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Caregiver Resources

Dealing with the Diagnosis

Ask the doctor any questions you have about Alzheimer's disease. Find out what treatments might work best to alleviate symptoms or address behavior problems. Support groups, where you can share your feelings and concerns, can also help. Group members often have helpful ideas or know of useful resources based on their own experiences. Online support groups make it possible for caregivers to receive support without having to leave home. 

Try to develop a routine that may make your day go more smoothly. If there are times of the day when the person with Alzheimer's is less confused or more cooperative, plan your routine to make the most of those moments. Keep in mind that the way she functions may change from day to day, so try to be flexible and adapt your routine as needed. Consider using adult day care or respite services to ease the day-to-day demands of caregiving. 

These services allow you to have a break while knowing that the person with Alzheimer's is being well cared for.

Finally, begin to plan for the future. This may include getting financial and legal documents in order, investigating long-term care options, and determining what services are covered by health insurance and Medicare.

Communication

When you speak with an Alzheimer’s patient, choose simple words and short sentences, and use a gentle, calm tone of voice. Don’t talk to the patient like he’s a baby, or talk about him as if he weren’t there. 

To help the Alzheimer’s patient focus on what you’re saying, limit distractions and noise. For example, turn off the radio or TV before you speak. It also helps to make eye contact and call him by name, making sure you have his attention before speaking. 

Always allow enough time for a response. Be careful not to interrupt. If he’s struggling to find a word or communicate a thought, it’s OK to gently try to provide the word he’s looking for. 

Try to frame questions and instructions in a positive way, and be open to his concerns, even if he’s hard to understand.

Bathing

Plan baths or showers for the time of day when the Alzheimer’s patient is most calm and agreeable. Be consistent. Try to develop a routine. 

Respect the fact that bathing is scary and uncomfortable for some people with Alzheimer's. Be gentle and respectful, patient and calm. Tell her what you’re going to do, step by step, and allow her to do as much as possible.

It helps to make sure you have everything you need ready and in the bathroom before beginning. Draw the bath ahead of time. Be sensitive to the temperature of the water and the room. Warm up the room beforehand if necessary and keep extra towels and a robe nearby. Test the water temperature before beginning the bath or shower. 

You can minimize safety risks by using a handheld showerhead, shower bench, grab bars and nonskid bath mats. Never leave her alone in the bath or shower. 

Consider sponge bathing. Bathing may not be necessary every day. A sponge bath can be effective between showers or baths.

Dressing

Try to have the person get dressed at the same time each day so he’ll come to expect it as part of his daily routine. Encourage him to dress himself as much as he can. Plan to allow extra time so there’s no pressure or rush. 

Allow him to choose from a limited selection of outfits. If he has a favorite outfit, consider buying several identical sets. Storing some clothes in another room to reduce the number of choices is a good idea. Keep only one or two outfits in the closet or dresser. 

Arrange clothing in the order it should be put on to help him move through the process. Hand him one item at a time and give clear, step-by-step instructions if he needs prompting. 

Choose clothing that is comfortable, easy to get on and off, and easy to care for. Elastic waists and Velcro® enclosures minimize struggles with buttons and zippers.

Eating

View mealtimes as opportunities for social interaction and success for the person with Alzheimer's. Try to be patient and avoid rushing, and be sensitive to confusion and anxiety she may experience. 

Aim for a quiet, calm, reassuring mealtime atmosphere by limiting noise and other distractions. Maintain familiar mealtime routines, but adapt to her changing needs. 

Give her food choices, but limit the number of choices. Try to offer appealing foods that have familiar flavors, varied textures and different colors. Serve small portions or several small meals throughout the day. Make healthy snacks, finger foods and shakes available. In the earlier stages of dementia, be aware that she may overeat. 

Choose dishes and eating tools that promote independence. If she has trouble using utensils, use a bowl instead of a plate, or offer utensils with large or built-up handles. Using straws or cups with lids can make drinking easier. 

Encourage her to drink plenty of fluids throughout the day to avoid dehydration. As the disease progresses, be aware of the increased risk of choking because of chewing and swallowing problems. 

Maintaining routine dental checkups and daily oral health care will keep her mouth and teeth healthy.

Activities

Don't expect too much. Simple activities often are best, especially when they use the Alzheimer’s patient’s current abilities. 

It usually works best if you help him get started on an activity. Break it down into small steps and praise him for each step he completes. Be sure to watch for signs of agitation or frustration with an activity. If this happens, gently help or distract him with something else. 

