For the caregiver

| January 1, 2007

For the caregiver

Alzheimer's disease has a profound emotional impact on the family. Fear, denial, anger, resentment, guilt, embarrassment, and grief are all normal reactions. Getting a diagnosis can be an overwhelming experience, and when the diagnosis is uncertain, the family may feel suspended between hope and despair. In either case, it's important that family members not succumb to inaction because, as difficult as it may seem, several vital issues must be addressed immediately. Each situation is different, but family members must plan for the future. And people in the early stages of Alzheimer's should be encouraged to participate in the process. The following discussion outlines basic matters that need to be addressed.

Legal decisions

There will come a time when the person with Alzheimer's can no longer manage his or her affairs. Do not assume that you'll have advance notice. Alzheimer's disease is unpredictable, and the person whose cognitive problems seem mild may unexpectedly make irrational decisions with disastrous consequences. If possible, legal documents should be executed while the person is still competent.

Legal competence

The issue of legal competence is complex. Essentially, all adults are presumed competent to make decisions. Incompetence, which can be determined only by a court, is usually based on a person's functional abilities, not simply on the basis of diagnosis. What's more, incompetence can be difficult to prove. Poor business sense and memory lapses, for example, are not sufficient evidence of incompetence.

A legal document called a durable power of attorney is usually the most straightforward way for a person to grant another person (generally the caregiver) the power to make decisions on his or her behalf regarding property, residence, and other financial affairs. A durable power of attorney also permits the person to delegate certain responsibilities that are proving difficult, such as managing money or paying bills.

The authority that is handed over can be very narrow or quite broad. For example, you might give someone the authority to sell your car or to make all financial decisions, including selling your home, managing your assets, and dealing with the Internal Revenue Service. The durable power of attorney can be written so that it starts as soon as it's signed, or it can go into effect at a future point in time, for example, if you become incapacitated.

A trust is another method of authorizing an individual or institution to manage someone's affairs. A trust is more far-reaching and complex than a durable power of attorney. Trusts allow you to officially gather assets, including a house, money, stocks, and so forth, and place them in a legal entity. While you're alive, you are the trust's beneficiary. You may control distributions yourself or through trustees elected to carry out your wishes at a time or point that you specify. When you die, the trustees distribute remaining assets to the other beneficiaries whom you chose. The wishes you relay through a trust can take effect today, if you like, or upon a triggering event, such as when you can no longer handle your own affairs because of mental or physical incapacity.

Executing a durable power of attorney or trust is far simpler than trying to establish a guardianship (also called conservatorship or committeeship), which requires court hearings and proof of incompetence. Some family lawyers are willing to handle the necessary legal documents. If yours is not, he or she may refer you to another lawyer. AARP or the Alzheimer's Association can also recommend an attorney in your area who's experienced in elder law.

Advance directives

An advance directive for health care should also be executed. Although a living will is the best-known document of this type, people with Alzheimer's disease and their families should be aware of its narrow application. Living wills apply to terminal illnesses, which may exempt Alzheimer's disease and many other conditions. The living will can be interpreted different ways, and some states may not permit the withdrawal of life-sustaining treatment, such as artificial feeding. In contrast, the durable power of attorney for health care can apply to all medical situations, not just terminal illness. A person designates a surrogate to make medical decisions on his or her behalf. Once an advance directive such as the living will or durable power of attorney for health care is completed, the person's physician should have a copy. It's a good idea to keep extra copies on hand in case the need for emergency treatment or hospitalization arises.

Making a will

People with Alzheimer's disease and their spouses or other designated surrogates need to have current wills that specify beneficiaries and how the disposal of their estates should be handled. If you are a spouse or primary caregiver, don't neglect discussing with other family members and your attorney who should be the beneficiary in the event of your death and how the person with Alzheimer's disease is to be cared for if that occurs.

Financial matters

Eventually, someone must take over the mundane task of paying bills and managing the financial affairs of anyone with Alzheimer's disease. If you don't already have access to all bank and investment accounts, you'll need a durable power of attorney that authorizes banks and brokerage firms to add your name to the person's accounts (see "Legal competence"). The wording of joint accounts matters; an account for "John Smith and Mary Jones" may require both signatures on all transactions, while either person's signature would be sufficient were the account for "John Smith or Mary Jones." Make sure that only one signature is required to avoid problems when the individual becomes incapacitated.

Stories of people with Alzheimer's disease giving away money to strangers, ordering expensive items, paying shady contractors for unnecessary repairs, and hiding large sums of cash around the house are all too common. To prevent a financial disaster, the spouse or another trusted individual should take control of the person's checkbook and credit cards as soon as the person's judgment is faulty. A financial planner may be able to offer guidance and assistance.

