Alzheimer's disease (AD) gets worse over time, and the course of the disease varies from person to person. Some people have the disease for only the last five years of their lives, while others may have it for as long as 20 years. The most common cause of death in people with Alzheimer's disease is infection.
In managing the disease, physical exercise and social activity are important, as are proper nutrition, health maintenance, and a calm and well-structured environment.
For people who have been diagnosed with Alzheimer's:
Practical tips for taking care of someone with Alzheimer's:
- Legal aspects
- Caring for a person with behavior and communication problems
- Caring for your loved one's personal needs
- Eating and nutrition
- Benefits of exercise
- Sundown syndrome—people with Alzheimer's may decline in the evening
- Safety at home
- Driving and alternate transportation
- Traveling with a person with Alzheimer's
Help for caregivers:
The economic and social burden of AD is very high; it is estimated that $80 billion to $100 billion is spent annually on the care of AD patients, and the cost per family is over $200,000 for each affected patient. Caregivers spend an average of 70 to 100 hours per week providing care and are more likely to require medical care themselves, including treatment for depression.
When you get an illness like bronchitis or the flu, you know you will be feeling better and functioning normally within a week or so. Alzheimer's disease is different. It will never go away and can change your life and lifestyle in many ways.
Disability and fatigue may become a frequent part of your day. Physical and mental changes from Alzheimer's disease may occur and affect your mood and even your appearance. These changes may diminish your positive self-image. When you don't feel good about yourself, you may prefer isolation and withdraw from friends and social activities.
Alzheimer's disease also can influence your ability to function and get around at home. Confusion, as well as impaired judgment and disorientation, may require you to modify your work activities and environment. Decreased work ability and the increasing cost of care can lead to financial difficulties.
Specific tasks may take much longer to accomplish. You may need the help of your spouse, a relative, or a home healthcare provider. As your life changes, you may feel a loss of control and more anxious from the uncertainty of what lies ahead.
Stress can build and influence how you feel about life. Prolonged stress can lead to frustration, anger, hopelessness, and, at times, depression—all of which can worsen the symptoms of Alzheimer's disease. The person with the illness is not the only one affected. Family members are also influenced by the persistent health changes of a loved one.
Alzheimer's disease, like many other chronic illnesses, will affect you both physically and mentally. It is important to realize that you are not alone and that if you feel you need help coping, you should consider seeking counseling.
The decision to seek counseling is an important step. Too often, people don't get help because they feel guilt, shame, or embarrassment. By deciding to get help, you have made a choice to feel better and to improve your life. Taking action early will enable you to understand and deal with the many effects of a chronic illness. Learning to manage stress will help you to maintain a positive physical, emotional, and spiritual outlook on life. If depression is present, medications other than those treating the physical illness may be ordered to help lift your mood.
Although no cure for Alzheimer's disease is now available, planning and medical/social management can help ease the burden on both patients and family members. Physical exercise, good nutrition, activities, and social interaction are important. A calm, structured environment also may help the person with Alzheimer's disease to continue functioning as long as possible.
Your healthcare provider can refer you to a mental healthcare professional, who could be a family therapist, social worker, psychologist, psychiatrist, or other professional. First, you will receive an "assessment," a review of your mental health. The assessment is used to diagnose the problem and determine the best treatment. You will be asked to describe why you want counseling, any symptoms you have (emotional, mental, and physical), and your medical history. You may be given a question-and-answer survey.
Once you complete the assessment, a treatment plan can be chosen. At this time, you and your counselor can discuss:
- The best type of counseling
- The best setting for counseling (counselor's office, outpatient clinic, hospital, residential treatment center)
- Who will be included in your treatment (you alone, family members, others with similar problems)
- How often you should go to counseling
- How long counseling may last
- Any medications that may be needed (see our section on treatments for some of the disruptive symptoms of Alzheimer's disease)
People with early-onset Alzheimer's disease must understand that life is not over. While it's true that your life will change, particularly as the disease progresses, there are things you can do to maintain a meaningful and productive life. It is especially important to continue with activities and interests you can still enjoy, and take comfort in the support of friends and family.
- Alzheimer's disease affects each person differently. You will have good days and bad days. Try to maximize the good days and not dwell on the bad days.
