Most home care clients rely on informal care from spouse or child

One in six people providing informal care to seniors experiences distress, according to a new study released today by the Canadian Institute for Health Information (CIHI), and those caring for seniors with moderate to severe cognitive impairment, such as those with Alzheimer's or other dementia, are most at risk.

The first of two related studies released today, Supporting Informal Caregivers—The Heart of Home Care looked at more than 130,000 seniors (age 65 and older), including many with complex health conditions, who received publicly funded long-term home care in 2007-2008.

Virtually all (98%) of these home care clients also relied on an informal caregiver—a spouse, adult child, friend or neighbour who provided emotional support along with assistance in daily living activities, from shopping, transportation and medication management to bathing, dressing and feeding.

About 55% of seniors in the study—and three-quarters of those who were married—received informal care from a spouse, while almost 75% of those who were not married received care from an adult child.

"Many seniors want to stay in their own homes as they get older, and having a family member or friend provide informal care helps make this possible," says Nancy White, Manager of Home and Continuing Care Development at CIHI. "The good news is that most informal caregivers do appear to be coping well. While caring for a loved one can be fulfilling, it can also be quite challenging. It is important to identify caregivers who are at risk of burnout, which can result in the senior being institutionalized."

Using a standardized assessment tool, home care staff flag clients with a distressed caregiver if the caregiver is unable to continue providing care or if the caregiver expresses feelings of anger, depression or distress.

Severe impairment does not always result in seniors being admitted to residential care

The second study released today, Caring for Seniors With Alzheimer's Disease and Other Forms of Dementia, found that in 2007-2008, one in five seniors (20%) receiving long-term home care had a diagnosis of Alzheimer's disease or other dementia. Nearly one in six (17%) of these clients with dementia were suffering from moderate to severe impairment in cognition and daily functioning yet still managed to remain at home.

The study also found that one in six (17%) seniors with dementia living in residential care facilities (such as nursing or long-term care homes) in 2008-2009 had relatively low levels of impairment or could still perform basic functions quite well on their own. The odds of a senior with low impairment being placed in residential care were seven times more likely if the senior had a tendency to wander.

Marital status was also a factor in determining whether a senior with low impairment was newly admitted to a care facility rather than at home with home care. The odds of being institutionalized were nearly double for those who were not married, meaning they were widowed, divorced or single, compared to those who were married.

Spouses more likely to experience distress

Supporting Informal Caregivers—The Heart of Home Care found, when controlling for other factors, about one-quarter (25%) of people providing informal care to their spouse reported distress. Spouses were twice as likely to experience distress as other family members, such as adult children.

The study also showed the chances of a caregiver of a home care client experiencing distress were two and a half times greater for seniors receiving 21 or more hours of informal care weekly compared to those receiving 10 hours or less per week.

"It isn't unusual for spouses to experience distress when providing informal care to their partner. This can likely be attributed to the 24-hour nature of their role, a potential lack of understanding of the changes in their spouse's behaviour that are a result of the disease process and the fact that they may be seniors themselves," explains Kimberly Peterson, Vice President of Client Services with the Champlain Community Care Access Centre. "There are many strategies informal caregivers can use to help cope with distress. This includes accepting that there are events they cannot change, taking some time to do activities they enjoy and ensuring they get enough rest and sleep."

Cognition, depression, difficult behaviours linked to caregiver distress

After adjusting for other factors, the study found cognition problems in home care clients related to memory, understanding and decision-making were most strongly associated with caregiver distress. The odds of a home care client having a distressed caregiver were three times higher when the client had moderate to severe cognitive impairment, most often related to Alzheimer's or other dementia.

The study found the odds of having a distressed caregiver were nearly two to one for home care clients with symptoms of depression. Behaviours such as resisting care, conflict with family and friends, and socially inappropriate conduct were also significantly associated with caregiver distress.

While a small number of seniors in home care displayed aggressive behaviour, such as verbal or physical abuse, more than half (52%) of these had caregivers indicating some form of distress, a rate almost three times higher than the study average.

Quick facts on caregivers

• Virtually all (98%) of the seniors in the study who were receiving home care also had an informal caregiver, and nearly one in six (16%) seniors had caregivers experiencing distress.
• Among married clients, the primary caregiver was most often the spouse (75%); adult children were the most common primary caregivers for non-married clients (75%).
• The odds of having a distressed caregiver were more than three times greater among seniors with cognition problems, such as forgetfulness or confusion, compared with those caring for seniors without these problems.
• The odds of having a distressed caregiver were two and a half times greater for seniors receiving 21 or more hours of informal care weekly, compared with those receiving 10 hours or less.
• The odds of clients with symptoms of depression having a distressed caregiver were nearly two to one, compared to those who were not depressed.
• While the overall numbers of seniors displaying aggressive behaviours—including physical and verbal abuse—was low, more than half (52%) of these had caregivers indicating distress.

Quick facts on Alzheimer's and other dementia

• One in five seniors (20%) living at home with home care had a diagnosis of Alzheimer's disease and/or dementia.
  -   Of these, one in six (17%) were managing at home with high levels of impairment in basic mental
      and physical functions.
• Three in five seniors (57%) living in residential care (a nursing or long-term care home) had a diagnosis of Alzheimer's disease and/or dementia.
  -   Of these, one in six (17%) had low levels of impairment or could still perform basic functions quite
      well on their own.
• The odds of a senior with low impairment being placed in residential care rather than home care were seven times higher when the person was wandering and nearly twice as high if he or she wasn't married.