Toileting also may cause problems, and for some caregivers incontinence is a signal that the patient should be institutionalized because care needs have become too complicated. This is an issue to discuss with caregivers before incontinence becomes a major problem. Explain that AD patients often lose bladder or bowel control as a result of stress, medications, and other factors. They can prevent problems by placing picture signs in the house that direct the patient to the toilet. Suggest that wastebaskets and laundry hampers be kept out of the bathroom so that the patient will not mistake these for the toilet, and advise them to make the toilet stand out by placing a bright cover on the seat.

Ask caregivers to monitor the patient's incontinence and identify the times when accidents occur. This will provide clues about activities that may result in incontinence, such as too many fluids after dinner. Also, suggest that patients wear clothing they can easily pull down to use the toilet and that caregivers offer frequent reminders to patients using familiar words.

Dressing also poses problems for some patients. The caregiver may want to clear the patient's closet of unnecessary clothing, keeping dress selections simple. Some AD patients prefer to dress in the same outfit each day because the clothes are familiar to them and eliminate the need to make a decision. Caregivers can purchase two or more of the same outfit so that one can be laundered while the patient is wearing the other.

Caregivers need to lay out clothing each day, giving the patient one piece at a time and waiting for the patient to put it on. Clothing with simple clasps, such as hook and loop tape instead of buttons or snaps, is recommended.

Oral hygiene needs to be monitored daily. Caregivers should encourage patients to brush their teeth after each meal. For patients who have forgotten how to brush, caregivers can demonstrate brushing and give simple directions, such as, "Put paste on your brush." When dementia becomes advanced, patients may no longer be able to brush their teeth at all. The family dentist may be able to suggest devices or rinses that will be helpful.

Wandering

Wandering is one of the most difficult and common behaviors caregivers will experience with a patient with AD. Caregivers can learn strategies to cut down daytime and nighttime wandering. In addition, they can register the patient with the Alzheimer's Association's Safe Return program, which will help to ensure that the patient will be returned home if found by a stranger.

Ask the caregiver to describe when the patient typically wanders and what activities the caregiver was engaged in before the wandering behavior occurred. Once these antecedents are identified, you may be able to help the caregiver eliminate factors that promote wandering.

For example, one of the common triggers of wandering is what is sometimes called the sundown syndrome. This is triggered by changes in lighting, so that the demented person may be unsure if it is day or evening. Dusk can be a very disorienting time, and it may be helpful to keep the patient occupied with a quiet activity, such as folding laundry, that can be done sitting at a table. Patients who wander in the evening may do so because of relative inactivity during the day, for example, by not helping with household chores or engaging in normal daily activities. So when the day is over, the caregiver might be exhausted, but the patient has stored up energy that waits to be released. The patient might even have taken naps during the day, become bored with television, and be awake and restless at 11 PM. The caregiver can cut down this type of wandering by arranging activities for the patient during the day. The patient can go to a day care center where activities are provided, or friends and family can be asked to help by taking the patient to lunch or joining the patient in doing a hobby, looking at old photo albums, or taking a walk.

Disrupted sleep patterns may lead to nighttime wandering. Patients with AD usually are older, and people typically sleep less as they age. In addition, patients with AD might nap once or twice during the day, so their sleep requirement at night could be as few as 4 or 5 hours. When they are not tired, they will get out of bed and wander around the house. Caregivers often believe that sleep medication will solve this problem. You may need to explain that while a drug may help the patient fall asleep, it will not ensure that he or she stays asleep for the entire night. A better solution would be to prevent excessive napping and to fill the patient's day with activities. Also, suggest that caregivers eliminate caffeine in the patient's diet by substituting decaffeinated beverages and giving the patient no liquids after 8 PM.

Agitation and other problem behaviors

Caregivers may find that the most difficult aspect of caring for a family member with AD is dealing with the patient's anger and personality changes. These changes may trigger word or question repetition, aggressive verbal or physical behavior, suspicious thoughts, increased anxiety and agitation, and difficulty recognizing people, places, and things.

Caregivers often take it personally when the patient lashes out at them, and you may need to explain that the behavior stems from the disease and does not reflect how the patient feels about the family member. Follow up with tips on how to handle the patient's agitated behavior.

One useful strategy to teach caregivers is redirection—distracting patients when they are engaged in a troublesome behavior. This is the same technique parents of small children are adept at. For instance, a patient becomes upset when he cannot get the television remote control to operate properly; the caregiver might respond by asking if the patient is hungry and redirecting him to the dining room.

