Relationships in the early onset of dementia

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The early stages when a spouse or an adult child becomes a caregiver for someone with Alzheimer's disease or another type of progressive dementia is fraught with a tug-of-war of emotions from resentment to protectiveness, according to a new study from the Mandel School of Applied Social Sciences at Case Western Reserve University.

"Little has been known about what happens in the everyday lives and in relationships in very early stages of the caregiving," said Kathryn Betts Adams, assistant professor of social work.

Adams examined the changing dynamics of familial relationships in the early onset of dementia. Her findings appear in the article, "The Transition to Caregiving: The Experience of Family Members Embarking on the Dementia Caregiving Career," in the November issue of the Journal of Gerontological Social Work.
She got a glimpse into the lives of these families through interviews with the spouses and children of individuals with dementia, through a study funded by the National Institute on Aging. Adams pointed out that many families are reluctant to see help until a crisis arises and forces the family to seek services. It can take some families up to two years before asking for that outside help. "At work in this early stage," Adam said, "there seems to be a strong desire to keep things as they were, to stick with familiar routines as much as possible, and to manage without resorting to obtaining extra help."

The role of caregiver begins when at least one daily task needs to be done for the care recipient. That can be a reminder to take a shower or to do a simple task the individual always performed. Adams reported that many family members began to take on more responsibilities - many they have not done before such as wives balancing checkbooks that once were husbands' responsibility and husbands taking on housekeeping tasks like doing dishes and laundry. She found that the early stage of caregiving is marked by many struggles with negotiating care and decision-making and that taking over responsibilities is not a smooth process for many caregivers.

Throughout the interviews, family members reported experiencing frustration, resentment, grief and loss of intimacy while at the same time increasing protectiveness and tenderness towards the person experiencing the dementia. The spouses also began to mourn the loss of their intimacy with their partners as roles shifted from a marital to caregiving. This information will enable social workers to help families transition and understand that what they are experiencing is normal for those individuals thrust into the caretaker role, said Adams. She added that social workers can also find ways to help individuals diagnosed with cognitive impairment to find ways to lead as normal a life as possible.