- Remember, you are not alone. Consider joining a support group. Call your local chapter of the Alzheimer's Association for information on support groups for people with early-onset Alzheimer's disease.
- Don't keep your fears and feelings inside. Seek professional counseling, and/or share your feelings with your friends, family, or a clergy member.
- Take care of yourself. Get regular checkups, and follow your doctor's recommendations about diet, exercise, and taking medications.
Family and friends
- Talk openly with your spouse about issues that are important to you, such as finances, household and child-rearing responsibilities, and sexual intimacy. Look toward future caregiving needs, and try to make plans and decisions together, ahead of time. Encourage your spouse to join a caregivers' support group.
- Talk openly with your children about the disease and your symptoms. Understand that your disease affects your children, as well. In addition to being concerned about you, your children may have understandable fears about developing Alzheimer's disease themselves. When appropriate, include your children in making decisions that affect the whole family. Encourage them to become involved in a support group. Consider recording your thoughts, feelings, wisdom, and memories, so you may pass them on to your children.
- Don't tune out your friends. Share your experience of living with Alzheimer's disease. Stay as active as possible for as long as possible. Invite your friends to attend educational programs about Alzheimer's disease.
- As your disease progresses, you may find job-related tasks more difficult to perform. Plan when and what you will tell your employer about the disease, and at what point you should no longer work.
- Make adjustments so that you may continue to work as long as possible. This will help to maintain your income and independence, and boost your self-esteem. Consider asking to be placed in a position that better matches your skills and capabilities, or to reduce your work hours.
- Investigate all possible options, including early retirement, as well as ways to access all benefits available to you through your employer.
Financial and legal matters
- Plan ahead for financial needs, knowing that eventually you will have to leave your job and will lose income. Meet with a financial counselor who can help you investigate insurance, investments, and other financial options.
- Talk with your family and doctor about what medical treatments you want to receive in the event you become unable to communicate your wishes. You may wish to prepare an advance directive, a legal document that outlines your wishes for future medical treatment.
- Organize all your financial and legal documents, as well as other important information (insurance policies, Social Security information, wills, etc.) in one place, and let your spouse and/or children know where to find them.
As a caregiver, you should begin making legal preparations soon after your loved one has been diagnosed with a serious illness. People with Alzheimer's disease and other long-term illnesses may have the capacity to manage their own legal and financial affairs right now. As these diseases advance, however, the patients will need to rely on others to act in their best interests. This transition is never easy, but advance planning allows patients and their families to make decisions together for what may come.
A caregiver of an individual who no longer has the legal capacity to execute powers of attorney or trusts may have to become that individual's guardian or conservator. A guardian has the legal authority to make decisions about the lifestyle and well-being of another person. The decisions a guardian may make include where a person may live, what care and medical treatment will be provided, and what religious and educational activities will be made available. A conservator has legal authority to manage another person's financial affairs.
If the person being cared for has the legal capacity—the level of mental functioning necessary to sign official documents—he should actively participate in legal planning. Clearly written legal documents that outline your loved one's wishes and decisions are essential. These documents can authorize another person to make healthcare and financial decisions, including plans for long-term care.
To give your loved one the best care possible, obtain legal advice and services from an attorney. If the person you're caring for is age 65 or older, consider hiring an attorney who practices elder law, a specialized area of law focusing on issues that typically affect older adults. If you cannot afford an attorney, legal forms can be accessed through resources including books and the Internet. Legal issues may be discussed with a social worker or clergy free of charge.
See our section on legal documents
As you plan for the future, the following documents may be important:
- Power of attorney: This document gives a person (known as the principal) an opportunity to authorize an agent (usually a trusted family member or friend) to make legal decisions when he or she is no longer competent. There is no standard power of attorney; thus, each one must be geared toward an individual's situation. It is important for the caregiver to be very familiar with the terms of power of attorney because it spells out what authority the caregiver does and does not have. The agent should make multiple copies of the document and give one to each organization or company with which the principal does business.
- Durable power of attorney for healthcare: This document appoints an agent to make all decisions regarding healthcare. These decisions include those regarding healthcare providers, medical treatment, and—in the later stages of the disease—end-of-life care. A durable power of attorney for healthcare allows the agent to authorize or refuse any medical treatment for the principal. This power goes into effect only once the principal is unable to make decisions for himself and is activated by the principal's attending physician.
