Conversations on Supporting Family Caregivers in Acute and …€¦ · Attendees considered how to...
Transcript of Conversations on Supporting Family Caregivers in Acute and …€¦ · Attendees considered how to...
Conversations on Supporting Family Caregivers in Acute and Long-term CareDr. Jasneet Parmar, Associate Professor, Dept. of FM, U of ABMedical Director, Network of Excellence in Seniors’ Health and Wellness, Covenant Health
Medical Lead, AHS EZ Home Living and Transitions
Objectives
By the end of this session you will learn about:
• Barriers and facilitators for supporting family
caregivers of seniors.
• Areas of improvement for supporting family
caregivers of seniors.
• Proposed system and policy changes for
supporting family caregivers of seniors.
“It’s not if, it’s when you
will be a family caregiver.”- Nadine Henningsen, President, Carers Canada
Family Caregivers
Definition: The World Health Organization (WHO)
defines family caregivers as those who provide
informal unpaid care*.* World Health Organization and Alzheimer's Disease International. Dementia: A
public health priority. Geneva, Switzerland: World Health Organization; 2012.
Numbers of Caregivers
• According to Stats Canada, 28% of population are caregivers:
o estimated (36,146,780 * 0.28 =) 10.1 caregivers in Canada
(2016).
o estimated (4,252,879 * 0.28 =) 1.2 Caregivers in Alberta (2016)
(http://www.statcan.gc.ca/pub/91-520-x/2010001/tablesectlist-listetableauxsect-eng.htm)
• Nearly 3 in 10 people are family caregivers (Turcotte, 2013)
General Social Survey (Stats Canada, 2012):
Estimates put the number at 8.1 million family
caregivers in Canada.
8.1 million carers
60% working
48% caring for aging parents
10% >30hrs/week
20%need financial help
50% tired and anxious
44% 45-64 yrs of age
Most caregiving is in
the context of aging
parents or in-laws
(Sinha, 2012).
Significance: FCGs ‘the shadow workforce’
(Butler,2010); (Kitts,2012); (Hollander,2009); (Sinha, 2012)
Family caregivers are the backbone ‘the shadow
workforce” of our society and health care system
• increasingly older population, particularly those 80+
– resultant growth in healthcare services
– increased inability of families to provide care for seniors in their own
homes
– prevalence of chronic diseases, including dementia, increases with age (1 in 3 of those 80+ have at least four chronic conditions - Butler, 2010)
Significance: Consequences faced by FCGs
(Butler,2010); (Kitts,2012); (Hollander,2009); (Sinha, 2012)
There is increasing evidence that caregiving is being provided at
significant physical, emotional and financial costs to the caregiver:
Family caregivers stretched beyond their capacity, reporting high levels
of distress (Kitts, 2012):
– 40-50% of seniors with high needs (on homecare: high maple scores)
have distressed caregivers
The burden on and distress among family caregivers is ever increasing (CIHR: Supporting Caregivers, 2010)
– provide >21 hours of care per week
– support seniors experiencing depression, moderate to severe cognitive
decline, and aggressive behaviours
Significance: Consequences faced by FCGs
• Increasingly overburdened and not recognized as part of the
health care system (Bookman & Harrington, 2007).
• Caregiving is being provided at significant physical, emotional
and financial costs to the caregiver (Dumont et al 2009;
Turcotte, 2013)
• Costs of unpaid caregiving estimated at $25 billion (Hollander,
Liu & Chappell, 2009).
Significance: Consequences faced by
FCGs (Ankuda et al, 2017)
• Stressed out caregivers using ER visits for
respite:
“We need to do a better job of identifying and supporting
caregivers experiencing distress, in order to help caregivers
feel better and hopefully improve outcomes in older adults
with disability.”
Deborah Levine, M.D., M.P.H.
