Supplement

Alzheimer's Disease: A Caregiver's Guide, Part 1

Caring for a person with alzheimer's disease (ad) at home is a difficult task and can become overwhelming at times. One of the biggest struggles caregivers face is dealing with the difficult behaviors of the person they are caring for. Many caregivers have found it helpful to use strategies for dealing with difficult behaviors and stressful situations. Following are some suggestions to consider when faced with difficult aspects of caring for a person with AD.

Dealing with the Diagnosis

Finding out that a loved one has Alzheimer's disease can be stressful, frightening, and overwhelming. As you begin to take stock of the situation, here are some tips that may help:

  • Ask the doctor any questions you have about AD. Find out what treatments might work best to alleviate symptoms or address behavior problems.
  • Contact organizations such as the Alzheimer's Association for more information about the disease, treatment options, and caregiving resources. Some community groups may offer classes to teach caregiving, problem-solving, and management skills.
  • Find a support group where you can share your feelings and concerns. Members of support groups often have helpful ideas or know of useful resources based on their own experiences. On-line support groups make it possible for caregivers to receive support without having to leave home.
  • 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 AD is less confused or more cooperative, plan your routine to make the most of those moments. The way the person functions may change from day to day, so try to be flexible and adapt your routine as needed.
  • Consider using adult day care or respite services to ease the day-to-day demands of caregiving. These services allow you to have a break while knowing that the person with AD is being well cared for.
  • Begin to plan for the future. This may include getting financial and legal documents in order, investigating long-term care options, and determining what services are covered by health insurance and Medicare.

Communication

Trying to communicate with a person who has AD 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. Try not to interrupt.
  • If the person with AD is struggling to find a word or communicate a thought, gently try to provide the word he or she is looking for.
  • Frame questions and instructions in a positive way.

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.

Coping with Holidays

Holidays are bittersweet for many AD caregivers. The happy memories of the past contrast with the difficulties of the present, and extra demands on time and energy can seem overwhelming. Finding a balance between rest and activity can help.

  • Keep or adapt family traditions that are important to you. Include the person with AD as much as possible.
  • Recognize that things will be different, and have realistic expectations about what you can do.
  • Encourage friends and family to visit. Limit the number of visitors at one time, and try to schedule visits during the time of day when the person is at his or her best.
  • Avoid crowds, changes in routine, and strange surroundings that may cause confusion or agitation.
  • Do your best to enjoy yourself. Try to find time for the holiday things you like to do, even if it means asking a friend or family member to spend time with the person while you are out.
  • At larger gatherings such as weddings or family reunions, try to have a space available where the person can rest, be by themselves, or spend some time with a smaller number of people, if needed.

Source: National Health Institutes, National Institute on Aging. Available at: www.nia.nih.gov/Alzheimers/Caregiving/HomeAndFamily/. Accessed May 17, 2006.