Home Care

Caring for a person with Alzheimer's disease at home is a difficult task. Basic activities of daily living -- eating, talking, sleeping, finding things to do -- are often hard to manage for both the person with Alzheimer's and the caregiver. Here are some tips that may help you cope.

Home Care - Daily Activities

What to do all day? Finding activities that the person with Alzheimer's 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's 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's 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's 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's 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's, 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, 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.

1. Activities for a person with Alzheimer's disease should be broken down into small steps.

2. It is best to provide a person with Alzheimer's with a wide variety of food choices at each meal.

3. When communicating with someone with Alzheimer's, it is a good idea to speak loudly and use baby talk.

4. If a person with Alzheimer's disease has trouble sleeping at night, the caregiver should try to keep bedtime to a similar time each evening.

While some people with Alzheimer's 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's 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's, 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's 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 3 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.

1. For those persons with Alzheimer's disease who find bathing a confusing experience, it is best to tell the person what you are going to do, step by step, and allow him or her to do as much as possible.

2. Caregivers should let persons with Alzheimer's disease draw their own baths.

3. To make dressing easier, a person with Alzheimer's should have a limited number of outfits to choose from.

4. The caregiver should wait until the person with Alzheimer's asks to go to the bathroom instead of following a set schedule for bathroom visits.

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's 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, or AOA, 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's.

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's 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's 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's. 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's 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.

1. The best time to place a relative with Alzheimer's in residential care is immediately after he or she has been diagnosed with the disease.

2. There are many factors to consider when placing a relative in a residential care facility.

3. It is a good idea to seek professional help as you prepare to move a relative to residential care.

4. Visitors are not important to people with Alzheimer's disease.

Safety is an important issue in caring for a person with Alzheimer's 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.

Safety Issues - Home Safety

Caregivers of people with Alzheimer's 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 childproof 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's 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.

1. Keeping a person with Alzheimer's disease safe is

2. To create a safe home environment, caregivers should

3. If wandering becomes a problem with a person with Alzheimer's disease, it is a good idea to

4. In the home, medications should be

Making the decision that a person with Alzheimer's 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.

1. If the caregiver sees clear signs that the person with Alzheimer's disease is no longer a safe driver, the caregiver should

2. If it is difficult to get the person with Alzheimer's to stop driving, the caregiver can

3. One way to evaluate whether someone is still competent to drive is to

Finding out that a loved one has Alzheimer's 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's. 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 website 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's 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.

1. The primary caregivers for people with Alzheimer's disease are

2. When caring for a loved one who has Alzheimer's disease, caregivers should

3. As caregivers plan for the future, they should

4. Caregivers should

Despite the widespread belief that most people with Alzheimer's disease reside in nursing homes, families are the primary caregivers for their relatives with Alzheimer's disease.

Within families, caregiving is provided most often by wives and husbands, followed by daughters.

Professionals such as counselors, psychiatrists, psychologists, social workers, psychiatric nurses, and clergy may be able to provide information. They can also ease caregiving burdens or help with specific issues throughout the course of the disease.

A physician may help with health care needs, including management of behavioral symptoms. Select a professional who is familiar with dementia and with whom you feel comfortable. Adult day care providers and home care professionals also can provide information about adult day care and home health care.

State and county agencies on aging are a good source of information about support services for caregivers. They can provide information on nursing homes, adult day care centers, assisted living facilities, attendant care, and caseworker services.

State and county agencies on aging also provide information on legal and protective services.

State and county agencies on aging can also provide information on respite care, home health care, homemakers, chore services, and meals-on-wheels.

The Alzheimer's Disease Education and Referral Center, or ADEAR provides publications and other information about Alzheimer's disease and caring for people with Alzheimer's disease. You can call ADEAR at 1-800-1-438-4380 or visit the website at www.alzheimers.org.

The Alzheimer's Association has 200 chapters nationwide which provide services to persons with Alzheimer's disease, their caregivers, and health care professionals. The Association also has publications available, organizes and makes referrals to local support groups, and maintains a help line.

At the federal level, the Administration on Aging, or AOA, has a toll-free number for its Eldercare Locator at 1-800-677-1116 which will put caregivers in touch with local resources.

Various individuals provide in-home services, including nurses, aides, homemakers, sitters, and companions. Services are available from private non-profit organizations, for-profit organizations, and state or local governments.

Skilled home care is provided by registered nurses. Most people with Alzheimer's disease do not require skilled home care. Homemakers and home health aides may be more beneficial.

Research shows that the physical environment in which the person with Alzheimer's disease lives can be important for stimulating cognitive functioning, promoting independence, improving safety, managing behaviors, and reducing stress and anxiety.

