Caring for Patients with Alzheimer’s Disease & Related Dementias
Alzheimer’s disease, a disorder affecting the brain, is the leading cause of dementia. Characterized by memory loss, impaired judgement, loss of language skills, and changed personality, the disease affects not only the patient but also his or her family. The responsibility for caring for the patient often falls on a close family member. This responsibility can take an enormous emotional and physical toll, especially when added to the psychological distress of watching a loved one deteriorate. Because of the burdens of caregiving, the caregiver of the patient is often referred to as the hidden, or second, patient of the disease.
This brochure was designed to help you and your family cope with the devastating illness, diminish the burden of caregiving, and work with your family member’s doctor to provide the very best care.
As the disease progresses, an Alzheimer’s disease patient will become increasingly dependent upon his or her caregivers. You and your family must also cope with personality changes that can be disturbing. Behavioral and mood disorders, common in individuals with Alzheimer’s disease, are the most disturbing aspect of the disease for many caregivers. These disorders include depression, agitation, wandering, and sleep disturbances.
Your family member’s physician can help provide much-needed support to you and your family by discussing current needs and how or if they are being met, explaining the diagnosis, and providing information about the disease and available resources. Physicians can also help ensure that problem behaviors are being managed as well as possible and refer you to specialists for psychosocial support if necessary.
Alzheimer’s disease can create a significant disruption in a family. Family members’ roles and responsibilities change, and each of you may handle these major adjustments differently. Not surprisingly, conflicts may arise. Some members of your family will be eager to understand the patient’s disease, and some may deny the problem. The patient’s physician will likely be your primary source of information. However, not everyone is comfortable asking a physician questions, even when they want more information.
Keep in mind the following suggestions when talking about the disease with the patient’s doctor and other medical professionals. Ask the physician to:
- Use simple everyday language and avoid medical jargon.
- Present the information in small parts.
- Use examples and analogies.
- Provide take-home reading or audio-visual material.
- List other possible sources of information. You and your family may want to consult such sources as local chapters of the Alzheimer’s Association, the Alzheimer’s Association website (www.alz.org), the American Association for Geriatric Psychiatry website (www.AAGPonline.org) and other web-based resources.
The patient, you, and other family members should:
- Repeat what the doctor says to ensure that you understand the information.
- Take notes if that helps you retain the information.
- Ask questions when you do not understand what was said.
- Contact the doctor later with follow-up questions. Don’t expect to absorb all the information at once.
As a caregiver of an Alzheimer’s disease patient you may experience a range of natural emotions in response to the disease. These feelings, which may include frustration, anger, fear, and sadness, as well as concerns about your own memory lapses, can be managed by talking with a physician and/or a professional counselor if necessary.
Beyond natural reactions to the disease, you and your family may experience high levels of stress. In fact, up to 50 percent of primary caregivers experience significant psychological distress, including depression. Caregiver stress can present serious health and psychological problems. You and your family should be aware of, and watch for, symptoms such as:
- Social withdrawal
- Lack of concentration
- Health problems
Adapted from Caregiver Stress—Signs to Watch for, Steps to Take, a brochure from the Alzheimer’s Association.
Those experiencing these conditions do not provide the best care to their patients. If you are experiencing any of these symptoms, you should seek treatment for both your and the patient’s benefit. Various treatments and techniques can improve the quality of life and well-being for you, the patient, and the rest of your family.
For many caregivers, the stress of caregiving eventually causes stress in other areas of life. Numerous studies have linked caregiving of patients suffering from dementia (a loss of intellectual abilities including impaired memory and judgment) to poor physical and mental health and higher use of psychiatric medications. Emotional support from family and friends, self-confidence, and resources to help with household chores all were found to positively influence caregivers and protect against stress.
Those family members who are not involved in primary caregiving also experience psychological effects as a result of a loved one’s Alzheimer’s disease. Some family members may feel neglected because their needs have become secondary to those of the patient. Children may become confused, afraid, jealous of, or even embarrassed by a family member (usually a grandparent) with Alzheimer’s disease. Family counseling can help you and your family work through these emotions and deal with family role changes.
