Study finds caregivers of spouses with dementia report sadness and loneliness

Spouses of husbands and wives with dementia pay an emotional toll as they care for their ailing spouse. This has prompted a call for new interventions and strategies to assist caregivers in coping with the demands of this difficult time, according to a study from Case Western Reserve University's Mandel School of Applied Social Sciences.

"Caregivers have a long exposure to stresses and losses from the dementia and fatigue that comes from caring for their spouses, so they experience fewer positive emotions," said Kathryn Betts Adams, assistant professor of social work at the Mandel School. "Some may have feelings of guilt about participating in activities with friends or in the community when their loved ones are no longer able to do so."

Adams added that caregivers also report sadness and loneliness.

While prior studies have shown that caregiving can be a factor in diagnosing depression, Adams analyzed data from spouse caregivers and compared their responses to non-caregivers at the symptom level to determine which symptoms were especially common.

Findings from the research study of 391 caregivers and 226 non-caregivers from the Case Western Reserve University/University Hospitals Alzheimer's Disease Research Center are described in the Journal of International Psychogeriatrics article, "Specific Effects of Caring for a Spouse with Dementia: Differences in Depressive Symptoms between Caregiver and Non-Caregiver Spouses."

After factoring out age, gender, education and income levels and race, some 25 percent of caregivers suffered from depression in contrast to only five percent of non-caregivers studied, said Adams. The caregivers were most notably different from the non-caregivers in their lack of positive emotions such as happiness or hopefulness.

The study's participants resided with their spouses. Of the spouses with dementia, approximately half had mild dementia, with 37 percent in stages of moderate to severe dementia. Only 23 percent of those questioned did not feel burdened by the responsibilities of caring for their spouses, but the remaining spouses reported feeling mildly to severely burdened.

Adams suggested that caregivers might benefit from support groups that "normalize" the emotions that surface while watching the dementia of their loved ones worsen. They can also be taught caregiving and decision making skills and given "permission" to increase pleasurable activities and engage in self-care.