Alzheimer's caregiving: Day-to-day challenges

Bath time, mealtime, and bedtime are among the hardest parts of the day. Here are some ways to get through them.

Alzheimer's disease has a profound emotional impact on the family members who must cope with a loved one's irrevocable decline. There are many legal and financial issues that need to be addressed as quickly as possible, but family members often report that the day-to-day challenges of caring for someone with Alzheimer's weigh far more heavily.

It's important to remember that the abilities of a person with Alzheimer's disease can fluctuate from day to day and even from hour to hour, for the same reasons that abilities fluctuate in healthy people: fatigue, anxiety, discomfort, illness, or medication effects. Uneven loss of abilities can be especially confusing. Someone with Alzheimer's may be able to perform some complex tasks better than simple ones, and family members may wrongly attribute this to "not trying hard enough" or being deliberately uncooperative.

People with Alzheimer's may be able to manage certain self-care tasks early on, but they will require more and more help as the disease progresses. Whether you are the primary caregiver or assisting someone who is, several strategies can help improve quality of life for both you and your loved one. Here are some tips for coping with daily routines:

Communication. Be patient. Use simple phrases and short sentences, but don't talk to the person as if he or she were a child. Begin by saying his or her name. Be sure you have your loved one's attention. Allow him or her to complete a sentence or thought without interrupting.

Bathing. Follow familiar routines as much as possible. Lay out towels, soap, shampoo, and clothes in advance, and have the bath or shower water at the right temperature before bringing the individual into the bathroom. Don't discuss whether a bath is needed. If he or she refuses to get into the tub or shower, suggest an alternative, such as a washcloth and bowl of warm water. Encourage as much self-care as possible, minimizing hands-on help. Talk your loved one through each step. If all else fails, try again later.

Dental care. Prepare the toothbrush, and demonstrate how to brush. If the person won't brush or refuses help, try a foam applicator or a cloth moistened with mouthwash.

Dressing and grooming. Keep grooming simple to avoid frustration, while trying to accommodate your loved one's past grooming habits. Help him or her to dress at the same time each day. Choose clothing that she or he can manage easily without assistance; avoid buttons, hooks, snaps, and ties. Lay out clothing in the order it will be put on. To avoid confusion or disagreements, clear closets and drawers of clothes that are out of season, inappropriate, or seldom worn. Avoid shoes with slippery soles, pants or dresses that are too long, and sleeves that could catch on doorknobs.

Mealtimes. To reduce confusion at meals, make sure the area is well-lit; use a plate color that contrasts with the food; and remove condiments from the table. Curved spoons, divided plates, and straws may help and can make self-feeding more manageable. Cut food into small pieces. (If she or he chokes easily, switch to soft foods.) If your loved one plays with the food, it may mean that he or she has too many choices: try putting one utensil on the table and one food on the plate at a time.

Toileting. To make the bathroom easy to find, put a colorful sign or reflective tape on the door. Buy slacks and pants with elastic waists, which are easier to manage than snaps and buttons. Record when the person urinates and has bowel movements, and remind him or her to use the bathroom at these times. Restlessness or agitation may be a sign of bladder or rectal fullness. Help the person get into a comfortable position on the toilet. Restrict fluids two hours before bedtime; you may also find that a commode or urinal bottle at the bedside is helpful. Use incontinence aids such as disposable briefs and pads to protect furniture. Try to be calm and understanding when accidents occur.

Sleeping. Discourage long naps during the day, and limit caffeine intake after 1 p.m. An afternoon walk or other exercise may improve nighttime sleep. Sleeping areas should be quiet and dim but not completely dark. Keep a night light on in the bedroom and bathroom.

Activity. Some people with Alzheimer's disease still enjoy a meal out or a social gathering, but others can become overstimulated or anxious. Observe how much activity your loved one can tolerate. Do you see signs that he or she is becoming frustrated? If so, offer help or try redirecting his or her attention to another activity. Provide opportunities for exercise, outdoor walks, and rides in the car. Concentrate on variations of activities your loved one enjoyed before becoming ill. For example, you might ask someone who loved cooking to help wash the vegetables.