Caring for a person with Alzheimerâ€™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.
WHAT IS ALZHEIMER'S DISEASE?
Alzheimer's disease is a progressive, irreversible brain disease that destroys memory and thinking skills. Estimates vary, but experts suggest that as many as 5.1 million Americans has the disease, which affects people of all racial, economic, and educational backgrounds. Although Alzheimer's primarily affects people age 60 or older, it also may affect people in their 50s and, rarely, even younger.
Alzheimer's disease is the most common cause of dementia in adults. Dementia is a loss of memory and intellect that interferes with daily life and 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.
Other causes of irreversible dementia include vascular dementia and alcohol abuse. The recommendations in this booklet deal primarily with common problems in Alzheimer's, but they also may be helpful for people with other types of dementia.
WHAT ARE THE SYMPTOMS OF AD?
There is no â€œtypicalâ€ person with Alzheimerâ€™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 Alzheimerâ€™s disease.
GENERAL SAFETY CONCERNS
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 personâ€™s behavior and functioning. The following general principles may be helpful.
1. Think prevention. It is very difficult to predict what a person with AD might do. Just because something has not yet occurred, does not mean it should not be cause for concern. Even with the best-laid plans, accidents can happen. Therefore, checking the safety of your home will help you take control of some of the potential problems that may create hazardous situations.
2. Adapt the environment. It is more effective to change the environment than to change most behaviors. While some AD behaviors can be managed with special medications prescribed by a doctor, many cannot. You can make changes in an environment to decrease the hazards and stressors that accompany these behavioral and functional changes.
3. Minimize danger. By minimizing danger, you can maximize independence. A safe environment can be a less restrictive environment where the person with AD can experience increased security and more mobility.
Is it Safe to Leave the Person With AD Alone?
This issue needs careful evaluation and is certainly a safety concern. The following points may help you decide.
Does the person with AD:
- recognize a dangerous situation; for example, fire?
- know how to use the telephone in an emergency?
- know how to get help?
- stay content within the home?
- wander and become disoriented?
- show signs of agitation, depression, or withdrawal when left alone for any period of time?
- attempt to pursue former interests or hobbies that might now warrant supervision such as cooking, appliance repair, or woodworking?
You may want to seek input and advice from a health care professional to assist you in these considerations. As
Alzheimerâ€™s disease progresses, these questions will need ongoing evaluation.
>>> HOME SAFETY ROOM-BY-ROOM <<<
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 childrenâ€™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 donâ€™t have to make these changes alone. You may want to enlist the help of a friend, professional, or community service such as the Alzheimerâ€™s Association.
THROUGHOUT THE HOME
Use an answering machine when you cannot answer phone calls, and set it to turn on after the fewest number of rings possible. A person with AD often may be unable to take messages or could become a victim of telephone exploitation. Turn ringers on low to avoid distraction and confusion. Put all portable and cell phones and equipment in a safe place so that they will not be easily lost.
Install smoke alarms near all bedrooms and carbon monoxide detectors in appropriate places; check their functioning and batteries frequently.
Avoid the use of flammable and volatile compounds near gas water heaters. Do not store these materials in an area where a gas pilot light is used.
Install secure locks on all outside doors and windows.
Hide a spare house key outside in case the person with AD locks you out of the house.
Avoid the use of extension cords if possible by placing lamps and appliances close to electrical outlets. Tack extension cords to the baseboards of a room to avoid tripping.
Cover unused outlets with childproof plugs.
Place red tape around floor vents, radiators, and other heating devices to deter the person with AD from standing on or touching a hot grid.
Check all rooms for adequate lighting.
Place light switches at the top and the bottom of stairs.
Stairways should have at least one handrail that extends beyond the first and last steps. If possible, stairways should be carpeted or have safety grip strips. Put a gate across the stairs if the person has balance problems.
Keep all medications (prescription and over-the-counter) locked. Each bottle of prescription medicine should be clearly labeled with the patientâ€™s name, name of the drug, drug strength, dosage frequency, and expiration date. Child-resistant caps are available if needed.
Keep all alcohol in a locked cabinet or out of reach of the person with AD. Drinking alcohol can increase confusion.
If smoking is permitted, monitor the person with AD whilehe or she is smoking. Remove matches, lighters, ashtrays, cigarettes, and other means of smoking from view. This reduces potential fire hazards, and with these reminders out of sight, the person may forget the desire to smoke.
