When you are taking care of a person with Alzheimer's disease, every day brings new challenges. Just when you think you've got the hang of it, the disease progresses, and new patterns of behavior start to surface. Although everyone progresses through the stages of Alzheimer's disease differently, inevitably those diagnosed become less able to perform once-familiar tasks and over time will rely more heavily on the assistance of caregivers.
Here are some tips for coping with some of the most common challenges that people caring for a loved one with Alzheimer's face.
Trying to communicate with an elderly person who has Alzheimer's Disease or dementia can be a challenge. Both understanding and being understood may be difficult.
- Choose simple words and short sentences and use a gentle, calm tone of voice.
Avoid talking to the person with AD 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.
- 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 Disease or dementia 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.
As the disease progresses, many elderly people AD begin to experience incontinence, or the inability to control their bladder and/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. Here are some tips for caregivers:
- 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.
Hallucinations and Delusions
As the disease progresses, an elderly parent with Alzheimer's Disease or dementia 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 from which the person cannot be dissuaded.
- Sometimes hallucinations and delusions are a sign of a 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, and provide reassurance and comfort.
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 AD may not be able to distinguish television programming from reality.
- Make sure the person is safe and does not have access to anything he or she could use to harm anyone.
Sudden changes in mood and behavior are startling and disturbing. A parent who has a history of gentle behavior, excellent etiquette and intellectual speaking patterns may be horrified to find her mother issuing expletives or making rude and hurtful comments on a daily basis when agitated.
One of the biggest challenges is dealing with outbursts of agitation and aggression. The key is finding out what is causing the outburst.
When dealing with an outburst, remain calm, and understand that the outburst may be caused by frustration or a lack of understanding. Using one command or direction at a time often makes such tasks easier for someone suffering from Alzheimer's to understand.
Dismissing aggression as a normal behavior associated with Alzheimer's doesn't enable the caregiver to fix whatever is causing the outburst. Why do they seem to get upset? What causes it? More on managing outbursts.
Keeping your aging parent safe is one of the most important aspects of caregiving. Some people with AD have a tendency to wander away from their home or their caregiver. Knowing what to do to limit wandering can protect a person from becoming 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 (see "For More Information" to contact the Association). If the person gets lost and is unable to communicate adequately, identification will alert others to the person's medical condition. Notify neighbors and local authorities in advance that the person has a tendency to wander.
- Check with your local police department or EMTs to see if there is a program in your area for tracking and locating wanderers.
- Keep a recent photograph or videotape of the person with AD 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.
- Be sure to secure or put away anything that could cause danger, both inside and outside the house.
Alzheimer's Bathing, Dressing and Eating
For an elder who has Alzheimer's Disease or dementia, bathing and getting dressed presents a series of challenges.
While some elderly people with Alzheimer's Disease or dementia don't mind bathing, for others it is a frightening, confusing experience. 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 AD. Be gentle and respectful. Be patient and calm.
- Tell your elderly mom or dad 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.
Some of the challenges that a person with Alzheimer's disease has to deal with include: 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 your elderly parent get dressed at the same time each day so he or she will come to expect it as part of the daily routine.
- Encourage your aging mom or dad to dress himself or herself to whatever degree possible. Plan to allow extra time so there is no pressure or rush.
- Allow your senior parent to choose from a limited selection of outfits. If he or she has a favorite outfit, consider buying several identical sets.
- Arrange the clothes in the order they are to be put on to help the person move through the process.
- Provide 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 can be a challenge. Some elderly people with AD want to eat all the time, while others have to be encouraged to maintain a good diet.
- View mealtimes as opportunities for social interaction and success for the person with Alzheimer's Disease or dementia. 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.
Sundowner's and Alzheimer's-Related Sleep Problems
Sadness, agitation, fear, pacing, rocking and mood changes that occur around sunset are known as Sundowner's Syndrome. To manage sundowning:
- Establish a routine by trying to do the same things every evening at about the same time, so the person with Alzheimer's knows what to expect.
- Create a quiet setting by preventing excessive noise and provide an area of privacy away from family activity and other distractions.
- Structure afternoon activities and entertainment later in the day to re-direct the person's anxiety.
- Use distractions if you see agitation starting, try to re-direct the person's attention to a non-threatening object or person.
Sleep problems are another problem among people who have Alzheimer's disease.
For the exhausted caregiver, sleep can't come too soon. For many aging parents with Alzheimer's Disease or dementia, however, the approach of nighttime may be a difficult time. Getting the person to go to bed and stay there may require some advance planning.
- Encourage exercise during the day and 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 more physically demanding activities earlier in the day. For example, bathing could be earlier in the morning, or large family meals could be 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.
- Restrict access to caffeine late in the day.
- Use night lights in the bedroom, hall, and bathroom if the darkness is frightening or disorienting.
Caregivers of elderly parents with AD often have to look at their homes through new eyes to identify and correct safety risks. Creating a safe environment can prevent many stressful and dangerous situations.
- 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 out.
- 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.
Making the decision that a person with AD 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.
- 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."
- 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.
What to do all day? It is a common question for family caregivers who are taking care of an aging parent with Alzheimer's Disease or dementia. Finding activities that your elderly parent with Alzheimer's Disease or dementia 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 AD 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 AD, as well as an opportunity for caregivers to gain temporary relief from tasks associated with caregiving. Transportation and meals often are provided.
- Incorporating exercise into the daily routine has benefits for both the person with AD and the caregiver. Not only can it improve health, but it also can provide a meaningful activity for both of you to share.
- Think about what kind of physical activities you both enjoy, perhaps walking, swimming, tennis, dancing, or gardening. Determine the time of day and place where this type of activity would work best.
- Be realistic in your expectations. Build slowly, perhaps just starting with a short walk around the yard, for example, before progressing to a walk around the block.
- Be aware of any discomfort or signs of overexertion. Talk to the person's doctor if this happens.
- Allow as much independence as possible, even if it means a less-than-perfect garden or a scoreless tennis match.
- See what kinds of exercise programs are available in your area. Senior centers may have group programs for people who enjoy exercising with others. Local malls often have walking clubs and provide a place to exercise when the weather is bad.
- Encourage physical activities. Spend time outside when the weather permits. Exercise often helps everyone sleep better.
Doctors Visits for People with Alzheimer's
Advance planning can help the trip to the doctor's office go more smoothly. It can also help when family and friends are visiting a person with Alzheimer's disease.
Visiting the Doctor
It is important that the person with AD receive regular medical care. 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 is confused. If there is something they might be able to do to make the visit go more smoothly, ask.
- 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 activity that he or she may enjoy.
- 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.
Visiting an Elder with Alzheimer's Disease or dementia
Visitors are important to people with Alzheimer's or dementia. They may not always remember who the visitors are, but just the human connection has value. Here are some ideas for caregivers or family members who are reluctant to visit a nursing home.
- Plan the visit at the time of the day when the elder is at his or her best. Consider bringing along some kind of 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.
- If the person is confused, don't argue. Respond to the feelings you hear being communicated, and distract the person to a different topic if necessary.
- If the person doesn't recognize you, is unkind, or responds angrily, remember not to take it personally. He or she is reacting out of confusion.