A caregiver gives care to someone who needs help taking care of themselves. It can be rewarding. It may help to strengthen connections to a loved one. You may feel fulfillment from helping someone else. But sometimes caregiving can be stressful and even overwhelming. This can be especially true when caring for someone with Alzheimer's disease(AD).

AD is an illness that changes the brain. It causes people to lose the ability to remember, think, and use good judgment. They also have trouble taking care of themselves. Over time, as the disease gets worse, they will need more and more help. As a caregiver, it is important for you to learn about AD. You will want to know what happens to the person during the different stages of the disease. This can help you plan for the future, so that you will have all of the resources you will need to be able to take care of your loved one.

As a caregiver for someone with AD, your responsibilities can include

• Getting your loved one's health, legal, and financial affairs in order. If possible, include them in the planning while they can still make decisions. Later you will need to take over managing their finances and paying their bills.
• Evaluating their house and making sure it's safe for their needs
• Monitoring their ability to drive. You may want to hire a driving specialist who can test their driving skills. When it is no longer safe for your loved one to drive, you need to make sure that they stop.
• Encouraging your loved one to get some physical activity. Exercising together may make it more fun for them.
• Making sure that your loved one has a healthy diet
• Helping with daily tasks like bathing, eating, or taking medicine
• Doing housework and cooking
• Running errands such as shopping for food and clothes
• Driving them to appointments
• Providing company and emotional support
• Arranging medical care and making health decisions

As you care for your loved one with AD, don't ignore your own needs. Caregiving can be stressful, and you need to take care of your own physical and mental health.

At some point, you will not be able to do everything on your own. Make sure that you get help when you need it. There are many different services available, including

• Home care services
• Adult day care services
• Respite services, which provide short-term care for the person with AD
• Federal and state government programs that can provide financial support and services
• Assisted living facilities
• Nursing homes, some of which have special memory care units for people with AD
• Palliative and hospice care

You might consider hiring a geriatric care manager. They are specially trained professionals who can help you to find the right services for your needs.

Taking care of yourself—physically and mentally—is one of the most important things you can do as a caregiver. This could mean asking family members and friends to help out, doing things you enjoy, or getting help from a home health care service. Taking these actions can bring you some relief. It also may help keep you from getting ill or depressed.

Ways to Take Care of Yourself

Here are some ways you can take care of yourself:

• Ask for help when you need it.
• Eat healthy foods.
• Join a caregiver's support group.
• Take breaks each day.
• Spend time with friends.
• Keep up with your hobbies and interests.
• Get exercise as often as you can.
• See your doctor on a regular basis.
• Keep your health, legal, and financial information up-to-date.

Asking for Help

Everyone needs help at times. However, many caregivers find it hard to ask for help. They may feel they should be able to do everything themselves, or that it's not all right to leave the person in their care with someone else. Or maybe they can't afford to pay someone to watch the person for an hour or two.

Here are some tips about asking for help:

• Remind yourself that it's okay to ask for help from family, friends, and others. You don't have to do everything yourself.
• Ask people to help out in specific ways, like making a meal, visiting the person, or taking the person out for a short time.
• Call for help from home health care or adult day care services when needed.
• Use national and local resources to find out how to pay for some of this help or get respite care services.

You may want to join a support group of Alzheimer's disease caregivers. These groups meet in person or online to share experiences and tips and give each other support.

Coping with Emotions and Stress

Caring for a person with Alzheimer's takes a lot of time and effort. Your job can become even harder when the person gets angry with you, hurts your feelings, or forgets who you are. Sometimes, you may feel discouraged, sad, lonely, frustrated, confused, or angry. These feelings are normal.

Here are some things you can say to yourself that might help you feel better:

• I'm doing the best I can.
• What I'm doing would be hard for anyone.
• I'm not perfect, and that's okay.
• I can't control some things that happen.
• Sometimes, I just need to do what works for right now.
• I will enjoy the moments when we can be together in peace.
• Even when I do everything I can think of, the person with Alzheimer's disease will still have problem behaviors because of the illness, not because of what I do.
• I will try to get help from a counselor if caregiving becomes too much for me.

Some caregivers find that going to a church, temple, or mosque helps them cope with the daily demands placed on them. For others, simply having a sense that larger forces are at work in the world helps them find a sense of balance and peace.

Getting Professional Help

Mental health professionals and social workers help you deal with any stress you may be feeling. They help you understand feelings, such as anger, sadness, or feeling out of control. They can also help you make plans for unexpected or sudden events.

Mental health professionals charge by the hour. Medicare, Medicaid, and some private health insurance plans may cover some of these costs. Ask your health insurance plan which mental health counselors and services it covers. Then check with your doctor, local family service agencies, and community mental health agencies for referrals to counselors.

More Tips for Self-Care

Here are other things to keep in mind as you take care of yourself:

• Understand that you may feel powerless and hopeless about what's happening to the person you care for.
• Understand that you may feel a sense of loss and sadness.
• Understand why you've chosen to take care of the person with Alzheimer's disease. Ask yourself if you made this choice out of love, loyalty, a sense of duty, a religious obligation, financial concerns, fear, a habit, or self-punishment.
• Let yourself feel day-to-day "uplifts." These might include good feelings about the person you care for, support from other people, or time spent on your own interests.

Sometimes you can no longer care for a person with Alzheimer’s disease at home. The person may need around-the-clock care. Or, he or she may be incontinent, aggressive, or wander a lot. You may not be able to meet all of his or her needs at home anymore. When that happens, you may want to look for a long-term care facility for the person.

You may feel guilty or upset about this decision, but moving the person to a facility may be the best thing to do. It will give you greater peace of mind knowing that the person is safe and getting good care.

Choosing the right place is a big decision. It’s hard to know where to start. The following overview of options, along with questions to ask and other resources, can help you get started.

Residential Care

Residential care options include:

• Continuing care retirement communities (CCRCs)—a home, apartment, or room in a retirement community where people with Alzheimer’s can live and get care. Some of these places are for people who can care for themselves, while others are for people who need care around-the-clock. An advantage is that residents may move from one level of care to another—for example, from more independent living to more supervised care.
• Assisted living facilities—a facility with rooms or apartments for people who may need some help with daily tasks. Some assisted living facilities have special Alzheimer’s units. These units have staff who check on and care for people with Alzheimer’s disease. You will need to pay for the cost of the room or apartment, and you may need to pay extra for any special care.
• Group homes—a home where several people who can't care for themselves and two or more staff members live. At least one caregiver is on site at all times. You will need to pay the costs of the person with Alzheimer’s living in this kind of home. Remember that these homes may not be inspected or regulated, but may still provide good care.
• Nursing homes—a placefor people who can't care for themselves anymore. Some nursing homes have special Alzheimer’s disease care units. These units are often in separate sections of the building where staff members have special training to care for people with Alzheimer’s. In many cases, you will have to pay for nursing home care. Most nursing homes accept Medicaid as payment. Also, long-term care insurance may cover some of the nursing home costs.

Next Steps: Gathering Information

Choosing the right place is a big decision. It's hard to know where to start. Below we list steps you can take to find the right place:

1. Gather Information

• Talk with your support group members, social worker, doctor of the person with Alzheimer’s, family members, and friends about facilities in your area.
• Make a list of questions to ask about the facility.
• Call to set up a time to visit.

2. Visit Assisted Living Facilities and Nursing Homes

Make several visits at different times of the day and evening.

Ask yourself:

• How does the staff care for the residents?
• Is the staff friendly?
• Does the place feel comfortable?
• How do the people who live there look?
• Do they look clean and well cared for?
• Are mealtimes comfortable?
• Is the facility clean and well-maintained?
• Does it smell bad?
• How do staff members speak to residents—with respect?

Ask the staff:

• What activities are planned for residents?
• How many staff members are at the facility? How many of them are trained to provide medical care if needed?
• How many people in the facility have Alzheimer’s disease?
• Does the facility have a special unit for people with Alzheimer’s? If so, what kinds of services does it provide?
• Is there a doctor who checks on residents on a regular basis? How often?

You also may want to ask staff:

• What is a typical day like for the person with Alzheimer’s disease?
• Is there a safe place for the person to go outside?
• What is included in the fee?
• How does my loved one get to medical appointments?

Talk with other caregivers who have a loved one at the facility. Find out what they think about the place.

Find out about total costs of care. Each facility is different. You want to find out if long-term care insurance, Medicaid, or Medicare will pay for any of the costs. Remember that Medicare only covers nursing home costs for a short time after the person with Alzheimer’s has been in the hospital for a certain amount of time.

If you're asked to sign a contract, make sure you understand what you are agreeing to.

How to Make Moving Day Easier

Moving is very stressful. Moving the person with Alzheimer’s to an assisted living facility, group home, or nursing home is a big change for both the person and the caregiver. You may feel many emotions, from a sense of loss to guilt and sadness. You also may feel relieved. It is okay to have all these feelings. A social worker may be able to help you plan for and adjust to moving day. It's important to have support during this difficult step.

Here are some things that may help:

• Know that the day can be very stressful.
• Talk to a social worker about your feelings about moving the person into a new place. Find out how to help the person with Alzheimer’s adjust.
• Get to know the staff before the person moves into a facility
• Talk with the staff about ways to make the change to the assisted living facility or nursing home go better.
• Don't argue with the person with Alzheimer’s about why he or she needs to be there.

Be an Advocate

Once the person has moved to his or her new home, check and see how the person is doing. As the caregiver, you probably know the person best. Look for signs that the person may need more attention, is taking too much medication, or may not be getting the care they need. Build a relationship with staff so that you work together as partners.

A trip to the hospital can be stressful for people with Alzheimer’s disease or another dementia and their caregivers. Being prepared for emergency and planned hospital visits can relieve some of that stress. This article suggests ways to help you prepare and tips for making your visit to the emergency room or hospital easier.

Hospital Emergencies: What You Can Do

A trip to the emergency room (ER) can tire and frighten a person with Alzheimer’s or other dementia. Here are some ways to cope:

• Ask a friend or family member to go with you or meet you in the ER. He or she can stay with the person while you answer questions.
• Be ready to explain the symptoms and events leading up to the ER visit—possibly more than once to different staff members.
• Tell ER staff that the person has dementia. Explain how best to talk with the person.
• Comfort the person. Stay calm and positive. How you are feeling will get absorbed by others.
• Be patient. It could be a long wait if the reason for your visit is not life-threatening.
• Recognize that results from the lab take time.
• Realize that just because you do not see staff at work does not mean they are not working.
• Be aware that emergency room staff have limited training in Alzheimer’s disease and related dementias, so try to help them better understand the person.
• Encourage hospital staff to see the person as an individual and not just another patient with dementia who is confused and disoriented from the disease.
• Do not assume the person will be admitted to the hospital.
• If the person must stay overnight in the hospital, try to have a friend or family member stay with him or her.

Do not leave the emergency room without a plan. If you are sent home, make sure you understand all instructions for follow-up care.

What to Pack

An emergency bag with the following items, packed ahead of time, can make a visit to the ER go more smoothly:

• Health insurance cards
• Lists of current medical conditions, medicines being taken, and allergies
• Healthcare providers’ names and phone numbers
• Copies of healthcare advance directives (documents that spell out a patient’s wishes for end-of-life care)
• “Personal information sheet” stating the person’s preferred name and language; contact information for key family members and friends; need for glasses, dentures, or hearing aids; behaviors of concern; how the person communicates needs and expresses emotions; and living situation
• Snacks and bottles of water
• Incontinence briefs, if usually worn, moist wipes, and plastic bags
• Comforting objects or music player with earphones
• A change of clothing, toiletries, and personal medications for yourself
• Pain medicine, such as ibuprofen, acetaminophen, or aspirin—a trip to the emergency room may take longer than you think, and stress can lead to a headache or other symptoms
• A pad of paper and pen to write down information and directions given to you by hospital staff
• A small amount of cash
• A note on the outside of the emergency bag to remind you to take your cell phone and charger with you

By taking these steps in advance, you can reduce the stress and confusion that often accompany a hospital visit, particularly if the visit is an unplanned trip to the emergency room.

Before a Planned Hospital Stay

With Alzheimer’s disease and related dementias, it is wise to accept that hospitalization is a “when” and not an “if” event. Due to the nature of the disease, it is very probable that, at some point, the person you are caring for will be hospitalized. Keep in mind that hospitals are not typically well-designed for patients with dementia. Preparation can make all the difference. Here are some tips.

• Think about and discuss hospitalization before it happens, and as the disease and associated memory loss progress. Hospitalization is a choice. Talk about when hospice may be a better and more appropriate alternative.
• Build a care team of family, friends, and/or professional caregivers to support the person during the hospital stay. Do not try to do it all alone.
• Ask the doctor if the procedure can be done during an outpatient visit. If not, ask if tests can be done before admission to the hospital to shorten the hospital stay.
• Ask questions about anesthesia, catheters, and IVs. General anesthesia can have side effects, so see if local anesthesia is an option.
• Ask if regular medications can be continued during the hospital stay.
• Ask for a private room, with a reclining chair or bed, if insurance will cover it. It will be calmer than a shared room.
• Involve the person with dementia in the planning process as much as possible.
• Do not talk about the hospital stay in front of the person as if he or she is not there. This can be upsetting and embarrassing.
• Shortly before leaving home, tell the person with dementia that the two of you are going to spend a short time in the hospital.

