Caring for a person with Alzheimer disease at home is a difficult task. Basic activities of daily living — eating, talking, sleeping, finding things to do — often are hard to manage for both the person with Alzheimer disease and the caregiver. Here are some tips that may help you cope.
What to do all day? Finding activities that the person with Alzheimer disease can do and is interested in can be a challenge. Building on existing skills generally works better than trying to teach something new.
- Don't expect too much. Simple activities often are best, especially when they use current abilities.
- Help the person get started on an activity. Break the activity down into small steps and praise the person for each step he or she completes.
- Watch for signs of agitation or frustration with an activity. Gently help, or distract the person to something else.
- Incorporate activities the person seems to enjoy into your daily routine and try to do them at a similar time each day.
- Take advantage of adult day services, which provide various activities for the person with Alzheimer disease as well as an opportunity for caregivers to gain temporary relief from tasks associated with caregiving. Transportation and meals often are provided.
Trying to communicate with a person who has Alzheimer disease can be a challenge. Both understanding and being understood may be difficult.
- Choose simple words and short sentences and use a gentle, calm tone of voice.
- Avoid talking to the person like a baby or talking as if he or she weren't there. Minimize distractions and noise, such as the television or radio, to help the person focus on what you are saying.
- Call the person by name, making sure you have his or her attention before speaking. Allow enough time for a response. Be careful not to interrupt.
- If the person with Alzheimer disease is struggling to find a word or communicate a thought, gently try to provide the word he or she is looking for.
- Try to frame questions and instructions in a positive way.
Eating can be a challenge. Some people with Alzheimer disease want to eat all the time, while others have to be encouraged to maintain a good diet. Ensure a quiet, calm atmosphere for eating. Limiting noise and other distractions may help the person focus on the meal.
- Provide a limited number of choices of food and serve small portions. You may want to offer several small meals throughout the day in place of three larger ones.
- Use straws or cups with lids to make drinking easier. Substitute finger foods if the person struggles with using utensils. Using a bowl instead of a plate also may help.
- Have healthy snacks on hand. To encourage eating, keep the snacks where they can be seen.
- Visit the dentist regularly to keep mouth and teeth healthy.
For the exhausted caregiver, sleep can't come too soon. For many people with Alzheimer disease, however, nighttime may be a difficult time. Getting the person to go to bed and stay there may require some advance planning.
- Set a quiet, peaceful tone in the evening to encourage sleep. Keep the lights dim, eliminate loud noises and even play soothing music if the person seems to enjoy it.
- Try to keep bedtime at a similar time each evening. Developing a bedtime routine may help.
- Encourage exercise during the day and limit daytime napping.
- Restrict access to caffeine late in the day.
- Use nightlights in the bedroom, hall and bathroom if the darkness is frightening or disorienting.
While some people with Alzheimer disease don't mind bathing, for others, it is a frightening, confusing experience. Advance planning can help make bath time better for both of you.
- Plan the bath or shower for the time of day when the person 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 disease. Be gentle and respectful. Be patient and calm.
- Tell the person what you are going to do, step by step, and allow him or her to do as much as possible.
- Prepare in advance. 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. 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.
- Minimize safety risks by using a hand-held showerhead, shower bench, grab bars and non-skid bathmats. Never leave the person alone in the bath or shower.
- Try a sponge bath. Bathing may not be necessary every day. A sponge bath can be effective between showers or baths.
For someone who has Alzheimer disease, getting dressed presents a series of challenges: choosing what to wear, getting some clothes off and other clothes on, and struggling with buttons and zippers. Minimizing the challenges may make a difference.
- Try to have the person get dressed at the same time each day so he or she will come to expect it as part of the daily routine. Encourage the person to dress himself or herself to whatever degree possible. Plan to allow extra time so there is no pressure or rush.
- Allow the person to choose what he or she will wear from a limited selection of outfits. If he or she has a favorite outfit, consider buying several identical sets.
- Arrange the clothes in the order they are to be put on to help the person move through the process.
- Provide clear, step-by-step instructions if the person 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.
As the disease progresses, many persons with Alzheimer disease begin to experience incontinence, or the inability to control their bladder and/or bowels. Incontinence can be upsetting to the person and difficult for the caregiver. Sometimes incontinence is due to physical illness, so be sure to discuss it with the person's doctor.
- Have a routine for taking the person to the bathroom and stick to it as closely as possible. For example, take the person to the bathroom every three hours or so during the day. Don't wait for the person to ask.
- Watch for signs that the person may have to go to the bathroom, such as restlessness or pulling at clothes. Respond quickly.
- Be understanding when accidents occur. Stay calm and reassure the person if he or she is upset. Try to keep track of when accidents happen to help plan ways to avoid them.
- To help prevent nighttime accidents, limit certain types of fluids — such as those with caffeine — in the evening. If you are going to be out with the person, plan ahead. Know where restrooms are located and have the person wear simple, easy-to-remove clothing. Have an extra set of clothing along in case of an accident.
For many caregivers, the time will come when they are no longer able to take care of their loved one at home. At this point the person with Alzheimer disease will have to move to a place where care is available around the clock. There are two types of residential care: assisted living and skilled nursing facilities.
Assisted-living arrangements are available in large apartment or hotel-like buildings or can be set up as a "board and care" home for a small number of people. They offer different levels of care but often include meals, recreation, security and help with bathing, dressing, medication and housekeeping.
Skilled nursing facilities — or nursing homes — provide 24-hour services and supervision. They provide medical care and rehabilitation for residents who are mostly very frail or suffer from the later stages of dementia.
