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Introduction
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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What is Alzheimer's Disease?
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 or conditions. Other symptoms include changes in personality, mood, or behavior.
What are the Symptoms of AD?
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, nor to predict 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, and they 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.
Throughout the Home
Outside Approaches to the House
Entryway
Kitchen
Bedroom
Bathroom
Living Room
Laundry Room
Garage/Shed/Basement
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.
Wandering
Rummaging/Hiding Things
Hallucinations, Illusions, and Delusions
Due to the 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.
Special Occasions/Gatherings/Holidays
When celebrations, special events, or holidays include large numbers of people, remember that it is possible 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.
Impairment of the Senses
Alzheimer's disease can cause changes in the ability to interpret what a person can see, hear, taste, feel, or smell, even though his or her sense organs may still be intact. 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.
Vision
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.
Smell
A loss or decrease in smell often accompanies Alzheimer's disease.
Touch
People with AD may experience loss of sensation or may no longer be able to interpret feelings of heat, cold, or discomfort.
Taste
People with AD may lose taste sensitivity. As their judgment declines, they also may place dangerous or inappropriate things in their mouth.
Hearing
People with AD may have normal hearing, but they may lose their ability to interpret what they hear accurately. This may result in confusion or over-stimulation.
Driving is a complex activity that demands quick reactions, alert senses, and split-second decision-making. For a person with AD, driving becomes increasingly more 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 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 the occupants, 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.
Additional Resources
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) CenterThis service of the National Institute on Aging is funded by the Federal government. It offers information and publications on diagnosis, treatment, patient care, caregiver needs, long-term care, education and training, and research related to AD. Publications and videos can be ordered through the ADEAR Center or via the website.
P.O. Box 8250 Silver Spring, MD 20907-8250 1-800-438-4380Web address: www.alzheimers.nia.nih.gov e-mail address: adear@nia.nih.gov
Alzheimer's AssociationThe Alzheimer's Association is a nonprofit organization that supports families and caregivers of people with Alzheimer's disease. Local chapters provide referrals to local resources and services and sponsor support groups and educational programs. Online and print versions of publications also are available. In addition, the Association offers the Safe Return program to help in the identification and safe, timely return of people with Alzheimer's disease and related dementias who wander and become lost. The Association maintains a national photo/ information database and staffs a 24-hour toll-free emergency crisis line.
225 North Michigan Avenue, Floor 17Chicago, IL 60601-7633 1-800-272-3900Web address: www.alz.org
Ageless DesignConsultation services, architectural design review, books, articles, brochures, pamphlets, and audiotapes are provided by this organization.
3197 Trout Place RoadCumming, GA 300411-800-752-3238Web address: www.agelessdesign.com
American Red CrossThe 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.
2025 E Street NWWashington, DC 20006 1-800-435-7669Web address: www.redcross.org
Children of Aging ParentsThis nonprofit group provides information and materials for adult children caring for their older parents. Caregivers of people with Alzheimer's disease also may find this information helpful.
P.O. Box 167 Richboro, PA 18954 1-800-227-7294Web address: www.caps4caregivers.org
Eldercare LocatorThe Eldercare Locator is a nationwide, directory assistance service helping older people and their caregivers locate local support and resources for older Americans. It is funded by the Administration on Aging (AoA). The AoA Alzheimer's disease Resource Room contains information for families, caregivers, and professionals about AD, caregiving, working with and providing services to people with AD, and support services.
1-800-677-1116Web address: www.eldercare.gov
Elder Care OnlineInformation, education and support for caregivers, safety advice, and links to additional caregiver resources are featured on this website maintained by Prism Innovations, Inc.
Web address: www.ec-online.net
Family Caregiver Alliance The community-based nonprofit organization offers support services for those caring for adults with AD, stroke, traumatic brain injuries, and other cognitive disorders.
180 Montgomery Street, Suite 1100San Francisco, CA 941041-800-445-8106Web address: www.caregiver.org
Well Spouse AssociationThis nonprofit membership organization gives support to wives, husbands, and partners of the chronically ill and/or disabled. Well Spouse publishes the bimonthly newsletter Mainstay.
63 West Main Street, Suite HFreehold, NJ 077281-800-838-0879Web address: www.wellspouse.org
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