During the Hospital Stay

While the person with dementia is in the hospital:

• Ask doctors to limit questions to the person, who may not be able to answer accurately. Instead, talk with the doctor in private, outside the person’s room.
• Help hospital staff understand the person’s normal functioning and behavior. Ask them to avoid using physical restraints or medications to control behaviors.
• Have a family member, trusted friend, or hired caregiver stay with the person with Alzheimer’s at all times if possible—even during medical tests. This may be hard to do, but it will help keep the person calm and less frightened, making the hospital stay easier.
• Tell the doctor immediately if the person seems suddenly worse or different. Medical problems such as fever, infection, medication side effects, and dehydration can cause delirium, a state of extreme confusion and disorientation.
• Ask friends and family to make calls, or use email or online tools to keep others informed about the person’s progress.
• Help the person fill out menu requests. Open food containers and remove trays. Assist with eating as needed.
• Remind the person to drink fluids. Offer fluids regularly and have him or her make frequent trips to the bathroom.
• Assume the person will experience difficulty finding the bathroom and/or using a call button, bed adjustment buttons, or the phone.
• Communicate with the person in the way he or she will best understand and respond.
• Recognize that an unfamiliar place, medicines, invasive tests, and surgery will make a person with dementia more confused. He or she will likely need more assistance with personal care.
• Take deep breaths and schedule breaks for yourself!

If anxiety or agitation occurs, try the following:

• Remove personal clothes from sight; they may remind the person of getting dressed and going home.
• Post reminders or cues, like a sign labeling the bathroom door, if this comforts the person.
• Turn off the television, telephone ringer, and intercom. Minimize background noise to prevent overstimulation.
• Talk in a calm voice and offer reassurance. Repeat answers to questions when needed.
• Provide a comforting touch or distract the person with offers of snacks and beverages.
• Consider “unexpressed pain” (i.e., furrowed brow, clenched teeth or fists, kicking). Assume the person has pain if the condition or procedure is normally associated with pain. Ask for pain evaluation and treatment every 4 hours—especially if the person has labored breathing, loud moaning, crying or grimacing, or if you are unable to console or distract him or her.
• Listen to soothing music or try comforting rituals, such as reading, praying, singing, or reminiscing.
• Slow down; try not to rush the person.
• Avoid talking about subjects or events that may upset the person.

Working with Hospital Staff

Remember that not everyone in the hospital knows the same basic facts about memory loss, Alzheimer’s disease, and related dementias. You may need to help teach hospital staff what approach works best with the person with Alzheimer’s, what distresses or upsets him or her, and ways to reduce this distress.

You can help the staff by providing them with a personal information sheet that includes the person’s normal routine, how he or she prefers to be addressed (e.g., Miss Minnie, Dr. James, Jane, Mr. Miller, etc.), personal habits, likes and dislikes, possible behaviors (what might trigger them and how best to respond), and nonverbal signs of pain or discomfort.

Help staff understands what the person’s “baseline” is (prior level of functioning) to help differentiate between dementia and acute confusion or delirium.

You should:

• Place a copy of the personal information sheet with the chart in the hospital room and at the nurse’s station.
• With the hospital staff, decide who will do what for the person with Alzheimer’s disease. For example, you may want to be the one who helps with bathing, eating, or using the bathroom.
• Inform the staff about any hearing difficulties and/or other communication problems, and offer ideas for what works best in those instances.
• Make sure the person is safe. Tell the staff about any previous issues with wandering, getting lost, falls, suspiciousness and/or delusional behavior.
• Not assume the staff knows the person’s needs. Inform them in a polite, calm manner.
• Ask questions when you do not understand certain hospital procedures and tests or when you have any concerns. Do not be afraid to be an advocate.
• Plan early for discharge. Ask the hospital discharge planner about eligibility for home health services, equipment, or other long-term care options. Prepare for an increased level of caregiving.
• Realize that hospital staff are providing care for many people. Practice the art of patience.

Some caregivers need help when the person is in the early stages of Alzheimer's disease. Other caregivers look for help when the person is in the later stages of Alzheimer's. It's okay to seek help whenever you need it.

As the person moves through the stages of Alzheimer's, he or she will need more care. One reason is that medicines used to treat Alzheimer's disease can only control symptoms; they cannot cure the disease. Symptoms, such as memory loss and confusion, will get worse over time.

Because of this, you will need more help. You may feel that asking for help shows weakness or a lack of caring, but the opposite is true. Asking for help shows your strength. It means you know your limits and when to seek support.

Build a Support System

According to many caregivers, building a local support system is a key way to get help. Your support system might include a caregiver support group, the local chapter of the Alzheimer's Association, family, friends, and faith groups.

Resources for Alzheimer's Care

Here are some places that can give you support and advice:

NIA Alzheimer's and Related Dementias Education and Referral (ADEAR) Center
Phone: 1-800-438-4380

The ADEAR Center offers information on diagnosis, treatment, patient care, caregiver needs, long-term care, and research and clinical trials related to Alzheimer's disease. Staff can refer you to local and national resources, or you can search for information on the website. The Center is a service of the National Institute on Aging (NIA), part of the Federal Government's National Institutes of Health. They have information to help you understand Alzheimer's disease. You can also get hints on other subjects, including:

• Talking with the doctor
• Financial and legal planning
• Medicines
• Comfort care at the end of life
• Paying for care

Alzheimers.gov
Explore the Alzheimers.gov portal for information and resources on Alzheimer’s and related dementias caregiving from across the federal government.
Phone: 1-800-438-4380

Alzheimer's Association
Phone: 1-800-272-3900

The Alzheimer's Association offers information, a help line, and support services to people with Alzheimer's and their caregivers. Local chapters across the country offer support groups, including many that help with early-stage Alzheimer's disease. Call or go online to find out where to get help in your area. The Association also funds Alzheimer's research.

Alzheimer's Foundation of America
Phone: 1-866-232-8484

The Alzheimer's Foundation of America provides information about how to care for people with Alzheimer's, as well as a list of services for people with the disease. It also offers information for caregivers and their families through member organizations. Services include a toll-free hotline, publications, and other educational materials.

Eldercare Locator
Phone: 1-800-677-1116

Caregivers often need information about community resources, such as home care, adult day care, and nursing homes. Contact the Eldercare Locator to find these resources in your area. The Eldercare Locator is a service of the Administration on Aging. The Federal Government funds this service.

National Institute on Aging Information Center
Email the NIA Information Center
Phone: 1-800-222-2225
TTY: 1-800-222-4225

The NIA Information Center offers free publications about aging. Many of these publications are in both English and Spanish. They can be viewed, printed, and ordered online.

Direct Services: Groups that Help with Everyday Care in the Home

Here is a list of services that can help you care for the person with Alzheimer's at home. Find out if these services are offered in your area. Also, contact Medicare (or call 1-800-633-4227) to see if they cover the cost of any of these services.

Home Care Services

Home care services—not to be confused with home health care services—send a home care aide to your home to help you care for a person with Alzheimer's. These aides provide personal care and/or company for the person. They do not provide skilled medical care. Aides are usually not medical professionals. They assist with daily activities such as bathing and dressing and may even help with light housekeeping, transportation, and errands. Home care aides may come for a few hours or stay for 24 hours.

What to know about costs:

• Home care services generally charge by the hour. Some services charge a flat rate for staying overnight.
• Medicare and private health insurance may cover some home care costs, though nonmedical care is generally not covered. Check with your health plan.
• Long-term care insurance may cover personal care and homemaker services.

How to find them:

• Ask your doctor or other healthcare professional, family, and friends to recommend home care services in your area.

Home Health Care Services

Home health care aides are skilled, licensed medical professionals who come to your home and help you recover from a hospital stay, illness, or injury. Aides provide skilled nursing care, physical, occupational, or speech therapy, and other medical services coordinated by your doctor. You need a doctor’s order for home health care services.

What to know about costs:

• Medicare or private health insurance may cover skilled medical care services in your home. Check with your insurer before signing an agreement.
• You must pay all costs not covered by Medicare, Medicaid, or insurance.

How to find them:

• Your doctor, health care professional, or hospital discharge social worker can give you a list of agencies that serve your area.
• Contact the Eldercare Locator or call 1-800-677-1116.

Tips for Finding and Hiring In-Home Care Services

Some care services are very good; others are not. You should get as much information as possible about a service before you sign an agreement. Ask providers for references from people who have used their services. If possible, check for any complaints filed against a service. You can also check with community, county, or State agencies that regulate health services or contact the Better Business Bureau in your area.

Here are some questions you might ask before signing a care agreement:

• Is your service licensed and accredited?
• What is the cost of your services?
• What is included and not included in your services?
• How many days a week and hours a day will an aide come to my home?
• Is there a minimum number of hours required?
• How do you check the background and experience of your aides?
• How do you train your aides?
• Can I get special help in an emergency?
• What types of emergency care can you provide?
• Whom do I contact if there is a problem?

Meal Services

Meal services bring hot meals to the person's home or your home. The delivery staff do not feed the person.

What to know about costs:

• The person with Alzheimer's must qualify for the service based on local guidelines.
• Some groups do not charge for their services. Others may charge a small fee.

How to find them:

• The Eldercare Locator can help at 1-800-677-1116. Or, contact Meals on Wheels America at 1-888-998-6325.

Adult Day Care Services

Adult day care services provide a safe environment, activities, and staff who pay attention to the needs of the person with Alzheimer's in an adult day care facility. They also provide transportation. The facility may pick up the person with Alzheimer's, take him or her to day care, and then return the person home. Adult day care services provide a much-needed break for you.

What to know about costs:

• Adult day care services charge by the hour.
• Most insurance plans don't cover these costs. You must pay all costs not covered by insurance.

How to find them:

• Call the National Adult Day Services Association at 1-877-745-1440. You can contact the Eldercare Locator at 1-800-677-1116.

Respite Services

Respite services provide short-term care for the person with Alzheimer's at home, in a healthcare facility, or at an adult day center. The care may last for as short as a few hours or as long as several weeks. These services allow you to get a break to rest or go on a vacation.

What to know about costs:

• Respite services charge by the hour or by the number of days or weeks that services are provided.
• Most insurance plans do not cover these costs. You must pay all costs not covered by insurance or other funding sources.
• Medicare will cover most of the cost of up to 5 days in a row of respite care in a hospital or skilled nursing facility for a person receiving hospice care.
• Medicaid also may offer assistance.
• There may be other sources of funding in your State.

Geriatric Care Managers

Geriatric care managers make a home visit and suggest needed services. They also can help you get needed services.

What to know about costs:

• Geriatric care managers charge by the hour.
• Most insurance plans don't cover these costs.
• Medicare does not pay for this service.
• You will probably have to pay for this service.

How to find them:

• Call the Aging Life Care Association at 1-520-881-8008.

Counseling from a Mental Health or Social Work Professional

Mental health or social work professionals help you understand your feelings, such as anger, sadness, or feeling out of control and overwhelmed, and help you deal with any stress you may be feeling. They also help develop plans for unexpected or sudden events.

What to know about costs:

• Professional mental health counselors charge by the hour. There may be big differences in the rates you would be charged from one counselor to another.
• Some insurance companies will cover some of these costs.
• Medicare or Medicaid may cover some of these costs.
• You must pay all costs not covered by Medicare, Medicaid, or insurance.

How to find them:

• It's a good idea to ask your health insurance staff which counselors and services, if any, your insurance plan covers. Then check with your doctor, local family service agencies, and community mental health agencies for referrals to counselors.

Hospice Services

Hospice services provide care for a person who is near the end of life and is no longer receiving treatment to cure his or her serious illness. Hospice services keep the person who is dying as comfortable and pain-free as possible in the person’s home or a hospice facility. They also support the family by providing end-of-life care. You can stop hospice services at any time if you wish to receive curative treatments again.

What to know about costs:

• Medicare, Medicaid, Veterans Health Administration, or private insurance plans may cover all hospice costs.
• If you receive hospice services in an assisted living facility or nursing home, you may need to pay room and board. You must pay all costs not covered by Medicare, Medicaid, or other insurance.
• Some nonprofit organizations and hospice providers help cover hospice costs on a sliding scale for low-income patients.
• Once you’ve chosen to receive hospice services, any medicines or treatments intended to cure your terminal illness will not be covered.

How to find them:

• Hospice Foundation of America at 1-800-854-3402
• National Hospice and Palliative Care Organization at 1-800-658-8898
• Medicare at 1-800-633-4227
• Medicaid at 1-877-267-2323 (TTY: 1-866-226-1819)
• American Hospice Foundation

Alzheimer’s disease causes brain cells to die, so the brain works less well over time. This changes how a person acts. This article has suggestions that may help you understand and cope with changes in personality and behavior in a person with Alzheimer’s disease.

Common Changes in Personality and Behavior

Common personality and behavior changes you may see include:

• Getting upset, worried, and angry more easily
• Acting depressed or not interested in things
• Hiding things or believing other people are hiding things
• Imagining things that aren’t there
• Wandering away from home
• Pacing a lot
• Showing unusual sexual behavior
• Hitting you or other people
• Misunderstanding what he or she sees or hears

You also may notice that the person stops caring about how he or she looks, stops bathing, and wants to wear the same clothes every day.