- Living will: A living will allows a person to state, in advance, what kind of medical care he or she desires to receive and what life-support procedures he or she would like to withhold. This document is used if a person becomes terminally ill and unable to make his or her wishes known. A terminal illness is defined as one from which a person's doctor believes there is no chance of recovery. A living will also can be used if a person becomes permanently unconscious. To be considered permanently unconscious, a patient must be viewed as having no reasonable possibility of regaining consciousness or decision-making ability. Two physicians must make this determination. Laws on living wills vary from state to state.
- Living trust: This document enables a person (called a grantor or trustor) to create a trust and appoint a trustee to carefully invest and manage trust assets once the grantor is no longer able to manage finances. A person can appoint another individual or a financial institution to be the trustee.
- Will: A will is a document created by an individual that names an executor (the person who will manage the estate) and beneficiaries (those who will receive the estate at the time of the person's death).
Caring for a loved one with Alzheimer's disease poses many challenges for the caregiver—particularly as the disease progresses and your loved one's ability to communicate declines.
The changes in the brain that are associated with Alzheimer's disease can lead to unusual and unpredictable thinking and behavior. For example, your loved one may become anxious around family members, neighbors, or friends whom he or she may not recognize or in situations that stray from the normal routine. The person with Alzheimer's disease also may become suspicious and suffer from delusions. He or she may begin to withdraw from social interaction, wander, become aggressive, and/or become angry and irritable.
In some cases, behavioral problems—especially physical aggressiveness and delusions—may require treatment with medications, such as antianxiety or antipsychotic drugs. However, these drugs can have negative side effects, including drowsiness and depression, and can further affect memory.
Following are some tips to help you manage the changes in thinking and behavior that often accompany Alzheimer's disease:
- Maintain: Work to preserve your loved one's abilities, particularly those that affect dignity (such as eating and using the toilet), rather than try to teach new skills.
- Keep it simple: Follow simple routines, and avoid situations that require the person with Alzheimer's disease to make decisions. Having to make choices can be very frustrating and cause anxiety for a person with Alzheimer's disease. Try to minimize any changes in the surroundings or to your loved one's daily routine. If you have to make changes in routines, do so gradually.
- Reword statements: It may help to simplify or reword your statements or requests if the person with Alzheimer's disease doesn't seem to understand. Try to be patient and supportive, especially if your loved one is confused and/or anxious.
- Reassure: Reassure your loved one every day, even if he or she does not respond. Use a quiet voice, and be protective and affectionate. If he or she has delusions, be reassuring rather than defensive.
- Be calming: If your loved one becomes agitated or aggressive, try playing music or a video that he or she used to enjoy. Keep photos of family members and friends where the person can see them. Label photos with names, if necessary. Reminisce with him or her about the family or activities he or she once enjoyed (sports, hobbies, etc.).
- Gently remind: Help your loved one maintain his or her orientation by naming events for the day; reminding him or her of the date, day, time, place, etc.; and repeating the names of the people with whom he or she has contact.
- Communicate: Try to understand the words and gestures your loved one uses to communicate. Adapt to his or her way of communicating; don't force your loved one to try to understand your way of communicating.
- Watch medications: Be sure your loved one gets the right medications and at the right time. Watch for reactions and possible side effects of medicines, such as depression or agitation. Consult with the doctor about giving any over-the-counter medicines, because they may react with prescription medications and cause serious side effects.
- Provide a good diet: Because the effects of dementia can be worsened by poor nutrition, be sure to provide your loved one with a nutritious diet and plenty of healthful fluids, such as water or juice. Limit alcohol consumption, and try to ensure your loved one gets adequate sleep.
- Encouragement: Encourage your loved one to exercise his or her mind by reading, doing puzzles, writing, etc., as well as to exercise his or her body as appropriate. However, avoid challenging your loved one to the point of frustration.
- Identify triggers: Try to identify any actions, words, or situations that may trigger inappropriate or dangerous behavior. Document any episodes of such behavior so you can try to avoid the triggers in the future.