As a normal response, families confronted with Alzheimer’s disease may progress through fives stages of adjustment: denial, over-involvement, anger, guilt, and acceptance. These responses may occur independently of one another and not necessarily in the following order.
|Response||Description||Help for the Caregiver|
|Denial||The initial response that nothing is wrong. Denial can also reappear as false hopes that treatment will cure the patient.||Information about the disease can help families understand what is happening, and what to expect.|
|Over-involvement||Attempts to compensate for the illness and its impairments. By being over-involved in the patient’s care, the caregiver may refuse help and feel isolated. Sometimes the primary caregiver will try to meet every need of the patient.||Families should be aware of all of the available options for support, including in-home support services. Caregivers must understand that no one person can meet all the patient’s needs. The consequences of over-involvement can be detrimental to the patient.|
|Anger||Anger can occur when the family realizes that attempts at compensation have failed, and physical and emotional burdens begin to take their toll. Long-standing and interpersonal problems and unresolved issues can be troubling at this stage if the root of the anger is not addressed.||Support groups can help families work through feelings of anger and gain empathy from other families. If anger becomes severe, family members may need to be encouraged to enter counseling so that hostility does not stand in the way of patient care or sever important family ties.|
|Guilt||Developed from anger and “what ifs” brought on by looking back. Unresolved feelings of anger or guilt can lead to depression. Guilt is often experienced when the patient can no longer be cared for at home.||These feelings are normal responses to extreme stress. It is what caregivers and family members do with their feelings that really matters.|
|Acceptance||Resolution or acceptance of the problems. Acceptance comes from a full understanding of the disease and its effect on the family.||Support, education, and other resources can help families move toward acceptance.|
Maintaining your own health and stamina is an important part of caring for a patient with Alzheimer’s disease. Different psychosocial and behavioral interventions—treatments, activities, and techniques—can help you and the patient by relieving some of your burden and enhance patient care. By failing to treat an Alzheimer’s disease patient’s excess disabilities, caregivers may burn out and choose institutional care for the family member earlier than necessary. In reality, the Alzheimer’s disease patient is part of a larger family system, and a successful management regimen in which the individual’s behavioral and mood disorders are controlled can have a profound effect on the well-being of all family members.
The behavioral and emotional conditions commonly associated with Alzheimer’s disease caregiving tend to respond well to a combination of traditional psychotherapies (counseling) and supporting interventions. Over time, attention to your own mental and physical health can improve your and your loved one’s quality of life.
The following psychosocial interventions can help you and your family better cope with and help someone with Alzheimer’s disease.
Support groups allow family members and caregivers a safe place to share feelings, gain emotional and moral support, learn practical information, and talk with people who can relate to your frustrations. Support groups are widely available for the families and caregivers of Alzheimer’s disease patients through local chapters of the Alzheimer’s Association, hospitals, senior service organizations, and religious groups.
Studies have shown that the combination of support-group participation, individual and family counseling, and as-needed consultation for primary caregivers are helpful. In one study, nursing home placement was delayed by nearly one year as the result of psychosocial interventions, and caregivers reported fewer illnesses and depression and a greater sense of family support.6
Respite care can provide you with a scheduled period of relief from the demanding responsibilities of caring for a person with dementia. For periods ranging from a few hours or a few weeks, another person can tend to the needs of the patient, leaving you free to handle other responsibilities or to simply recuperate and experience some rest and relaxation. Using respite services allows some patients to continue receiving care at home for a longer period before being placed in a nursing home, according to some studies. Companions, home health aids, visiting nurses, adult day care services, and nursing homes provide respite services. Respite can also be provided through the use of videotapes that use professional actors to simulate interaction with the patient or video scrapbooks that show material of interest to the patient.14
Caring for an Alzheimer’s disease patient at home requires special skills that may be new to you. Training programs in the community, such as those provided through the Alzheimer’s Association, help caregivers manage Alzheimer’s disease patients at home. The manner in which you communicate with the individual with Alzheimer’s disease will change as the disease progresses, and developing communication skills to minimize unwanted behavior is essential. Education about the disease can help you and your family develop these skills and minimize frustration as you learn what to expect.