Other Factors That Can Affect Behavior

In addition to changes in the brain, other things may affect how people with Alzheimer’s behave:

• Feelings such as sadness, fear, stress, confusion, or anxiety
• Health-related problems, including illness, pain, new medications, or lack of sleep
• Other physical issues like infections, constipation, hunger or thirst, or problems seeing or hearing

Other problems in their surroundings may affect behavior for a person with Alzheimer’s disease. Too much noise, such as TV, radio, or many people talking at once can cause frustration and confusion. Stepping from one type of flooring to another or the way the floor looks may make the person think he or she needs to take a step down. Mirrors may make them think that a mirror image is another person in the room.

If you don’t know what is causing the problem, call the doctor. It could be caused by a physical or medical issue.

Keep Things Simple…and Other Tips

Caregivers cannot stop Alzheimer’s-related changes in personality and behavior, but they can learn to cope with them. Here are some tips:

• Keep things simple. Ask or say one thing at a time.
• Have a daily routine, so the person knows when certain things will happen.
• Reassure the person that he or she is safe and you are there to help.
• Focus on his or her feelings rather than words. For example, say, “You seem worried.”
• Don’t argue or try to reason with the person.
• Try not to show your frustration or anger. If you get upset, take deep breaths and count to 10. If it’s safe, leave the room for a few minutes.
• Use humor when you can.
• Give people who pace a lot a safe place to walk. Provide comfortable, sturdy shoes. Give them light snacks to eat as they walk, so they don’t lose too much weight, and make sure they have enough to drink.
• Try using music, singing, or dancing to distract the person.
• Ask for help. For instance, say, “Let’s set the table” or “I need help folding the clothes.”

Talk with the person’s doctor about problems like hitting, biting, depression, or hallucinations. Medications are available to treat some behavioral symptoms.

In addition to the symptoms of Alzheimer's disease, a person with Alzheimer's may have other medical problems over time, as all older adults do. These problems can cause more confusion and behavior changes. The person may not be able to tell you what is wrong. As a caregiver, you need to watch for signs of illness and tell the doctor about what you see. Here are some common medical problems to watch for.

Fever

Having a fever means that the person's temperature is 2 degrees or more above his or her normal temperature.

A fever may be a sign of:

• Infection, caused by germs
• Dehydration, caused by a lack of fluids
• Heat stroke
• Constipation (discussed later in this section)

Don't use a glass thermometer because the person might bite down on the glass. Use a digital thermometer, which you can buy at a grocery store or drugstore. Call the doctor right away if the person with Alzheimer's disease has a fever.

Flu and Pneumonia

These diseases spread quickly from one person to another, and people with Alzheimer's are more likely to get them. Make sure that the person gets a flu shot each year and a pneumonia shot once after age 65. Some older people need to get more than one pneumonia vaccine. The shots lower the chances that the person will get the flu or pneumonia.

Flu and pneumonia may cause:

• Fever (Not everyone with pneumonia has a fever.)
• Chills
• Aches and pains
• Vomiting
• Coughing
• Trouble breathing

Falls

As Alzheimer's disease gets worse, the person may have trouble walking and keeping his or her balance. He or she also may have changes in depth perception, which is the ability to understand distances. For example, someone with Alzheimer's may try to step down when walking from a carpeted to a tile floor. This puts him or her at risk for falls.

To reduce the chance of a fall:

• Clean up clutter.
• Remove throw rugs.
• Use chairs with arms.
• Put grab bars in the bathroom.
• Use good lighting.
• Make sure the person wears sturdy shoes with good traction.

Dehydration

Our bodies must have a certain amount of water to work well. If a person is sick or doesn't drink enough fluid, he or she may become dehydrated.

Signs of dehydration to look for include:

• Dry mouth
• Dizziness
• Hallucinations (Don't forget that hallucinations may be caused by Alzheimer's itself.)
• Rapid heart rate

Be aware of how much fluid the person is drinking. This is even more important during hot weather or in homes without air conditioning. Also, look for signs of dehydration during the winter months when heat in your home can create a lot of dry air.

Constipation

People can have constipation—trouble having a bowel movement—when they:

• Change what they eat
• Take certain medicines, including Namenda®
• Get less exercise than usual
• Drink less fluid than usual

Try to get the person to drink at least 6 glasses of liquid a day.

Besides water, other good sources of liquid include:

• Juice, especially prune juice
• Gelatin, such as Jell-O®
• Soup
• Milk or melted ice cream
• Decaffeinated coffee and tea
• Liquid cereal, such as Cream of Wheat®

Have the person eat foods high in fiber. Foods like dried apricots, raisins, or prunes; some dry cereals; or soybeans might help ease constipation.

If possible, make sure that the person gets some exercise each day, such as walking. Call the doctor if you notice a change in the person's bowel habits.

Diarrhea

Some medicines, including Alzheimer's medications, may cause diarrhea—loose bowel movements. Certain medical problems also may cause diarrhea. Make sure the person takes in lots of fluids when he or she has diarrhea. Also, be sure to let the doctor know about this problem.

Incontinence

Incontinence means a person can't control his or her bladder and/or bowels. This may happen at any stage of Alzheimer's disease, but it is more often a problem in the later stages. Signs of this problem are leaking urine, problems emptying the bladder, and soiled underwear and bed sheets. Be sure to let the doctor know if this happens. He or she may be able to treat the cause of the problem.

Here are some examples of things that can be treated:

• Urinary tract infection
• Enlarged prostate gland
• Too little fluid in the body (dehydration)
• Diabetes that isn't being treated
• Taking too many water pills
• Drinking too much caffeine
• Taking medicines that make it hard to hold urine

When you talk to the doctor, be ready to answer the following questions:

• What medicines is the person taking?
• Does the person leak urine when he or she laughs, coughs, or lifts something?
• Does the person urinate often?
• Can the person get to the bathroom in time?
• Is the person urinating in places other than the bathroom?
• Is the person soiling his or her clothes or bed sheets each night?
• Do these problems happen each day or once in a while?

Here are some ways you can deal with incontinence:

• Remind the person to go to the bathroom every 2 to 3 hours.
• Show him or her the way to the bathroom, or take him or her.
• Make sure that the person wears loose, comfortable clothing that is easy to remove.
• Limit fluids after 6 p.m. if problems happen at night. Do not give the person fluids with caffeine, such as coffee or tea.
• Give the person fresh fruit before bedtime instead of fluids if he or she is thirsty.
• Mark the bathroom door with a big sign that reads "Toilet" or "Bathroom."
• Use a stable toilet seat that is at a good height. Using a colorful toilet seat may help the person identify the toilet. You can buy raised toilet seats at medical supply stores.
• Help the person when he or she needs to use a public bathroom. This may mean going into the stall with the person or using a family or private bathroom.

Accidents happen. Be understanding when they occur. Stay calm and reassure the person if he or she is upset.

Incontinence supplies, such as adult disposable briefs or underwear, bed protectors, and waterproof mattress covers, may be helpful. You can buy these items at drugstores and medical supply stores. A drainable pouch may be useful for the person who can't control his or her bowel movements. Talk to a nurse about how to use this product.

Some people find it helpful to keep a record of how much food and fluid the person takes in and how often he or she goes to the bathroom. You can use this information to make a schedule of when he or she needs to go to the bathroom.

Dental Problems

As Alzheimer's disease gets worse, people need help taking care of their teeth or dentures.

Check the person's mouth for any problems such as:

• Sores
• Decayed teeth
• Food "pocketed" in the cheek or on the roof of the mouth
• Lumps

Be sure to take the person for dental checkups. Some people need medicine to calm them before they can see the dentist.

Other Medical Problems

People with Alzheimer's can have the same medical problems as many older adults. Research suggests that some of these medical problems may be related to Alzheimer's disease.

For example, some heart and blood circulation problems, stroke, and diabetes are more common in people who have Alzheimer's than in the general population. Diseases caused by infections also are common.

Visiting the Doctor

It's important that the person with Alzheimer's gets regular medical care. Make sure the person sees a health professional on a regular basis. This is the best thing you can do to help prevent medical problems.

Here are some tips to help you get ready for a visit to the doctor's office:

• Make an appointment during the person's best time of day and when the office is not very crowded.
• Let the office staff know before the visit about the person's Alzheimer's disease. Ask them for help to make the visit go smoothly.
• Don't tell the person with Alzheimer's about the visit until the day of the visit or even right before it is time to go if visiting the doctor makes the person nervous. Be positive and matter of fact.
• Take something he or she likes to eat or drink and any materials or activities the person enjoys.

Communication is hard for people with Alzheimer’s disease because they have trouble remembering things. They may struggle to find words or forget what they want to say. You may feel impatient and wish they could just say what they want, but they can’t.

The person with Alzheimer’s may have problems with:

• Finding the right word or losing his or her train of thought when speaking
• Understanding what words mean
• Paying attention during long conversations
• Remembering the steps in common activities, such as cooking a meal, paying bills, or getting dressed
• Blocking out background noises from the radio, TV, or conversations
• Frustration if communication isn’t working
• Being very sensitive to touch and to the tone and loudness of voices

Also, Alzheimer’s disease causes some people to get confused about language. For example, the person might forget or no longer understand English if it was learned as a second language. Instead, he or she might understand and use only the first language learned, such as Spanish.

Help Make Communication Easier

The first step is to understand that the disease causes changes in communication skills. The second step is to try some tips that may make communication easier:

• Make eye contact and call the person by name.
• Be aware of your tone, how loud your voice is, how you look at the person, and your body language.
• Encourage a two-way conversation for as long as possible.
• Use other methods besides speaking, such as gentle touching.
• Try distracting the person if communication creates problems.

To encourage the person to communicate with you:

• Show a warm, loving, matter-of-fact manner.
• Hold the person’s hand while you talk.
• Be open to the person’s concerns, even if he or she is hard to understand.
• Let him or her make some decisions and stay involved.
• Be patient with angry outbursts. Remember, it’s the illness “talking.”

To speak effectively with a person who has Alzheimer’s:

• Offer simple, step-by-step instructions.
• Repeat instructions and allow more time for a response. Try not to interrupt.
• Don’t talk about the person as if he or she isn’t there.
• Don’t talk to the person using “baby talk” or a “baby voice.”

Be Direct, Specific, and Positive

Here are some examples of what you can say:

• “Let’s try this way,” instead of pointing out mistakes.
• “Please do this,” instead of “Don’t do this.”
• “Thanks for helping,” even if the results aren’t perfect.

You also can:

• Ask questions that require a yes or no answer. For example, you could say, “Are you tired?” instead of “How do you feel?”
• Limit the number of choices. For example, you could say, “Would you like a hamburger or chicken for dinner?” instead of “What would you like for dinner?”
• Use different words if he or she doesn't understand the first time. For example, if you ask the person whether he or she is hungry and you don’t get a response, you could say, “Dinner is ready now. Let’s eat.”
• Try not to say, “Don’t you remember?” or “I told you.”

If you become frustrated, take a timeout for yourself.

Helping a Person Who Is Aware of Memory Loss

Alzheimer’s disease is being diagnosed at earlier stages. This means that many people are aware of how the disease is affecting their memory. Here are tips on how to help someone who knows that he or she has memory problems:

• Take time to listen. The person may want to talk about the changes he or she is noticing.
• Be as sensitive as you can. Don't just correct the person every time he or she forgets something or says something odd. Try to understand that it's a struggle for the person to communicate.
• Be patient when someone with Alzheimer's disease has trouble finding the right words or putting feelings into words.
• Help the person find words to express thoughts and feelings. But be careful not to put words in the person’s mouth or “fill in the blanks” too quickly. For example, Mrs. D cried after forgetting her garden club meeting. She finally said, "I wish they stopped." Her daughter said, "You wish your friends had stopped by for you." Mrs. D nodded and repeated some of the words. Then Mrs. D said, "I want to go." Her daughter said, "You want to go to the garden club meeting." Again, Mrs. D nodded and repeated the words.
• Be aware of nonverbal communication. As people lose the ability to talk clearly, they may rely on other ways to communicate their thoughts and feelings. For example, their facial expressions may show sadness, anger, or frustration. Grasping at their undergarments may tell you they need to use the bathroom.

Working with patients who are cognitively impaired presents an ongoing communication challenge. For instance, they likely will have trouble following any instructions about their care, including how and when to take prescriptions. Make sure someone can closely monitor care management, and try to involve a care partner whenever possible.

Here are some tips for effectively working with and communicating with cognitively impaired patients.

• Try to address the patient directly, even if his or her cognitive capacity is diminished.
• Gain the person's attention. Sit in front of and at the same level as him or her and maintain eye contact.
• Speak distinctly and at a natural rate of speed. Resist the temptation to speak loudly.
• Help orient the patient. Explain (or re-explain) who you are and what you will be doing.
• If possible, meet in surroundings familiar to the patient. Consider having a family member or other familiar person present at first.
• Support and reassure the patient. Acknowledge when responses are correct.
• If the patient gropes for a word, gently provide assistance.
• Make it clear that the encounter is not a "test" but rather a search for information to help the patient.
• Use simple, direct wording. Present one question, instruction, or statement at a time.
• If the patient hears you but does not understand you, rephrase your statement.
• Although open-ended questions are advisable in most interview situations, patients with cognitive impairments often have difficulty coping with them. Consider using a yes-or-no or multiple-choice format.
• Remember that many older people have hearing or vision problems, which can add to their confusion.
• Consider having someone call the patient to follow up on instructions after outpatient visits.
• If the patient can read, provide written instructions and other background information about the problem and options for solutions.
• Address potential issues of driving, getting lost, and home safety each time you see the patient. And, encourage regular physical activity, social activity, hobbies, and intellectual stimulation, as well as a healthy diet. Some studies link these approaches to the maintenance of cognitive function.