Seeking financial assistance

You need to evaluate assets, income, and insurance coverage and to determine whether the person in your care is eligible for benefits provided by Medicare (see "Medicare coverage for Alzheimer's disease"), Medicaid, the Department of Veterans Affairs, or other agencies. Caring for someone with Alzheimer's disease can be costly, and the family may face major decisions — for example, whether to sell the home or transfer assets to other family members. Some of these decisions can be postponed, but you should become thoroughly familiar with the family's financial status and be prepared to move quickly should the need arise.

Medicare coverage for Alzheimer's disease

In the past, Medicare automatically denied coverage for certain medical services for people with Alzheimer's on the grounds that treatment wouldn't yield any improvement. Typically, these services were covered for other Medicare beneficiaries, but not those with Alzheimer's or another dementia. This situation changed in 2001. Now, people with Alzheimer's disease who are eligible for Medicare can be reimbursed for many services, including mental health care, occupational or physical therapy, speech therapy, and some home health care.

The policy change underscores that individuals with Alzheimer's disease can benefit significantly from these therapies. Many advocates believe that the coverage may enable people to live at home longer. For example, occupational therapy may improve a person's ability to dress or bathe himself, while physical therapy may steady a wobbly gait. Now, families who are interested in pursuing these services for a patient might not have to shoulder all the costs.

To find out more about Medicare coverage, call the Centers for Medicare & Medicaid Services at 877-267-2323 (toll free) or 410-786-3000, or go online at

Explaining the condition

What should you tell someone who has Alzheimer's? Most experts say if the person asks what's wrong, you should be honest; knowing that the problem is a disease, not "insanity," is often a relief for the person affected. Telling someone who has not asked may be helpful, particularly if the person appears troubled about his or her condition. You may well be the person who knows the best way to handle the situation. Generally, though, it's best for the physician to explain the diagnosis to someone. New information doesn't always "stick," however, so don't be surprised if someone with Alzheimer's continues to ask what's wrong. In such cases, you can offer a reassuring but brief explanation.

You may also need to take some time to talk to family and friends. Individuals with Alzheimer's disease often look quite healthy in the early stages of disease, and people outside the household may be unaware that anything is wrong. But it's important to tell other family members and friends about the diagnosis as soon as possible, for two reasons. First, they need to know both that any unusual behavior is caused by disease, not by "craziness" or "meanness," and that they'll need new ways of responding as the person's cognitive abilities decline. Second, you and any other caregivers need emotional support and practical help from others (see "Tips for caregivers and friends").

Tips for caregivers and friends

Get organized. Call a family meeting to decide what kind of care is needed and who should give it or research it. Anyone who can't attend in person should try to do so by phone. Try to put aside differences so the focus stays on your loved one's needs. Make a list of what needs to be done and who can do it. While it's helpful to have one person take primary responsibility, everyone should offer to take on specific tasks.

Ask for help. Try to find out whether your loved one already has an informal network of support. Do any friends and neighbors stop by to visit or lend a hand? If you ask them to do so, many people may be willing to help more formally or call you if anything seems amiss.

Offer support. If you're not the main caregiver, ask that person how you can help. Offer specific suggestions. For example, could you take over for a weekend or vacation? Could you provide or coordinate certain services, such as housecleaning or transportation to doctor's appointments? If you're the main caregiver, spell out what needs to be done and what sort of help you require. Don't try to do everything yourself "because it's easier." Let other people step up to the plate. When someone offers help, accept it. If no one offers help, ask for it. Write out a list of smaller tasks that people could do, such as cooking an occasional dinner or running errands, and dole these out. Or simply ask others to check off what they can do.

Collect medical information. Keep a health care file that includes information on the patient's current ailments, medications, allergies, medical history, specialists seen, and treatments.

Obtain respite care. Regular respite care from professionals, family, and friends can give you much-needed breaks. Find out if there are any adult day care services available in your community.

Join a support group. Support groups allow you to talk out frustrations with other people in your situation and get helpful ideas. Some of these groups are available online; others are run by the Alzheimer's Association, local hospitals, senior centers, or community groups.

Take care of yourself. Eat well, get enough rest and exercise, and pursue activities that bring you pleasure. If it's too hard to find the time, consider getting extra help with some household chores.

Coping with daily challenges

The abilities of someone with Alzheimer's can fluctuate from day to day, or even hour to hour, which makes the caregiver's job all the more difficult. Often, the person's abilities wax and wane for the same reasons that a healthy person's abilities fluctuate: fatigue, anxiety, discomfort, or medications. Other illnesses may also play a role.

Equally confusing may be a seeming inconsistency in an individual's abilities. He or she may be able to perform a complex task, but not a simple one. Family members may suspect the person is not trying hard enough or is being deliberately uncooperative when, in fact, the uneven loss of abilities is explained by the disease process itself.