Avoid clutter, which can create confusion and danger. Throw out/recycle newspapers and magazines regularly. Keep all walk areas free of furniture.
Keep plastic bags out of reach. A person with AD may choke or suffocate.
Remove all guns or other weapons from the home, or safety proof them by installing safety locks or by removing
ammunition and firing pins.
Lock all power tools and machinery in the garage, workroom, or basement.
Remove all poisonous plants from the home. Check with local nurseries or poison control centers (1-800-222-1222) for a list of poisonous plants.
Make sure all computer equipment and accessories, including electrical cords, are kept out of the way. If valuable documents or materials are stored on a home computer, protect the files with passwords. Password protect access to the Internet also, and restrict the amount of online time without supervision. Consider monitoring the person with ADâ€™s computer use, and installing software that screens for objectionable or offensive material on the Internet.
Keep fish tanks out of reach. The combination of glass, water, electrical pumps, and potentially poisonous aquatic life could be harmful to a curious person with AD.
OUTSIDE APPROACHES TO THE HOUSE
Keep steps sturdy and textured to prevent falls in wet or icy weather.
Mark the edges of steps with bright or reflective tape.
Consider installing a ramp with handrails into the home rather than steps.
Eliminate uneven surfaces or walkways, hoses, or other objects that may cause a person to trip.
Restrict access to a swimming pool by fencing it off with a locked gate, covering it, and keeping it closely supervised when in use.
In the patio area, remove the fuel source and fire starters from any grills when not in use, and supervise use when the person with AD is present.
Place a small bench or table by the entry door to hold parcels while unlocking the door.
Make sure outside lighting is adequate. Light sensors thatturn on lights automatically as you approach the house are available and may be useful. They also may be used in other parts of the home.
Prune bushes and foliage well away from walkways and doorways.
Consider a NO SOLICITING sign for the front gate or door.
Remove scatter rugs and throw rugs.
Use textured strips or nonskid wax on hardwood floors to prevent slipping.
Install childproof door latches on storage cabinets and drawers designated for breakable or dangerous items. Lock away all household cleaning products, matches, knives, scissors, blades, small appliances, and anything valuable.
If prescription or nonprescription drugs are kept in the kitchen, store them in a locked cabinet.
Remove scatter rugs and foam pads from the floor.
Install safety knobs and an automatic shut-off switch on the stove.
Do not use or store flammable liquids in the kitchen. Lock them in the garage or in an outside storage unit.
Keep a night-light in the kitchen.
Remove or secure the family â€œjunk drawer.â€ A person with AD may eat small items such as matches, hardware, erasers, plastics, etc.
Remove artificial fruits and vegetables or food-shaped kitchen magnets, which might appear to be edible.
Insert a drain trap in the kitchen sink to catch anything that may otherwise become lost or clog the plumbing.
Consider disconnecting the garbage disposal. People with AD may place objects or their own hands in the disposal.
Anticipate the reasons a person with AD might get out of bed, such as hunger, thirst, going to the bathroom, restlessness, and pain. Try to meet these needs by offering food and fluids, and scheduling ample toileting.
Use a night-light.
Use a monitoring device (like those used for infants) to alert you to any noises indicating falls or a need for help. This also is an effective device for bathrooms.
Remove scatter rugs and throw rugs.
Remove portable space heaters. If you use portable fans, be sure that objects cannot be placed in the blades.
Be cautious when using electric mattress pads, electric blankets, electric sheets, and heating pads, all of which can
cause burns. Keep controls out of reach.
If the person with AD is at risk of falling out of bed, place mats next to the bed, as long as this does not create a greater risk of accident.
Use transfer or mobility aids.
If you are considering using a hospital-type bed with rails and/or wheels, read the Food and Drug Administration's up-to-date safety information at http://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/
Understand that many people can sleep safely without bed rails, and reassess the need for using bed rails on a regular basis:
- Use beds that can be raised and lowered close to the floor to accommodate both the person with AD and your needs.
- Keep the bed in the lowest position with wheels locked.
- Use a proper size mattress or mattress with raised foam edges to prevent the person from being trapped between the mattress and rail.
- Reduce the gaps betwen the mattress and side rails.
- Monitor the person with AD frequently.
Do not leave a severely impaired person with AD alone in the bathroom.