Doing things we enjoy gives us pleasure and adds meaning to our lives. People with Alzheimer's disease need to be active and do things they enjoy. However, don't expect too much. It's not easy for them to plan their days and do different tasks.

People with Alzheimer's may have trouble deciding what to do each day, which could make them fearful and worried or quiet and withdrawn, or they may have trouble starting tasks. Remember, the person is not being lazy. He or she might need help organizing the day or doing an activity.

Activity Planning

Plan activities that the person with Alzheimer's enjoys in your daily routine, and try to do them at a similar time each day. He or she can be a part of the activity or just watch. Here are things you can do to help the person enjoy the activity:

• Match the activity with what the person with Alzheimer's can do.
• Choose activities that can be fun for everyone.
• Help the person get started.
• Decide if he or she can do the activity alone or needs help.
• Watch to see if the person gets frustrated.
• Make sure he or she feels successful and has fun.
• Let him or her watch if that is more enjoyable.

Try These Activities

The person with Alzheimer's disease can do different activities each day. This keeps the day interesting and fun. Here are some daily activities people with Alzheimer's may enjoy:

• Household chores: Wash dishes, set the table, prepare food, sweep the floor, dust, sort mail and clip coupons, sort socks and fold laundry, sort recycling materials or other things.
• Cooking and baking: Decide what is needed to prepare the dish; measure, mix, and pour; tell someone else how to prepare a recipe; watch others prepare food.
• Exercise: Take a walk together, watch exercise videos or TV programs made for older people, use a stationary bike, use stretching bands, throw a soft ball or balloon back and forth, lift weights or household items such as soup cans.
• Music and dancing: Play music, talk about the music and the singer, ask what the person with Alzheimer's was doing when the song was popular, sing or dance to well-known songs, attend a concert or musical program.
• Pets: Feed, groom, walk, sit and hold a pet.
• Gardening: Take care of indoor or outdoor plants, plant flowers and vegetables, water the plants when needed, go to school events, talk about how much the plants are growing.
• Visiting with children: Play a simple board game, read stories or books, visit family members who have small children, walk in the park or around schoolyards, go to school events, talk about fond memories from childhood.

Going Out

People in the early stages of Alzheimer's disease may still enjoy going out to places they enjoyed in the past. For example, the person might enjoy going to a favorite restaurant, park, shopping mall, swimming pool, museum, or theater. Keep going on these outings as long as you are comfortable with them.

Plan Ahead for Outings

Here are some tips to make outings fun:

• Plan outings for the time of day when the person with Alzheimer's is at his or her best.
• Keep outings from becoming too long. Take note of how tired the person gets after a certain amount of time. Bring the person home before he or she becomes overtired.
• Use a business-size card to tell others about the person's disease. Sharing this information with store clerks or restaurant staff can make outings more comfortable for everyone. For example, the card could say "My family member has Alzheimer's disease. He might say or do things that are unexpected. Thank you for your understanding."

Eating Out

Going out to eat can be a welcome change, but it can also be challenging. Planning can help. Before choosing a restaurant, think about its layout, menu, noise level, waiting times, and the helpfulness of the staff. Ask yourself:

• Does the person with Alzheimer's disease know the restaurant well?
• Is it quiet or noisy most of the time?
• Are tables easy to get to? Do you need to wait before being seated?
• Is the service quick enough to keep the person from getting restless?
• Does the restroom meet the person's needs?
• Are foods the person with Alzheimer's likes on the menu?
• Is the staff understanding and helpful?

Before going to the restaurant, decide if it is a good day to go. If it is, think about the best time to go. Earlier in the day may be best, so the person with Alzheimer's is not too tired. Also, the restaurant may be less crowded, and service may be quicker. If you decide to go later, try to get the person to take a nap first.

Before you leave home, gather what you need. Helpful items may include utensils, a towel, wipes, or bathroom items.

At the Restaurant

• Tell the waiter or waitress about any special needs, such as extra spoons, bowls, or napkins.
• Ask for a table near the restroom and in a quiet area. Seat the person with his or her back to busy areas.
• Help the person choose a meal, if needed. Suggest food you know the person likes. Read parts of the menu or show the person pictures of the food. Limit the number of choices.
• Ask the server to fill glasses half full or leave the drinks for you to serve.
• Order finger food or snacks to hold the attention of the person with Alzheimer's.
• Go with the person to the restroom. Go into the stall if the person needs help.

Participating in Spiritual Activities

Like you, the person with Alzheimer's may have spiritual needs. If so, you can help the person stay part of his or her faith community. This can help the person feel connected to others and remember pleasant times. Here are some tips for helping a person with Alzheimer's disease who has spiritual needs:

• Involve the person in spiritual activities that he or she has known well. These might include worship, religious or other readings, sacred music, prayer, and holiday rituals.
• Tell people in your faith community that the person has Alzheimer's disease. Encourage them to talk with the person and show him or her that they still care.
• Play religious or other music that is important to the person. It may bring back old memories. Even if the person with Alzheimer's has a problem finding the right words to speak, he or she still may be able to sing songs or hymns from the past.

Traveling Overnight

Taking a person with Alzheimer's disease on an overnight trip is a challenge. Traveling can make the person more worried and confused, so it's important to think ahead. Here are some tips.

Plan Ahead

• Talk with the person's doctor about medicines to calm someone who gets upset while traveling.
• Find someone to help you at the airport, train station, or bus station.
• Keep important documents with you in a safe place. These include health insurance cards, passports, doctors' names and phone numbers, a list of medicines, and a copy of the person's medical records.
• Pack items the person enjoys looking at or holding for comfort.
• Travel with another family member or friend.
• Take an extra set of clothing in a carry-on bag.

People with memory problems may wander around a place they don't know well. In case someone with Alzheimer's disease gets lost:

• Make sure the person wears an ID bracelet or something else that tells others who he or she is.
• Carry a recent photo of the person with you on the trip.

After You Arrive

• Allow lots of time for each thing you want to do. Don't plan too many activities.
• Plan rest periods.
• Follow a routine like the one you use at home. For example, try to have the person eat, rest, and go to bed at the same time he or she does at home.
• Keep a well-lighted path to the toilet, and leave the bathroom light on at night.
• Be prepared to cut your visit short if necessary.

Visiting Family and Friends

Spending time with family and friends is important to people with Alzheimer's disease. They may not always remember who people are, but they often enjoy the company. Here are some tips to share with people you plan to visit:

• Be calm and quiet. Don't use a loud voice or talk to the person with Alzheimer's as if he or she were a child.
• Respect the person's personal space, and don't get too close.
• Make 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 know you. Try not to say, "Don't you remember?"
• Don't argue if the person is confused. Respond to the feelings that he or she expresses. Try to distract the person by talking about something different.
• Remember not to take it personally if the person doesn't recognize you, is unkind, or gets angry. He or she is acting out of confusion.
• Have ready some kind of activity, such as a familiar book or photo album to look at. This can help if the person with Alzheimer's is bored or confused and needs to be distracted. But be prepared to skip the activity if it is not needed.

At some point, people with Alzheimer’s disease will need help bathing, combing their hair, brushing their teeth, and getting dressed. Because these are private activities, people may not want help. They may feel embarrassed about being naked in front of caregivers. They also may feel angry about not being able to care for themselves. These suggestions may help with everyday care.

Bathing

Helping someone with Alzheimer’s disease take a bath or shower can be one of the hardest things you do. Planning can help make bath time better for both of you. If the person is afraid of bathing, follow his or her lifelong bathing habits, such as doing the bath or shower in the morning or before going to bed.

Safety Tips

To keep the person with Alzheimer’s safe during bath time:

• Never leave a confused or frail person alone in the tub or shower.
• Always check the water temperature before he or she gets in the tub or shower.
• Use a hand-held showerhead.
• Use a rubber bath mat and safety bars in the tub.
• Use a sturdy shower chair to support a person who is unsteady and to prevent falls. You can buy shower chairs at drug stores and medical supply stores.

Before Bathing

Before starting a bath or shower:

• Get the soap, washcloth, towels, and shampoo ready.
• Make sure the bathroom is warm and well lighted.
• Play soft music if it helps to relax the person.
• Be matter-of-fact about bathing. Say, “It’s time for a bath now.” Don’t argue about the need for a bath or shower.
• Be gentle and respectful. Tell the person what you are going to do, step by step.
• Make sure the water temperature is comfortable.
• Don’t use bath oil. It can make the tub slippery and may cause urinary tract infections.

During a Bath or Shower

Allow the person with Alzheimer’s to do as much as possible. This protects his or her dignity and helps the person feel more in control. Here are other tips:

• Put a towel over the person’s shoulders or lap. This helps him or her feel less exposed. Then use a sponge or washcloth to clean under the towel.
• Distract the person by talking about something else if he or she becomes upset.
• Give the person a washcloth to hold. This makes it less likely that he or she will try to hit you.

After Bathing

Try these suggestions:

• Prevent rashes or infections by patting the person’s skin with a towel. Make sure the person is completely dry. Be sure to dry between folds of skin.
• If the person is incontinent, use a protective ointment, such as petroleum jelly, around the rectum, vagina, or penis.
• If the person has trouble getting in and out of the bathtub, do a sponge bath instead.

Other Bathing Tips

For most people, a full bath or shower two or three times a week is enough. Between full baths, a sponge bath to clean the face, hands, feet, underarms, and genitals is all you need to do every day. Also:

• Washing the person’s hair in the sink with a hose attachment may be easier than doing it in the shower or bathtub.
• Get professional help with bathing if it becomes too hard for you to do on your own.

Dressing

People with Alzheimer’s disease often need more time to dress. It can be hard for them to choose their clothes. They might wear the wrong clothing for the season. They also might wear colors that don’t go together or forget to put on a piece of clothing. Allow the person to dress on his or her own for as long as possible.

Other tips for dressing:

• Lay out clothes in the order the person should put them on, such as underwear first, then pants, then a shirt, and then a sweater.
• Hand the person one thing at a time, or give step-by-step dressing instructions.
• Put away some clothes in another room to reduce the number of choices. Keep only one or two outfits in the closet or dresser.
• Keep the closet locked if needed.
• Buy three or four sets of the same clothes if the person wants to wear the same clothing every day.
• Buy loose-fitting, comfortable clothing, such as sports bras, cotton socks and underwear, and sweat pants and shorts with elastic waistbands.
• Avoid girdles, control-top pantyhose, knee-high nylons, high heels, and tight socks.
• Use Velcro® tape or large zipper pulls for clothing instead of shoelaces, buttons, or buckles.
• Try slip-on shoes that won’t slide off or shoes with Velcro® straps.

Grooming

When people feel good about how they look, they often feel better. Helping people with Alzheimer’s disease brush their teeth, shave, put on makeup, and get dressed can help them feel more like themselves.

Mouth Care

Here are some tips to help the person with Alzheimer’s care for his or her teeth and mouth.

• Show the person how to brush his or her teeth. Go step by step. Remember to let the person do as much as possible.
• Brush your teeth at the same time.
• Help the person clean his or her dentures.
• Ask the person to rinse his or her mouth with water after each meal and use mouthwash once a day.
• Try a long-handled, angled, or electric toothbrush if you need to brush the person’s teeth.
• Take the person to see a dentist. Some dentists specialize in treating people with Alzheimer’s. Ask the dentist how often the person should be seen.

Other Grooming

Here are some other suggestions for grooming:

• Encourage a woman to wear makeup if she has always used it. If needed, help her put on powder and lipstick. Don’t use eye makeup.
• Encourage a man to shave, and help him as needed. Use an electric razor for safety.
• Take the person to the barber or beauty shop. Some barbers or hairstylists may come to your home.
• Keep the person’s nails clean and trimmed.

People with Alzheimer’s disease may take medicines to treat the disease itself, mood or behavior changes, and other medical conditions. Caregivers can ensure that medicines are taken safely and correctly. Here are some tips to help you manage medications for someone with Alzheimer’s disease.

Learn the Basics

Know each medicine (prescription and over-the-counter) the person with Alzheimer’s disease takes. Ask the doctor or pharmacist:

• Why is this medicine being used?
• What positive effects should I look for, and when?
• How long will the person need to take it?
• How much should he or she take each day?
• When does the person need to take the medicine?
• What if the person misses a dose?
• What are the side effects, and what can I do about them?
• Can this medicine cause problems if taken with other medicines?

Managing medications is easier if you have a complete list of them. The list should show the name of the medicine, the doctor who prescribed it, how much the person with Alzheimer’s takes, and how often. Keep the list in a safe place at home, and make a copy to keep in your purse or wallet. Bring it with you when you visit the person’s doctor or pharmacist.