- Adapt the environment: To minimize confusion and anxiety, adapt your loved one's environment to his or her capabilities. Make adjustments as his or her abilities decline. Try placing large labels (with words or pictures) on drawers and shelves to identify their contents. If your loved one tends to wander, you may need to lock the doors, especially at night. Consider participating in the Alzheimer's Association's Safe-Return Program. As part of this program, the person with Alzheimer's disease wears a bracelet with a toll-free number and code. The toll-free number may be called from anywhere in North America, and the code is used to identify the person and alert his or her family of the person's whereabouts.
- Be honest: Recognize when the person's behavior is more than you can handle. Safety—your own and your loved one's—must be considered at all times.
People with Alzheimer's disease have special needs that can pose unique challenges for their caregivers. Depending on their level of independence, people with Alzheimer's disease may need help with personal care activities, including eating, bathing, shaving, and using the toilet. To assist with these activities, caregivers need knowledge, skill, and patience.
Following are some tips for caring for your loved one's personal needs:
- Establish a routine. Schedule grooming activities for the same time and same place each day; for example, brush the patient's teeth after meals, or schedule baths for the mornings or evenings. Choose the most relaxed time of the day for bathing and grooming.
- Respect the person's privacy. Close doors and blinds. Cover the person with a towel or bathrobe.
- Encourage the person to do as much as possible. This will help to promote a sense of independence and accomplishment.
- Keep in mind the person's abilities. Give him or her enough time to complete each task; for example, brushing his or her hair or teeth.
- Give the person encouragement and support for completing tasks. Acknowledge his or her efforts. "You did a nice job brushing your hair today."
- Tell the person what you are doing. "I'm going to wash your hair now."
- If the person can dress himself or herself, lay out clothes in the order they are to be put on. Clothing that is easy to put on, with few buttons, is best.
- A complete bath may not be needed every day. A sponge bath may be enough.
- Always check the temperature of the water in the bath or shower.
- If giving a bath in the tub, try using a bath chair with handrails. Also, place rubber mats in the tub to prevent slipping.
- Make sure the bathroom is warm and well-lit.
- Remove or secure throw rugs to prevent falls in the bathroom.
- If the person is heavy or can offer little help, special equipment may be needed. Your doctor can give you advice on how to safely bathe your loved one.
Hair care and shaving
- Try washing the person's hair in the sink, especially if the person prefers baths to showers.
- If your loved one is able, a trip to the salon or barbershop may be a fun and positive experience.
- Try using a dry shampoo if the person is bedbound or fearful of having his or her hair washed.
- To reduce the risk of cuts, use an electric razor for shaving, especially if the person is taking blood-thinning medicines (such as Coumadin).
- Brush the person's teeth daily. If the person wears dentures, clean them every day. Check that the dentures fit properly, and examine the gums for sores or areas of redness.
- If the person refuses to open his or her mouth, try brushing only the outside of the teeth. Ask your dentist for advice on providing good dental care.
- If the person brushes his or her own teeth, help by putting the toothpaste on the brush.
Using the toilet
- Install safety features in the bathroom, such as grab bars and raised toilet seats.
- A bedside commode or urinal may be helpful if getting to the bathroom, especially at night, is a problem.
- Schedule routine bathroom visits to prevent accidents.
- Tell the doctor about any loss of bowel or bladder control. These problems may be symptoms of conditions that can be treated with medication.
For a person with Alzheimer's disease, the illness itself or associated depression can affect the desire and ability to eat. Good nutrition is important for people with Alzheimer's disease. In fact, poor nutrition can worsen some symptoms of dementia, such as listlessness and confusion.
If poor appetite is becoming a concern for your loved one, try following these nutrition guidelines.
- Talk to the doctor. Sometimes poor appetite is due to depression, which can be treated. Your loved one also may be suffering from a treatable disorder—such as heartburn, constipation, diarrhea, nausea, or sore mouth—that may be affecting his or her eating.
- Don't force feed. Try to encourage the person to eat, and try to find out why he or she doesn't want to eat (not hungry, the food is cold or doesn't taste good, etc.).
- Remember to treat the person as an adult, not a child. Don't punish the person for not eating.
- Serve small, frequent meals and snacks.
- Walking or participating in other light activities can help stimulate the appetite.
- Consider finger foods that are easy to handle and eat.
- Adaptive equipment, such as plate guards or silverware with specially designed handles, is available for individuals who have difficulty holding or using utensils.
