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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
Health Workforce Training Meeting
Covenant Health: Network of Excellence in Seniors’ Health & Wellness
Edmonton, Alberta
March 15, 2019