People with Alzheimer’s should be monitored when they start taking a new drug. Follow the doctor’s instructions and report any unusual symptoms right away. Also, let the doctor know before adding or changing any medications.

Use Medicines Safely

People with Alzheimer’s disease often need help taking their medicine. If the person lives alone, you may need to call and remind him or her or leave notes around the home. A pillbox allows you to put pills for each day in one place. Some pillboxes come with alarms that remind a person to take the medicine.

As Alzheimer’s gets worse, you will need to keep track of the person’s medicines. You also will need to make sure the person takes the medicines or give the medicines to him or her.

Some people with Alzheimer’s take medicines to treat behavior problems such as restlessness, anxiety, depression, trouble sleeping, and aggression. Experts agree that medicines to treat behavior problems should be used only after other strategies that don’t use medicine have been tried. Talk with the person’s doctor about which medicines are safest and most effective. With these types of medicines, it is important to:

• Use the lowest dose possible
• Watch for side effects such as confusion and falls
• Allow the medicine a few weeks to take effect

People with Alzheimer’s should NOT take anticholinergic drugs. These drugs are used to treat many medical problems such as sleeping problems, stomach cramps, incontinence, asthma, motion sickness, and muscle spasms. Side effects, such as confusion, can be serious for a person with Alzheimer’s. These drugs should NOT be given to a person with Alzheimer’s disease. You might talk with the person’s doctor about other options. Examples of these drugs include:

• Atrovent® (ipratropium)
• Dramamine® (dimenhydrinate)
• Diphenhydramine—includes brand names such as Benadryl® and Nytol®

Some people, especially those with late-stage Alzheimer’s, may have trouble swallowing pills. In this case, ask the pharmacist if the medicine can be crushed or taken in liquid form. Other ways to make sure medicines are taken safely:

• Keep all medications locked up.
• Check that the label on each prescription bottle has the drug name and dose, patient’s name, dosage frequency, and expiration date.
• Call the doctor or pharmacist if you have questions about any medicine.

Medicines to Treat Alzheimer’s Disease

There are five medicines available to treat Alzheimer’s disease. It’s important to understand that none of these medicines can cure or stop the disease. What they can do, for some people, is help slow down certain problems, such as memory loss. Slowing down memory loss can allow many people with Alzheimer’s disease to be more comfortable and independent for a longer time.

Medicines to Treat Other Medical Conditions

Many people with Alzheimer’s disease also have other medical conditions such as diabetes, high blood pressure, or heart disease. They may take different medicines for these conditions. It’s important to track all the medicines they take and take the list with you to every visit to a doctor.

Eating healthy foods helps everyone stay well. It’s even more important for people with Alzheimer’s disease. Here are some tips for healthy eating.

Buying and Preparing Food

When the person with Alzheimer’s disease lives with you:

• Buy healthy foods such as vegetables, fruits, and whole-grain products. Be sure to buy foods that the person likes and can eat.
• Give the person choices about what to eat—for example, “Would you like green beans or salad?”
• Buy food that is easy to prepare, such as premade salads and single food portions.

It may be helpful to have someone else make meals or use a service such as Meals on Wheels America, which brings meals right to your home.

When a person with early-stage Alzheimer’s disease lives alone, you can buy foods that the person doesn’t need to cook. Call to remind him or her to eat.

Maintain Familiar Routines

Change can be difficult for a person with Alzheimer’s disease. Maintaining familiar routines and serving favorite foods can make mealtimes easier. They can help the person know what to expect and feel more relaxed. If a home health aide or other professional provides care, family members should tell this caregiver about the person’s preferences.

Try these tips:

• View mealtimes as opportunities for social interaction. A warm and happy tone of voice can set the mood.
• Be patient and give the person enough time to finish the meal.
• Respect personal, cultural, and religious food preferences, such as eating tortillas instead of bread or avoiding pork.
• If the person has always eaten meals at specific times, continue to serve meals at those times.
• Serve meals in a consistent, familiar place and way whenever possible.
• Avoid new routines, such as serving breakfast to a person who has never routinely eaten breakfast.

As Alzheimer’s progresses, familiar routines and food choices may need to be adapted to meet the person’s changing needs. For example, a family custom of serving appetizers before dinner can be preserved, but higher-calorie items might be offered to help maintain the person’s weight.

Stay Safe

In the early stage of Alzheimer’s, people’s eating habits usually do not change. When changes do occur, living alone may not be safe anymore. Look for these signs to see if living alone is no longer safe for the person with Alzheimer’s:

• The person forgets to eat.
• Food has burned because it was left on the stove.
• The oven isn’t turned off.

Other difficulties, such as not sitting down long enough for meals and refusing to eat, can arise in the middle and late stages of the disease. These changes can lead to poor nourishment, dehydration, abnormally low blood pressure, and other problems.

Caregivers should monitor the person’s weight and eating habits to make sure he or she is not eating too little or too much. Other things to look for include appetite changes, the person’s level of physical activity, and problems with chewing or swallowing. Talk with the person’s doctor about changes in eating habits.

Being active and getting exercise helps people with Alzheimer’s disease feel better. Exercise helps keep their muscles, joints, and heart in good shape. It also helps people stay at a healthy weight and have regular toilet and sleep habits. You can exercise together to make it more fun.

You want someone with Alzheimer’s to do as much as possible for himself or herself. At the same time, you need to make sure that the person is safe when active.

Getting Started

Here are some tips for helping the person with Alzheimer’s disease stay active:

• Help get the activity started or join in to make the activity more fun.
• Be realistic about how much activity can be done at one time. Several 10-minute “mini-workouts” may be best.
• Take a walk together each day. Exercise is good for caregivers, too!
• Make sure the person with Alzheimer’s disease has an ID bracelet with your phone number if he or she walks alone.
• Check your local TV guide to see if there is a program to help older adults exercise, or watch exercise videos made for older people.
• Add music to the exercises if it helps the person with Alzheimer’s disease. Dance to the music if possible.
• Break exercises into simple, easy-to-follow steps.
• Make sure the person wears comfortable clothes and shoes that fit well and are made for exercise.
• Make sure he or she drinks water or juice after exercise.

Gentle Exercise

Some people with Alzheimer’s may not be able to get around well. This is another problem that becomes more challenging to deal with as the disease gets worse. Some possible reasons for this include:

• Trouble with endurance
• Poor coordination
• Sore feet or muscles
• Illness
• Depression or general lack of interest

Even if people have trouble walking, they may be able to:

• Do simple tasks around the home, such as sweeping and dusting.
• Use a stationary bike.
• Use soft rubber exercise balls or balloons for stretching or throwing back and forth.
• Use stretching bands, which you can buy in sporting goods stores. Be sure to follow the instructions.
• Lift weights or household items such as soup cans.

Good drivers are alert, think clearly, and make good decisions. When people with Alzheimer's disease are not able to do these things, they should stop driving. But some people may not want to stop driving or even think there is a problem.

As the caregiver, you must talk with the person about the need to stop driving. Do this in a caring way. Understand how unhappy the person may be to admit that he or she has reached this new stage.

Safety First

People with moderate to severe Alzheimer’s disease should never get behind the wheel. People with very mild Alzheimer’s may be able to drive safely in certain conditions. But as memory and decision-making skills worsen, they need to stop because a driver with dementia may not be able to react quickly when faced with a surprise on the road. Someone could get hurt or killed. If the person's reaction time or ability to focus slows, you must stop the person from driving.

Signs that the person should stop driving include:

• New dents and scratches on the car
• Taking a long time to do a simple errand and not being able to explain why, which may indicate the person got lost
• Two or more traffic tickets or increased car insurance premiums
• Comments from friends and neighbors about driving
• Speeding or sudden lane changes
• Confusing the brake and gas pedals
• Recommendations from a doctor to modify driving habits
• Other health issues that may affect driving ability, such as changes in vision, hearing, or mobility.

Some people with memory problems decide on their own not to drive, while others may deny they have a problem.

State laws vary regarding when a person with Alzheimer’s should stop driving. In some States, doctors are required to report to the State’s Department of Motor Vehicles whether a person has been diagnosed with Alzheimer’s or dementia. In others, anyone can report a potentially unsafe driver to the State. You may need to notify the person’s car insurance company, too.

It is a good idea to have the person’s driving skills assessed regularly by a professional. The American Occupational Therapy Association maintains a national database of driving specialists, or you can ask your State’s Department of Motor Vehicles or the person’s doctor to recommend someone who can test the person’s driving skills. Note that there may be fees associated with these types of assessments.

Department of Motor Vehicles staff may ask the person to retake a driving test. There are also a number of tools online that offer caregiver- or self-assessments.

When Driving Becomes Unsafe

Here are some ways to stop people with Alzheimer's disease from driving:

• Try talking about your concerns with the person.
• Take him or her to get a driving test.
• Ask the person's doctor to tell him or her to stop driving. The doctor can write, "Do not drive" on a prescription pad, and you can show this to the person.
• Hide the car keys, move the car, take out the distributor cap, or disconnect the battery.

Finding Other Transportation Options

If a person with Alzheimer's can no longer drive, find other ways that the person can travel on his or her own. Contact your local Area Agency on Aging or Eldercare Locator for information about transportation services in your area. These services may include free or low-cost buses, taxis, or carpools for older people. Some churches and community groups have volunteers who take older adults where they want to go. Family and friends are another great resource.

As a caregiver, you can do many things to make the person’s home a safer place. Think prevention—help avoid accidents by controlling possible problems.

While some Alzheimer’s behaviors can be managed medically, many, such as wandering and agitation, cannot. It is more effective to change the person’s surroundings—for example, to remove dangerous items—than to try to change behaviors. Changing the home environment can give the person more freedom to move around independently and safely.

Create an Alzheimer’s-Safe Home

Add the following items to the person’s home if they are not already in place:

• Smoke and carbon monoxide detectors in or near the kitchen and in all bedrooms
• Emergency phone numbers (ambulance, poison control, doctors, hospital, etc.) and the person’s address near all phones
• Safety knobs and an automatic shut-off switch on the stove
• Childproof plugs for unused electrical outlets and childproof latches on cabinet doors

You can buy home safety products at stores carrying hardware, electronics, medical supplies, and children’s items.

Lock up or remove these potentially dangerous items from the home:

• Prescription and over-the-counter medicines
• Alcohol
• Cleaning and household products, such as paint thinner and matches
• Poisonous plants—contact the National Poison Control Center at 1-800-222-1222 or www.poison.org to find out which houseplants are poisonous
• Guns and other weapons, scissors, knives, power tools, and machinery
• Gasoline cans and other dangerous items in the garage

Moving Around the House

Try these tips to prevent falls and injuries:

• Simplify the home. Too much furniture can make it hard to move around freely.
• Get rid of clutter, such as piles of newspapers and magazines.
• Have a sturdy handrail on stairways.
• Put carpet on stairs, or mark the edges of steps with brightly colored tape so the person can see them more easily.
• Put a gate across the stairs if the person has balance problems.
• Remove small throw rugs. Use rugs with nonskid backing instead.
• Make sure cords to electrical outlets are out of the way or tacked to baseboards.
• Clean up spills right away.

Make sure the person with Alzheimer’s has good floor traction for walking. To make floors less slippery, leave floors unpolished or install nonskid strips. Shoes and slippers with good traction also help the person move around safely.

Minimize Danger

People with Alzheimer’s disease may not see, smell, touch, hear, and/or taste things as they used to. You can do things around the house to make life safer and easier for the person.

Seeing

Although there may be nothing physically wrong with their eyes, people with Alzheimer’s may no longer be able to interpret accurately what they see. Their sense of perception and depth may be altered, too. These changes can cause safety concerns.

• Make floors and walls different colors. This creates contrast and makes it easier for the person to see.
• Remove curtains and rugs with busy patterns that may confuse the person.
• Mark the edges of steps with brightly colored tape so people can see the steps as they go up or down stairs.
• Use brightly colored signs or simple pictures to label the bathroom, bedroom, and kitchen.
• Be careful about small pets. The person with Alzheimer’s may not see the pet and trip over it.
• Limit the size and number of mirrors in your home, and think about where to put them. Mirror images may confuse the person with Alzheimer’s disease.
• Use dishes and placemats in contrasting colors for easier identification.

Touching

People with Alzheimer's may experience loss of sensation or may no longer be able to interpret feelings of heat, cold, or discomfort.

• Reset your water heater to 120°F to prevent burns.
• Label hot-water faucets red and cold-water faucets blue or write the words "hot" and "cold" near them.
• Put signs near the oven, toaster, iron, and other things that get hot. The sign could say, "Stop!" or "Don't Touch—Very Hot!" Be sure the sign is not so close that it could catch on fire. The person with Alzheimer's should not use appliances without supervision. Unplug appliances when not in use.
• Pad any sharp corners on your furniture, or replace or remove furniture with sharp corners.
• Test the water to make sure it is a comfortable temperature before the person gets into the bath or shower.

Smelling

A loss of or decrease in smell is common in people with Alzheimer’s disease.

• Use good smoke detectors. People with Alzheimer’s may not be able to smell smoke.
• Check foods in your refrigerator often. Throw out any that have gone bad.

