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Supporting caregivers of frail older adults

The Bottom Line

  • Frail older adults have significant care needs, and often rely heavily on caregivers to support them.
  • Despite their crucial role, support for caregivers is often lacking or inconsistently available.
  • There are many ways to support caregivers of frail older adults, including: addressing their economic security through financial programs; engaging them in decision-making about how care and support is organized; and providing education and supports needed by caregivers to reduce their burden and to help them cope and build resilience.

The number of frail older adults in Canada is expected to rise from 1.1 million to more than 2 million by 2035.(1) Frailty is difficult to define, but most definitions consider it in terms of vulnerability,(2; 3) which can relate to physical, emotional and social factors.(4; 5) In relation to physical factors, this often means having a general lack of strength; being more vulnerable to disease (for example, having one or more chronic conditions) or disability (for example, a lack of mobility); and deteriorating in health more quickly as a result of diseases and disability (including cognitive deficits and/or dementia).(1) Emotional and social factors can relate to many things that lead to vulnerability (and eventually greater risk of functional impairments and diseases), including lack of emotional and social support and social isolation.(3) Frail older adults are at greater risk for chronic illnesses (6; 7) and disabilities which make it difficult to perform basic daily activities.(6; 8)

Frail older adults have significant care needs, and often rely heavily on caregivers to support them.(9) A caregiver may be an intimate partner, a family member, a friend, or a volunteer who may also themselves be frail or at risk of becoming frail. The roles of caregivers of frail older adults can be significant and may take various forms, such as:(10)
- providing emotional support;
- transporting or accompanying patients to medical appointments;
- reporting or managing side effects;
- giving medicines;
- keeping track of interventions (for example, for nutrition and exercise), medicines, test results and papers;
- providing physical care (for example, feeding, dressing and bathing);
- coordinating care (including navigating the system and advocating on behalf of their loved ones);
- keeping family and friends informed; and
- making legal and financial arrangements.

Despite their crucial role, support for caregivers is often lacking or inconsistently available.(11; 12; 13) This lack of support can have a negative impact on the physical and mental health of caregivers, on their personal and professional lives, and on the quality of care that they provide.(14) As reported during a forum with caregiver groups: “Failure to recognize, acknowledge and support family caregivers heightens their risk of becoming ‘collateral casualties’ of the illness, compromises their health, reduces the efficacy of the help they can provide to their relatives, and increases costs to the health and social service systems.”(14)

What the research tells us

There is a growing body of research evidence examining interventions to support caregivers in their efforts to prevent, delay the onset of, and manage the burden of frailty.

Addressing the economic security of caregivers
While we found no systematic review on employment arrangements or income supports for caregivers, some policy proposals have recommended that there should be supports for employed caregivers to continue to work, and that assistance should be provided to those that are most in need.(11)

Engaging caregivers in decision-making about needed care, and about how care and support is organized
Other interventions aim to engage caregivers in decision-making about how care and support is organized to ensure it is appropriate for their needs. Engaging caregivers was found to: create a more rewarding experience for healthcare staff; increase access for those with disabilities; simplify appointments; result in more efficient transportation between services; and increase organizational attitudes that support caregiver and patient involvement.(15)

Providing materials to help caregivers make decisions (often called decision aids) were found to increase the understanding of care options, risks and outcomes, improve involvement, and support professionals in counseling and sharing information with patients and caregivers.(16; 17; 18; 19)

Caregivers could also be provided with training to better prepare them to participate and engage in policy and care-planning discussion, and to determine what they see as appropriate supports for their specific situations.(20; 21)

Providing education and supports to reduce caregiver burden and to help them cope and build resilience
There is mixed evidence about whether education and training reduced caregiver burden.(22; 23; 24; 25) However, training in coping strategies was found to improve the mental well-being of caregivers.(26) In addition, providing assistance and emotional support to caregivers was found to improve their mental and physical health. It was also found to improve their engagement with social activities and reduce depression.(27) When education and training about the health needs of the person they are caring for was provided alongside assistance and emotional support, caregivers were found to have a reduced level of burden and stress.(28; 29) However, not enough evidence could be found to determine whether respite care (meaning, the services that provide a ‘break’ for caregivers) reduced caregiver burden.(30)

Take care of yourself too!

It can be particularly challenging to provide care to a loved one. But don’t become a collateral casualty. Take care of yourself, and seek help.

 

The content of this blog post is based on a citizen brief prepared by the McMaster Health Forum on strengthening care for frail older adults in Canada.