Creating a safe living environment can be important in preventing many stressful and dangerous situations.

If the person begins to wander, consider installing secure locks on all outside windows and doors and removing locks on bathroom doors to prevent the person from locking him or herself in. Medications should be labeled and locked up.

Knives, lighters, matches, and guns should be secured out of reach. Keep the house free of clutter and remove scatter rugs and anything else that might contribute to a fall. Childproof latches on kitchen cabinets or any place where chemicals or cleaning supplies are kept also may be used.

Alzheimer's is a progressive disease -- the symptoms grow worse over time. Yet, it is also a variable disease. Symptoms progress at different rates and in different patterns. The appearance and progression of symptoms will vary from one person to the next.

The behaviors a person exhibits will be based on how advanced the disease is and the particular way he or she is affected.

Symptoms will likely include confusion, memory loss, and problems with routine tasks. The person may also experience anxiety, sleep disturbances, and difficulty recognizing family and friends, among a variety of other symptoms.

Sometimes the person with Alzheimer's disease may exhibit violent behaviors, wandering, restlessness, and/or inappropriate social or sexual behavior. Not all people experience all of these problems, and the intensity and duration of the behaviors may vary. Most of these behaviors, if they occur, happen in the middle stages of the disease, and can often be helped with medication or behavioral interventions.

No treatment is yet available that can stop Alzheimer's disease. However, for some people in the early and middle stages of the disease, the drugs Cognex®, Aricept®, Exelon®, or Reminyl® may help prevent some symptoms from becoming worse for a limited time.

Also, some medicines may help control behavioral symptoms of Alzheimer's disease such as sleeplessness, agitation, wandering, anxiety, and depression. Treating these symptoms often makes people with Alzheimer's more comfortable and makes their care easier.

Many, but not all, people with Alzheimer's disease develop vision problems. Most often vision problems occur in visual-spatial functioning. This means that they may have trouble with bumping into things, finding common objects, finding their way in their surroundings, reading, or performing fine hand-eye coordination activities such as brushing their teeth.

Modifying the environment often can help people with Alzheimer's disease cope with vision problems. Enlarging markings on appliances, including the numerals on the telephone, and using higher wattage light bulbs to increase lighting are ways to assist people experiencing vision problems.

The symptoms of many people with Alzheimer's disease tend to worsen in the evening. This is often referred to as "sundowning." Making sure that the person has adequate rest and a calm, comfortable, and well-lighted environment can help to limit sundowning.

First of all, do not expect too much. Finding activities that a person with Alzheimer's disease can do and is interested in can be a challenge.

Simple activities are the best, especially if you can find activities that use the abilities

Activities that are familiar, such as folding clothes, kneading dough, or digging in the garden may be comfortable.

Think of other opportunities for pleasant events, such as bringing in live pets or stuffed animals, playing calming music, or growing a garden.

Help the person to get started on an activity and break the activity down into small steps. Give praise for each step completed. Try to incorporate activities into a normal daily routine.

Choose exercises that both you and the person find easy and can do together. Physical activities you both enjoy, perhaps walking, swimming, tennis, dancing, or gardening might be good choices. Check out local exercise programs such as classes at senior centers or mall walking programs. Build slowly and be realistic in your expectations.

People with Alzheimer's often have problems expressing themselves and understanding others when they speak. When the person is talking, listen carefully, observe body language, and eliminate distractions such as radio and TV.

It is best to address the person in a calm, gentle tone of voice and use simple words and short sentences. You many need to repeat yourself several times or use hand gestures to show what you mean.

It is helpful to make meals as simple as possible.

Avoid serving too many different kinds of food on one plate. If meat is served, cut it into small pieces. Soft foods like applesauce, yogurt, eggs, and creamed cereals may be easier for the person to eat.

While there is no scientific evidence of a dietary cause of Alzheimer's disease, research has shown that vitamin E can slow the progress of some consequences of Alzheimer's disease by about 7 months. There is no reliable evidence, however, that other vitamins or nutrients can stop, reverse, slow, or prevent Alzheimer's disease.

Yet, a healthful diet is important for people with Alzheimer's disease. Poor nutrition can result in either weight loss or weight gain, and may contribute to other problems such as high blood pressure, listlessness, fatigue, dental problems, or loss of bladder or bowel control.

Some of the symptoms of Alzheimer's disease can be mimicked by vitamin B12 deficiency. This nutrient deficiency is a reversible cause of dementia, along with thiamine deficiency, thyroid hormone deficiency, certain medications, and metabolic disturbances. Reversible causes of dementia need to be excluded before a presumptive diagnosis of Alzheimer's disease is made.