Remove the lock from the bathroom door to prevent the person with AD from getting locked inside.
Place nonskid adhesive strips, decals, or mats in the tub and shower. If the bathroom is uncarpeted, consider placing these strips next to the tub, toilet, and sink.
Use washable wall-to-wall bathroom carpeting to prevent slipping on wet tile floors.
Use a raised toilet seat with handrails, or install grab bars beside the toilet.
Install grab bars in the tub/shower. A grab bar in contrasting color to the wall is easier to see.
Use a foam rubber faucet cover (often used for small children) in the tub to prevent serious injury should the person with AD fall.
Use plastic shower stools and a hand-held showerhead to make bathing easier.
In the shower, tub, and sink, use a single faucet that mixes hot and cold water to avoid burns.
Set the water heater to 120 degrees Fahrenheit to avoid scalding tap water.
Insert drain traps in sinks to catch small items that may be lost or flushed down the drain.
Store medications (prescription and nonprescription) in a locked cabinet. Check medication dates and throw away outdated medications.
Remove cleaning products from under the sink, or lock them away.
Use a night-light.
Remove small electrical appliances from the bathroom. Cover electrical outlets.
If a man with Alzheimer's disease uses an electric razor, have him use a mirror outside the bathroom to avoid water contact.
Clear electrical cords from all areas where people walk.
Remove scatter rugs or throw rugs. Repair or replace torn carpet.
Place decals at eye level on sliding glass doors, picture windows, or furniture with large glass panels to identify the glass pane.
Do not leave the person with AD alone with an open fire in the fireplace. Consider alternative heating sources.
Keep matches and cigarette lighters out of reach.
Keep the remote controls for the television, DVD player, and stereo system out of sight.
Keep the door to the laundry room locked if possible.
Lock all laundry products in a cabinet.
Remove large knobs from the washer and dryer if the person with AD tampers with machinery.
Close and latch the doors and lids to the washer and dryer to prevent objects from being placed in the machines.
Lock access to all garages, sheds, and basements if possible.
Inside a garage or shed, keep all potentially dangerous items, such as tools, tackle, machines, and sporting equipment either locked away in cabinets or in appropriate boxes/cases.
Secure and lock all motor vehicles and keep them out of sight if possible. Consider covering those vehicles, including bikes, which are not frequently used. This may reduce the possibility that the person with Alzheimer's will think about leaving.
Keep all toxic materials, such as paint, fertilizers, gasoline, or cleaning supplies out of view. Put them either in a high, dry place, or lock them in a cabinet.
If a person with AD is permitted in a garage, shed, or basement, preferably with supervision, make sure the area is well lit and that stairs have a handrail and are safe to walk up and down. Keep walkways clear of debris and clutter, and place overhanging items out of reach.
>>> HOME SAFETY BEHAVIOR-BY-BEHAVIOR <<<
Although a number of behavior and sensory problems may accompany Alzheimerâ€™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.
Remove clutter and clear the pathways from room to room to allow the person with AD to move about more freely.
Make sure floors provide good traction for walking or pacing. Use nonskid floor wax or leave floors unpolished. Secure all rug edges, eliminate throw rugs, or install nonskid strips. The person with AD should wear nonskid shoes or sneakers.
Place locks high or low on exit doors so they are out of direct sight. Consider installing double locks that require a key. Keep a key for yourself and hide one near the door for emergency exit purposes.
Use loosely fitting doorknob covers so that the cover turns instead of the actual knob. Due to the potential hazard they could cause if an emergency exit is needed, locked doors and doorknob covers should be used only when a caregiver is present.
Install safety devices found in hardware stores to limit the distance that windows can be opened.
If possible, secure the yard with fencing and a locked gate. Use door alarms such as loose bells above the door or devices that ring when the doorknob is touched or the door is opened.
Divert the attention of the person with AD away from using the door by placing small scenic posters on the door; placing removable gates, curtains, or brightly colored streamers across the door; or wallpapering the door to match any adjoining walls.
Place STOP, DO NOT ENTER, or CLOSED signs in strategic areas on doors.
Keep shoes, keys, suitcases, coats, hats, and other signs of departure out of sight.
Obtain a medical identification bracelet for the person with AD with the words â€œmemory lossâ€ inscribed along with an emergency telephone number. Place the bracelet on the personâ€™s dominant hand to limit the possibility of removal, or solder the bracelet closed. Check with the local Alzheimerâ€™s Association about the Safe Return program.