Some techniques can improve the quality of life for both patient and caregiver (see "Techniques for living with someone with Alzheimer's disease"). For example, by breaking an activity into simple steps and talking the person through it one step at a time, you can turn a complicated task such as getting dressed into a manageable one.

Techniques for living with someone with Alzheimer's disease

Communication

Use simple phrasing and short sentences, but be careful to avoid talking to the person as if he or she is a child.

To get the person's attention, begin by using his or her name.

Be patient. Give someone with Alzheimer's time to complete a sentence or thought, and try not to interrupt.

Bathing

Follow the person's old routines as much as possible.

Prepare everything in advance.

Lay out towels, soap, shampoo, and clothes. Have the water ready and at the right temperature before bringing him or her into the bathroom.

Avoid discussing whether a bath is needed. If the person refuses to get into the tub or shower, be flexible and suggest an alternative. If all else fails, try again later.

Be calm, gentle, and reassuring. If the person seems disturbed at this invasion of privacy, cover portions of his or her body with a towel.

Encourage him or her to do as much as possible without hands-on help. Talk through each step.

Check the skin for rashes and sores. Use powder, cornstarch, or body lotion on dry skin.

Safety tips: Use rubber tub mats, tub seats, grab bars, nonslip bathmats, etc. Do not use bath oil or products that make the tub slippery. Put razors and electrical appliances out of reach. Take the lock off bathroom doors.

Dental care

Prepare the toothbrush and demonstrate how to brush.

If the person will not brush and refuses assistance, try a foam applicator or a cloth moistened with mouthwash.

Dressing and grooming

Consider the person's past grooming habits, but keep grooming simple to avoid frustration.

Avoid forcing the person to choose what to wear. Remove clothes that are out of season or seldom worn.

Try to establish a routine in which you help the person dress at the same time each day.

Select simple clothing the person can manage easily without assistance. Avoid buttons, hooks, snaps, and ties.

Lay out clothing in the order that it should be put on.

Safety tips: Avoid shoes with slippery soles, pants or dresses that are too long or full, and long or full sleeves that may catch on doorknobs or furniture.

Mealtimes

Playing with food may be a signal that the person has too many choices. Put one utensil on the table and one food on the plate at a time.

Reduce sensory confusion at meals: Make sure the area is well lit. Use a plate color that contrasts with the food. Remove condiments from the table.

Eliminate distractions. Make sure the person is comfortably seated and doesn't need to use the bathroom.

Cut food into small pieces. If he or she chokes easily, switch to soft foods. Curved spoons, divided plates, and straws can make self-feeding more manageable.

Serve foods containing fiber to help prevent constipation.

Safety tips: Don't serve food or drink that is too hot. Remind the person to eat slowly and chew each bite thoroughly. If eating nonfood items becomes a problem, keep things like dog biscuits and flower bulbs out of sight.

Toileting

Put a colorful sign or reflective tape on the bathroom door to make it easy to find.

Buy slacks and pants with elastic waists, which are easier to manage than snaps and buttons.

Keep a diary of when the person urinates and has bowel movements, and remind him or her to use the bathroom at these intervals. Restlessness or agitation may indicate bladder or rectal fullness.

Help the person get into a comfortable position on the toilet.

If the person has trouble urinating, have him or her blow bubbles through a straw in a glass of water.

Restrict fluids two hours before bedtime. A portable commode or urinal bottle at the bedside may be helpful.

Use incontinence aids such as disposable briefs, pads to protect furniture, and condom catheters for men.

Try to be calm and understanding when accidents occur.

Sleeping

Discourage long naps during the day.

An afternoon walk or other exercise may promote a better night's sleep.

The sleeping area should be quiet and dim, but not completely dark. Keep a night-light on in the bedroom (and in the bathroom).

Be sure the person avoids caffeine after about 1 p.m.

Safety tips: Place locks near the bottom of doors leading outside. Lock all outside windows, and place a gate on stairs.

Activity

Observe how much activity the person can tolerate. Some may still enjoy a meal out or a social gathering, but others may become overstimulated or anxious.

Look for signs that the person is becoming frustrated. If so, turn the person's attention to another activity or offer help.

Provide opportunities for exercise, outdoor walks, and rides in the car—activities that people with Alzheimer's tend to enjoy.

Focus on variations of activities the person enjoyed before becoming ill. If he or she liked cooking, for instance, he or she may be able to wash vegetables.

Eat well, get enough rest and exercise, and pursue activities that bring you pleasure. If it's too hard to find the time, consider getting extra help with some household chores.

Decisions about driving

One of the first questions many families ask is whether people with Alzheimer's disease should stop driving immediately. If the person is only mildly impaired, the answer may not be simple. Some advocates for the elderly believe that driving privileges should not be taken away until a person becomes an unsafe driver. The problem is trying to determine when a person is unsafe before an accident occurs.

