When an elderly parent is diagnosed with Alzheimer's disease, some caregivers make the decision to care for their parent at home. This is a difficult and potentially overwhelming task. Each day brings new challenges as you cope with changing levels of ability and new patterns of behavior.
Tasks that were second nature in the past, such as dressing, bathing and eating become increasingly difficult to manage. On top of that, behaviors common in people with Alzheimer's, such as wandering and hallucinations, add to the responsibility of caring for an elderly parent with Alzheimer's.
Having a plan for getting through the day can help you cope. Many caregivers have found it helpful to use strategies for dealing with difficult behaviors and stressful situations. You will find that some of these tips work well for you, while others may not. The only way to find out is through trial and error. Each person with Alzheimer's is unique and will respond differently, and each person changes over the course of the disease.
Look for Patterns
Study your day to see if you can develop a routine that makes things go more smoothly. If there are times of day when the person with Alzheimer's is less confused or more cooperative, plan your routine to make the most of those moments. Keep in mind that the way the person functions may change from day to day, so try to be flexible and adapt your routine as needed.
Communication
Trying to communicate with a person who has Alzheimer's disease can be a challenge. Both understanding and being understood may be difficult. Here are some suggestions:
- Choose simple words and short sentences and use a gentle, calm tone of voice.
- Avoid talking to the person with Alzheimer's like a baby or talking about the person as if he or she weren't there.
- Minimize distractions and noise—such as the television or radio—to help the person focus on what you are saying.
- Make eye contact and call the person by name, making sure you have his or her attention before speaking.
- Allow enough time for a response. Be careful not to interrupt.
- If the person with Alzheimer's is struggling to find a word or communicate a thought, gently try to provide the word he or she is looking for.
- Try to frame questions and instructions in a positive way.
- Be open to the person's concerns, even if he or she is hard to understand.
Bathing
Some people with Alzheimer's disease don't mind bathing. For others it is a frightening and confusing experience. Ensuring a person with Alzheimer's takes a bath can be challenging.
The elder may think they have just showered, but in reality that was last week. Or, they can become confused when they begin the process or become afraid of the shower or bath because they don't know what it's all about or they think they will get hurt. Confusion and lack of understanding are bound to lead to fear. Advance planning can help make bath time better for both of you.
- Plan the bath or shower for the time of day when the person is most calm and agreeable. Be consistent. Try to develop a routine.
- Respect the fact that bathing is scary and uncomfortable for some people with Alzheimer's. Be gentle and respectful. Be patient and calm.
- Tell the person what you are going to do, step by step, and allow him or her to do as much as possible.
- Prepare in advance. Make sure you have everything you need ready and in the bathroom before beginning. Draw the bath ahead of time.
- Be sensitive to the temperature. Warm up the room beforehand if necessary and keep extra towels and a robe nearby. Test the water temperature before beginning the bath or shower.
- Minimize safety risks by using a handheld showerhead, shower bench, grab bars, and nonskid bath mats. Never leave the person alone in the bath or shower.
- Try a sponge bath. Bathing may not be necessary every day. A sponge bath can be effective between showers or baths.
Dressing
For someone who has Alzheimer's, getting dressed presents a series of challenges: choosing what to wear, getting some clothes off and other clothes on, and struggling with buttons and zippers. Minimizing the challenges may make a difference.
- Try to have the person get dressed at the same time each day so he or she will come to expect it as part of the daily routine.
- Encourage the person to dress himself or herself to whatever degree possible. Plan to allow extra time so there is no pressure or rush.
- Allow the person to choose from a limited selection of outfits. If he or she has a favorite outfit, consider buying several identical sets.
- Store some clothes in another room to reduce the number of choices. Keep only one or two outfits in the closet or dresser.
- Arrange the clothes in the order they are to be put on to help the person move through the process.
- Hand the person one item at a time or give clear, step-by-step instructions if the person needs prompting.
- Choose clothing that is comfortable, easy to get on and off, and easy to care for. Elastic waists and Velcro® enclosures minimize struggles with buttons and zippers.
Eating
Some people with Alzheimer's disease want to eat all the time, while others have to be encouraged.
- View mealtimes as opportunities for social interaction. Try to be patient and avoid rushing, and be sensitive to confusion and anxiety.
- Aim for a quiet, calm, reassuring mealtime atmosphere by limiting noise and other distractions.
- Maintain familiar mealtime routines, but adapt to the person's changing needs.
- Give the person food choices, but limit the number of choices. Try to offer appealing foods that have familiar flavors, varied textures, and different colors.
- Serve small portions or several small meals throughout the day. Make healthy snacks, finger foods, and shakes available. In the earlier stages of dementia, be aware of the possibility of overeating.
- Choose dishes and eating tools that promote independence. If the person has trouble using utensils, use a bowl instead of a plate, or offer utensils with large or built-up handles. Use straws or cups with lids to make drinking easier.