Place labels in garments to aid in identification.
Keep an article of the personâ€™s worn, unwashed clothing in a plastic bag to aid in finding someone with the use of dogs.
Notify neighbors of the personâ€™s potential to wander or become lost. Alert them to contact you or the police immediately if the individual is seen alone and on the move.
Give local police, neighbors, and relatives a recent picture, along with the name and pertinent information about the person with AD, as a precaution should he or she become lost. Keep extra pictures on hand.
Consider making an up-to-date home video of the person with AD.
Do not leave a person with AD who has a history of wandering unattended.
Lock up all dangerous or toxic products, or place them out of the personâ€™s reach.
Remove all old or spoiled food from the refrigerator and cupboards. A person with AD may rummage for snacks but may lack the judgment or taste to rule out spoiled foods.
Simplify the environment by removing clutter or valuable items that could be misplaced, lost, or hidden by the person with AD. These include important papers, checkbooks, charge cards, and jewelry.
If your yard has a fence with a locked gate, place the mailbox outside the gate. People with AD often hide, lose, or throw away mail. If this is a serious problem, consider obtaining a post office box.
Create a special place for the person with AD to rummage freely or sort (for example, a chest of drawers, a bag of selected objects, or a basket of clothing to fold or unfold). Often, safety problems occur when the person with AD becomes bored or does not know what to do.
Provide the person with AD a safe box, treasure chest, or cupboard to store special objects.
Close access to unused rooms, thereby limiting the opportunity for rummaging and hiding things.
Search the house periodically to discover hiding places. Once found, these hiding places can be discreetly and frequently checked.
Keep all trashcans covered or out of sight. The person with AD may not remember the purpose of the container or may rummage through it.
Check trash containers before emptying them in case something has been hidden there or accidentally thrown away.
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 false beliefs that the person thinks are real. For example, stealing may be suspected but cannot be verified.
It is important to seek medical evaluation if a person with Alzheimer's has ongoing disturbing hallucinations, illusions, or delusions. Discuss with the doctor any illnesses the person has and medicines he or she is taking. An illness or medicine may cause hallucinations or delusions. Often, these symptoms can be treated with medication or behavior management techniques. With all of these symptoms, the following environmental adaptations also may be helpful.
Paint walls a light color to reflect more light. Use solid colors, which are less confusing to an impaired person than
a patterned wall. Large, bold prints (for example, florals in wallpaper or drapes) may cause confusing illusions.
Make sure there is adequate lighting, and keep extra bulbs handy in a secured place. Dimly lit areas may produce confusing shadows or difficulty with interpreting everyday objects.
Reduce glare by using soft light or frosted bulbs, partially closing blinds or curtains, and maintaining adequate globes or shades on light fixtures.
Remove or cover mirrors if they cause the person with AD to become confused or frightened.
Ask if the person can point to a specific area that is producing confusion. Perhaps one particular aspect of the environment is being misinterpreted.
Vary the home environment as little as possible to minimize the potential for visual confusion. Keep furniture in the same place.
Avoid violent or disturbing television programs. The person with AD may believe the story is real.
Do not confront the person with AD who becomes aggressive. Withdraw and make sure you have access to an exit as needed.
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.
Large gatherings, weddings, family reunions, or picnics may be cause for anxiety. Consider having a more intimate gathering with only a few people in your home. Think about having friends and family visit in small groups rather than all at once. If you are hosting a large group, remember to prepare the person with AD ahead of time. Try to have a space available where they can rest, be by themselves, or spend some time with a smaller number of people, if needed.
Consider simplifying your holidays around the home and remember that you already may have more responsibilities than in previous years. For example, rather than cooking an elaborate dinner at Thanksgiving or Christmas, invite family and friends for a potluck dinner. Instead of elaborate decorations, consider choosing a few select items to celebrate holidays. Make sure holiday decorations do not significantly alter the environment, which might confuse the person with AD.
Holiday decorations, such as Christmas trees, lights, or menorahs, should be secured so that they do not fall or catch on fire. Anything flammable should be monitored at all times, and extra precautions should be taken so that lights or anything breakable are fixed firmly, correctly, and out of the way of those with AD.
As suggested by most manufacturers, candles of any size should never be lit without supervision. When not in use, they should be put away.