The caregiver should draw the person's bath and should adjust the water temperature to avoid scalding. The room should be warm and free of scatter rugs, and the bathtub should have non-skid coverings.

A hand-held showerhead on a flexible cable can help with washing, and a shower or tub bench and grab bars can prevent slipping. Also, make sure that there are enough towels to quickly dry the person, preserve their dignity, and keep them warm.

Encourage the person to dress himself or herself to whatever degree possible. To reduce confusion, 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. 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.

It is important to set up a regular schedule for a person with Alzheimer's disease that includes adequate rest. Encourage exercise during the day and limit daytime napping. Restrict the person's access to caffeine late in the day and consider developing a bedtime routine.

It is important to have a routine for taking the person to the bathroom and to stick to it as closely as possible. A good rule of thumb is to plan to take the person to the bathroom every 2 to 3 hours during the day. Don't wait for the person to ask.

If you observe incidents of poor judgment, risk-taking, and/or dangerous behavior at the wheel, take steps to stop the person from driving.

A variety of options are available to stop someone from driving. The caregiver can ask for a doctor's help, obtain an evaluation from the Department of Motor Vehicles, hide the car keys, hide or even disable the car, or use a combination of these approaches to ensure that the person stops driving. Safety must be the first priority.

Holidays are bittersweet for many caregivers. The happy memories of the past contrast with the difficulties of the present, and extra demands on time and energy can seem overwhelming. During these times, it is important to find a balance between rest and activity.

Include the person as much as possible in important family traditions and encourage family and friends to visit. However, it is a good idea to limit the number of visitors at any one time and to schedule visits during the time of day when the person is at his or her best. Avoid crowds, changes in routine, and strange surroundings that may cause confusion or agitation.

It is important that the person with Alzheimer's receive regular medical care. Advance planning can help the trip to the doctor's office go more smoothly.

Try to schedule the appointment for the person's best time of day. Let the office staff know in advance that this person is confused. There may be something they can do to make the visit go more smoothly.

Don't tell the person about the appointment until the day of the visit or even shortly before it is time to go. Bring along something to eat and drink and any activity that he or she may enjoy. If possible, have a friend or another family member accompany you so that one of you can be with the person while the other speaks with the doctor.

Wandering and restlessness are common symptoms of Alzheimer's disease, especially in the moderate and severe stages of the disease.

It may be helpful to keep a regular daytime routine that includes activity and exercise. Some caregivers find it helpful to use nightlights, bells on doors, or locks placed in an unaccustomed position at the bottom of the door to prevent wandering.

It is often helpful to have a bracelet made for the person to wear for identification purposes. Keep recent photographs of the person available at all times. Include brightly colored items of clothing in the wardrobe. Place identification on shoes, eyeglasses, purse or wallet, and keys.

You may want to consider a service such as the Alzheimer's Association's Safe Return program, which assists in identifying and finding persons with Alzheimer's disease and related dementias who wander off or get lost.

A person in later stages of Alzheimer's disease may suffer from hallucinations or delusions. Hallucinations occur when the person sees, hears, smells, tastes, or feels something that is not there. Delusions are false beliefs that the person cannot be dissuaded of.

Arguing with the person is ineffective, and it may increase his or her agitation. Calm reassurance is the best approach.

Sometimes moving to another room or going outside for a walk may help. Make sure the person is safe and does not have access to anything he or she could use to harm anyone.

Some warning signs of caregiver stress are feeling sad or depressed, laying awake and crying, losing weight, feeling isolated or alone, and feeling more angry or frustrated with one's situation and with the need to provide care.

It is important for caregivers not to ignore their own physical health symptoms and conditions. They should visit the doctor regularly for their own health care needs before conditions get worse.

Many caregivers find it helpful to participate in caregiver support groups sponsored by the Alzheimer's Association and other organizations.

Caregivers need time away from stress to maintain their own health, and they should have some time to themselves every day. Adult day care and respite care are beneficial for the person as well as the caregiver, providing structure, activities, and opportunities for socialization.

It is important for caregivers not to ignore their own health. They should visit the doctor regularly for their own health care needs before conditions get exacerbated.

There is no definite rule regarding the right time to place a person with Alzheimer's disease in a more protective environment or in a nursing home.

This decision requires careful consideration by the caregiver of the person's needs and the caregiver's ability to manage the person's care safely. Consultations with professionals can be helpful in making this decision.

The major factors to consider in a nursing home include experience and expertise of the staff and administration, quality of recreational and therapeutic activities, location, and cost.