Supporting Family Caregivers of Seniors within Acute
and Continuing Care Systems – Symposium 2016
• One-day symposium, August 31, 2016
• 106 attendees / 21 stakeholder organizations
– 38 frontline healthcare providers
– 36 healthcare managers
– 16 seniors service organizations
– 8 family caregivers
– 5 academics
– 3 policy makers
Supporting Family Caregivers of Seniors within Acute
and Continuing Care Systems – Symposium 2016
1. Attendees considered how to best involve and support
family caregivers in the healthcare setting, including
discussions on:
Practices
Policies
Culture
System change
2. Attendees contributed their input into conversation circles
to identify:
Current issues surrounding family caregivers
Recommendations for improving family caregiver involvement
and experiences
Conversation Circles
• Attendees explored six topics in the conversation circles:
– Orientation and Education of Healthcare Providers to Increase
Understanding of Caregiver Needs and How to Assist Them
– Culture Change Needed within our Systems to Acknowledge,
Respect and Honour Family Caregivers
– Supports Needed to Engage, Empower and Foster the Resilience
of Family Caregivers
– Tools and Processes Available to Help Identify and Assess
Caregiver Burden
– Palliative Care and End of Life Supports Desired by Family
Caregivers
– Systems Change Needed from a Policy and Practice Perspective
to Ensure that Family Caregiver Supports and Resources are
Made Available
1. Orientation and Education of Healthcare Providers to
Increase Understanding of Caregiver Needs and How to
Assist Them
Issues Identified Recommendations
– Limited education and training
for healthcare providers
– Different education and training
for acute and continuing care
settings
– Family caregivers not
recognized or valued as part of
the care team
– Communication is impacted by
the lack of recognition or value
• Educate healthcare providers
• Use similar approaches and
training across care settings
• Develop communication skills in
healthcare providers
2. Culture Change Needed within our Systems to
Acknowledge, Respect and Honour Family Caregivers
Issues Identified Recommendations
– Time pressures leave little
time to engage with family
caregivers
– System is dominated by a
medical model
• Move to a person and family
centered approach
• Welcome family caregivers in to
our care settings
3. Supports Need to Engage Empower and Foster the
Resilience of Family Caregivers
Issues Identified Recommendations
• Lack of information and
supports
• Healthcare providers lack the
knowledge on how to engage,
empower and foster resilience
• Healthcare providers are not
aware of current resources
• Healthcare providers need to be
proactive in their support by:
o Developing and maintaining
a list of resources
o Creating a provincial
strategy
o Helping family caregivers
navigate the system
4. Tools and Processes Available to Help Identify and
Assess Caregiver Burden
Issues Identified Recommendations
• Inconsistencies in identifying
and assessing family caregiver
stress/burden
• Healthcare providers not
adequately or consistently
trained to identify stress/burden
• Conducting multiple caregiver
burden assessments is
problematic
• Acknowledge family caregiver
stress/burden
• Train healthcare providers to
identify family caregiver
stress/burden
• Build systems and mechanisms
for follow-up including supports
5. Palliative Care and End of Life Supports Desired by
Family Caregivers
Issues Identified Recommendations
• Healthcare providers are not:
o trained to support patients
and family caregivers at end
of life
o aware of the palliative and
end of life resources
available
• Educate healthcare providers
about palliative care and end of
life supports
• Train healthcare providers to
communicate with patients and
family caregivers about
available resources
6. System Change is Needed from a Policy and Practice
Perspective to Ensure that Family Caregiver Supports
and Resources are Made Available
Issues Identified Recommendations
• Current family caregiver support
polices and programs:
o have a narrow approach
o do not provide adequate
financial support
• Legal constraints prohibit family
caregivers from obtaining
necessary health information
• Develop comprehensive policies
that provide financial support
• Involve family caregivers so they
can identify financial resources
and supports needed
• Change privacy legislation so
family caregivers can access the
health information they need
Key Input from Attendees
• Establish education and training for all healthcare providers
(including end of life and palliative care) that is consistent
across all care settings.
• Improve communication between healthcare providers and
family caregivers, and between healthcare providers across
care settings.
• Address healthcare provider time constraints to allow for
meaningful engagement with family caregivers
• Move to a person and family-centered approach that welcomes
and integrates family caregivers as part of the care team.
• Develop and maintain an easily accessible, comprehensive list
of resources that support family caregivers.
Key Input from Attendees• Increase healthcare provider awareness of current resources
and supports available to family caregivers.
• Acknowledge family caregiver stress and burden; train
healthcare providers to identify caregiver stress and burden
and to follow-up when required.
• Develop comprehensive programs and policies that provide
adequate financial support to family caregivers.
Next Steps
A second symposium was held August 30, 2017 to
disseminate findings, identify specific programs, policies and
practices that can better support family caregivers and
advocate for change.