- Serve beverages after a meal instead of before or during a meal so that the person does not feel full before starting to eat.
- Plan meals to include favorite foods.
- Use your imagination to increase the variety of food you're serving. Prepare meals that offer different textures, colors, and temperatures.
- Don't waste your energy preparing foods that provide little or no nutritional value (such as potato chips, candy bars, sodas, and other snack foods).
- Choose high-protein and high-calorie snacks.
- Make food preparation an easy task: Choose foods that are easy to prepare and eat.
- Make eating a pleasurable experience, not a chore: Liven up meals by using colorful place settings; play background music during meals.
- Use colorful garnishes such as parsley and red or yellow peppers to make food look more appealing and appetizing.
For people with Alzheimer's disease, physical activity should be continued for as long as possible.
Exercise offers many benefits for people with Alzheimer's disease, including improved strength, endurance, and cardiovascular fitness. Exercise helps people with Alzheimer's disease preserve motor skills and improve balance, which in turn can help prevent serious injury from falls. Exercise also can increase energy, promote a normal day and night routine, and help to improve mood. Further, exercise increases circulation and can help improve mental clarity. Repetitive exercises—including walking, indoor bicycling, and activities such as folding laundry—may decrease anxiety in people with Alzheimer's disease because they don't have to make decisions about the activity or remember what to do next.
The type and intensity of exercise appropriate for someone with Alzheimer's disease depends on the person's degree of impairment. People in the early stages of the disease may enjoy exercises such as walking, bowling, dancing, golf, and swimming, although supervision may be necessary. Greater supervision may be required as the disease progresses, and activities that could lead to injury should be avoided. Most of all, select a hobby or activity you enjoy, and stick with it. Some suggestions include golfing, walking, swimming, water aerobics, yoga, and tai chi.
It is important to talk to your doctor before beginning any exercise program. There may be other factors—such as osteoporosis, a heart condition, or a balance problem (possibly due to medication)—that could limit or restrict activity.
Your doctor may make recommendations about:
- The types of exercise best suited to you and those to avoid
- The intensity of the workout (how hard you should be working)
- The duration of your workout and any physical limitations
- Referrals to other professionals, such as a physical therapist who can help you create your own personal exercise program
Sundown syndrome—also called sundowning or sunsetting—is a behavior common in people with Alzheimer's disease. It describes the episodes of confusion, anxiety, agitation, or disorientation that often occur at dusk and into the evening hours. The episodes may last a few hours or throughout the night.
While the exact cause of sundown syndrome is not known, experts believe there are several contributing factors. These include physical and mental exhaustion (after a long day) and a shift in the internal body clock caused by the change from daylight to dark. Some people with Alzheimer's disease have trouble sleeping at night, which may contribute to their disorientation. Medication that can cause agitation or confusion also may be a contributing factor to this syndrome.
Sundown syndrome can be draining for the person with Alzheimer's disease and his or her caregivers. Here are some suggestions for helping a loved one with sundown syndrome:
- Schedule your day so that the more difficult tasks are done early in the day, when the person is less likely to become agitated.
- Watch the person's diet and eating habits. Restrict sweets and drinks with caffeine to the morning hours. Try serving the person a late afternoon snack or an early dinner. To help the person relax, try decaffeinated herbal tea or warm milk.
- Keep the house or room well lit. Close the drapes before the sun goes down, so the person doesn't watch it become dark outside.
- If the person falls asleep on the sofa or in a chair, let him or her stay there. Don't wake the person to go to bed.
- Try distracting the person with activities he or she enjoys. Soothing music or a favorite video may help, as well.
- Encourage the person to engage in some physical activity—such as walking, if able—during the day. This may help him or her to sleep better at night.
Because activities of daily living—including eating, bathing, grooming, dressing, and using the toilet—can become more difficult for people with Alzheimer's disease, it's important to modify the environment to make it as easy as possible for the person with the disease to live and function.
A careful evaluation of the home, especially the physical layout and the services that will be available to the person for support, is essential. Some patients can continue to be independent in their living situation if they have complete support services. Things that should be evaluated include safe operation of the stove or oven, and bathroom/bathtub or shower use. Therapists and social service workers who are professionally trained to look for potential hazards can perform a full home safety evaluation.
