Caring for People with Dementia

By Ken Hepburn, Ph.D.
(Sept. 20, 2004; Reviewed Nov. 15, 2005)

It can be stressful to care for a spouse, parent, or relative with dementia. As you watch, the person you love slowly slips away. Short-term memory goes early on. Gradually the person is less and less able to care for him or herself. Finally the world is alien, and the person just can’t function in it.

About 90 percent of dementia cases are caused by Alzheimer’s disease or vascular dementia (a series of small strokes), or the two in combination. Dementia affects all thinking abilities. Caregivers have to learn that they can’t rely on the person’s memory or expect the person to watch out for his own safety or to understand concepts like tomorrow or next week. Repeated questions, expectations about seeing people who are no longer living, accusations, and forgetting who’s who in the family—these are all part of the picture. Perhaps most wearing: each day is new, and the caregiver has to help the person through it anew.

People with dementia are confused, often frightened. Caregivers help the person feel secure and in control, even as they progress further into the disease. Finding tasks or activities they enjoy can keep the person’s mind off of the loss of control they might feel and may help keep the person calm. Helping with chores, doing a puzzle, folding laundry, listening to music, or drying dishes are some examples of repetitive activities that a person with dementia might enjoy.

As the disease progresses, the caregiver has to adjust expectations to increase satisfaction and avoid frustration, as well as strategies for activities and communication. Early on, a normal verbal request, such as “Please fold the laundry,” will work. Later, it might be effective to bring the person to the laundry room and ask her to put the clean clothes into a basket, but a demonstration might work even better than words. Still later, it might work to put the dried towels in front of the person and demonstrate how to make a simple fold.

Caregivers should take advantage of resources that exist to help them. Ask the doctor or nurse practitioner who cares for the person for advice and referrals for occupational, recreational, and music therapists, professionals who can assess the person’s needs and suggest appropriate activities. Get help by getting other family members more involved.

Caregivers need breaks. The Alzheimer’s Association can provide referrals for adult day care, home health care, or longer-term respite care. For more information, call the Alzheimer’s Association at 1-800-272-3900. Or dial 211, a United Way program that provides referrals to human services for every day needs and in times of crisis. Caregivers don’t have to handle this situation alone.