- Encourage the person to drink plenty of fluids throughout the day to avoid dehydration.
As the disease progresses, be aware of the increased risk of choking because of chewing and swallowing problems. - Maintain routine dental checkups and daily oral health care to keep the mouth and teeth healthy.
Activities
Finding activities that the person with Alzheimer's disease can do and is interested in can be a challenge. Building on current skills generally works better than trying to teach something new.
- Don't expect too much. Simple activities often are best, especially when they use current abilities.
- Help the person get started on an activity. Break the activity down into small steps and praise the person for each step he or she completes.
- Watch for signs of agitation or frustration with an activity. Gently help or distract the person to something else.
- Incorporate activities the person seems to enjoy into your daily routine and try to do them at a similar time each day.
- Try to include the person with Alzheimer's in the entire activity process. For instance, at mealtimes, encourage the person to help prepare the food, set the table, pull out the chairs, or put away the dishes. This can help maintain functional skills, enhance feelings of personal control, and make good use of time.
- Take advantage of adult day services, which provide various activities for the person with Alzheimer's, as well as an opportunity for caregivers to gain temporary relief from tasks associated with caregiving. Transportation and meals often are provided.
Incontinence
As the disease progresses, many people with Alzheimer's begin to experience incontinence, or the inability to control their bladder or bowels. Incontinence can be upsetting to the person and difficult for the caregiver. Sometimes incontinence is due to physical illness, so be sure to discuss it with the person's doctor.
- Have a routine for taking the person to the bathroom and stick to it as closely as possible. For example, take the person to the bathroom every 3 hours or so during the day. Don't wait for the person to ask.
- Watch for signs that the person may have to go to the bathroom, such as restlessness or pulling at clothes. Respond quickly.
- Be understanding when accidents occur. Stay calm and reassure the person if he or she is upset. Try to keep track of when accidents happen to help plan ways to avoid them.
To help prevent nighttime accidents, limit certain types of fluids—such as those with caffeine—in the evening. - If you are going to be out with the person, plan ahead. Know where restrooms are located, and have the person wear simple, easy-to-remove clothing. Take an extra set of clothing along in case of an accident.
Sundowning and Sleep Problems
Many people with Alzheimer's become restless, agitated, and irritable before or during twilight and sometimes lasting until dawn. This is referred to as "sundowning" or "Sundowners" syndrome.
These symptoms can be dangerous, both for the person with the Syndrome and for anyone around them.
Maintain a routine at sundown, which tends to alleviate the severe anxiety experienced by those sundowning. That includes trying to replicate a loved one's routine from a lifetime of living on their own as they transition into living in your home. Even posting a schedule that includes simple tasks such as "putting on pajamas" can be helpful.
Even after sundown, getting the person to go to bed and stay there may require some advance planning, because Sundowner's Syndrome can last until dawn. Here are some strategies to try:
- Encourage exercise during the day
- Limit daytime napping, but make sure that the person gets adequate rest during the day because fatigue can increase the likelihood of late afternoon restlessness.
- Try to schedule physically demanding activities earlier in the day. For example, bathing could be done in the morning, or the largest family meal could be served at midday.
- Set a quiet, peaceful tone in the evening to encourage sleep. Keep the lights dim, eliminate loud noises, even play soothing music if the person seems to enjoy it.
- Try to keep bedtime at a similar time each evening. Developing a bedtime routine may help.
- Limit caffeine.
- Use night-lights in the bedroom, hall, and bathroom if the darkness is frightening or disorienting.
- Take precautions to provide a safe space for your elderly parent to sleep, so you can get a solid night's rest, even if he or she stays awake and tries to wander.
Hallucinations and Delusions
As the disease progresses, a person with Alzheimer's disease may experience hallucinations and/or delusions. Hallucinations are when the person sees, hears, smells, tastes, or feels something that is not there. Delusions are false beliefs that the person thinks are real.
- Sometimes hallucinations and delusions are signs of physical illness. Keep track of what the person is experiencing and discuss it with the doctor.
- Avoid arguing with the person about what he or she sees or hears. Try to respond to the feelings he or she is expressing. Comfort the person if he or she is afraid.
Try to distract the person to another topic or activity. Sometimes moving to another room or going outside for a walk may help. - Turn off the television set when violent or disturbing programs are on. The person with Alzheimer's may not be able to distinguish television programs from reality.
- Make sure the person is safe and does not have access to anything he or she could use to harm anyone.
- Discuss with the doctor any illness the person has had or medicines he or she is taking. Sometimes an illness or medicine may cause hallucinations or delusions.
Wandering
Keeping the person safe is one of the most important aspects of caregiving. Some people with Alzheimer's disease have a tendency to wander away from their home or their caregiver. Knowing how to limit wandering can protect a person from getting lost.