Driving requires a complex interaction of eyes, brain, and muscles, as well as the ability to solve problems quickly. A person may appear to drive well until an unexpected situation occurs. The complicated stops, starts, and zigzags of city traffic can cause someone with Alzheimer's to panic or freeze with indecision. A University of California study found that the driving skills of people with mild Alzheimer's were significantly poorer than those of other elderly persons, including people with some other forms of dementia.

The person's general behavior in other situations should alert the family as to when safety behind the wheel is questionable. Individuals who exhibit poor judgment, inattentiveness to what's going on around them, clumsiness, and slow or inappropriate reactions certainly should not drive. A tactful approach that preserves the person's self-esteem may work. Some people agree to stop driving if another reason is given — for instance, the car needs repair.

People with Alzheimer's disease sometimes take seriously a written prescription from a physician that says, "Do not drive." If all this fails, you may need to seek advice from a lawyer or an official with the Department of Public Safety in your state. Procedures vary, but generally, a driver's license can be suspended on the basis of a physician's written statement. If nothing else works, you can sell the car.

Special precautions for wanderers

Keeping an individual with Alzheimer's disease safe is a heavy responsibility (see "Safety measures"). The most dangerous and distressing behavior is wandering. Inability to control this behavior is often a family's main reason for deciding to place a loved one in a nursing home.

Less drastic measures often work well for a time. Buy an identification bracelet engraved with "memory impaired" and the person's name, address, and phone number. Make sure the bracelet is too small to slip off and is securely fastened. Bracelets can be obtained through the Alzheimer's Association (see "Resources"), which also has a nationwide program to locate lost persons.

MedicAlert, a company that manufactures ID bracelets, has a program to help low-income families purchase bracelets. Information about MedicAlert is available at pharmacies. As another precaution, take photographs that you can give to the police if the person in your care becomes lost.

It can be especially exhausting for a caregiver when the patient gets up at night and dresses, tries to cook, or goes outside. You can curtail night wandering by installing door locks that a mentally confused person is unlikely to figure out, but which can easily be opened by others. A latch near the bottom of a door often works well. Caring for someone with Alzheimer's disease is a difficult job. Others who've been through this experience recommend that you be flexible, take things a day at a time, and, when possible, maintain a sense of humor.

Safety measures

An environment that's safe for the average family nearly always contains hidden hazards for someone who is mentally impaired. As you try to anticipate safety hazards, look at the world through the eyes of a cognitively impaired person. Conduct a thorough inspection of all areas in and around the house, looking for potentially harmful things that the person with Alzheimer's might misuse or misinterpret.

Correct hazards that could cause tripping and falling: cluttered areas, extension cords, throw rugs, slippery floors, and uneven surfaces.

Lower the temperature on water heaters and insulate any exposed hot-water pipes. Block off radiators with furniture or a gate.

Keep cleaning supplies, insecticides, gasoline, paint, solvents, and medicines out of reach or stored in cabinets with childproof latches. Get rid of poisonous houseplants, and put small items (pins, buttons, etc.) out of reach.

Hide the stove knobs so the person can't turn on the burners. If you have an electric stove, install a switch that inactivates the burners, or switch off the stove at the fuse box or circuit breaker. If you have a gas stove, ask the local gas company for suggestions on how to disable it.

Make certain that all stairs have sturdy handrails. Install a gate at the top of the stairs.

Install handrails and grab bars in the bathroom. Use a skid-resistant mat inside the tub or shower.

Lock away all firearms, power tools, and machinery.

Finding help and support

Families often complain that physicians don't adequately explain what they need to know. To avoid feeling isolated, learn everything you can about the disease and about dealing with the person who has Alzheimer's. An excellent place to start is the Alzheimer's Association (see "Resources"), an organization that helps families cope with the demands of the disease. It has assembled a wealth of information from health professionals and caregivers, including practical guides for managing nearly any problem you might encounter.

The Alzheimer's Association organizes family support groups where caregivers share their problems and solutions. It also connects families with community resources, including adult day care programs (many of which are specifically geared toward patients with dementia), in-home respite services, and other supportive activities.

Caregivers are often guilty of trying to shoulder the burden alone because they are too shy, proud, or afraid to seek help. All too often, they wear themselves out and become depressed or ill. Caring for someone with Alzheimer's is a major undertaking that is beyond the resources of a single person. It's essential that you care for yourself by getting away from your responsibilities from time to time and, if you suspect that you're becoming depressed, seeking professional help. You also need to recognize your own limits. The time may come when you can no longer provide in-home care and must move the person to a long-term residential care facility (see "Long-term residential care").

Review Date: 2007-01-01

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