Expect the Unexpected

Sleep Problems

For the exhausted caregiver, sleep can't come too soon. For many people with AD, however, nighttime may be a difficult time. Many people with AD become restless, agitated, and irritable around dinnertime, often referred to as "sundowning" syndrome. 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.

Hallucinations and Delusions

As the disease progresses, a person with AD 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 cannot be dissuaded of. 

• 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.

Wandering 

Keeping the person 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 he or she 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.
• 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.

Driving

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.

Visiting the Doctor

It is important that the person with AD 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 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 a Person with AD 

Visitors are important to people with AD. They may not always remember who the visitors are, but just the human connection has value. Here are some ideas to share with someone who is planning to visit a person with AD. 

• Plan the visit at the time of the day when the person 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.

Choosing a Nursing Home

For many caregivers, there comes a point when they are no longer able to take care of their loved one at home. Choosing a residential care facility -- a nursing home or an assisted living facility -- is a big decision, and it can be hard to know where to start. 

• It's helpful to gather information about services and options before the need actually arises. This gives you time to explore fully all the possibilities before making a decision.
• Determine what facilities are in your area. Doctors, friends and relatives, hospital social workers, and religious organizations may be able to help you identify specific facilities.
• Make a list of questions you would like to ask the staff. Think about what is important to you, such as activity programs, transportation, or special units for people with AD.
• Contact the places that interest you and make an appointment to visit. Talk to the administration, nursing staff, and residents.
• Observe the way the facility runs and how residents are treated. You may want to drop by again unannounced to see if your impressions are the same.
• Find out what kinds of programs and services are offered for people with AD and their families. Ask about staff training in dementia care, and check to see what the policy is about family participation in planning patient care.
• Check on room availability, cost and method of payment, and participation in Medicare or Medicaid. You may want to place your name on a waiting list even if you are not ready to make an immediate decision about long-term care.
• Once you have made a decision, be sure you understand the terms of the contract and financial agreement. You may want to have a lawyer review the documents with you before signing.
• Moving is a big change for both the person with AD and the caregiver. A social worker may be able to help you plan for and adjust to the move. It is important to have support during this difficult transition.

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