Tasting

People with Alzheimer’s may not taste as well as before. They also may place dangerous or inappropriate things in their mouths.

• Keep foods like salt, sugar, and spices away from the person if you see him or her using too much.
• Put away or lock up things like toothpaste, lotions, shampoos, rubbing alcohol, soap, perfume, or laundry detergent pods. They may look and smell like food to a person with Alzheimer’s disease.
• Keep the poison control number (1-800-222-1222) by the phone.
• Learn what to do if the person chokes on something.

Hearing

People with Alzheimer’s disease may have normal hearing, but they may lose their ability to interpret what they hear accurately. This loss may result in confusion or overstimulation.

• Don't play the TV, CD player, or radio too loudly, and don't play them at the same time. Loud music or too many different sounds may be too much for the person with Alzheimer’s to handle.
• Limit the number of people who visit at any one time. If there is a party, settle the person with Alzheimer’s in an area with fewer people.
• Shut the windows if it's very noisy outside.
• If the person wears a hearing aid, check the batteries and settings often.

It may not be necessary to make all these changes; however, you may want to re-evaluate the safety of the person’s home as behavior and abilities change.

Is It Safe to Leave the Person with Alzheimer's Alone?

This issue needs careful evaluation and is certainly a safety concern. The following points may help you decide.

Does the person with Alzheimer's:

• Become confused or unpredictable under stress?
• Recognize a dangerous situation, for example, fire?
• Know how to use the telephone in an emergency?
• Know how to get help?
• Stay content within the home?
• Wander and become disoriented?
• Show signs of agitation, depression, or withdrawal when left alone for any period of time?
• Attempt to pursue former interests or hobbies that might now warrant supervision, such as cooking, appliance repair, or woodworking?

You may want to seek input and advice from a healthcare professional to assist you in these considerations. As Alzheimer's disease progresses, these questions will need ongoing evaluation.

Keep in mind that it may not be necessary to make all of the suggested changes. This article covers a wide range of safety concerns that may arise, and some modifications may never be needed. It is important, however, to re-evaluate home safety periodically as behavior and abilities change.

Throughout the Home

• Display emergency numbers and your home address near all telephones.
• Use an answering machine when you cannot answer phone calls, and set it to turn on after the fewest number of rings possible. A person with Alzheimer's disease often may be unable to take messages or could become a victim of telephone exploitation. Turn ringers on low to avoid distraction and confusion. Put all portable and cell phones and equipment in a safe place so they will not be easily lost.
• Install smoke alarms and carbon monoxide detectors in or near the kitchen and all sleeping areas. Check their functioning and batteries frequently.
• Avoid the use of flammable and volatile compounds near gas appliances. Do not store these materials in an area where a gas pilot light is used.
• Install secure locks on all outside doors and windows.
• Install alarms that notify you when a door or window is opened.
• Hide a spare house key outside in case the person with Alzheimer's disease locks you out of the house.
• Avoid the use of extension cords if possible by placing lamps and appliances close to electrical outlets. Tack extension cords to the baseboards of a room to avoid tripping.
• Cover unused electrical outlets with childproof plugs.
• Place red tape around floor vents, radiators, and other heating devices to deter the person with Alzheimer's from standing on or touching them when hot.
• Check all rooms for adequate lighting.
• Place light switches at the top and the bottom of stairs.
• Stairways should have at least one handrail that extends beyond the first and last steps. If possible, stairways should be carpeted or have safety grip strips. Put a gate across the stairs if the person has balance problems.
• Keep all medications (prescription and over-the-counter) locked. Each bottle of prescription medicine should be clearly labeled with the person's name, name of the drug, drug strength, dosage frequency, and expiration date. Child-resistant caps are available if needed.
• Keep all alcohol in a locked cabinet or out of reach of the person with Alzheimer's. Drinking alcohol can increase confusion.
• If the person with Alzheimer’s smokes, remove matches, lighters, ashtrays, cigarettes, and other means of smoking from view. This reduces fire hazards, and with these reminders out of sight, the person may forget the desire to smoke.
• Avoid clutter, which can create confusion and danger. Throw out or recycle newspapers and magazines regularly. Keep all areas where people walk free of furniture.
• Keep plastic bags out of reach. A person with Alzheimer's disease may choke or suffocate.
• Remove all guns and other weapons from the home or lock them up. Install safety locks on guns or remove ammunition and firing pins.
• Lock all power tools and machinery in the garage, workroom, or basement.
• Remove all poisonous plants from the home. Check with local nurseries or contact poison control (1-800-222-1222) for a list of poisonous plants.
• Make sure all computer equipment and accessories, including electrical cords, are kept out of the way. If valuable documents or materials are stored on a home computer, protect the files with passwords and back up the files. Password protect access to the Internet, and restrict the amount of online time without supervision. Consider monitoring computer use by the person with Alzheimer's, and install software that screens for objectionable or offensive material on the Internet.
• Keep fish tanks out of reach. The combination of glass, water, electrical pumps, and potentially poisonous aquatic life could be harmful to a curious person with Alzheimer's disease.

Outside Approaches to the House

• Keep steps sturdy and textured to prevent falls in wet or icy weather.
• Mark the edges of steps with bright or reflective tape.
• Consider installing a ramp with handrails as an alternative to the steps.
• Eliminate uneven surfaces or walkways, hoses, and other objects that may cause a person to trip.
• Restrict access to a swimming pool by fencing it with a locked gate, covering it, and closely supervising it when in use.
• In the patio area, remove the fuel source and fire starters from any grills when not in use, and supervise use when the person with Alzheimer's is present.
• Place a small bench or table by the entry door to hold parcels while unlocking the door.
• Make sure outside lighting is adequate. Light sensors that turn on lights automatically as you approach the house may be useful. They also may be used in other parts of the home.
• Prune bushes and foliage well away from walkways and doorways.
• Consider a "NO SOLICITING" sign for the front gate or door.

Entryway

• Remove scatter rugs and throw rugs.
• Use textured strips or nonskid wax on hardwood and tile floors to prevent slipping.

Kitchen

• Install childproof door latches on storage cabinets and drawers designated for breakable or dangerous items. Lock away all household cleaning products, matches, knives, scissors, blades, small appliances, and anything valuable.
• If prescription or nonprescription drugs are kept in the kitchen, store them in a locked cabinet.
• Remove scatter rugs and foam pads from the floor.
• Install safety knobs and an automatic shut-off switch on the stove.
• Do not use or store flammable liquids in the kitchen. Lock them in the garage or in an outside storage unit.
• Keep a night-light in the kitchen.
• Remove or secure the family "junk drawer." A person with Alzheimer's may eat small items such as matches, hardware, erasers, plastics, etc.
• Remove artificial fruits and vegetables or food-shaped kitchen magnets, which might appear to be edible.
• Insert a drain trap in the kitchen sink to catch anything that may otherwise become lost or clog the plumbing.
• Consider disconnecting the garbage disposal. People with Alzheimer's may place objects or their own hands in the disposal.

Bedroom

• Anticipate the reasons a person with Alzheimer's disease might get out of bed, such as hunger, thirst, going to the bathroom, restlessness, and pain. Try to meet these needs by offering food and fluids and scheduling ample toileting.
• Use a night-light.
• Use a monitoring device (like those used for infants) to alert you to any sounds indicating a fall or other need for help. This also is an effective device for bathrooms.
• Remove scatter rugs and throw rugs.
• Remove portable space heaters. If you use portable fans, be sure that objects cannot be placed in the blades.
• Be cautious when using electric mattress pads, electric blankets, electric sheets, and heating pads, all of which can cause burns and fires. Keep controls out of reach.
• If the person with Alzheimer's disease is at risk of falling out of bed, place mats next to the bed, as long as they do not create a greater risk of accident.
• Use transfer or mobility aids.

Bathroom

• Do not leave a severely impaired person with Alzheimer's alone in the bathroom.
• Remove the lock from the bathroom door to prevent the person with Alzheimer's from getting locked inside.
• Place nonskid adhesive strips, decals, or mats in the tub and shower. If the bathroom is uncarpeted, consider placing these strips next to the tub, toilet, and sink.
• Use washable wall-to-wall bathroom carpeting to prevent slipping on wet tile floors.
• Use a raised toilet seat with handrails, or install grab bars beside the toilet.
• Install grab bars in the tub/shower. A grab bar in contrasting color to the wall is easier to see.
• Use a foam rubber faucet cover (often used for small children) in the tub to prevent serious injury should the person with Alzheimer's fall.
• Use a plastic shower stool and a hand-held shower head to make bathing easier.
• In the shower, tub, and sink, use a single faucet that mixes hot and cold water to avoid burns.
• Set the water heater at 120°F to avoid scalding tap water.
• Insert drain traps in sinks to catch small items that may be lost or flushed down the drain.
• Store medications (prescription and nonprescription) in a locked cabinet. Check medication dates and dispose of outdated medications.
• Remove cleaning products from under the sink, or lock them away.
• Use a night-light.
• Remove small electrical appliances from the bathroom. Cover electrical outlets.
• If a man with Alzheimer's disease uses an electric razor, have him use a mirror outside the bathroom to avoid water contact.

Living Room

• Clear electrical cords from all areas where people walk.
• Remove scatter rugs or throw rugs. Repair or replace torn carpet.
• Place decals at eye level on sliding glass doors, picture windows, or furniture with large glass panels to identify the glass pane.
• Do not leave the person with Alzheimer's disease alone with an open fire in the fireplace. Consider alternative heating sources.
• Keep matches and cigarette lighters out of reach.
• Keep the remote controls for the television, DVD player, and stereo system out of sight.

Laundry Room

• Keep the door to the laundry room locked if possible.
• Lock all laundry products in a cabinet. Laundry detergent pods can be fatal if eaten by accident.
• Remove large knobs from the washer and dryer if the person with Alzheimer's tampers with machinery.
• Close and latch the doors and lids to the washer and dryer to prevent objects from being placed in the machines.

Garage/Shed/Basement

• Lock access to all garages, sheds, and basements if possible.
• Inside a garage or shed, keep all potentially dangerous items, such as tools, tackle, machines, and sporting equipment either locked away in cabinets or in appropriate boxes/cases.
• Secure and lock all motor vehicles and keep them out of sight if possible. Consider covering vehicles, including bicycles, that are not frequently used. This may reduce the possibility that the person with Alzheimer's will think about leaving.
• Keep all toxic materials, such as paint, fertilizers, gasoline, or cleaning supplies, out of view. Either put them in a high, dry place, or lock them in a cabinet.
• If the person with Alzheimer's is permitted in a garage, shed, or basement, preferably with supervision, make sure the area is well lit and that stairs have a handrail and are safe to walk up and down. Keep walkways clear of debris and clutter, and place overhanging items out of reach.

People with Alzheimer’s disease can be especially vulnerable during disasters such as severe weather, fires, floods, earthquakes, and other emergency situations. It is important for caregivers to have a disaster plan that includes the special needs of people with Alzheimer’s, whose impairments in memory and reasoning severely limit their ability to act appropriately in crises.

In general, you should prepare to meet the needs of your family for 3 to 7 days, including having supplies and backup options if you lose basic services such as water or electricity.

Gather Supplies

As you assemble supplies for your family’s disaster kit, consider the needs of the person with Alzheimer’s. Be sure to store all supplies in a watertight container. The kit might contain:

• Incontinence undergarments, wipes, and lotions
• Pillow, toy, or something the person can hold onto
• Favorite snacks and high-nutrient drinks
• Physician’s name, address, and phone number
• Copies of legal, medical, insurance, and Social Security information
• Ziplock® bags to hold medications and documents
• Recent photos of the person

Other supplies you may need are:

• Warm clothing and sturdy shoes
• Spare eyeglasses and hearing-aid batteries
• Medications
• Flashlights and extra batteries

If You Must Leave Home

In some situations, you may decide to “ride out” a natural disaster at home. In others, you may need to move to a safer place, like a community shelter or someone’s home. Relocation may make the person with Alzheimer’s very anxious. Be sensitive to his or her emotions. Stay close, offer your hand, or give the person reassuring hugs.

To plan for an evacuation:

• Know how to get to the nearest emergency shelters.
• If you don’t drive or driving is dangerous, arrange for someone to transport your group.
• Make sure the person with Alzheimer’s wears an ID bracelet.
• Take both general supplies and your Alzheimer’s emergency kit.
• Pack familiar, comforting items. If possible, plan to take along the household pet.
• Save emergency numbers in your cell phone, and keep it charged.
• Plan to keep neighbors, friends, and family informed about your location.
• If conditions are noisy or chaotic, try to find a quieter place.

If You Are Separated

It’s very important to stay with a person with Alzheimer’s in a disaster. Do not count on the person to stay in one place while you go to get help. However, the unexpected can happen, so it is a good idea to plan for possible separation:

• Enroll the person in the MedicAlert® + Alzheimer’s Association Safe Return® Program—an identification and support service for people who may become lost.
• Prepare for wandering. Place labels in garments to aid in identification. Keep an article of the person’s clothing in a plastic bag to help dogs find him or her.
• Identify specific neighbors or nearby family and friends who would be willing to help in a crisis. Make a plan of action with them should the person with Alzheimer’s be unattended during a crisis. Tell neighbors about the person’s specific disabilities, including inability to follow complex instructions, memory loss, impaired judgment, disorientation, and confusion. Give examples of simple one-step instructions that the person may be able to follow.
• Give someone you trust a house key and list of emergency phone numbers.
• Provide local police and emergency services with photos of the person with Alzheimer’s and copies of his or her medical documents, so they are aware of the person’s needs.