Current supports do not adequately compensate family
caregivers and they often end up giving and giving until they
have nothing left. -Attendee to Supporting Family Caregivers of Seniors within Acute and Continuing Care
Systems, 2016
Network Website• The Network’s website has many resources:
seniorsnetworkcovenant.ca
– Organized into tabs for:
• Resources (a list of documents)
• Learnings
– Innovation Fund Projects
– Network Initiatives
• A key caregiver resource is the Inventory of
Resources and Supports for Caregivers in Alberta
– Located on the “Learnings” tab under “Network
Initiatives”
• “Resources and Supports for Caregivers in Alberta”
Inventory of Resources and Supports
for Caregivers in Alberta
Inventory of Resources and Supports
for Caregivers in Alberta
• A main inventory
document lists the
resources and supports
– Includes information on all
aspects of care
• Smaller, focused
documents used for
specific topics, including:
– Dementia
– Palliative and End-of-Life
Care
Inventory of Resources and
Supports for Caregivers in Alberta
Main Inventory:
Inventory for Palliative and End
of Life Care:
www.seniorsnetworkcovenant.ca/wp-
content/uploads/2017/10/Inventory-of-Caregiver-Resources-for-
Palliative-and-End-of-Life-Care-May-25-2016.pdf
www.seniorsnetworkcovenant.ca/wp-
content/uploads/2017/01/Resources-Caregivers-Inventories-of-
Resources-and-Supports-for-Caregivers-in-AB-Doc-20160721-1.pdf
Main InventoryTable of Contents
• The Table of Contents
is hyperlinked to allow
you to click to get to
the section you want
to see
Main Inventory:
• Along with inventories
for support
organizations and
resource documents,
there are specific
sections for:
– Palliative and End-of-
Life Resources
– Financial Supports
Objectives
By the end of this session you will learn about:
• Barriers and facilitators for supporting family
caregivers of seniors.
• Areas of improvement for supporting family
caregivers of seniors.
• System and policy changes for supporting family
caregivers of seniors.
References: • Ankuda, C. K., Maust, D. T., Kabeto, M. U., McCammon, R. J., Langa, K. M. and Levine, D. A. (2017), Association Between
Spousal Caregiver Well-Being and Care Recipient Healthcare Expenditures. J Am Geriatr Soc. doi:10.1111/jgs.15039
• Bookman, A., & Harrington, M. (2007). Family caregivers: A shadow workforce in the Geriatric Healthcare System. Journal of
Health Politics, Policy and Law, 32(6), 1005-1041.
• Butler-Jones D. Chief Public Health Officer's Report (2010).The State of Public Health in Canada: Growing Older- Adding Life
to Years. Report on State of Public Health in Canada. Retrieved from http://www.phac-aspc.gc.ca/cphorsphc-
respcacsp/2010/fr-rc/pdf/cpho_report_2010_e.pdf
• Canadian Institute for Health Information (CIHI, 2010): Supporting Informal Caregivers—The Heart of Home Care. Retrieved
from https://secure.cihi.ca/free_products/Caregiver_Distress_AIB_2010_EN.pdf.
• Canadian Institute for Health Information (CIHI, 2011): Health Care in Canada — A Focus on Seniors and Aging. Retrieved
from https://secure.cihi.ca/free_products/HCIC_2011_seniors_report_en.pdf
• Dumont ,S., Turgeon, J., Allard, P., Gagnon, P., Charbonneau, C., & Vezina, L. (2006). Caring for a loved one with advanced
cancer: Determinants of psychological distress in family caregivers. J Palliat Med. Aug; 9(4), 912-21.
• Hollander M, Guiping L, Chappell N. (2009), Who Cares and How Much? Healthcare Quarterly, 12 (2):42. Kitts J. Health
council of Canada Report on homecare priorities (2012), ‘Seniors in need, Caregivers in distress’. Retrieved from
http://www.alzheimer.ca/durham/~/media/Files/on/Media%20Releases/2012/April%202012/HCC_HomeCare_2d.pdf
• Sinha, M. Results from General Social Survey (2012), ‘Portrait of Caregivers’, Statistics Canada. Retrieved from
http://www.statcan.gc.ca/pub/89-652-x/89-652-x2013001-eng.htm
• Turcotte, M ( 2013). Insights on Canadian Society – Family caregiving: What are the consequences? Retrieved from
http://www5.statcan.gc.ca/olc-cel/olc.action?ObjId=75-006-X201300111858&ObjType=47&lang=en&limit=0
• World Health Organization and Alzheimer's Disease International. Dementia (2012): A public health priority. Geneva,
Switzerland: World Health Organization. Retrieved from
http://www.who.int/mental_health/publications/dementia_report_2012/en/