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Caring for a person with Alzheimer's disease (AD) is a challenge that calls upon the patience, creativity, knowledge, and skills of each caregiver. We hope that this booklet will help you cope with some of these challenges and develop creative solutions to increase the security and freedom of the person with AD in your home, as well as your own peace of mind.
This booklet is for those who provide in-home care for people with AD or related disorders. Our goal is to improve home safety by identifying potential problems in the home and offering possible solutions to help prevent accidents.
We begin with a checklist to help you make each room in your home a safer environment for the person with AD. Next, we hope to increase awareness of the ways specific impairments associated with the disease can create particular safety hazards in the home. Specific home safety tips are listed to help you cope with some of the more hazardous behaviors that may occur as the disease advances. We also include tips for managing driving and planning for natural disaster safety. The booklet ends with a list of resources for family caregivers.
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Alzheimer's disease is a progressive, irreversible disease that affects brain cells and produces memory loss and intellectual impairment in as many as 4.5 million American adults. This disease affects people of all racial, economic, and educational backgrounds.
AD is the most common cause of dementia in adults. Dementia is defined as loss of memory and intellect that interferes with routine personal, social, or occupational activities. Dementia is not a disease; rather, it is a group of symptoms that may accompany certain diseases and conditions. Other symptoms include changes in personality, mood, or behavior.
Although AD primarily affects people age 60 or older, it also may affect people in their 50s and, rarely, even younger. Other causes of irreversible dementia include multi-infarct dementia (a series of minor strokes resulting in widespread death of brain tissue), Pick's disease, Binswanger's disease, Parkinson's disease, Huntington's disease, Creutzfeldt-Jakob disease, amyotrophic lateral sclerosis (Lou Gehrig's disease), multiple sclerosis, and alcohol abuse. The recommendations in this booklet deal primarily with common problems in AD, but they also may apply to any of the related dementing disorders.
There is no "typical" person with Alzheimer's. There is tremendous variability among people with AD in their behaviors and symptoms. At present, there is no way to predict how quickly the disease will progress in any one person or the exact changes that will occur. We do know, however, that many of these changes will present problems for caregivers. Therefore, knowledge and prevention are critical to safety.
People with AD have memory problems and cognitive impairment (difficulties with thinking and reasoning), and eventually they will not be able to care for themselves. They may experience confusion, loss of judgment, and difficulty finding words, finishing thoughts, or following directions. They also may experience personality and behavior changes. For example, they may become agitated, irritable, or very passive. Some may wander from home and become lost. They may not be able to tell the difference between day and night—some people with AD may wake up, get dressed, and start to leave the house in the middle of the night thinking that the day has just started. They may suffer from losses that affect vision, smell, or taste.
These disabilities are very difficult, not only for the person with AD, but for the caregiver, family, and other loved ones as well. Caregivers need resources and reassurance to know that while the challenges are great, there are specific actions to take to reduce some of the safety concerns that accompany Alzheimer's disease.
People with AD become increasingly unable to take care of themselves. However, individuals will move through the disease in their own unique manner. As a caregiver, you face the ongoing challenge of adapting to each change in the person's behavior and functioning. The following general principles may be helpful.
This issue needs careful evaluation and is certainly a safety concern. The following points may help you decide. Does the person with AD:
You may want to seek input and advice from a health care professional to assist you in these considerations. As Alzheimer's disease progresses, these questions will need ongoing evaluation.
Prevention begins with a safety check of every room in your home. Use the following room-by-room checklist to alert you to potential hazards and to record any changes you need to make. You can buy products or gadgets necessary for home safety at stores carrying hardware, electronics, medical supplies, and children's items.
Keep in mind that it may not be necessary to make all of the suggested changes. This booklet covers a wide range of safety concerns that may arise, and some modifications may never be needed. It is important, however, to re-evaluate home safety periodically as behavior and abilities change.
Your home is a personal and precious environment. As you go through this checklist, some of the changes you make may impact your surroundings positively, and some may affect you in ways that may be inconvenient or undesirable. It is possible, however, to strike a balance. Caregivers can make adaptations that modify and simplify without severely disrupting the home. You may want to consider setting aside a special area for yourself, a space off-limits to anyone else and arranged exactly as you like. Everyone needs private, quiet time, and as a caregiver, this becomes especially crucial.
