As our parents and grandparents grow older, the list of age-related diseases they are susceptible to lengthens. Strokes remain a leading cause of disability, and while approximately 17 per cent of stroke victims enter long-term institutional care, the majority are cared for at home by spouses and children. Strokes occur suddenly and most often without warning, transforming healthy people into shadows of themselves.
Strokes afflict about 1,340 out of every 100,000 people over the age of 65. Family members are left to cope with loved ones who are paralyzed, and suffer partial or total loss of motor control, hearing, or speech. Approximately 12.5 per cent of adult Canadians take care of parents or spouses in the community, while fully 20 per cent of Canadian women between 45 and 64 years old care for related stroke victims. In addition to their own busy lives, these “informal caregivers” manage their sick relative’s day-to-day activities such as banking, shopping, and medical appointments, and consequently experience elevated levels of emotional distress.
Jill Cameron, who presented her PhD thesis at U of T’s noontime psychology seminars last Thursday, focuses on symptoms of emotional distress in stroke victim caregivers. This presentation comprised the last of her three-part research project into the impact of stroke survivors’ behavioural and psychological symptoms on informal caregivers. She explains her motivation: “My father suffered a stroke…and is being cared for at home. I wanted to explore the issues of caring for a person who may have changed a lot.”
Cameron contrasts the repercussions of stroke or Alzheimer’s disease on a person. “Although Alzheimer’s disease can devastate [an individual’s future], it occurs gradually and family members have time to adjust. A stroke, however, can suddenly cause a lifestyle change, with close family members unprepared for the consequences.”
Cameron wanted to explore how caring for a stroke survivor will affect an informal caregiver’s emotions. This has implications for stroke survivors in terms of their rehabilitation prospects, and sustainability of quality home care by the caregiver. She is especially interested in any cognitive changes that may develop from the potential burden. Cameron’s study asked two main questions. First, do levels of emotional distress in informal caregivers change over time? And second, are there additional or predominant effects of caring for a stroke victim at home?
The study looked at people who had suffered one stroke, and their informal caregivers. Of 115 caregivers, 68 were spouses and 18 were adult children. The average stroke survivors’ age was 67.9 years, while the average caregiver’s age was 57 years. 57 per cent of the survivors were male.
Cameron’s study found that generally, emotional distress (ED) levels did not change over time. If caregivers initially felt stressed, they remained so over the two-year study. If they manifested a positive outlook soon after beginning to care for their loved one, they maintained it.
The more lifestyle interference caused by caring for a stroke victim, the greater the ED for the caregiver. In addition, the less control the caregiver exerts over his/her life, the greater the ED. Cameron found that in female caregivers with poor health, depression proved to be the most common result.
According to Cameron, her findings have several implications for stroke survivor caregivers. She recommends “professional intervention for those who suffer emotional distress, particularly if it is severe, clinical management of depression, and [breaks] for caregivers.”
Cameron looks forward to future projects where she can assess the physical health of stressed or unstressed informal caregivers, as well as focus on the positive aspects of care giving.