When you learn that someone has Alzheimer’s disease, you may wonder when and how to tell your family and friends. You may be worried about how others will react to or treat the person. Realize that people often sense when something has changed. By sharing what is happening, family and friends can help support you and the person with Alzheimer’s disease.

There’s no single right way to tell others about Alzheimer’s disease. When the time seems right, be honest with family, friends, and others. Use this as a chance to educate them about Alzheimer’s. You can:

• Tell friends and family about Alzheimer’s disease and how it affects memory, thinking, and behavior.
• Share articles, websites, and other information about the disease.
• Tell them what they can do to help, such as calling the person with Alzheimer's disease, providing meals, or helping with home repairs or safety modifications.

When a family member has Alzheimer’s disease, it affects everyone in the family, including children and grandchildren. It’s important to talk to them about what is happening.

Tips for Communicating

You can help family and friends understand how to interact with the person with Alzheimer’s disease. Here are some tips:

• Help family and friends realize what the person can still do and how much he or she still can understand.
• Give suggestions about how to start talking with the person. For example, make eye contact and say, “Hello George, I’m John. We used to work together.”
• Help them avoid correcting the person with Alzheimer’s if he or she makes a mistake or forgets something. Instead, ask family and friends to respond to the feelings expressed or talk about something different.
• Help family and friends plan fun activities with the person, such as family reunions or visiting old friends. Video calls can be a great way to connect, too. Viewing a photo album together can help if the person is bored or confused and needs to be distracted. Family and friends could also create a care package or make a photo album or video to send to the person.

Remind family and friends to:

• Call or video chat at times of day when the person with Alzheimer's is at his or her best.
• Be calm and quiet. Don’t use a loud voice or talk to the person as if he or she were a child.
• Respect the person’s personal space, and don’t get too close.
• Encourage a two-way conversation for as long as possible. Be patient when someone has trouble finding the right words or putting feelings into words. You can help them but try not to speak for them.
• Try not take it personally if the person does not remember you, is unkind, or gets angry. He or she is acting out of confusion.

When You’re Out in Public

Some caregiverscarry a card that explains why the person with Alzheimer’s might say or do odd things. For example, the card could read, “My family member has Alzheimer’s disease. He or she might say or do things that are unexpected. Thank you for your understanding.”

The card allows you to let others know about the person’s Alzheimer’s disease without the person hearing you. It also means you don’t have to keep explaining things.

When a family member has Alzheimer’s disease, it affects everyone in the family, including children and grandchildren. It’s important to talk to them about what is happening. How much and what kind of information you share depends on the child’s age and relationship to the person with Alzheimer’s.

Helping Kids Cope

Here are some tips to help kids understand what is happening:

• Answer their questions simply and honestly. For example, you might tell a young child, “Grandma has an illness that makes it hard for her to remember things.”
• Help them know that their feelings of sadness and anger are normal.
• Comfort them. Tell them no one caused the disease. Young children may think they did something to hurt their grandparent.

Talk with kids about their concerns and feelings. Some may not talk about their negative feelings, but you may see changes in how they act. Problems at school, with friends, or at home can be a sign that they are upset. A school counselor or social worker can help your child understand what is happening and learn how to cope.

A teenager might find it hard to accept how the person with Alzheimer’s has changed. He or she may find the changes upsetting or embarrassing and not want to be around the person. Don’t force them to spend time with the person who has Alzheimer’s. This could make things worse.

Give children information about Alzheimer’s that they can understand.

Spending Time Together and Alone

It’s important to show kids that they can still talk with the person with Alzheimer’s disease and help him or her enjoy activities. Many younger children will look to you to see how to act.

Doing fun things together can help both the child and the person with Alzheimer’s. Here are some things they might do:

• Do simple arts and crafts
• Play music or sing
• Look through photo albums
• Read stories out loud

If kids live in the same house as someone with Alzheimer’s disease:

• Don’t expect a young child to help take care of or “babysit” the person.
• Make sure they have time for their own interests and needs, such as playing with friends, going to school activities, or doing homework.
• Make sure you spend time with them, so they don’t feel that all your attention is on the person with Alzheimer’s.
• Be honest about your feelings when you talk with kids, but don’t overwhelm them.

If the stress of living with someone who has Alzheimer’s disease becomes too great, think about placing the person with Alzheimer’s into a respite care facility. Then, both you and your kids can get a much-needed break.

Holidays can be meaningful, enriching times for both the person with Alzheimer’s disease and his or her family. Maintaining or adapting family rituals and traditions helps all family members feel a sense of belonging and family identity. For a person with Alzheimer’s, this link with a familiar past is reassuring.

However, celebrations, special events, or holidays, which may include other people, can cause confusion and anxiety for a person with Alzheimer’s. He or she may find some situations easier and more pleasurable than others. The tips below can help you balance busy holiday activities with everyday care for a person with Alzheimer's disease.

Finding the Right Balance

Many caregivers have mixed feelings about holidays. They may have happy memories of the past, but they also may worry about the extra demands that holidays make on their time and energy.

Here are some ways to balance doing many holiday-related activities while taking care of your own needs and those of the person with Alzheimer’s disease:

• Celebrate holidays that are important to you. Include the person with Alzheimer’s as much as possible.
• Set your own limits, and be clear about them with others. You do not have to live up to the expectations of friends or relatives. Your situation is different now.
• Involve the person with Alzheimer’s in simple holiday preparations, or have him or her observe your preparations. Observing you will familiarize him or her with the upcoming festivities. Participating with you may give the person the pleasure of helping and the fun of anticipating and reminiscing.
• Consider simplifying your holidays around the home. For example, rather than cooking an elaborate dinner, consider a smaller dinner with close family. Instead of elaborate decorations, consider choosing a few select items.
• When health and safety provisions allow, encourage friends and family to visit even if it’s difficult. During COVID-19, follow CDC's physical distancing guidelines for all visits. Limit the number of visitors at any one time. Plan visits when the person usually is at his or her best. Virtual visits through video or phone calls are also a great way to connect over the holiday season.
• Prepare quiet distractions to use, such as looking at pictures or going for a walk, if the person with Alzheimer’s becomes upset or overstimulated.
• Make sure there is a quiet space where the person can rest and have time to recharge.
• Try to avoid situations that may confuse or frustrate the person with Alzheimer’s, such as changes in routine and strange places.
• Try to stay away from noise, loud conversations, loud music, lighting that is too bright or too dark, and having too much rich food or drink (especially alcohol).
• Find time for holiday activities you like to do. For example, go for a walk in the neighborhood and look at holiday decorations, or bake holiday cookies.
• If you receive invitations to events that the person with Alzheimer’s cannot attend, consider going yourself. Ask a friend or family member to spend time with the person while you’re out.

Holiday Home Safety Tips

Holiday decorations, such as Christmas trees, lights, or menorahs, should be secured so that they do not fall or catch on fire. Anything flammable should be monitored at all times, and extra precautions should be taken so that lights or anything breakable are fixed firmly, correctly, and out of the way of those with Alzheimer's disease. Candles should never be lit without supervision. When not in use, they should be put away. Also, try to avoid clutter, especially in walkways, during the holidays.

Preparing Guests

Explain to guests that the person with Alzheimer’s disease does not always remember what is expected and acceptable. Give examples of unusual behaviors that may take place such as incontinence, eating food with fingers, wandering, or hallucinations.

If this is the first visit since the person with Alzheimer’s became severely impaired, inform people ahead of time what they can expect. The memory-impaired person may not remember guests’ names or relationships but can still enjoy their company.

• Explain that memory loss is the result of the disease and is not intentional.
• Stress that the meaningfulness of the moment together matters more than what the person remembers.

Preparing the Person with Alzheimer’s

Here are some tips to help the person with Alzheimer’s disease get ready for visitors:

• Begin showing a photo of the guest to the person a week before arrival. Each day, explain who the visitor is while showing the photo.
• Arrange a phone call for the person with Alzheimer’s and the visitor. The call gives the visitor an idea of what to expect and gives the person with Alzheimer’s an opportunity to become familiar with the visitor.
• Keep the memory-impaired person’s routine as close to normal as possible.
• During the hustle and bustle of the holiday season, guard against fatigue and find time for adequate rest.

Holiday Hints During COVID-19

Caregivers may face new challenges during the COVID-19 pandemic. Older adults, particularly those with underlying chronic conditions, are more likely to become seriously ill from COVID-19. Adults with dementia may have trouble following personal protective measures, like wearing a mask or physical distancing. In addition, you may need to avoid visits with family and friends due to physical distancing guidelines.

This holiday season, you can find ways to safely celebrate the holidays that are important to you. Consider other ways to connect, like a virtual family reunion, video call singalong, or a phone call. If someone does visit you in-person, be sure to follow CDC's guidelines for physical distancing.

Alzheimer’s disease can cause changes in intimacy and sexuality in both a person with the disease and the caregiver. The person with Alzheimer’s may be stressed by the changes in his or her memory and behaviors. Fear, worry, depression, anger, and low self-esteem (how much the person likes himself or herself) are common. The person may become dependent and cling to you. He or she may not remember your life together and feelings toward one another. The person may even fall in love with someone else.

You, the caregiver, may pull away from the person in both an emotional and physical sense. You may be upset by the demands of caregiving. You also may feel frustrated by the person’s constant forgetfulness, repeated questions, and other bothersome behaviors.

Most caregivers learn how to cope with these challenges, but it takes time. Some learn to live with the illness and find new meaning in their relationships with people who have Alzheimer’s.

How to Cope with Changes in Intimacy

Most people with Alzheimer’s disease need to feel that someone loves and cares about them. They also need to spend time with other people as well as you. Your efforts to take care of these needs can help the person with Alzheimer’s to feel happy and safe. It’s important to reassure the person that:

• You love him or her.
• You will keep him or her safe.
• Others also care about him or her.

The following tips may help you cope with your own needs:

• Talk with a doctor, social worker, or clergy member about these changes. It may feel awkward to talk about such personal issues, but it can help.
• Talk about your concerns in a support group.
• Think more about the positive parts of the relationship.

How to Cope with Changes in Sexuality

The well spouse/partner or the person with Alzheimer’s disease may lose interest in having sex. This change can make you feel lonely or frustrated. You may feel that:

• It’s not okay to have sex with someone who has Alzheimer’s.
• The person with Alzheimer’s seems like a stranger.
• The person with Alzheimer’s seems to forget that the spouse/partner is there or how to make love.

A person with Alzheimer’s disease may have side effects from medications that affect his or her sexual interest. He or she may also have memory loss, changes in the brain, or depression that affect his or her interest in sex.

Here are some tips for coping with changes in sexuality:

• Explore new ways of spending time together.
• Focus on other ways to show affection, such as snuggling or holding hands.
• Try other nonsexual forms of touching, such as massage, hugging, and dancing.
• Consider other ways to meet your sexual needs. Some caregivers report that they masturbate.

Hypersexuality

Sometimes, people with Alzheimer’s disease are overly interested in sex. This is called hypersexuality. The person may masturbate a lot and try to seduce others. These behaviors are symptoms of the disease and don’t always mean that the person wants to have sex.

To cope with hypersexuality, try giving the person more attention and reassurance. You might gently touch, hug, or use other kinds of affection to meet his or her emotional needs. Some people with this problem need medicine to control their behaviors. Talk to the doctor about what steps to take.

Many people are unprepared to deal with the legal and financial consequences of a serious illness such as Alzheimer's disease or a related dementia. Legal and medical experts encourage people recently diagnosed with a serious illness — particularly one that is expected to cause declining mental and physical health — to examine and update their financial and health care arrangements as soon as possible. Basic legal and financial documents, such as a will, a living trust, and advance directives, are available to ensure that the person's late-stage or end-of-life health care and financial decisions are carried out.

A complication of diseases such as Alzheimer's and related dementias is that the person may lack or gradually lose the ability to think clearly. This change affects his or her ability to make decisions and participate in legal and financial planning.

People with early-stage Alzheimer's or a related dementia can often understand many aspects and consequences of legal decision-making. However, legal and medical experts say that many forms of planning can help the person and his or her family address current issues and plan for next steps, even if the person is diagnosed with later-stage dementia.

There are good reasons to retain a lawyer when preparing advance planning documents. For example, a lawyer can help interpret different state laws and suggest ways to ensure that the person's and family's wishes are carried out. It's important to understand that laws vary by state, and changes in a person's situation — for example, a divorce, relocation, or death in the family — can influence how documents are prepared and maintained. Life changes may also mean a document needs to be revised to remain valid.

Legal, Financial, and Health Care Planning Documents

Families beginning the legal planning process should discuss their approach, what they want to happen, and which legal documents they’ll need. Depending on the family situation and the applicable state laws, a lawyer may introduce a variety of documents to assist in this process, including documents that communicate:

• Health care wishes of someone who can no longer make health care decisions.
• Financial management and estate plan wishes of someone who can no longer make financial decisions.