A safe home can be a less stressful home for the person with AD, the caregiver, and family members. You don't have to make these changes alone. You may want to enlist the help of a friend, professional, or community service such as the Alzheimer's Association.
Although a number of behavior and sensory problems may accompany Alzheimer's disease, not every person will experience the disease in exactly the same way. As the disease progresses, particular behavioral changes can create safety problems. The person with AD may or may not have these symptoms. However, should these behaviors occur, the following safety recommendations may help reduce risks.
Due to complex changes occurring in the brain, people with AD may see or hear things that have no basis in reality. Hallucinations come from within the brain and involve hearing, seeing, or feeling things that are not really there. For example, a person with AD may see children playing in the living room when no children exist. Illusions differ from hallucinations because the person with AD is misinterpreting something that actually does exist. Shadows on the wall may look like people, for example. Delusions are persistent thoughts that the person with AD believes are true but in reality are not. Often, stealing is suspected, for example, but cannot be verified.
It is important to seek medical evaluation if a person with AD has ongoing disturbing hallucinations, illusions, or delusions. Often, these symptoms can be treated with medication or behavior management techniques. With all of the above symptoms, the following environmental adaptations also may be helpful.
When celebrations, special events, or holidays include large numbers of people, remember that large groups may cause a person with AD some confusion and anxiety. The person with AD may find some situations easier and more pleasurable than others.
Alzheimer's disease can cause changes in the ability to interpret what a person can see, hear, taste, feel, or smell. The person with AD should be evaluated periodically by a physician for any such changes that may be correctable with glasses, dentures, hearing aids, or other treatments.
People with AD may experience a number of changes in visual abilities. For example, they may lose their ability to comprehend visual images. Although there is nothing physically wrong with their eyes, people with AD may no longer be able to interpret accurately what they see due to changes in their brain. Also, their sense of perception and depth may be altered. These changes can cause safety concerns.
A loss of or decrease in smell often accompanies Alzheimer's disease.
People with AD may experience loss of sensation or may no longer be able to interpret feelings of heat, cold, or discomfort.
People with AD may lose taste sensitivity. As their judgment declines, they also may place dangerous or inappropriate things in their mouth.
People with AD may have normal hearing, but they may lose their ability to interpret what they hear accurately. This loss may result in confusion or over-stimulation.
Driving is a complex activity that demands quick reactions, alert senses, and split-second decisionmaking. For a person with AD, driving becomes increasingly difficult. Memory loss, impaired judgment, disorientation, impaired visual and spatial perception, slow reaction time, certain medications, diminished attention span, inability to recognize cues such as stop signs and traffic lights can make driving particularly hazardous.
People with AD who continue to drive can be a danger to themselves, their passengers, and the community at large. As the disease progresses, they lose driving skills and must stop driving. Unfortunately, people with AD often cannot recognize when they should no longer drive. This is a tremendous safety concern. It is extremely important to have the impaired person's driving abilities carefully evaluated.
Warning Signs of Unsafe Driving
Often, it is the caregiver, a family member, neighbor, or friend who becomes aware of the safety hazards. If a person with AD experiences one of more of the following problems, it may be time to limit or stop driving.
Does the person with AD:
Please do not wait for an accident to happen. Take action immediately!
Explaining to the person with AD that he or she can no longer drive can be extremely difficult. Loss of driving privileges may represent a tremendous loss of independence, freedom, and identity. It is a significant concern for the person with AD and the caregiver. The issue of not driving may produce anger, denial, and grief in the person with AD, as well as guilt and anxiety in the caregiver. Family and concerned professionals need to be both sensitive and firm. Above all, they should be persistent and consistent.
The doctor of a person with AD can assist the family with the task of restricting driving. Talk with the doctor about your concerns. Most people will listen to their doctor. Ask the doctor to advise the person with AD to reduce his or her driving, go for a driving evaluation or test, or stop driving altogether. An increasing number of States have laws requiring physicians to report AD and related disorders to the Department of Motor Vehicles. The Department of Motor Vehicles then is responsible for retesting the at-risk driver. Testing should occur regularly, at least yearly.
When dementia impairs driving and the person with AD continues to insist on driving, a number of different approaches may be necessary.
Natural disasters come in many forms and degrees of severity. They seldom give warning, and they call upon good judgment and the ability to follow through with crisis plans. People with AD are at a serious disadvantage. Their impairments in memory and reasoning severely limit their ability to act appropriately in crises.