Incorporate activities he seems to enjoy into your daily routine and try to do them at a similar time each day. Try to include him in the entire activity process. For instance, at mealtimes, encourage him to help prepare the food, set the table, pull out the chairs or put away the dishes. This can help maintain functional skills, enhance his feelings of personal control, and make good use of time. 

As you can, take advantage of adult day services. These services provide appropriate activities, and an opportunity for caregivers to gain temporary relief from caregiving tasks. Transportation and meals often are provided.

Exercise

Encourage physical activity. Spending time outside when the weather permits is beneficial, and exercise often helps everyone sleep better. To get started, find physical activities you both enjoy - perhaps walking, swimming, tennis, dancing or gardening. Think about the time of day and place where this type of activity would work best. 

Be realistic in your expectations. Build slowly, perhaps just starting with a short walk around the yard, for example, before progressing to a walk around the block. Be aware of any discomfort or signs of overexertion. Talk to her doctor if this happens. 

Allow her as much independence as possible, even if it means a less-than-perfect garden or a scoreless tennis match. 

Look into exercise programs in your area. Senior centers often have group programs for people who enjoy exercising with others, and local malls sometimes have walking clubs and provide a place to exercise when the weather is bad. 

Incontinence

Have a routine for taking the Alzheimer’s patient to the bathroom and stick to it as closely as possible. For example, take him to the bathroom every 3 hours or so during the day. Don't wait for him to ask. 

Watch for signs that he may have to go to the bathroom, such as restlessness or pulling at clothes, and respond quickly to avoid accidents. 

Be understanding when accidents occur. Stay calm and reassure him if he’s upset. Try to keep track of when accidents happen to help plan ways to avoid them. You can help prevent nighttime accidents by limiting certain types of fluids, such as those with caffeine, in the evening. 

If you’re going to be out with him, plan ahead. Know where restrooms are located, and have him wear simple, easy-to-remove clothing. Take an extra set of clothing along in case of an accident.

Sleep Problems

Encourage exercise during the day and limit daytime napping, but make sure that she gets adequate rest during the day. Fatigue can increase the likelihood of late afternoon restlessness. Try to schedule physically demanding activities earlier in the day. For example, bathing could be done in the morning, or the largest family meal could be served at midday. 

Set a quiet, peaceful tone in the evening to encourage sleep. Keep the lights dim, eliminate loud noises, even play soothing music if she seems to enjoy it. It helps to develop a bedtime routine and keep bedtime at the same time every day. 

Other tips include limiting caffeine, and using night-lights in the bedroom, hall and bathroom. Darkness can be frightening or disorienting.

Hallucinations and Delusions

Sometimes hallucinations and delusions are signs of physical illness or a side effect of a medication. Keep track of what he’s experiencing and discuss it with his doctor. 

Don’t argue with him about what he sees or hears. It’s best to try to respond to the feelings he’s expressing, and to offer comfort if he’s afraid. Distracting him with another topic or activity can also help. Sometimes, moving to a different room or going outside for a walk may help, too. 

Turn off the television set when violent or disturbing programs are on. He may not be able to distinguish television programming or movies from reality. 

It’s important to make sure he’s always safe and doesn’t have access to anything he could use to harm anyone.

Wandering

Make sure she carries some kind of identification or wears a medical bracelet at all times, and consider enrolling her in the Alzheimer's Association Safe Return program. If she gets lost and can’t communicate, identification will help others know about her medical condition. 

Notify neighbors and local authorities in advance that she has a tendency to wander, and keep a recent photograph or video of her to help police if she becomes lost. 

To reduce the chances of wandering, keep doors locked and consider installing a keyed deadbolt or an additional lock up high or down low on the door. If she can open a lock because it’s familiar, a new latch or lock may help. “Announcing systems” that chime when the door opens are also a good idea. 

You can also place her shoes in a hidden area. Some Alzheimer’s patients are less likely to wander if they aren't wearing shoes.

Home Safety

Installing secure locks on all outside windows and doors, especially if he’s prone to wandering, is an important step. Be sure to remove the locks on bathroom doors to prevent him from accidentally locking himself in. 

Childproof latches on kitchen cabinets and anywhere cleaning supplies or other chemicals are kept is another important safety step. Label medications and keep them locked up, and make sure knives, lighters, matches and guns are secured and out of reach. It’s also important to keep the house free from clutter. Remove scatter rugs and anything else that might contribute to a fall. You’ll also want to make sure lighting is good both inside and outside the home. 