Family interventions for patients in long-term care
If it becomes necessary to place your family member in a nursing home, counseling may help you and your family deal with feelings of guilt, grief, anger, depression, and anxiety. Support can be obtained through family and group counseling, support groups, and individual therapy, if needed. Your physician can help you evaluate your options, though planning for long-term care should be discussed well before it becomes necessary.
An individual with Alzheimer’s disease may exhibit difficult behaviors such as severe mood swings, verbal or physical aggression, combativeness, repetition of words, and wandering. Efforts to maintain or improve the patient’s behavior can help improve the quality of life for the patient, your family, and you. The following techniques are designed to manage the functional and behavioral deterioration of a patient with Alzheimer’s disease. These strategies have worked for many families, often delaying institutionalization. Talk with your physician about strategies that may help you.
Several medications are currently on the market that help to delay the severity of cognitive impairment as well as treat the behavioral symptoms of Alzheimer’s disease. Talk to your family member’s physician to discuss drug therapy, and consult the American Association for Geriatric Psychiatry for more information.
Interventions designed to improve patients’ functioning also have been shown to improve Alzheimer’s disease symptoms. Such strategies help the patient retain mental and physical abilities and help with daily activities of hygiene, dressing, grooming, and eating. The techniques use incentives, verbal and physical prompting, and physical guidance. For example, having an Alzheimer’s disease patient choose the specific activity to engage in for the day promotes independence.
The well-known benefits of exercise apply to the person with dementia as well. Simple stretches, scheduled walking, or peddling a stationary bicycle all can help prolong mobility, decrease agitation, and improve sleep in the mild to moderately diseased patient.
Monitoring incontinence, scheduling bathroom time, and providing reminders are techniques that can help caregivers manage incontinence at home.
Sleep problems associated with Alzheimer’s disease can be a major source of caregiver stress and fatigue. Studies have shown that a period of bright light may decrease an individual’s agitation and improve sleep patterns. Other strategies for enhancing nighttime sleep include maintaining a darkened environment at night, providing an early evening warm bath, and limiting daytime napping.
White noise—continuous, monotonous, soft background noise—has been shown to modestly decrease verbal agitation in some patients. In addition to white noise generators, recordings of ocean waves, flowing streams, or other nature sounds may be soothing for the patient. Music therapy may also help by stirring memories and emotions.
Dimming lights at mealtime may decrease mealtime agitation and increase food consumption.
Visual cueing, such as posting a picture of a bed on the door of the patient’s bedroom, can help a person with dementia find his or her way around a home as memory begins to fade. Pictures may provide more effective cues for direction than words.
Providing a supportive environment
Individuals with Alzheimer’s disease are highly sensitive to their environment and have a decreased tolerance for stress. Your physician can help you identify environmental triggers (for example, lights that are too bright or uncomfortable room or water temperatures) that may cause behavioral problems and work to eliminate them.
Traditional psychosocial therapy
Counseling can help patients in mild states of dementia reduce anger, anxiety, fear, suspiciousness, frustration, and depression. A mental health professional can provide advice and encouragement and help the patient interpret his or her feelings.
By receiving encouragement and support from peers, patients can draw upon their long-term memory to recall and share events from their past. Reminiscence therapy often is conducted in group settings but can be used on an individual basis.
As dementia progresses, caregivers may find that attempts to correct their loved one’s misstatements or delusions do more harm than good. Validation is a technique in which the family member or caregiver affirms the patient’s attempts to communicate, even if the patient is engaged in a false sense of reality.
A person with moderate to severe dementia may find comfort in simulated conversations with a close friend or family member when the individual cannot be there in person. A simple audio or video tape recording of the individual recounting past events, with pauses to allow the patient to respond, provides temporary companionship and allows caregivers to attend to other things.
Petting or watching small pets can improve the mood and behavior of dementia patients. Pets can be introduced in both group and individual counseling sessions.
Recreational therapies include exercises, group activities, and simple games. Tailored to the stage of the disease, these can be excellent stimulation for the patient and can help control problem behaviors.