Advance Health Care Directives for People with Dementia

Advance directives for health care are documents that communicate a person’s health care wishes. Advance directives go into effect after the person no longer can make decisions on their own. In most cases, these documents must be prepared while the person is legally able to execute them. Health care directives may include the following:

A durable power of attorney for health care designates a person, sometimes called an agent or proxy, to make health care decisions when the person with dementia can no longer do so.

A living will records a person's wishes for medical treatment near the end of life or if the person is permanently unconscious and cannot make decisions about emergency treatment.

A do not resuscitate order, or DNR, instructs health care professionals not to perform cardiopulmonary resuscitation (CPR) if a person's heart stops or if he or she stops breathing. A DNR order is signed by a doctor and put in a person's medical chart.

Overview of Medical Documents

In addition to these, there may be other documents for specific health care procedures including organ and tissue donation, dialysis, brain donation, and blood transfusions.

Tip: Get Permission for Caregiver Communication in Advance

Get permission in advance from the person with dementia to have his or her doctor and lawyer talk with a caregiver as needed. Advance permission can also be provided to others, such as Medicare or a credit card company, bank, or financial advisor. This can help with questions about care, a bill, or a health insurance claim. Without consent, the caregiver may not be able to get needed information.

Advance Directives for Financial and Estate Management

Advance directives for financial and estate management must be created while the person with Alzheimer's or a related dementia has “legal capacity" to make decisions on their own, meaning they can still understand the decisions and what they might mean. These directives may include the following:

A durable power of attorney for finances names someone to make financial decisions when the person with Alzheimer's or a related dementia no longer can. It can help avoid court actions that may take away control of financial affairs.

A will indicates how a person's assets and estate will be distributed upon their death. It also can specify:

• Arrangements for care of children, adult dependents, or pets
• Gifts
• Trusts to manage the estate
• Funeral and/or burial arrangements

Medical and legal experts say that the newly diagnosed person with Alzheimer's or a related dementia and his or her family should create or update a will as soon as possible after diagnosis.

A living trust addresses the management of money and property while a person is still living. The trust provides instructions about the person's estate and appoints someone, called the trustee, to hold titles to property and money on the person’s behalf. Using the instructions in the living trust, the trustee can pay bills or make other financial and property decisions when the person with dementia can no longer manage his or her affairs.

A living trust can:

• Cover a wide range of property (including cars, homes, jewelry, bonds, cash, etc.)
• Provide a detailed plan for property transfer or sale
• Avoid the expense and delay of probate (in which the courts establish the validity of a will)
• State how property and funds should be distributed when the last beneficiary dies

Overview of Legal and Financial Documents

Where Can I Get Help with Legal and Financial Planning?

Health care providers cannot act as legal or financial advisers, but they can encourage planning discussions between patients and their families. Doctors can also guide patients, families, the care team, attorneys, and judges regarding the patient's ability to make decisions. Discussing advance care planning decisions with a doctor is free through Medicare during the annual wellness visit. Private health insurance may also cover these discussions.

An elder law attorney helps older adults and their families interpret state laws, plan how wishes will be carried out, understand financial options, and learn how to preserve financial assets.

It’s a good idea to ask about a lawyer’s fees before making an appointment. The National Academy of Elder Law Attorneys and the American Bar Association can help families find qualified attorneys. Also, a local bar association can help identify free legal aid options. See the resources at the end of this article for more information.

Geriatric care managers are trained social workers or nurses who can help people with dementia and their families. Read more about geriatric care managers.

Advance Planning Advice for People with Dementia

Start discussions early. The rate of decline differs for each person with dementia, and his or her ability to be involved in planning will decline over time. People in the early stages of the disease may be able to understand the issues, but they may also be defensive, frustrated, and/or emotionally unable to deal with difficult questions. The person may even be in denial or not ready to face their diagnosis. This is normal. Be patient and seek outside help from a lawyer or geriatric care manager if needed. Remember that not all people are diagnosed at an early stage. Decision-making may already be difficult by the time the person with dementia is diagnosed.

Gather important papers. When an emergency arises or when the person with dementia can no longer manage their own affairs, family members or a proxy will need access to important papers, such as a living will or financial documents. To make sure the wishes of the person with dementia are followed, put important papers in a secure place and provide copies to family members or another trusted person. A lawyer can keep a set of the papers as well.

Review plans over time. Changes in personal situations — such as a divorce, relocation, or death in the family — and in state laws can affect how legal documents are prepared and maintained. Review plans regularly, and update documents as needed.

Reduce anxiety about funeral and burial arrangements. Advance planning for the funeral and burial can provide a sense of peace and reduce anxiety for both the person with dementia as well as his or her family.

Money Matters: How to Help A Person With Dementia

Problems managing money may be one of the first noticeable signs of dementia. To provide support, while also respecting the person’s independence, a family member or trusted friend can help:

• Watch for signs of money problems — Trouble paying for a purchase or a pile of unopened bills may indicate money issues. Start a conversation about available services to help older adults with their expenses. Giving the person small amounts of cash to have on hand and limiting credit cards may help manage spending.
• Set up automated bill payments — Arrange for utilities, mortgage, rent, or other expenses to be paid through automatic deductions from a bank account. This will make sure that bills are paid correctly and on time.
• Protect against scams or fraud — To lower the risk of telemarketing schemes, help place the person’s phone number on the National Do Not Call Registry. Consider registering the person for fraud alerts through their bank, credit card company, a national credit bureau or other credit monitoring service. Learn more about common scams and frauds.

As the disease progresses, a family member or trustee can take additional steps to:

• Establish consent to manage finances — To prevent serious problems, consider being named as a legal proxy to access and manage the person’s financial affairs.
• Plan for in-home and long-term care costs —Consider options for a personal care assistant or home health care aide and their costs, including possible Medicare or Medicaid support. If the person needs more care, consider assisted living communities and nursing homes.

Legal and Financial Planning Resources for Low-Income Families

Families who cannot afford a lawyer can still plan for the future. Area Agency on Aging officials may provide legal advice or help. Other possible sources of legal assistance and referral include state legal aid offices, state bar associations, local nonprofit agencies, foundations, and social service agencies.

People with Alzheimer’s disease often have problems managing their money. In fact, money problems may be one of the first noticeable signs of the disease.

Early on, a person with Alzheimer’s may be able to perform basic tasks, such as paying bills, but he or she is likely to have problems with more complicated tasks, such as balancing a checkbook. As the disease gets worse, the person may try to hide financial problems to protect his or her independence. Or, the person may not realize that he or she is losing the ability to handle money matters.

Signs of Money Problems

Look for signs of money problems such as trouble counting change, paying for a purchase, calculating a tip, balancing a checkbook, or understanding a bank statement. The person may be afraid or worried when he or she talks about money. You may also find:

• Unpaid and unopened bills
• Lots of new purchases on a credit card bill
• Strange new merchandise
• Money missing from the person’s bank account

A family member or trustee (someone who holds title to property and/or funds for the person) should check bank statements and other financial records each month to see how the person with Alzheimer’s disease is doing and step in if there are serious concerns. This can protect the person from becoming a victim of financial abuse or fraud.

Take Steps Early

Many older adults will be suspicious of attempts to take over their financial affairs. You can help the person with Alzheimer’s feel independent by:

• Giving him or her small amounts of cash or voided checks to have on hand
• Minimizing the spending limit on credit cards or having the cards cancelled
• Telling the person that it is important to learn about finances, with his or her help

To prevent serious problems, you may have to take charge of the person’s financial affairs through legal arrangements. It’s important to handle the transfer of financial authority with respect and understanding.

You can get consent to manage the person’s finances via a durable power of attorney for finances, preferably while the person can still understand and approve the arrangement. You can also ensure that the person finalizes trusts and estate arrangements.

Guard Against Financial Abuse and Fraud

People with Alzheimer’s may be victims of financial abuse or scams by dishonest people. Sometimes, the person behind the scam is a “friend” or family member. Telephone, email, or in-person scams can take many forms, such as:

• Identity theft
• Get-rich-quick offers
• Phony offers of prizes or home or auto repairs
• Insurance scams
• Health scams such as ads for unproven memory aids
• Threats

Look for signs that the person with Alzheimer’s may be a victim of financial abuse or fraud:

• There are signatures on checks or other papers don’t look like the person’s signature.
• The person’s will has been changed without permission.
• The person’s home is sold, and he or she did not agree to sell it.
• The person has signed legal papers (such as a will, power of attorney, or joint deed to a house) without knowing what the papers mean.
• Things that belong to you or the person with Alzheimer’s, such as clothes or jewelry, are missing from the home.

If you think a person with Alzheimer’s may be the victim of a scam, contact your local police department.

As they reach the end of life, people suffering from dementia can present special challenges for caregivers. People can live with diseases such as Alzheimer’s or Parkinson’s dementia for years, so it can be hard to think of these as terminal diseases. But, they do cause death.

Hard Decisions

Dementia causes the gradual loss of thinking, remembering, and reasoning abilities, making it difficult for those who want to provide supportive care at the end of life to know what is needed. Because people with advanced dementia can no longer communicate clearly, they cannot share their concerns. Is Uncle Bert refusing food because he’s not hungry or because he’s confused? Why does Grandma Sakura seem agitated? Is she in pain and needs medication to relieve it, but can’t tell you?

As these conditions progress, caregivers may find it hard to provide emotional or spiritual comfort. How can you let Grandpa know how much his life has meant to you? How do you make peace with your mother if she no longer knows who you are? Someone who has severe memory loss might not take spiritual comfort from sharing family memories or understand when others express what an important part of their life this person has been. Palliative care or hospice can be helpful in many ways to families of people with dementia.

Sensory connections—targeting someone’s senses, like hearing, touch, or sight—can bring comfort. Being touched or massaged can be soothing. Listening to music, white noise, or sounds from nature seem to relax some people and lessen their agitation.

When a dementia like Alzheimer’s disease is first diagnosed, if everyone understands that there is no cure, then plans for the end of lifecan be made before thinking and speaking abilities fail and the person with Alzheimer’s can no longer legally complete documents like advance directives.

End-of-life care decisions are more complicated for caregivers if the dying person has not expressed the kind of care he or she would prefer. Someone newly diagnosed with Alzheimer’s disease might not be able to imagine the later stages of the disease.

Alma and Silvia’s Story

Alma had been forgetful for years, but even after her family knew that Alzheimer’s disease was the cause of her forgetfulness, they never talked about what the future would bring. As time passed and the disease eroded Alma’s memory and ability to think and speak, she became less and less able to share her concerns and wishes with those close to her.

This made it hard for her daughter Silvia to know what Alma needed or wanted. When the doctors asked about feeding tubes or antibiotics to treat pneumonia, Silvia didn’t know how to best reflect her mother’s wishes. Her decisions had to be based on what she knew about her mom’s values, rather than on what Alma actually said she wanted.

Weighing Care Choices

Quality of life is an important issue when making healthcare decisions for people with dementia. For example, medicines are available that may delay or keep symptoms from becoming worse for a little while. Medicines also may help control some behavioral symptoms in people with mild-to-moderate Alzheimer’s disease.

However, some caregivers might not want drugs prescribed for people in the later stages of Alzheimer’s. They may believe that the person’s quality of life is already so poor that the medicine is unlikely to make a difference. If the drug has serious side effects, they may be even more likely to decide against it.

When making care decisions for someone else near the end of life, consider the goals of care and weigh the benefits, risks, and side effects of the treatment. You may have to make a treatment decision based on the person’s comfort at one end of the spectrum and extending life or maintaining abilities for a little longer at the other.

With dementia, a person’s body may continue to be physically healthy while his or her thinking and memory are deteriorating. This means that caregivers and family members may be faced with very difficult decisions about how treatments that maintain physical health, such as installing a pacemaker, fit within the care goals.

Dementia’s Unpredictable Progression

Dementia often progresses slowly and unpredictably. Experts suggest that signs of the final stage of Alzheimer’s disease include some of the following:

• Being unable to move around on one’s own
• Being unable to speak or make oneself understood
• Needing help with most, if not all, daily activities, such as eating and self-care
• Eating problems such as difficulty swallowing

Because of their unique experience with what happens at the end of life, hospice and palliative care experts might be able to help identify when someone in the final stage of Alzheimer’s disease is in the last days or weeks of life.

Caregiver Support

Caring for people with Alzheimer’s or other dementias at home can be demanding and stressful for the family caregiver. Depressionis a problem for some family caregivers, as is fatigue, because many feel they are always on call. Family caregivers may have to cut back on work hours or leave work altogether because of their caregiving responsibilities.

Many family members taking care of a person with advanced dementia at home feel relief when death happens—for themselves and for the person who died. It is important to realize such feelings are normal. Hospice—whether used at home or in a facility (such as a nursing home)—gives family caregivers needed support near the end of life, as well as help with their grief, both before and after their family member dies.

Questions to Ask About End-of-LifeCare for a Person with Dementia

You will want to understand how the available medical options presented by the healthcare team fit into your family’s particular needs. You might want to ask questions such as:

• How will the approach the doctor is suggesting affect your relative’s quality of life? Will it make a difference in comfort and well-being?
• If considering home hospice for your relative with dementia, what will be needed to care for him or her? Does the facility have special experience with people with dementia?
• What can I expect as the disease gets worse?