Make sure that the person carries some kind of identification or wears a medical bracelet.
- Consider enrolling the person in the Alzheimer's Association Safe Return program if the program is available in your area. If the person gets lost and is unable to communicate adequately, identification will alert others to the person's medical condition.
- Another national program is Project Lifesaver, which works hand-in-hand with trained public safety agencies to find wanderers. Call your local law enforcement agency to see if its available in your area.
- Notify neighbors and local authorities in advance that the person has a tendency to wander.
- Keep a recent photograph or videotape of the person with Alzheimer's to assist police if the person becomes lost.
- Keep doors locked. Consider a keyed deadbolt or an additional lock up high or down low on the door. If the person can open a lock because it is familiar, a new latch or lock may help.
- Install an "announcing system" that chimes when the door opens.
Home Safety
Caregivers of people with Alzheimer's disease often have to look at their homes through new eyes to identify and correct safety risks. Creating a safe home environment can prevent many stressful and dangerous situations.
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.
- Install secure locks on all outside windows and doors, especially if the person is prone to wandering. Remove the locks on bathroom doors to prevent the person from accidentally locking himself or herself in.
- Use childproof latches on kitchen cabinets and anyplace where cleaning supplies or other chemicals are kept.
- Label medications and keep them locked up. Also make sure knives, lighters and matches, and guns are secured and out of reach.
- Keep the house free from clutter. Remove scatter rugs and anything else that might contribute to a fall.
- Make sure lighting is good both inside and outside the home.
- Be alert to and address kitchen-safety issues, such as the person forgetting to turn off the stove after cooking. Consider installing an automatic shut-off switch on the stove to prevent burns or fire.
- Be sure to secure or put away anything that could cause danger, both inside and outside the home.
- 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.
- Notify neighbors of the person'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.
Driving
Alzheimer's disease steals the skills needed for driving. Making the decision that a person with Alzheimer's is no longer safe to drive is difficult, and it needs to be communicated carefully and sensitively. Even though the person may be upset by the loss of independence, safety must be the priority. Be prepared to take away the keys.
Drivers with Alzheimer's may have trouble prioritizing visual cues. An irrelevant sight, such as a dog jumping behind a fence, may distract them, so they fail to notice important cues, such as brake lights or traffic signs.
A decline in visuospatial skills, which help drivers judge distances and predict upcoming traffic problems, plays a large role in making people with Alzheimer's unsafe drivers.
- Look for clues that safe driving is no longer possible, including getting lost in familiar places, driving too fast or too slow, disregarding traffic signs, or getting angry or confused.
- Be sensitive to the person's feelings about losing the ability to drive, but be firm in your request that he or she no longer do so. Be consistent—don't allow the person to drive on "good days" but forbid it on "bad days."
- When it's time to stop driving, your loved one with Alzheimer's may resist. Instead of arguing, provide other ways of getting around and maintaining routines.
- Ask the doctor to help. The person may view the doctor as an authority and be willing to stop driving. The doctor also can contact the Department of Motor Vehicles and request that the person be reevaluated.
- If necessary, take the car keys. If just having keys is important to the person, substitute a different set of keys.
- If all else fails, disable the car or move it to a location where the person cannot see it or gain access to it.
Visits From Family and Friends
Visitors are important to people with Alzheimer's. They may not always remember who the visitors are, but the human connection has value. Here are some ideas to share with someone who is planning to visit a person with the disease.
- Plan the visit for the time of day when the person with Alzheimer's is at his or her best.
- Consider bringing along an activity, such as something familiar to read or photo albums to look at, but be prepared to skip it if necessary.
- Be calm and quiet. Avoid using a loud tone of voice or talking to the person as if he or she were a child.
- Respect the person's personal space and don't get too close.
- Try to establish eye contact and call the person by name to get his or her attention.
Remind the person who you are if he or she doesn't seem to recognize you. - Don't argue if the person is confused. Respond to the feelings you hear being communicated, and distract the person to a different topic if necessary.
- Remember don't take it personally if the person doesn't recognize you, is unkind, or responds angrily. He or she is reacting out of confusion.
Doctor's Appointments
It is important that the person with Alzheimer's disease receive regular medical care. Advance planning can help the trip to the doctor's office go more smoothly.
- Try to schedule the appointment for the person's best time of day. Also, ask the office staff what time of day the office is least crowded.
- Let the office staff know in advance that this person may be confused because of Alzheimer's disease. Ask them for help to make the visit go smoothly.
- Don't tell the person about the appointment until the day of the visit or even shortly before it is time to go. Be positive and matter-of-fact.
- Bring along something for the person to eat and drink and any materials or activities that he or she enjoys.
- Have a friend or another family member go with you on the trip, so that one of you can be with the person while the other speaks with the doctor.
- Take a brief summary listing the person's medical history, primary care doctor, and current medications.