As America ages and baby boomers become caregivers, this new social structure dramatically changes everyday life and family relationships. In particular, 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 are fraught with a tug-of-war of emotions from resentment to protectiveness.
Research from Case Western Reserve University found that caregivers in the early stages of caring for a spouse or adult child with Alzheimer’s fluctuate between experiencing resentment to protectiveness and other emotions in between. The emotions influenced family members to take on new and more responsibilities, such as helping out with housekeeping tasks and balancing checkbooks.
Little had been known about what happens in the everyday lives and in relationships in very early stages of the caregiving. The study examined the changing dynamics of family relationships through interviews with the spouses and children of individuals with dementia.
The study pointed out that many families are reluctant to seek help until a crisis happened that forced the family to seek services. It can take some families up to two years before asking for that outside help. 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.
The research reported that many family members began to take on more responsibilities-many tasks they had not done before. Caregiving early on was 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 toward 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. The results of the study help validate that what families are experiencing is normal for those individuals thrust into the caretaker role.
Maureen A. Wendt is president and CEO of The Dale Association, a non-profit organization that provides senior, mental health, in-home care, caregiver support services and enrichment activities for adults. For more information, call 716-433-1937 or visit www.daleassociation.com.