Bathroom: The bathroom can be a dangerous place for a person with Alzheimer's disease. As the person's ability to function decreases, it may become necessary to install grab bars in the shower or fold-down shower seats. Also, be sure to use nonslip floor mats and slip-resistant appliqués or tiles in the shower or tub.
Furniture: Simplify furniture arrangements. Make it as easy as possible for the person with Alzheimer's disease to navigate a room and get from point A to point B. Move or remove objects, such as a loose throw rug, that could be a tripping hazard.
Lighting: Be sure there is sufficient lighting. As people get older, they require two to three times the amount of light they needed when they were younger. Add the confusion associated with Alzheimer's disease, and you can understand how important it is to have enough light. However, too much light, especially when it causes glare, can be distracting and irritating.
See our section on general safety tips.
Have emergency numbers (police, fire, poison control, and a neighbor's phone number) readily available in case of emergency. Suggestion: Write these numbers on a sticker, and put it on the receiver.
Have at least one phone located where it is always accessible. The person with Alzheimer's could keep a cordless phone in his or her pocket—this is especially important if he or she falls and can't get up to use the phone.
Make sure smoke detectors work properly, and remember to change the batteries frequently. Use a carbon monoxide detector.
Avoid the use of space heaters and electric blankets; these are fire hazards. If they must be used, follow the manufacturer's safety instructions, and keep them on a sturdy surface away from rugs, curtains, furniture, or papers.
Consider installing a medical alert or personal alarm system for emergencies. Professional systems link directly to a representative 24 hours a day, seven days a week. A person who has an immediate medical problem simply pushes a button on a special device worn around the wrist or neck, and a signal for help is immediately sent.
A means of transportation is an essential ingredient in maintaining independence. It is especially important as people grow older. Transportation allows them to run errands, go to doctor's appointments, and socialize with family and friends. However, there will come a time when your loved one's driving skills will decline because of age, disability, or both. Once this occurs, it is important to assess whether or not it is still safe for your loved one to drive. Some warning signs of a possible decline in driving skills include:
- A series of close calls, collisions, or driving violations, even if they are minor
- Braking harder than normal for stoplights and stop signs, running over curbs, or running through stop signs
- Difficulty seeing things on the road
- Difficulty maintaining the car in the center of the lane
- Trouble turning his or her head before changing lanes
- Trouble adjusting to the oncoming glare of headlights
- Increased frustration, anger, or anxiety when driving
- Becoming confused in simple driving situations or lost in familiar areas
- Failure to use turn signals or mirrors
- Hitting the brakes instead of the accelerator or vice versa
- Increased confrontation with other drivers
If you notice some of the above declines in driving skills in your loved one, this does not mean the car must be taken from him or her immediately. The first step a caregiver must take with the patient is to talk about the signs of possible decline that are of concern. During this talk, the caregiver can make suggestions such as encouraging his or her loved one to avoid driving at night, during rush hour, or when weather makes the roads slick. Another approach can be recommending a medical and/or eye exam to see if any of the above signs can be corrected.
Research suggests that even mild Alzheimer's disease is associated with an increased risk of accidents. It is important to check with your state's Department of Motor Vehicles to find out the procedure for evaluating the patient's driving ability. Many areas will perform a thorough "driver safety evaluation" to determine whether it is safe for the person to continue driving. If there is any impairment noted in visual or spatial abilities or judgment, the person with Alzheimer's disease should not be driving.
If the caregiver determines that a loved one should no longer be driving, alternate means of transportation should be sought. Often this means that the caregiver must provide transportation. However, it is not always possible or practical to provide transportation when needed.
See our section on driving resources
To find information on transportation for the elderly that is available in your area, one of the best places to start is your local area agency on aging. There are over 650 area agencies on aging throughout the United States. These offices are part of the Administration on Aging (www.aoa.gov), an agency of the U.S. Department of Health and Human Resources.
These agencies have information available to older persons and their caregivers about transportation services, as well as other services available in the community. They also monitor and support specialized services for elderly in the community and ensure that services are delivered to those elderly in need.
Other references for available transportation include:
- The Yellow Pages: Many telephone books have a section in the front that lists the names of various service organizations. Listings under transportation or community service may also include the names of those organizations that provide services to the elderly or disabled.
