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Parkinson's Caregivers at Risk for Deteriorating Health

   Portland, Ore.

OHSU study also finds increased strain among spouses of people with disease

An Oregon Health & Science University study shows the health of family caregivers should be as top of mind as that of Parkinson's disease patients.

The study by researchers at the OHSU Parkinson Center of Oregon found that people caring for spouses with Parkinson's disease, either at home or in a care facility, are at heightened risk for deteriorating health and well-being, as well significantly increased strain.

The investigators studied spouse-caregivers from early in the diagnosis of their spouses' Parkinson's disease and again 10 years later. The goal of the study was to identify early warning signs in families that would predict who is at greatest risk of caregiver strain, and the negative effect on health and depression.

The study of more than 150 spouse-caregivers of early-stage Parkinson's patients found that physical and mental health declined and strain increased dramatically over 10 years. The investigators also found that there were predictors early in the course of caregiving that might identify who was at greatest risk.

"As an example, caregivers who had bad health and depression to start with were more likely to have worse health and depression at the end of care giving," said study investigator Julie H. Carter, R.N., M.S., A.N.P., associate professor of neurology in the OHSU School of Medicine and associate director of the Parkinson Center of Oregon.

The findings suggest the health of family caregivers is paramount to the well-being of Parkinson's disease patients. And they may help researchers identify potential areas of early interventions to improve the health of both patients and caregivers.

"Families are an invisible part of health care. They provide tremendous support in delivering care and if something happens to that vital link, it makes the person with Parkinson's disease more vulnerable," Carter said. "So being concerned about the health of families ends up having incredible social and economic implications."

The study, "Family Caregiving in Parkinson's Disease (PD): A Ten-Year Follow-Up," was presented recently at the annual meetings of the Parkinson Study Group and the American Academy of Neurology.

The study is an eight-year follow-up to an assessment of more than 300 Parkinson's disease caregivers between 1992 and 1994 in what was called "The Parkinson's Spouse's Project." Using the project's data, the recent study aimed to predict changes in caregiver strain, depression and physical health from 1992 to 2002, and describe changes in caregiving and their connections to strain, depression, physical health, the quality of the relationship, and optimism and pessimism.

The recent study surveyed 156 of the original project participants: 105, or 67 percent, continued to care for spouses with Parkinson's disease at home; 11, or 7 percent, had spouses in a care facility, such as a nursing home; and 40, or 26 percent, were bereaved.

The study found that the health, strain, optimism and pessimism, and quality of the relationship - mutuality - deteriorated "significantly" over 10 years among the 105 caregivers with spouses at home.

"How depressed you are in 1992 explains a lot about what happens to your mental health long term, as does optimism and pessimism," Carter said. "If we identify caregivers early who have depression, we might be able to intervene early to treat their depression. Another option may be to teach people to be more optimistic."

Another notable finding is that mutuality is a risk factor for declining health.

"Mutuality is the quality of relationship itself between the patient and spouse - how much time they spend together, how much they enjoy each other, care for each other, how easy it is to be with each other," Carter explained. "We think high mutuality is protective against experiencing a lot of strain."

Carter said the lesson to be learned from the study is that families of Parkinson's disease patients suffer, too.

"It's not just the patient who has the disease. It's the family that has the disease," she said. "People with Parkinson's disease aren't isolated from their environment. Their environment is primarily their families and, therefore, the health of the family becomes critical in providing good health to the patient.

"We're interested in looking at the family experience as an interactive unit, as a dynamic thing. It's even having clinicians think about their patients from a family caregiving approach."

Carter's collaborators at the OHSU School of Nursing were: Karen S. Lyons, Ph.D., assistant professor of population-based nursing; Barbara J. Stewart, professor of population-based nursing; and Patricia G. Archbold, R.N., D.N.Sc., FAAN, professor and director, John A. Hartford Center of Excellence in Geriatric Nursing. The study was supported by the Medical Research Foundation and the Parkinson Study Group.

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