It is always important to have a plan of action in case of fire, earthquake, flood, tornado, or other disasters. Specific home safety precautions may apply and environmental changes may be needed. The American Red Cross is an excellent resource for general safety information and preparedness guides for comprehensive planning. If there is a person with AD in the home, the following precautions apply:
Who Would Take Care of the Person with AD if Something Happened to You?
It is important to have a plan in case of your own illness, disability, or death.
Home safety takes many forms. This booklet focuses on the physical environment and specific safety concerns. But the home environment also involves the needs, feelings, and lifestyles of you the caregiver, your family, and the person with AD. Disability affects all family members, and it is crucial to maintain your emotional and physical welfare in addition to a safe environment.
We encourage you to make sure you have quiet time, time out, time to take part in something you enjoy. Protect your own emotional and physical health. Your local Alzheimer's Association chapter can help you with the support and information you may need as you address this very significant checkpoint in your home safety list. You are extremely valuable. As you take on a commitment to care for a person with AD, please take on the equally important commitment to care for yourself.
Several organizations offer caregivers information about AD. To learn more about support groups, services, research, and additional publications, you may wish to contact the following groups:
Alzheimer’s Disease Education and Referral (ADEAR) CenterP.O. Box 8250Silver Spring, MD 20907-8250800-438-4380 (toll-free)www.nia.nih.gov/Alzheimers
A service of the National Institute on Aging, the ADEAR Center offers information and publications for families, caregivers, and professionals on diagnosis, treatment, patient care, caregiver needs, long-term care, education and training, and research related to AD. Staff members answer telephone, email, and written requests and make referrals to local and national resources. The ADEAR website offers free, online publications in English and Spanish; email alert and online Connections newsletter subscriptions; an AD clinical trials database; the AD Library database; and more.
Alzheimer’s Association225 North Michigan Avenue, Floor 17 Chicago, IL 60601-7633800-272-3900 (toll-free) 866-403-3073 (TDD/toll-free)www.alz.org
The Alzheimer’s Association is a national nonprofit association with a network of local chapters that provide education and support for people diagnosed with Alzheimer’s disease, their families, and caregivers. The Association also supports research on AD.
Ageless Design3197 Trout Place RoadCumming, GA 30041800-752-3238www.agelessdesign.com
This organization offers books, videos, a newsletter, and other products for caregivers of people with AD.
American Red Cross2025 E Street, NWWashington, DC 20006703-206-6000www.redcross.org
The Red Cross offers health information, health services, disaster relief, and emergency services to the public. Local chapters provide programs for older people, including safety courses and home nurse care instruction.
Children of Aging ParentsP.O. Box 167Richboro, PA 18954800-227-7294www.caps4caregivers.org
This nonprofit group provides information and materials for adult children caring for their older parents. Caregivers of people with Alzheimer’s disease may also find this information helpful.
Eldercare Locator800-677-1116 (toll-free)www.eldercare.gov
Eldercare Locator is a nationwide directory-assistance service helping older people and their caregivers locate local support and resources. It is funded by the U.S. Administration on Aging, whose website at www.aoa.gov also features AD information for families, caregivers, and health professionals.
ElderCare Online50 Amuxen CourtIslip, NY 11751www.ec-online.net
This website features information, education, and support for caregivers; safety advice; and links to additional caregiver resources. It is maintained by Prism Innovations Inc.
Family Caregiver Alliance180 Montgomery Street, Suite 1100San Francisco, CA 94104800-445-8106 (toll-free)www.caregiver.org
The Family Caregiver Alliance is a nonprofit organization that offers support services and information for people caring for adults with AD, stroke, traumatic brain injuries, and other cognitive disorders.
Well Spouse Association63 West Main Street, Suite HFreehold, NJ 07728800-838-0879 (toll-free)www.wellspouse.org
This nonprofit organization gives support to spouses and partners of people who are chronically ill and/or disabled. It offers supports groups and a newsletter.
The National Institute on Aging gratefully acknowledges the caring staff of the Alzheimer's Disease Research Center at the University of California, San Diego, and the Alzheimer's Association of San Diego, who shared their valuable advice, experience, and expertise to create this booklet.
U.S. Department of Health and Human ServicesPublic Health ServiceNational Institutes of HealthNational Institute on AgingAlzheimer's Disease Education and Referral (ADEAR) Center
December 2008