IMPAIRMENT OF THE SENSES
Alzheimerâ€™s disease can cause changes in a person's ability to interpret what he or she 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.
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.
Create color contrast between floors and walls to help the person see depth. Floor coverings are less visually confusing if they are a solid color.
Use dishes and placemats in contrasting colors for easier identification.
Mark the edges of steps with brightly colored strips of tape to outline changes in elevation.
Place brightly colored signs or simple pictures on important rooms (the bathroom, for example) for easier identification.
Be aware that a small pet that blends in with the floor or lies in walkways may be a hazard. The person with AD may trip over a small pet.
A loss or decrease in smell often accompanies Alzheimerâ€™s disease.
Install good quality smoke detectors and check them frequently. The person with AD may not smell smoke or may not associate it with danger.
Keep refrigerators clear of spoiled foods.
People with AD may experience loss of sensation or may no longer be able to interpret feelings of heat, cold, or discomfort.
Adjust water heaters to 120 degrees Fahrenheit to avoid scalding tap water. Most hot water heaters are set at 150 degrees, which can cause burns.
Color code separate water faucet handles, with red for hot and blue for cold.
Place a sign on the oven, coffee maker, toaster, crock-pot, iron, or other potentially hot appliances that says DO NOT TOUCH or STOP! VERY HOT. The person with AD should not use appliances without supervision. Unplug appliances when not in use.
Use a thermometer to tell you whether the water in the bathtub is too hot or too cold.
Remove furniture or other objects with sharp corners or pad them to reduce potential for injury.
People with AD may lose taste sensitivity. As their judgment declines, they also may place dangerous or inappropriate things in their mouth.
Keep all condiments such as salt, sugar, or spices hidden if you see the person with AD using excess amounts. Too much salt, sugar, or spice can be irritating to the stomach or cause other health problems.
Remove or lock up medicine cabinet items such as toothpaste, perfume, lotions, shampoos, rubbing alcohol, or soap, which may look and smell like edible items to the person with AD.
Consider a childproof latch on the refrigerator, if necessary.
Keep the poison control number (1-800-222-1222) by the telephone. Keep a bottle of Ipecac (vomit-inducing agent) available, but use only with instructions from poison control or 911.
Keep pet litter boxes inaccessible to the person with AD. Do not store pet food in the refrigerator.
Learn the Heimlich maneuver or other techniques to use in case of choking. Check with your local Red Cross chapter for more information and instruction.
If possible, keep a spare set of dentures. If the person keeps removing dentures, check for correct fit.
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.
Avoid excessive noise in the home such as having the stereo and the TV on at the same time.
Be sensitive to the amount of noise going on outside the home, and close windows or doors, if necessary.
Avoid large gatherings of people in the home if the person with AD shows signs of agitation or distress in crowds.
If the person wears a hearing aid, check the batteries and functioning frequently.
Driving is a complex activity that demands quick reactions, alert senses, and split-second decision-making. 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 personâ€™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 of someone with Alzheimer's behind the wheel. 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 is then 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.
Work as a team with family, friends, and professionals, and use a single, simple explanation for the loss of driving ability such as: â€œYou have a memory problem, and it is no longer safe to drive.â€ â€œYou cannot drive because you are on medication.â€ or â€œThe doctor has prescribed that you no longer drive.â€
Ask the doctor to write on a prescription pad DO NOT DRIVE. Ask the doctor to write to the Department of Motor Vehicles or Department of Public Safety saying this person should no longer drive. Show the letter to the person with AD as evidence.
Offer to drive or ask a friend or family member to drive.
Walk when possible, and make these outings special events.
Use public transportation or any special transportation provided by community organizations. Ask about senior discounts or transportation coupons. The person with AD should not take public transportation unsupervised.
Park the car at a friendâ€™s home.
Hide the car keys.
Exchange car keys with a set of unusable keys. Some people with AD are in the habit of carrying keys.
Place a large note under the car hood requesting that any mechanic call you before doing work requested by the person with AD.
Have a mechanic install a â€œkill switchâ€ or alarm system that disengages the fuel line to prevent the car from starting.
Consider selling the car and putting aside the money saved from insurance, repairs, and gasoline for taxi funds.
Do not leave a person with AD alone in a parked car.
NATURAL DISASTER SAFETY
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:
Get to know your neighbors, and identify specific individuals who would be willing to help in a crisis. Formulate a plan of action with them should the person with AD be unattended during a crisis.