- The National Transit Hotline: The hotline furnishes the names of local transportation providers that receive federal funds to offer service to the elderly and people with disabilities. The toll-free number is (800) 527-8279.
- Under certain instances, Medicaid will cover transportation. Coverage varies from state to state. For specific coverage guidelines, contact your state's Department of Human Services. Generally, Medicaid benefits include ambulance services when other means of transportation are detrimental to the patient's health; transportation to and from the hospital at time of admission or discharge when required by the patient's condition; and transportation to and from an outpatient clinic, doctor's office, or other facility when the physician certifies the need for this service.
The most important thing to do when traveling with someone with Alzheimer's disease is to plan ahead and try to anticipate the person's needs so you'll be ready for any changes or problems. As you plan, be sure to consider the stage of the person's illness and any behaviors that may be affected by traveling away from home. You may want to try taking a short trip to see how he or she reacts to traveling. Here are a few other tips to consider:
- Plan some activities for the person with Alzheimer's disease. Simple things—such as a magazine, a deck of cards, a favorite music tape, etc.—can help keep the person calm when traveling.
- Never leave a person with dementia alone in a car. When moving, be sure to keep the seat belt buckled and the doors locked.
- Plan regular rest stops.
- Bring an extra driver if your trip involves more than six hours of driving time.
- If the person becomes agitated while traveling in a car, stop at the first available place. Don't try to calm the person while driving.
- Consider planning your vacation at a place that is familiar to the person with Alzheimer's disease; for example, at a lake cabin that he or she has visited in the past.
- If your loved one is easily agitated, it may be wise to avoid places that are very crowded. You also may want to avoid fast-paced sightseeing trips.
- If your loved one has never been on a plane, it may be wise to consider driving, if possible.
- Alert the airlines and hotel staff that you are traveling with a person who is memory impaired. Make sure the person is carrying or wearing some sort of identification.
- Don't forget that your caregiving responsibilities continue, even though you are on vacation. It may help to bring someone along who can help you with these duties.
While many patients retain their independence for a while after being diagnosed with Alzheimer's disease, some need more help with daily activities. For others, the diagnosis may come after weeks or months of coping with symptoms that did not have a name. At some point, though, a caregiver is needed. A caregiver's role is multifaceted:
- You help maintain the quality of life for your spouse, parent, family member, or friend with Alzheimer's disease.
- You become educated about symptoms, treatments, and the progression of the disease.
- You may keep track of appointments with the doctor, medication schedules, and exercise.
- You offer the love and support necessary to meet the challenges of Alzheimer's disease.
The most effective caregiver is well informed, prepared, and willing to ask for help and support from all resources that are available.
There are some unique challenges that a patient with Alzheimer's disease confronts. First, the disease is quite variable. There may be times when the patient can function almost normally and then other times when the patient may be very dependent. This is a natural part of the disease. Also, the patient's response to medications may fluctuate. There is a natural tendency for a caregiver to suspect that the patient might be unnecessarily demanding or manipulative. The caregiver may see the patient functioning normally but then assume that the patient should always be able to function normally.
Depression is very much a part of the disease. Alzheimer's symptoms and disability can be made worse by depression, so it is important to recognize the signs and symptoms of depression and help your loved one seek treatment promptly.
Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude—from positive and caring to negative and unconcerned. Burnout can occur when caregivers don't get the help they need or if they try to do more than they are able—either physically or financially. Caregivers who are burned out may experience fatigue, stress, anxiety, and depression. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones.
The symptoms of caregiver burnout are similar to the symptoms of stress and depression. They include:
- Withdrawal from friends, family, and other loved ones
- Loss of interest in activities previously enjoyed
- Feeling blue, irritable, hopeless, and helpless
- Changes in appetite, weight, or both
- Changes in sleep patterns
- Getting sick more often
- Feelings of wanting to hurt oneself or the patient being cared for
- Emotional and physical exhaustion
Those who are already suffering from stress and depression should seek medical attention. Stress and depression are treatable disorders.
Caregivers often are so busy caring for others that they tend to neglect their own emotional, physical, and spiritual health. The demands on a caregiver's body, mind, and emotions can easily seem overwhelming, leading to fatigue and hopelessness—and, ultimately, burnout. Other factors that can lead to caregiver burnout include:
- Role confusion: Many people are confused when thrust into the role of caregiver. It can be difficult for a person to separate her role as caregiver from her role as spouse, lover, child, friend, etc.