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References

  1. Canadian Frailty Network. What is frailty? http://www.cfn-nce.ca/frailty-in-canada/ (accessed June 12, 2016 2016).
  2. Swedish Institute of Public Health. Healthy Ageing. 2006.
  3. Andrew MK, Keefe JM. Social vulnerability from a social ecology perspective: a cohort study of older adults from the National Population Health Survey of Canada. BMC Geriatrics 2014; 14(1): 1-14.
  4. Bergman H, Ferrucci L, Guralnik J, et al. Frailty: An emerging research and clinical prardigm - issues and controversies. The Journals of Gerontology Series A, Biological Sciences and Medical Sciences 2007; 62(7).
  5. Studenski S, Hayes R, Leibowitz R, et al. Clinical global impression of change in physical frailty: Development of a measure based on clinical judgment. Journal of the American Geriatrics Society 2004; 52(9): 1560-6.
  6. Lally F, Crome P. Understanding frailty. Postgraduate medical journal 2007; 83(975): 16-20.
  7. Fugate Woods N, LaCroix AZ, Gray SL, et al. Frailty: emergence and consequences in women aged 65 and older in the Women's Health Initiative Observational Study. Journal of the American Geriatrics Society 2005; 53(8): 1321-30.
  8. van Velsen L, Illario M, Jansen-Kosterink S, et al. A community-based, technologysupported health service for detecting and preventing frailty among older adults: a participatory design development process. Journal of aging research 2015; 2015.
  9. Health Council of Canada. How Do Sicker Canadians with Chronic Disease Rate the Health Care System? Results from the 2011 Commonwealth Fund International Health Policy Survey of Sicker Adults. Toronto: Health Council of Canada, 2011.
  10. Walston J, Hadley EC, Ferrucci L, et al. Research agenda for frailty in older adults: toward a better understanding of physiology and etiology: summary from the American Geriatrics Society/National Institute on Aging Research Conference on Frailty in Older Adults. Journal of the American Geriatrics Society 2006; 54(6): 991-1001.
  11. Sinha S. Caring for Unpaid Caregivers: Developing an Ontario Caregivers' Strategy. Circle of Care Meeting 2014 June 22, 2014.
  12. Sinha S. Living Longer, Living Well: Report Submitted to the Minister of Health and Long-Term Care and the Minister Responsible for Seniors on recommendations to Inform a Seniors Strategy for Ontario. Toronto: Ministry of Health and Long-Term Care, 2012.
  13. Leadership Collaborative. Advancing High Quality HVPCiO-DoPaCtA. Toronto, Canada, 2011.
  14. Canadian Cancer Action Network. Canada, a Caring Society: Action Table on Family Caregivers - Informed Dialogue Leading to Concrete Action for all Canadians. Toronto, Canada: Canadian Cancer Action Network, 2013.
  15. Crawford M, Rutter D, Manley C, et al. Systematic review of involving patients in the planning and development of health care. British Medical Journal 2002; 325(7375). 
  16. Dugas M, Shorten A, Dubé E, Wassef M, Bujold E, Chaillet N. Decision aid tools to support women's decision making in pregnancy and birth: a systematic review and meta-analysis. Social science & medicine 2012; 74(12): 1968-78.
  17. Edwards A, Evans R, Dundon J, Haigh S, Hood K, Elwyn G. Personalised risk communication for informed decision making about taking screening tests. Cochrane Database Syst Rev 2006; 4.
  18. O'Brien MA, Whelan TJ, Villasis-Keever M, et al. Are cancer-related decision aids effective? A systematic review and meta-analysis. Journal of Clinical Oncology 2009; 27(6): 974-85.
  19. Stacey D, Bennett CL, Barry MJ, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2011; 10(10).
  20. Abelson J, Montesanti S, Li K, Gauvin F-P, Martin E. Effective strategies for interactive public engagement in the development of healthcare policies and programs: Canadian Health Services Research Foundation Ottawa; 2010.
  21. Menon D, Stafinski T, Martin D, Windwick B, Singer P, Caulfield T. State of the Science Review: Incorporating Public Values and Technical Information into Health Care Resource Allocation Decision-Making. Edmonton, Canada: Alberta Innovates-Health Solutions 2003.
  22. Legg LA, Quinn TJ, Mahmood F, et al. Non-pharmacological interventions for caregivers of stroke survivors. Cochrane Database Syst Rev 2011; 10.
  23. Mason A, Weatherly H, Spilsbury K, et al. The effectiveness and cost-effectiveness of respite for caregivers of frail older people. J Am Geriatr Soc 2007; 55(2): 290-9.
  24. Mason A, Weatherly H, Spilsbury K, et al. A systematic review of the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their carers. Health Technol Assess 2007; 11(15): 1-157, iii.
  25. Shaw C, McNamara R, Abrams K, et al. Systematic review of respite care in the frail elderly. Health Technol Assess 2009; 13(20): 1-224, iii.
  26. Selwood A, Johnston K, Katona C, Lyketsos C, Livingston G. Systematic review of the effect of psychological interventions on family caregivers of people with dementia. Journal of affective disorders 2007; 101(1): 75-89.
  27. Zabalegui A, Hamers JP, Karlsson S, et al. Best practices interventions to improve quality of care of people with dementia living at home. Patient Educ Couns 2014; 95(2): 175-84.
  28. Marim CM, Silva V, Taminato M, Barbosa DA. Effectiveness of educational programs on reducing the burden of caregivers of elderly individuals with dementia: a systematic review. Revista latino-americana de enfermagem 2013; 21(SPE): 267-75.
  29. Corbett A, Stevens J, Aarsland D, et al. Systematic review of services providing information and/or advice to people with dementia and/or their caregivers. International journal of geriatric psychiatry 2012; 27(6): 628-36.
  30. Lee H, Cameron M. Respite care for people with dementia and their carers. Cochrane Database Syst Rev 2004; 2.

DISCLAIMER: The blogs are provided for informational purposes only. They are not a substitute for advice from your own healthcare professionals.

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