Be alert to and address kitchen-safety issues. For example, he may forget to turn off the stove after cooking. Consider installing an automatic shut-off switch on the stove to prevent burns or fire. 

Finally, be sure to secure or put away anything that could cause danger, both inside and outside the home.

Driving

Continuing driving when the Alzheimer’s patient is no longer capable is dangerous. Look for clues that safe driving is no longer possible, including getting lost in familiar places, driving too fast or too slow, disregarding traffic signs, or getting angry or confused. 

Losing the ability to drive can cause a lot of emotions. Be sensitive to her feelings, but be firm in your request that she no longer drive. Consistency is important - don't allow her to drive on "good days" but forbid it on "bad days." 

Ask her doctor to help. She may view her doctor as an authority and be willing to stop driving if the doctor makes the request. The doctor also can contact the Department of Motor Vehicles and request that she be reevaluated. 

If it becomes necessary, take the car keys. If just having keys is important to her, substitute a different set of keys. 

If all else fails, disable the car or move it to a location where she can’t see it or gain access to it. 

Ask family or friends to drive help drive her, or research services that help people with disabilities get around their communities.

Visiting the Doctor

Try to schedule appointments during the Alzheimer’s patient’s best time of day. Also, ask the office staff what time of day the office is least crowded. A less crowded office can help put him at ease. 

Let the office staff know in advance that he may be confused because of Alzheimer's disease. Ask them for help to make the visit go smoothly. Don't tell him about the appointment until the day of the visit or even shortly before it’s time to go. Be positive and matter-of-fact about it. If you bring along something for him to eat and drink, and any materials or activities that he enjoys, it often helps the visit go more smoothly. 

Consider having a friend or another family member go with you on the trip, so that one of you can be with the patient while the other speaks with the doctor. Take a brief summary listing his medical history, primary care doctor and current medications with you.

Coping with Holidays

Keep or adapt family traditions that are important to you. Include the person with Alzheimer's as much as possible. But also recognize that things will be different, and be realistic about what you can do. 

Encourage friends and family to visit. You’ll want to limit the number of visitors at one time, and try to schedule visits during the time of day when she’s at her best. 

Avoid crowds, changes in routine, and strange places because these things can cause confusion or agitation. At larger gatherings such as weddings or family reunions, try to have a space available where she can rest, be alone, or spend some time with a smaller number of people. 

The holidays should be a time of enjoyment for you, too. Try to find time for the holiday things you like to do. Don’t hesitate to ask a friend or family member to spend time with the Alzheimer’s patient while you’re out.

Visiting a Person with Alzheimer's Disease

Plan the visit for the time of day when the person with Alzheimer's is at his best. Consider bringing along an activity, such as something familiar to read or photo albums to look at, but understand you may need to skip it. 

Be calm and quiet. Avoid using a loud tone of voice or talking to him as if he’s a child. Respect his personal space, and try to establish eye contact and call him by name to get his attention. 

You’ll need to remind him who you are if he doesn't seem to recognize you. Don't argue if he’s confused. Respond to the feelings you hear being communicated, and distract him by changing the topic if necessary. 

Don’t take it personally if he doesn't recognize you, is unkind, or responds angrily. He’s only reacting out of confusion.

Choosing a Nursing Home

It's helpful to gather information about services and options before the need actually arises. This gives you time to fully explore all the possibilities before you have to make a decision. 

You’ll first need to determine what facilities are available. Doctors, friends and relatives, hospital social workers, and religious organizations may be able to help you identify specific facilities that can care for your loved one. 

Make a list of questions you’d like to ask the staff. Think about what’s important to you, such as activity programs, transportation or special units for people with Alzheimer's disease. Then contact the places that interest you and make an appointment to visit. Talk to the administration, nursing staff and residents.

While you’re there, observe the way the facility runs and how residents are treated. You may want to drop by again unannounced to see if your impressions are the same. Find out what kinds of programs and services they offer for people with Alzheimer's and their families. Ask about staff training in dementia care, and check to see what the policy is about family participation in planning patient care. 

Room availability, cost and method of payment, and participation in Medicare or Medicaid are other important details to check on. You may want to place your name on a waiting list even if you aren’t ready to make an immediate decision about long-term care. Once you’ve made a decision, be sure you understand the terms of the contract and financial agreement. You may want to have a lawyer review the documents with you before signing. 

Don’t forget that moving is a big change for both the person with Alzheimer's disease and the caregiver. A social worker may be able to help you plan for and adjust to the move. It’s important to have support during this difficult transition. 

Source: National Institute on Aging