Sometimes, health care providers offer different levels of care at one site. These "continuing care communities" often locate an assisted-living facility next to a nursing home so that people can move from one type of care to another if necessary. Several offer programs for couples, trying to meet needs when one spouse is doing well but the other has become disabled.
Choosing a residential care facility — a nursing home or an assisted living facility — is a big decision, and it can be hard to know where to start.
It's helpful to gather information about services and options before the need actually arises. This gives you time to explore fully all the possibilities before making a decision. The Administration on Aging has a toll-free number for its Eldercare Locator: 1-800-677-1116.
- Determine what facilities are in your area. Doctors, friends, relatives, hospital social workers and religious organizations may be able to help you identify specific facilities.
- Make a list of questions you would like to ask the staff. Think about what is important to you, such as activity programs, transportation or special units for people with Alzheimer disease.
- Contact the places that interest you and make an appointment to visit. Talk to the administration, nursing staff and residents. 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 are offered for people with Alzheimer disease and their families. Ask about staff training in dementia care, and check to see what the policy is about family participation in planning personal care.
- Check on room availability, cost and method of payment, and participation in Medicare or Medicaid. You may want to place your name on a waiting list even if you are not ready to make an immediate decision about long-term care. Once you have 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.
Moving is a big change for both the person with Alzheimer disease and the caregiver. A social worker may be able to help you plan for and adjust to the move. It is important to have support during this difficult transition.
Visitors are important to people with Alzheimer disease. The person may not always remember who the visitors are, but just the human connection has value. Here are some ideas to share with someone who is planning to visit a person with Alzheimer disease.
- Plan the visit at the time of the day when the person is at his or her best. Consider bringing along some kind of activity, such as something familiar to read or photo albums to look at, but be prepared to skip it if necessary.
- Be calm and quiet. Avoid using a loud tone of voice or talking to the person as if he or she were a child. Respect the person's personal space and don't get too close.
- Try to establish eye contact and call the person by name to get his or her attention. Remind the person who you are if he or she doesn't seem to recognize you.
- If the person is confused, don't argue. Respond to the feelings you hear being communicated and distract the person to a different topic if necessary.
- If the person doesn't recognize you, is unkind or responds angrily, remember to not take it personally. He or she is reacting out of confusion.
Safety is an important issue in caring for a person with Alzheimer disease. Even with the best-laid plans, accidents can happen. Checking the safety of your home, keeping the person from wandering and preventing him or her from driving when driving skills decline are some ways you can minimize hazardous situations.
Caregivers of people with Alzheimer disease often have to look at their homes through new eyes to identify and correct safety risks. Creating a safe environment can prevent many stressful and dangerous situations.
- Install secure locks on all outside windows and doors, especially if the person is prone to wandering. Remove the locks on bathroom doors to prevent the person from accidentally locking himself or herself in.
- Use child-proof latches on kitchen cabinets and any place where cleaning supplies or other chemicals are kept.
- Label medications and keep them locked up. Also make sure knives, lighters and matches, and guns are secured out of reach.
- Keep the house free from clutter. Remove scatter rugs and anything else that might contribute to a fall. Make sure lighting is good both inside and out.
- Consider installing an automatic shut-off switch on the stove to prevent burns or fire.
Keeping the person safe is one of the most important aspects of caregiving. Some people with Alzheimer disease have a tendency to wander away from their home or their caregiver. Knowing what to do to limit wandering can protect a person from becoming lost.
- Make sure that the person carries some kind of identification or wears a medical bracelet. If he or she gets lost and is unable to communicate adequately, this will alert others to his or her identity and medical condition. Keep a recent photograph or videotape of the person to assist police if the person becomes lost.
- Keep doors locked. Consider a keyed deadbolt or an additional lock up high or down low on the door. If the person can open a lock because it is familiar, a new latch or lock may help.
- Secure or put away anything that could cause danger, both inside and outside the house.
Making the decision that a person with Alzheimer disease is no longer safe to drive is difficult, and it needs to be communicated carefully and sensitively. Even though the person may be upset by the loss of independence, safety must be the priority.
- 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.
- Be sensitive to the person's feelings about losing the ability to drive, but be firm in your request that he or she no longer do so. Be consistent — don't let the person drive on "good days" but forbid it on "bad days."
- Ask the doctor to help. The person may view the doctor as an "authority" and be willing to stop driving. The doctor also can contact the Department of Motor Vehicles and request that the person be re-evaluated.
- If necessary, take the car keys. If just having keys is important to the person, substitute a different set of keys. If all else fails, disable the car or move it to a location where the person cannot see it or gain access to it.
Finding out that a loved one has Alzheimer disease can be stressful, frightening and overwhelming. As you begin to take stock of the situation, here are some tips that may help.
- Ask the doctor any questions you may have about Alzheimer disease. Find out what treatments might work best to alleviate symptoms or address behavior problems.
- Contact organizations such as the Alzheimer’s Disease Education and Referral Center, or ADEAR, for more information about the disease, treatment options and caregiving resources. You can call ADEAR at 1-800-438-4380 or visit the Web site at www.alzheimers.org. Some community groups may offer classes to teach caregiving problem solving and management skills.
- Find a support group where you can share your feelings and concerns. Members of support groups 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.
- Study your day to see if you can develop a routine that makes things go more smoothly. If there are times of day that the person is less confused or more cooperative, plan your routine to make the most of those moments. Keep in mind that the way the person 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 disease is being well cared for.
- 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.
Source: National Institute on Aging, National Institutes of Health
September 30, 2004