Alzheimer's Caregiving: Can You Help Too Much?
A common misperception is that most people with Alzheimer’s disease live in nursing homes or other care facilities. While supportive living communities provide a safe living environment for many people with dementia, the majority live at home, supported by our nation’s 15 million Alzheimer’s family caregivers.
Caregiving is a challenging, sometimes exhausting role. Caregivers do so much for their loved ones! They oversee their loved one’s well-being and health. They manage medical appointments and medications. But many report feeling unsure about the best way to handle the changes in their loved one’s abilities. Dementia care experts today are examining some of the ways that caregivers can promote independence and possibly even delay the progression of the disease.
In January, a Utah State University study suggested that dealing with the challenges of Alzheimer’s caregiving in a positive way is not only better for caregivers, but also slows the rate of cognitive decline in their loved ones. Beneficial strategies include stress management, maintaining a positive attitude, seeking social support, and problem-focused coping that emphasizes solutions. The study’s lead author Dr. JoAnn Tschanz said, “Problem-focused coping has been associated with less emotional distress among caregivers. Such strategies may help caregivers cope with the stress of dementia caregiving while curbing the progression of dementia in the patient.”
One of the great challenges reported by caregivers is uncertainty about how much assistance their loved one needs with everyday tasks. Can Mom make her own meals? Does Dad need help with shaving? Alzheimer’s caregivers assist their loved ones with many tasks—but a recent University of Alberta study found that well-meaning family members actually may undercut their loved one’s independence and sense of self-worth by helping too much.
Lead researcher Tiana Rust, Ph.D., says that in many cases, family caregivers underestimate the abilities of people with memory loss, and step in to perform tasks that their loved one is still capable of doing. Rust recounts the story of a man who lived at home with his wife, attending an adult day program at a nursing home during the day. Observing him at the center, his wife was surprised to see that he was able to perform tasks there that she had been doing for him at home. Says Rust, "The caregivers who believed that people with Alzheimer’s disease are more likely to be at risk for injury and are more accepting of help were more likely to be dependence-supportive than independence-supportive." She adds, "This suggests that caregivers are basing their behaviors partially on their beliefs rather than basing their behaviors on actual needs and the actual abilities of the people they’re interacting with."
In an experimental setting, Rust asked caregivers and Alzheimer’s patients to prepare a meal together. She found that caregivers would automatically perform various tasks that they believed their loved one couldn’t do, rather than providing less-intrusive assistance, such as reminders. "The task we had given the caregivers and the residents to do was to set the table, make grilled cheese sandwiches, mix juice and clean up afterwards," says Rust. "All of those tasks are quite big in themselves, but they can all be broken up into small activities. These are all small tasks that these people with Alzheimer’s disease were still capable of doing even though they might not have been able to do the full task."
Rust explains that over-helping can set up a "dependency support script," where the person receiving care internalizes the message that they are less capable. She advises, "People with Alzheimer’s disease have varying abilities, so it’s important to base interactions on the actual abilities of the person. Observing the person and gauging what they’re capable of before jumping in and supporting the dependence of the person is definitely important."
We all treasure our independence. And we now know that for people with Alzheimer’s, loss of independence not only damages self-worth but also can cause decline of function. The National Institute on Aging suggests that families make adaptations that preserve a sense of choice. When their loved one can no longer drive, the family might help them locate alternate transportation such as taxis or special transportation for people with disabilities. Home modifications and support services enable people with dementia to be safe at home as long as possible. And adapting your expectations may be the most important modification of all. When your loved one sets the table or makes lunch, things may not be perfect. But the process itself is empowering.
Visit the National Institute on Aging’s Alzheimer’s Disease Education and Referral Center for caregiving tips, including the booklet "Caring for a Person with Alzheimer’s Disease" that offers tips for preserving independence and lessening caregiver stress.