The escalating number of people with age-related chronic diseases and conditions has given rise to another staggering statistic: the number of unpaid family caregivers. In Canada alone, more than eight million people – or 28% of the population aged 15 and over – provide care to older adult family members or friends (1).
While it may be a “labour of love” for some, it can be hard labour nonetheless. The stress and burden of caregiving can take a toll and impact caregivers’ physical and psychological health (2,3). Often, depleted caregivers are eventually faced with the realization that they can no longer provide adequate care and support.
Then what? There is a commonly held belief that caregiver stress is a key factor in whether those receiving care are admitted to nursing homes or other long-term care facilities (4,5). But is it true? This question was the focus of a recent systematic review, including 54 studies and close to 92,000 participants (6). The focus was on people 65 years and older with chronic care needs, living in the community and being cared for by an informal (usually family) caregiver. Various aspects of caregiver stress (anxiety, depression, burnout, strain, burden, or distress) were measured to see if there was an association between caregiver stress levels and the decision to move care recipients into long term care.
What the research tells us
Contrary to widespread belief, the study results showed that caregiver stress actually had very little impact on whether and when the people they care for were admitted to long term care. While caregiver stress may be one factor, it didn’t appear to be the deciding one. Instead, people were more likely to be admitted to long-term care if they had severe functional and cognitive impairments (e.g. dementia), were living with multiple chronic conditions or taking multiple medications, or previously spent time in a hospital or other care facility.
Although the evidence is interesting and useful – particularly in demonstrating how research can disprove common assumptions – the review authors make the following additional comments:
The study findings do not in any way minimize the stress associated with caregiving and the potential harmful effects on family members providing care to elderly loved ones.
Results will vary depending on where people live and the healthcare systems that oversee professional assessments, the number of available long-term care beds, and the criteria for how they are allocated.
The importance and value of informal/family caregivers cannot be overstated – not only in terms of their service to their loved ones, but in taking pressure off overloaded health care systems. Continued research and efforts aimed at supporting family caregivers is a step in the right direction.
What a caregiver tells us
Barb is an informal caregiver who can relate to the challenges and conflicting emotions involved in the decision to transition loved ones into long term care. Her parents recently moved in with her when - due to his own health limitations - her father could no longer continue as the sole caregiver for her mother who has dementia.
Since then, Barb has faced her share of caregiver stress. “The ongoing worry about the health of my parents, and my mother’s frequent, intense outbursts have put me in a constant state of anxiety,” she says. Although a home office helps her juggle both work and caregiving demands, “It is extremely difficult to concentrate on work,” she has found, “And I regret having to miss so many social opportunities and chances to relax.”
The family has been assessed as “in crisis” and her parents are now on the wait list for long term care placement. Although caregiver stress has contributed to this decision, Barb mentions other factors which held equal or greater importance:
Caregiving skills: Without adequate training, Barb feels she and her father “are not well equipped to handle the most challenging of the behaviours” related to her mother’s dementia.
Caregiving respite / support: Barb is fortunate to have family members nearby to provide some respite. “They help by calling or visiting in order to give me a break.” She has recently arranged for some private home support and taken advantage of assistance from crisis response counselors, the local Alzheimer’s Society, doctors/geriatricians and day program staff.
Emotional impact on those receiving care: “My mother does not believe there is anything wrong with her and will very likely be even more distraught about going to a nursing home. I tried to find other solutions and ways to cope with the situation before taking that difficult step.”
Health impacts on those receiving care: Barb feels that her mother “is not receiving the care and medications that might help address some of the symptoms of the disease. My father’s stress and lack of proper rest is taking a toll on his health and recently prompted a trip to the emergency room.”
Barb's advice to caregivers is clear: Don’t suffer in silence and don’t do it alone! Talk to professionals, friends, family and other caregivers to share information and find out about local supports and services. Accept offers of help and arrange for respite whenever and however you can.