- Unrealistic expectations: Many caregivers expect their involvement to have a positive effect on the health and happiness of the patient. This may be unrealistic for patients suffering from a progressive disease like Alzheimer's.
- Lack of control: Many caregivers become frustrated by a lack of money, resources, and skills to effectively plan, manage, and organize their loved one's care.
- Unreasonable demands: Some caregivers place unreasonable burdens upon themselves, in part because they see providing care as their exclusive responsibility. Some family members such as siblings, adult children, or the patient himself/herself may place unreasonable demands on the caregiver. These individuals also may disregard their own responsibilities and place burdens on the person identified as primary caregiver.
- Other factors: Many caregivers cannot recognize when they are suffering from burnout and eventually get to the point where they cannot function effectively. They may even become sick themselves.
The role you have taken on is not an easy one. However, the following tips offer some guidance on how to maintain and improve your caregiving relationship:
- Don't forget about yourself because you're too busy caring for someone else. Make sure you have time to relax. If necessary, enlist the help of other family members or even hire someone to help out. Remember, taking care of yourself is not a luxury. It is an absolute necessity for caregivers. Stay healthy by eating right and getting plenty of exercise and sleep. Do not put your life on hold. Continue to meet with friends, participate in hobbies or groups, and maintain a schedule as normally as possible. You will not only feel more energized, but in the long run you will also be less likely to feel resentful.
- Know your limits, and be honest with yourself about your personal situation. Accept your feelings. Having negative feelings—such as frustration or anger—about your responsibilities or the person for whom you are caring is normal. It does not mean you are a bad person or a bad caregiver.
- Learn as much as you can about Alzheimer's disease so you will know how you can help. You'll also understand what changes to expect in your loved one's behavior or symptoms.
- Set realistic goals for yourself and your loved one. Do not attempt to do everything. By setting attainable goals, you are setting everyone up for success rather than disappointment. Acknowledge that there may come a time when the patient requires nursing services or assisted living outside the family home.
- Help your loved one participate in as many activities in the home and outside the home as possible. Maintain the balance between helping your loved one accomplish a task and actually doing the task yourself. Allow the patient the time needed to complete daily activities, such as dressing, on his or her own.
- Consult your loved one about his or her family affairs. Although it's not easy to discuss these topics, you should be informed of the patient's wishes regarding a living will, durable power of attorney, and do-not-resuscitate (DNR) orders (see our section on legal documents).
- Have someone you can talk to. You are there for your loved one, to listen and to offer support, but you also need a support person. Find someone you trust—such as a friend, coworker, or neighbor—to talk to about your feelings and frustrations. Also, most therapists, social workers, and clergy members are trained to counsel individuals dealing with a wide range of physical and emotional issues.
- Develop new tools for coping. Remember to lighten up and accentuate the positive. Use humor to help deal with everyday stresses.
- Accept that you may need help with caregiving, and turn to others for help with some tasks. Respite care provides a temporary break for caregivers. This can range from a few hours of in-home care to a short stay in a nursing home or assisted-living facility.
See our section on resources for caregivers
If you want to prevent burnout, consider turning to the following resources for help with your caregiving:
- Home health services: These agencies provide home health aides and nurses for short-term care if your loved one is acutely ill. Some agencies provide short-term respite care.
- Adult day care: These programs offer a place for seniors to socialize, engage in a variety of activities, and receive needed medical care and other services.
- Nursing homes or assisted-living facilities: These institutions sometimes offer short-term respite stays to provide caregivers a break from their responsibilities.
- Private care aides: These are professionals who specialize in assessing current needs and coordinating care and services.
- Caregiver support services: These include support groups and other programs that can help caregivers recharge their batteries, meet others coping with similar issues, find more information, and locate additional resources.
- Agency on aging: Contact your local agency on aging or your local chapter of the AARP for services (such as adult day-care services, caregiver support groups, and respite care) that are available in your area.
- National organizations: Look in a phone directory or search online for local agencies or chapters of national organizations (such as the Alzheimer's Association) that are dedicated to assisting people with Alzheimer's disease. Such organizations can provide resources and information about subjects including respite care and support groups.
Last reviewed on 10/21/2008
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