Caregivers Of Stroke Survivors Also Struggle, Say Researchers

August 06, 1998

DALLAS, Texas, Aug. 7, 1998 -- Recovery from stroke is a difficult road for both stroke survivors and their caregivers. A new study in an American Heart Association journal found that caregivers may experience unacceptably high levels of burden, leading to isolation and exhaustion.

"While caregivers have to cope with the devastating effects that stroke has on their friends or family members, it also increases the demands on them," says the study's lead author, Wilma Scholte op Reimer, M.D., of the department of social medicine, Academic Medical Center, University of Amsterdam, the Netherlands. "They need to provide emotional support or assist the patient in activities of daily living."

Dutch researchers studied 115 caregivers -- ranging from spouses to children to friends -- to determine the most stressful characteristics of the process of caring for someone who has suffered a stroke. The scientists say the results may help health professionals provide better advice and support for caregivers of stroke survivors.

"Caregivers not only experience burden, but they may also experience gains as a result of caregiving," says Reimer. "Pride, gratification, a closer feeling to their loved one --these are positive things that develop when one cares for another."

In a study in this month's Stroke: Journal of the American Heart Association, Reimer and her colleagues report that a caregiver's feelings, such as emotional distress and loneliness, coupled with personal disability and lack of psychosocial support add to the burden experienced by caregivers. They found it was more the caregiver's concerns about caring for the stroke survivor and the social isolation of doing so, rather than the stroke survivor's situation which resulted in the greatest burden for the caregiver.

"While the contribution made by caregivers of stroke survivors is substantial, this does not happen without consequences for their own health and interference with their own lives," says Reimer. "It is important that medical professionals are aware of this. Appropriate advice and support may greatly help caregivers, which can help them enable patients to live longer and better."

Researchers examined the factors of burden in the 115 caregivers -- 77 percent of whom were women -- three years following the stroke. Factors of burden for stroke survivors were socioeconomic status, severity and type of stroke, disability and unmet care demands. For caregivers, the factors were age, sex, disability, quality of life, loneliness, amount of care provided, and unmet care demands.

According to the scientists, caregivers had feelings of heavy responsibility, uncertainty about needs of stroke survivors, constant worries, reduced social lives and feelings that survivors rely on only the care of partners. The five most common concerns voiced by caregivers to researchers were: "Knowledge of these concerns may be useful to identify of caregivers at risk for high levels of burden and may enhance the understanding of how best to alleviate the burden of caregivers," says Reimer.

The American Heart Association offers a program called Stroke Connection for people recovering from a stroke and for their caregivers. Stroke Connection is a grassroots network of alliances, coalitions, outreach activities and support groups dedicated to improving the quality of life for stroke survivors and caregivers. People can call toll-free (1-800-553-6321) to get more information.

Co-authors are R.J. de Haan, R.N., Ph.D.; P.T. Rijnders, M.Sc.; M. Limburg, M.D., Ph.D.; and G.A.M. van den Bos, Ph.D.

NR 98-4932 (Stroke/Reimer)

American Heart Association

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