Art therapies include drawing, collage, coloring, sculpture, dance, and listening to music. These activities provide a creative outlet for the patient to express emotions without talking. Other benefits include mood improvement, sensory and intellectual stimulation, decreased agitation, and improved motor skills.
As a result of the demanding and emotional work, caregivers tend to suffer clinical depression and anxiety more often than the general population. A substantial percentage of caregivers—as many as fifty percent—experience depressive symptoms severe enough to call for treatment. As a caregiver of someone with dementia, you should be aware of the signs of depression and talk to your doctor if you have symptoms. Providing the best possible care for your family member requires that you remain healthy and strong.
The following symptoms in caregivers may indicate depression:
- Aches and pains that won’t go away
- Problems with eating and weight
- Tiredness or lack of energy
- Loss of pleasure or interest in activities
- Feeling empty or sad
- Excessive feelings of guilt
The spouses of Alzheimer disease patients often suffer the most and benefit significantly from long-term social support. When social support fails to reduce the depression, antidepressant medication may be helpful. In fact, treating even mild depression can make a remarkable difference for both you and your patient.
Depression associated with or brought on by caregiving is not necessarily eliminated or reduced when a patient dies. For support after the death of a loved one, you and your family may want to talk with your physician or seek bereavement counseling. On the death of a spouse with Alzheimer’s disease, some men experience increased depression while some women improve, according to studies.
Helping Caregivers Care for Themselves
Caregivers who are prepared, knowledgeable, supported, and in good psychological and physical health ultimately provide the best care. You can take the following steps to prepare for the challenges of caring for a dementia patient.
- Learn about the available community resources (adult day care, in-home assistance, visiting nurses). Ask your physician, inquire at your local library or hospital, or contact the Eldercare Locator (visit www.eldercare.gov or phone 1-800-677-1116).
- Contact the local Alzheimer’s Association chapter (the association can help caregivers with caregiving skills and techniques) and register with the organization’s Safe Return program.
- Contact support groups through your local Alzheimer’s Association or hospital.
- Ask for help from other family members and friends.
- Attend to your own health.
- Plan ahead for future legal and financial issues.
- Attend to your own advanced planning needs (in addition to advance planning for the patient) in the event you become unable to care for the patient.
- Create strategies for handling medical emergencies that do not rely on the individual with Alzheimer’s disease.
Referral to Specialists
Referral to a specialist or specialty Alzheimer’s disease center sometimes is necessary. Geriatric psychiatrists, medical doctors with special training in the mental health of older adults, treat both older adults and their caregivers. Geriatric psychiatrists can provide:
- Behavioral management, especially for agitation, psychosis or violent behavior. Management of suicidal behavior or treatment of major depression.
- Individual or family therapy for patients and caregivers.
- Functional evaluation to make a determination about long-term care placement.
Geriatricians can be helpful when there is a mixture of complex medical and behavioral issues, when complex drug regimens need evaluating, and in the assessment of long-term care needs.
Clinical psychologists and advance practice psychiatric nurses (APNs) can provide therapy for caregivers, and social workers can offer counseling and link patients and family members to community resources. Activity and physical therapists provide guidance on appropriate levels of physical and group activity for patients. Occupational therapists can evaluate the patient’s ability to perform activities of daily living and offer strategies to maximize functioning.
Research and Future Treatment
Currently much research is being conducted on the nature of Alzheimer’s disease that will lead to earlier diagnoses and more effective treatments. Researchers are also investigating methods to better support caregivers to help ease the burden of caring for patients with dementia.
Caring for the Patient
Caring for a loved one with dementia requires talking to the patient’s physician, family members, and other caregivers. Effective communication among all will help provide the best care for the patient. Be alert to the stress of caregiving and talk to your physician when stress becomes too much. The emotional stress of caregiving can cause isolation, anxiety, increased physical illness, and depression. Not only are these conditions harmful to you, but they also can be detrimental to the care of the Alzheimer’s disease patient. Counseling and behavioral interventions for both patients and caregivers can improve your quality of life and quality of care.