The 10 Best Questions for Living with Alzheimer’s

July 27, 2011

Ask the Experts: Dr. Dede Bonner

Question: My father was just diagnosed with Alzheimer’s disease. Does he now need to see a specialist? If so, what questions do we need to ask on our first visit?

Dr. Bonner answers: When a person is initially diagnosed with Alzheimer’s disease, the most important first question to ask is, “How sure are you that this is really Alzheimer’s disease?” This question may be the most important question you ever ask in your life.

Many people never think to question a diagnosis of Alzheimer’s disease. If your doctor tells you it’s Alzheimer’s disease, it probably is. But the importance of this Best Question can’t be emphasized enough. No matter what, be sure to ask this question. An estimated 10 percent of all Alzheimer’s diagnoses are incorrect even with today’s improved diagnostic tests.

You have every right to know as much as possible about how this diagnosis was made. Keep in mind that you aren’t necessarily challenging your doctor’s personal wisdom or credentials. A good doctor will expect and welcome your questions, especially since total certainty with Alzheimer’s diagnoses is impossible until an after-death autopsy.

The Question Doctor advises that you phrase this question, “How sure…” rather than “Are you sure…” When you ask a yes/no question like “Are you sure?” you don’t get as much information from your doctor as if you had phrased it more open-ended like “How sure?”

The decision to see a specialist is a personal one. Keep in mind that a diagnosis made by a general practitioner for an early stage of Alzheimer’s is the most uncertain type of diagnosis. My book also includes ways to find a specialist and what to ask when seeking a second opinion.

Question: My husband and I have been married for many years, and we’ve always been close—like best friends. But now that he has Alzheimer’s, I feel more like his mother than his partner. I love him and I’d do anything for him, but this change in our relationship has made me quite depressed. Is this just a stage for spousal caregivers? Should I see a doctor about my depression or can I expect it to pass?

Dr. Bonner answers: Your decision about how to handle your depression depends in part on your honest responses to the following:

  1. Can your husband still carry on normal conversations most of the time?
  2. What stage is his Alzheimer’s disease and how rapidly is he declining?
  3. Do you feel comfortable telling your husband about your depression and other feelings?
  4. Do you have a history of depression prior to having to deal with his Alzheimer’s?
  5. Can you find another satisfying outlet for expressing your feelings, like close family members or friends?
  6. Are you interested in joining a support group for the caregivers of Alzheimer’s patients?
  7. Is there an Alzheimer’s support group located near where you live?
  8. Can you leave your husband alone or make arrangements to attend support group meetings?
  9. Would an online support group be more desirable for you? (generally less travel and time involved)
  10. Do you prefer to share your feelings in the privacy of a trained therapist or counselor who will focus just on your needs rather than in a support group discussion where most of the others are also talking?

Question: My mom’s Alzheimer’s disease seems to be progressing. I worry about her because she lives out of state, and my father, who has declining health, isn’t able to properly care for her. How can I ensure she is monitored and cared for? Should I try to move my parents in with me? Should I place my mom in a nursing home? I need to know what the best options are for long-distance families dealing with Alzheimer’s.

Dr. Bonner answers: In order for a long distance adult son or daughter to know how to handle their failing parent, you first need to ask yourself several Best Questions. A very important preliminary Best Question is, “How safe are my parents if they continue to live in their home without assistance?” Consider especially home stairs that could cause falls, possible fire hazards, and whether or not your mom wanders or has other difficult behaviors. Many long distance children seek the services of an occupational therapist, physical therapist, or geriatric care manager to assess and monitor their parents’ home situation.

If you are trying to decide whether or not your mom should move in with you, ask yourself, “How will this affect my life, finances, family, and other relationships?” and “What unresolved conflicts are there between me and my mother?” and “What happens if Mom moves in, but it doesn’t work out?”

The decision to place a parent in a nursing home is often very painful. Before taking this big step, consider other alternatives. Ask yourself, “What other sources of support could care for mom?” (adult day care, home services, visiting nurses, or nearby family members) and “Is there a special person I can count on to look after my parents?” (either a paid geriatric care manager or a relative).

Question: My husband is in the early stages of Alzheimer’s and still thinks it’s fine for him to drive. The idea of him behind the wheel makes me extremely anxious. Whenever we go somewhere together, I drive. However, he often heads out on his own. How do we know when it’s time for him to stop driving? I want to make sure it’s earlier rather than later as I don’t want him hurting himself or others. This is a sensitive issue, though. How should I approach it?

Dr. Bonner answers: It isn’t just Alzheimer’s patients who ultimately face driving retirement. It happens to everyone. But this doesn’t make it any easier for families with a loved one in denial about his progressing Alzheimer’s disease and the need to surrender the car keys.

Even the experts can’t agree. The Alzheimer’s Association recommends a case-by-case decision, while the American Academy of Neurologists suggests no further driving for people with Alzheimer’s at any stage. