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Published by the Geriatric Mental Health Foundation
Table of Contents:
Alzheimers 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.
Understanding and Recognizing the Special Needs of Families and Caregivers
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 members doctor to provide the very best care.
As the disease progresses, an Alzheimers 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 Alzheimers disease, are the most disturbing aspect of the disease for many caregivers. These disorders include depression, agitation, wandering, and sleep disturbances.
Your family members 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.
Alzheimers 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 patients disease, and some may deny the problem. The patients 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 patients 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 Alzheimers
Association, the Alzheimers Association website (www.alz.org),
the Geriatric Mental Health
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. Dont expect to absorb all the information at once.
As a caregiver of an Alzheimers 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 StressSigns to Watch for, Steps to Take, a brochure from the Alzheimers
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 patients 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 ones Alzheimers 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 Alzheimers 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.
Five Reactions to Family Adjustment
||Help for the Caregiver
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.
||Attempts to compensate for the illness and its impairments. By being over-involved in the patients 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 patients needs. The consequences of over-involvement can be detrimental to the patient.
||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.
||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.
||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.
Caring for the Caregiver
Maintaining your own health and stamina is an important part of caring for a patient with Alzheimers disease. Different psychosocial and behavioral interventionstreatments, activities, and techniquescan help you and the patient by relieving some of your burden and enhance patient care. By failing to treat an Alzheimers disease patients excess disabilities, caregivers may burn out and choose institutional care for the family member earlier than necessary. In reality, the Alzheimers disease patient is part of a larger family system, and a successful management regimen in which the individuals behavioral and mood disorders are controlled can have a profound effect on the well-being of all family members.
Help for Families and Caregivers
The behavioral and emotional conditions commonly associated with Alzheimers 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 ones quality of life.
The following psychosocial interventions can help you and your family better cope with and help someone with Alzheimers disease:
Support groups. 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 Alzheimers disease patients through local chapters of the Alzheimers 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.
Respite services. 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.
Skills training. Caring for an Alzheimers disease patient at home requires special skills that may be new to you. Training programs in the community, such as those provided through the Alzheimers Association, help caregivers manage Alzheimers disease patients at home. The manner in which you communicate with the individual with Alzheimers 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 Alzheimers 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 patients 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 Alzheimers disease. These strategies have worked for many families, often delaying institutionalization. Talk with your physician about strategies that may help you.
Pharmacological treatments. Several medications are currently on the market that help to delay the severity of cognitive impairment as well as treat the behavioral symptoms of Alzheimers disease. Talk to your family members physician to discuss drug therapy, and consult the American Association for Geriatric Psychiatry for more information.
Independence-promoting strategies. Interventions designed to improve patients functioning also have been shown to improve Alzheimers 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 Alzheimers disease patient choose the specific activity to engage in for the day promotes independence.
Strength/mobility enhancement. 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.
Incontinence management. Monitoring incontinence, scheduling bathroom time, and providing reminders are techniques that can help caregivers manage incontinence at home.
Sleep management. Sleep problems associated with Alzheimers disease can be a major source of caregiver stress and fatigue. Studies have shown that a period of bright light may decrease an individuals 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. White noisecontinuous, monotonous, soft background noisehas 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.
Lighting. Dimming lights at mealtime may decrease mealtime agitation and increase food consumption.
Visual cueing. Visual cueing, such as posting a picture of a bed on the door of the patients 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 Alzheimers 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.
Reminiscence therapy. 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.
Validation. As dementia progresses, caregivers may find that attempts to correct their loved ones misstatements or delusions do more harm than good. Validation is a technique in which the family member or caregiver affirms the patients attempts to communicate, even if the patient is engaged in a false sense of reality.
Simulated presence. 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.
Pet therapy. 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. 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. 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 caregiversas many as fifty percentexperience 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 wont 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.
Helping Caregivers Care for Themselves
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 Alzheimers disease, some men experience increased depression while some women improve, according to studies.
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.
Referral to Specialists
- 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 Alzheimers Association chapter (the association can help caregivers with caregiving skills and techniques) and register with the organizations Safe Return program.
- Contact support groups through your local Alzheimers 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 Alzheimers disease.
Referral to a specialist or specialty Alzheimers 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 patients 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 Alzheimers 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 patients 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 Alzheimers disease patient. Counseling and behavioral interventions for both patients and caregivers can improve your quality of life and quality of care.
Resources and Support for Families, Caregivers and Physicians
7910 Woodmont Avenue, Suite 1050
Bethesda, MD 20814
- Alzheimers Disease: Understanding the Most Common Dementing Disorder brochure (English and Spanish versions available online and in print)
- Depression in Late Life: Not a Natural Part of Aging brochure (English and Spanish versions available online and in print)
- The Role of the Geriatric Psychiatrist brochure (English and Spanish versions available online and in print)
- Referral service to board-certified geriatric psychiatrists (available online or by phone)
601 E Street, NW
Washington, DC 20049
- AARP website: More than 30 articles are posted on AARPs website on caring for parents, choosing a nursing home, legal issues, public benefit programs, finding help, and other topics.
Administration on Aging, U.S. Department of Health and Human Services
Washington, DC 20201
- Alzheimers Resource Room, an online collection of caregiving tips and resources (www.aoa.gov/alz)
- Long-Term Care Ombudsmen Program: Long-term care ombudsmen are advocates for residents of nursing homes, board and care homes, assisted living facilities and similar adult care facilities.
225 N. Michigan Avenue, Fl. 17
Chicago, IL 60611-1676
- Resource Center: The Alzheimers Association maintains an extensive Resource Center of fact sheets, resource lists, and newsletters on facts and statistics, diagnosis and treatment, symptom management, daily care, and caregiver resources. Call or visit their website.
- The Safe Return program assists in the identification and safe, timely return of individuals with Alzheimers disease and related dementias who wander off, sometimes far from home, and become lost. For more information, call or visit the Alzheimers Associations website.
- Local chapters provide programs and services for community members. Call the Alzheimers Association or visit their website to find your chapter.
Alzheimers Disease Education and Referral (ADEAR) Center
P.O. Box 8250
Silver Spring, MD 20907-8250
- Caregiver Guide: Tips for Caregivers of People with Alzheimers Disease
- Home Safety for People with Alzheimers Disease
- Alzheimers Disease Centers (ADCs) Program Directory
- Alzheimers Disease fact sheets
- Alzheimers Disease Clinical Trials Database
- An information specialist can help you find information on Alzheimers disease, the latest research findings, studies of new treatments, publications about Alzheimers disease and related disorders, and other groups to contact for more information, publications, and services. Call 800-438-4380.
- The Eldercare Locator is a national toll-free directory assistance public service of the U.S. Administration on Aging that helps people locate aging services in every community throughout the United States.
- Learn about a variety of resources in your community, including: Alzheimers hotlines, transportation, housing options, home health services, home delivered meals, legal assistance, adult day care and respite services, and long-term care ombudsmen.
- Call Monday through Friday, 9:00 AM to 8:00 PM ET. For calls after normal hours of operation, leave your name and telephone number. Calls will be returned the next business day.
National Alliance for Caregiving
4720 Montgomery Lane, 5th Floor
Bethesda, MD 20814
- The Family Care Resource Connection is an online database of resources to help family caregivers. Topics include Alzheimers disease, skills for caregivers, and coping.
- Tips for Caregivers
National Council on the Aging
300 D Street, SW Suite 801
Washington, DC 20024
- AlzheimersCaregivers Guide: Caring for Someone with Alzheimers and AlzheimersPatient Guide are available online
- BenefitsCheckUp is a free, confidential online service that tells seniors if they are eligible for federal and state assistance programs. The consumer service is available to all seniors and caregivers for free at www.benefitscheckup.org.
National Family Caregivers Association
10400 Connecticut Avenue, #500
Kensington, MD 20895-3944
- The National Family Caregivers Association (NFCA) exists to support family caregivers and to speak out publicly for caregivers needs. Benefits of membership include the Take Care! Self Care for the Family Caregiver newsletter and an 800 number and Internet access to professional caregiver advisory services to help you gather information and make decisions.
- The following are available online to the public: Frequently Asked Questions, Ten Tips for Family Caregivers, Caregiver Self Advocacy: 4 Messages to Live By, Improving Doctor/Caregiver Communication, A Guide for Family Caregivers, and When Your Loved One is Hospitalized: Helpful Hints for Family Caregivers
- Helping Former Caregivers Move On With Their Lives: Bereavement Kit, $10.00. Order online or by phone.
National Institute of Mental Health
NIMH Public Inquiries
6001 Executive Boulevard
RM. 8184, MSC 9663
Bethesda, MD 20892-9663
Phone: 866-615-6464 (toll-free)
- Fact sheets on depression and anxiety disorders
- Website links to Healthfinder (www.healthfinder.gov), a resource for the government and nonprofit health and human services information on the Internet and the National Institutes of Health online health information (health.nih.gov)
National Institute on Aging
31 Center Drive, MSC 2292
Bethesda, MD 20892
- Caregiver Guide: Tips for Caregivers of People with Alzheimers Disease
- Alzheimers disease fact sheets
- The Resource Directory for Older People is a database of information about national and state-level organizations that serve older adults and geriatric professionals. Resources in the database include federal and state agencies, Administration on Aging-supported resource centers, professional societies, private groups, and volunteer programs.
- Alzheimers Disease and Related Dementias: Acute and Long-Term Care Services, a report from the Advisory Panel on Alzheimers Disease
- Alzheimers Disease and Related Dementias: Biomedical Update
- Alzheimers Disease Centers (ADCs) Program Directory
- Alzheimers Disease Genetics
- Alzheimers Disease: Unraveling the Mystery, a 48-page booklet detailing the research on Alzheimers disease
National Mental Health Association
2001 N. Beauregard Street, 12th Floor
Alexandria, VA 22311
Phone: 800-969-6642 or 703-684-7722
For Health Care Professionals
- The NMHA Resource Center: information on mental illnesses and treatments, and referrals for local treatment services. Call toll-free 800-969-NMHA (800-969-6642); TTY line for the hearing impaired: 800-433-5959.
- Alzheimers disease and dementia fact sheets
Counseling the Alzheimers Caregiver: A Resource for Health
Care Professionals by Mary S. Mittelman,
Cynthia Epstein, and Alicia Pierzchala. American Medical Association
Press, 2003. $42.95.
- This manual covers Alzheimers disease issues from diagnosis to end of life and shows health care professionals how to coach caregivers to deal with them effectively. Strategies were tested over 15 years at New York University School of Medicines Alzheimers Disease Center, where hundreds of caregivers learned techniques to deliver improved patient care while maintaining their own physical and emotional well-being.
Practice Guidelines. Guidelines and principles to help health care professionals diagnose and treat patients with Alzheimers disease are available from the American Association for Geriatric Psychiatry (www.aagponline.org), the Alzheimers Association (www.alz.org), the Agency for Healthcare Research and Quality (www.ahcpr.gov), the American Academy of Neurology (www.aan.com), and the American Psychiatric Association (www.psych.org).
This brochure was developed and published by the:
Geriatric Mental Health Foundation
7910 Woodmont Avenue, Suite 1050
Bethesda, MD 20814-3004
The Geriatric Mental Health Foundation
The Geriatric Mental Health Foundation is a not-for-profit 501(c)(3) organization established by the American Association for Geriatric Psychiatry (AAGP) to raise awareness of psychiatric and mental health disorders affecting the elderly. The Foundation focuses on public education targeted to the health care consumer and family caregiver about mental illness prevention and treatment and mental health promotion. The Foundation develops programs to enhance communication and foster broad collaboration among the geriatric mental health research community and mental health care providers on behalf of the general public.
The American Association for Geriatric Psychiatry
The American Association for Geriatric Psychiatry (AAGP) is a professional organization of 2,000 geriatric psychiatrists and other mental health professionals dedicated to improving the mental health and well-being of older people. AAGP enhances the knowledge base and standards of practice in geriatric psychiatry through education and research and advocates for meeting the mental health needs of older Americans. For information on geriatric psychiatrists in your area, contact AAGP at 301-654-7850, extension 100 or visit www.AAGPonline.org.
This publication is part of a
series of brochures designed
to educate consumers about the
mental health of the elderly.
For additional consumer brochures,
© Geriatric Mental Health Foundation 2003