Emphasize for caregivers just how common behavioral problems are among persons with AD. Patients often become suspicious, secretive, agitated, irritable, disoriented, and reluctant to change a routine or experience anything new. Changes in behavior should not simply be dismissed, however, as signs of AD. A patient who suddenly displays increased restlessness or irritability could have a medical problem, such as dehydration, malnutrition, infection, or blood glucose abnormalities. The behavior change should be brought to the physician's attention. The same is true for changes in appetite and sleep. Show caregivers how problem behaviors can result from many different causes. Then explain that it is important to investigate the cause of the behavior problem and its potential impact before making a decision about how to respond. Some potential causes of behavior change are illness, medication, loud noises, new places, difficulty with activities, inability to communicate, inability to recognize the home as a familiar environment, and a busy environment (see "Coping with the AD patient's problem behavior").

Good communication techniques

Coping with the AD patient's problem behavior

Misunderstandings resulting from the patient's dementia can frustrate patient and caregiver alike. Emphasize to caregivers that when talking with the patient, they should keep it simple, using neutral tones, short phrases, and an auditory level that the patient can clearly understand but that will not make the caregiver appear to be angry or shouting. Demented patients might not understand all the words, but they will understand an angry tone of voice and they will respond defensively with their own anger.

Caregivers should avoid casual, "over-the-shoulder" communication, such as offhand questions or requests. Patients may not be able to process information given in this manner and should instead be spoken to face-to-face. Patients also are easily distractible, so caregivers should not attempt conversation in a room where the television or stereo is blaring. Explain to caregivers that they will need to get the patient's attention and repeat the point they are trying to make until they are certain the patient understands.

Similarly, caregivers should not ask AD patients multiple choice or fill-in-the-blank questions. It is difficult for AD patients to weigh options and process information at the same time. To find out what the patient would like for dinner, the caregiver can ask a Yes or No question: "Do you want fish for dinner?" If the answer is No, the caregiver can then ask, "Do you want chicken for dinner?" When patients ask questions, caregivers should respond calmly and clearly. If necessary, the caregiver can repeat answers and rephrase them until the patient appears to understand what is being said.

TENDING TO THE CAREGIVER'S HEALTH

Caregivers for patients with AD are prone to depression, heightened stress, physical illnesses, and frustration.² They often feel unappreciated because patients cannot understand what they are going through—and this feeling is added to the usual stresses of caregiving. Likewise, caregivers may become emotionally burdened and socially isolated as friends and other family members drift away as the patient's illness progresses. Patients may live for years at home, and caregivers often experience despair, thinking that their current situation may go on forever. These problems increase the likelihood of severe depression and suicidal ideation.

The primary care physician may be the most important health care professional in the caregiver's life, especially when you are physician to the caregiver as well as the person with AD. Caregivers often will not seek physical or psychological help for themselves, so it is up to the physician to recognize when problems may be developing. Each time the caregiver brings in the AD patient for an office visit, take the time also to assess how the caregiver is doing.

Since you cannot know what the caregiver is experiencing on a day-to-day basis, watch for subtle signs of depression and burnout (see Table 3). Maintain eye contact with the caregiver, and casually ask how the caregiver is doing. This and follow-up questions will provide important clues about the caregiver's emotional health. Some questions to consider include

• How are you doing?
• What are your plans for next week, the next holiday?
• Has the patient done anything unusual lately?
• Do family members come to visit you much?
• Are you taking any vitamins or medications?
• When was the last time you went out to dinner or lunch with a friend?
• When was the last time you gardened, read a book, worked on your hobby?
• Is the patient's yelling or wandering getting worse?
• What time did you go to bed last night and what time did you first wake up?
• How is your work going?
• How is your family, spouse?
• Are you experiencing any pains, headaches, or digestive problems?
• Is there anything new that you're worried about?

TABLE 3. Signs of depression or burnout in caregivers

Also observe the caregiver's nonverbal presentation, such as excessive head shaking or crying during the AD patient's physical exam. Does the caregiver appear to have lost or gained a lot of weight or seem to be excessively tired? Often the act of listening to the caregiver will provide much-needed emotional support.

Another strategy is to ask caregivers for a recent history of the patient's behaviors and problems. This may offer clues to the caregiver's emotional health. For example, if a caregiver begins to describe how the patient awakens at 3 AM each night and wanders around banging doors, it becomes clear that the caregiver is not getting a full night's sleep.

If a caregiver appears to be experiencing depression or unmanageable stress, consider a prescription for an antidepressant, if appropriate, or referral to a social worker or psychiatrist. Emphasize that the caregiver will not be able to help the patient if the caregiver becomes sick and that everyone needs someone to talk to now and then. Caregivers may object because of financial constraints, in which case the Alzheimer's Association may be able to recommend a local support group: The caregiver can call their 24-hour help line (800) 272-3900 or go to http://www.alz.org on the Web. You may also want to reassure caregivers that they can always call you for assistance in the event of an emergency.

Teaching coping strategies

Explain to caregivers soon after the patient's diagnosis what cognitive and physical decline, illness, and problem behaviors they should expect. Assist the caregiver and patient, when possible, in making decisions and plans before dementia becomes severe. For instance, it is crucial to discuss advance directives while the patient still is able to make decisions. This will lessen the caregiver's burden months or years down the road.

Talk with caregivers about the possibility that they may not always be able to care for the patient at home, at least not without help. Suggest that the caregiver explore early on options such as paid help, assisted living facilities, board and care homes, and nursing homes. The Alzheimer's Association, a social worker, or an Eldercare Locator—available at (800) 677-1116 or http://www.eldercare.gov—can be helpful in suggesting possibilities. Planning for the future and for the patient's mental decline, as well as setting goals and seeking assistance, will help caregivers cope with the inevitable difficulties in dealing with an AD patient.

Give caregivers a list of local resources for adult day care, respite care, homemaker services, and support groups. Encourage them to investigate some of these services since there will be times when they need assistance. For example, if a caregiver plans to provide 24-hour, 7-day care to a spouse with AD, explain that some of these services might enable the caregiver to attend church on Sunday mornings or buy groceries on Wednesday afternoons. Urge the caregiver to go out with friends at least once a month and to seek help from family and friends. When a caregiver and a patient have not shown up for an office visit in more than a year, call their home to see how they are doing. Anticipate the caregiver's needs, and make suggestions accordingly.

Soon after diagnosis, most caregivers will need some assistance with making safety and environmental changes in the home, and this can be a good opportunity for a social worker or geriatric counselor to visit the family and make recommendations. The social worker can provide the caregiver with emotional support and coping tips, including strategies for making sure the patient takes medications, eats appropriately, and remains safe in the home and backyard.

This article was written by Melinda Young and updated by Dr Geldmacher.

Drs Geldmacher and O'Toole disclose no financial relationships in this area of medicine.

REFERENCES

1. Levine C, ed. Always On Call: When Illness Turns Families into Caregivers. Nashville, Tenn: Vanderbilt University Press; 2004.

2. Ziff SM, Schaffner AR: Occupational therapy student research of the needs and characteristics of dementia caregivers. In: Perkinson MA, Braun KL, eds. Teaching Students Geriatric Research. New York, NY: The Haworth Press, Inc; 2000:29-40.

Crisis points in caregiving

If caregiver stress and burnout become concerns, have a social worker make repeated visits to the home. These professionals can offer guidance about how to handle any new problems that have come up and be the physician’s eyes and ears, watching for signs of substance abuse or emotional or physical neglect or abuse of the patient. Abuse sometimes occurs when a caregiver has reached a crisis point in the care of a demented patient.

If abuse or neglect is suspected, this must be reported to state officials. The state will investigate and intervene, either by providing additional caregiver education or by placing the patient in a long-term care facility. Physicians who do not suspect abuse but who are concerned that a caregiver’s increasing emotional distress may lead to abuse might suggest to the caregiver that it is time to place the patient in a nursing home or other alternative site.

Pay close attention to other signs that the caregiver has reached a breaking point. One sign is that the patient has become physically violent, striking out at the caregiver. The caregiver might be reluctant to report this, but if the caregiver has visible bruises, ask if the patient has become violent.

Another common breaking point for caregivers is when the patient becomes incontinent. Fecal incontinence is es-pecially difficult to deal with. For some families, it might be enough to give the caregiver information on how to set up a toileting schedule and how to watch for signs of skin breakdown, with follow-up by a home health nurse. But do not assume that all families will be able to cope with incontinence, even with additional help and education. Some will be incapable of providing adequate care in this circumstance, making placement in a nursing home or other alternative care facility in the patient’s best interest.

Primary care physicians are well placed to watch for crises among AD patients and their families and to refer them to support and other medical services whenever necessary. Probably the most important referral you can make is to the Alzheimer’s Association http://www.alz.org