Speed of Aging Accelerating: Time for 60+ Population to Double from 10% to 20%

Source: WHO. Report on Aging. http://www.who.int/ageing/events/world-report-2015-launch/ageing-and-

health-report.ppt?ua=1

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Challenges: More Older Canadians Have 2+

Chronic Health Conditions

Source: Canadian Institute for Health Information. 2018. How Canada Compares. Results for the

Commonwealth Fund’s 2017 International Health Policy Survey of Seniors.

https://www.cihi.ca/sites/default/files/document/commonwealth-survey-2017-chartbook-en-rev2-web.pptx

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Challenges: More People Living With Dementia

Source: Alzheimers UK. https://www.alz.co.uk/sites/default/files/pdfs/global-impact-dementia-

infographic.pdf

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Challenges: More Older Canadians With Ongoing Needs

Source: City of Toronto. Healthy Aging in Toronto. March 2017. https://www.toronto.ca/legdocs/mmis/2017/hl/bgrd/backgroundfile-101655.pdf

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Caregivers: Front Line of Care

Source: Statistics Canada. 2012. https://www150.statcan.gc.ca/n1/en/pub/89-652-x/89-652-x2013001-

eng.pdf?st=9DyLklpx.

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Caregivers: Essential Supports for Daily Living

Source: Statistics Canada. 2012. http://www.statcan.gc.ca/pub/89-652-x/89-652-x2013001-

eng.htm#a1

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Caregivers: Advancing from Health Care to Health

Source: World Health Organization. Healthy Aging. http://www.who.int/ageing/events/world-report-2015-

launch/healthy-ageing-infographic.jpg?ua=1

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Caregivers: Sustaining Formal Care Systems

Source: Carers Canada. 2017. http://www.cdnhomecare.ca/media.php?mid=4918

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What Else Changed? Shrinking Caregiver Pool

Source: Senate of Canada. Getting Ready: For a new generation of active seniors. June 2017.

https://sencanada.ca/content/sen/committee/421/NFFN/Reports/NFFN_Final19th_Aging_e.pdf

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Negative Incentives: “Free” Work Can Be Costly

Source: CarersUK. https://www.carersuk.org/news-and-campaigns/press-releases

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Costs and Consequences:A Growing “Care Gap”

UK: “ … a growing family care gap means that the

number of older people in need of care is

predicted to outstrip the number of family

members able to provide it for the first time in

2017.

Source: Institute for Public Policy Research, UK, 2014.

http://www.ippr.org/publications/the-generation-strain-collective-solutions-to-care-in-an-ageing-society

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Part 3: Toward New Social Support Structures

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Looking Past the Horizon: Building New Social Structures

“Our plan should be to 'build' and 'adapt': to build

new community institutions capable of sustaining

us through the changes ahead and to adapt the

social structures already in place, such as family

caring, public services, workplaces and

neighbourhoods.”

Source: Institute for Public Policy Research, UK, 2014.

http://www.ippr.org/publications/the-generation-strain-collective-solutions-to-care-in-an-ageing-society

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Health Workforce Education & Training: Laying the Foundation

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Where Are We Now? Valuable One-Offs

Manitoba

Caregiver Recognition Act (2011)

Caregiver Recognition Day

Caregiver Advisory Committee

Nova Scotia

Small cash payments to low-income caregivers who

provide more than 20 hours of care each week

Ontario

Unpaid work leave of up to 8 weeks per year

Source: Government of Manitoba. https://www.gov.mb.ca/seniors/docs/caregiver_recognition_act_report.pdf . Continuing Care, Nova

Scotia. https://novascotia.ca/dhw/ccs/FactSheets/Caregiver-Benefit.pdf .

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Caregiver Supports

Source: CARP. June 2018. http://www.carp.ca/2018/06/20/british-columbia-expanding-caregiver-supports/

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Promising Directions

Quebec

Newly appointed Minister of Seniors and Informal

Caregivers

Caregiver's Action Plan to be tabled in 2019

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Where We Want to Go Next: Building Supportive Communities

Since 2005, each local area in Leeds, UK, has

had a Neighbourhood Network

Older people and families get help with everyday tasks

such as free or cheap transport, social activities,

shopping, help at home, cleaning, gardening and

breaks for carers.

Source: Leeds Older People’s Forum.

http://www.opforum.org.uk/nns/

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Neighborhood Networks, Leeds

Many of the networks 20 years old

Including charities, community groups, live-at-home

schemes and faith-based institutions

Each network run by a local management committee,

which includes older people and members of the local

community

Source: Leeds Older People’s Forum.

http://www.opforum.org.uk/nns/

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Creating New Social Structures: Mehrgenerationenhauser (multigenerational

houses), Germany

Started in 2006, expanded in 2012

Like extended families

Can include child care centre, dementia day program,

cafes where people can meet, youth centres, mothers

centres

Combine social services

with civic engagement

and participation

Source:

https://www.deutschland.de/en/topic/life/society-

integration/multi-generation-houses-bring-young-

and-old-together

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Intergenerational Programs for All Ages: Kitsilano Neighbourhood House, Vancouver

Source: Globe and Mail. 2017. https://www.theglobeandmail.com/life/how-should-cities-prepare-for-more-seniors/article35026600/

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Thinking Ahead: The Importance of Enabling Policy Frameworks

Source: The Prime Minster in Action. https://japan.kantei.go.jp/97_abe/actions/201709/11article5.html

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Japan: Enhancing Support and Buy-In for

Caregivers of All Generations

Support households with children and change the

social security system into one that supports young

as well as old

Eliminate child care wait lists

Make early childhood education & daycare free

Provide more care workers so that no one has to leave

paid employment to provide nursing care

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Japan: Creating Caregiver-Friendly Policies

Japan’s 2015 New Orange Plan for dementia care

championed by Prime Minister Shinzo Abe

Establishes “pillars” to guide the creation of

dementia-friendly communities

Give people with dementia a greater voice

Support family caregivers

Encourage cooperation and remove institutional barriers

within government and between providers

Incent intergenerational projects

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Source: Ministry of Health, Labour and Welfare. Long-Term Care Insurance System of Japan. 2016.

http://www.mhlw.go.jp/english/policy/care-welfare/care-welfare-elderly/dl/ltcisj_e.pdf

Japan: Achieving Integrated Community-based

Care by 2025

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Japan: Supporting Innovation

“Dementia “open

houses” run by

volunteers who offer

PLWD and carers

access to all-day

support in private

homes

Caregiver and

PLWD peer support

Professional training

24/7 help line

“Light touch”

regulation

Source: CRNCC. http://www.ryerson.ca/content/dam/crncc/enews/pdfs/2015/2015-fall-winter-crncc-enews-vol35.pdf

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Key Messages:

Creating a Culture of Change

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Key Messages

Health care professionals play a crucial and

influential role

Highly trusted

Visible tip of the health care iceberg

Education and training that equip professionals to

“step back” and see the bigger picture of high value

The iceberg tip supported by the “submerged” base

Caregivers play an essential role in maintaining health

and wellbeing, sustaining health care systems

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Key Messages

“Look beyond the horizon”

Key assumptions about “who cares” and “how much”

transformed in a period of rapid social change

Besides acknowledging and supporting caregivers,

health professionals can lead the way to innovating new

social support structures

Forward-looking education and training lays the

foundation to do just that

w w w . i h p m e . u t o r o n t o . c a

Caring For Caregivers:

Creating a Culture of Change

paul.williams@utoronto.ca

Health Workforce Training Meeting

Covenant Health: Network of Excellence in Seniors’ Health & Wellness

Edmonton, Alberta

March 15, 2019