Give neighbors a list of emergency numbers of caregivers, family members, and primary medical resources.
Educate neighbors beforehand about the personâ€™s specific disabilities, including inability to follow complex instructions, memory loss, impaired judgment, and probable disorientation and confusion. Give examples of some of the simple one-step instructions that the person may be able to follow.
Have regular emergency drills so that each member of the household has a specific task. Realize that the person with AD cannot be expected to hold any responsibility in the crisis plan and that someone will need to take primary responsibility for supervising the individual.
Always have at least an extra weekâ€™s supply of any medical or personal hygiene items critical to the personâ€™s welfare, such as:
- food and water
Keep an extra pair of the person's eyeglasses on hand.
Be sure that the person with AD wears an identification bracelet stating â€œmemory lossâ€ should he or she become lost or disoriented during the crisis. Contact your local Alzheimerâ€™s Association chapter and enroll the person in the Safe Return program.
Under no circumstances should a person with AD be left alone following a natural disaster. Do not count on the individual to stay in one place while you go to get help. Provide plenty of reassurance.
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.
Consult a lawyer regarding a living trust, durable power of attorney for health care and finances, and other estate planning tools.
Consult with family and close friends to decide who will take responsibility for the person with AD. You also may want to seek information about your local public guardianâ€™s office, mental health conservatorâ€™s office, adult protective services, or other case management services. These organizations may have programs to assist the person with AD in your absence.
Maintain a notebook for the responsible person who will be assuming caregiving. Such a notebook should contain the following information:
- emergency numbers
- current problem behaviors and possible solutions
- ways to calm the person with AD
- assistance needed with toileting, feeding, or grooming
- favorite activities or food
Preview board and care or long-term care facilities in your community and select a few as possibilities. Share this information with the responsible person. If the person with AD is no longer able to live at home, the responsible person will be better able to carry out your wishes for long-term care.
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.
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 Alzheimerâ€™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 and 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.
Alzheimerâ€™s Disease Education and Referral (ADEAR) Center
P.O. Box 8250
Silver Spring, MD 20907-8250
The National Institute on Aging's 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 Alzheimer's disease. 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 Alzheimer's disease clinical trials database; the Alzheimer's Disease Library database; and more.
225 North Michigan Avenue, Floor 17
Chicago, IL 60601-7633
The Alzheimerâ€™s Association is a national nonprofit association with a network of local chapters that provide education and support for people diagnosed with Alzheimerâ€™s disease, their families, and caregivers. The Association also supports research on Alzheimer's.
Alzheimer's Foundation of America
322 Eighth Avenue, 7th Floor
New York, NY 10001
The Alzheimer's Foundation of America provides care and services to individuals confronting dementia and to their caregivers and families through member organizations dedicated to improving quality of life. Services include a toll-free hotline, consumer publications and other educational materials, and conferences and workshops.
3197 Trout Place Road
Cumming, GA 30041
This organization offers books, videos, a newsletter, and other products for caregivers of people with Alzheimer's disease.
American Red Cross
2025 E Street, NW
Washington, DC 20006
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 Parents
P.O. Box 167
Richboro, PA 18954
This nonprofit group provides information and materials for adult children caring for their older parents. Caregivers of people with Alzheimerâ€™s disease may also find this information helpful.
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 Alzheimer's information for families, caregivers, and health professionals.
Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
The Family Caregiver Alliance is a nonprofit organization that offers support services and information for people caring for adults with Alzheimer's, stroke, traumatic brain injuries, and other cognitive disorders.
Well Spouse Association
63 West Main Street, Suite H
Freehold, NJ 07728
This nonprofit organization gives support to spouses and partners of people who are chronically ill and/or disabled. It offers support groups and a newsletter.
The National Institute on Aging gratefully acknowledges the caring staff of the Alzheimerâ€™s Disease Research Center at the University of California, San Diego, and the Alzheimerâ€™s Association of San Diego, who shared their valuable advice, experience, and expertise to create this booklet.
Contact the ADEAR Center for additional Alzheimer's disease information, including the free publication Caring For a Person with Alzheimer's Disease: Your Easy-to-Use Guide from the National Institute on Aging.
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICESPUBLIC HEALTH SERVICE
National Institutes of HealthNational Institute on Aging
NIH Publication No. 02-5179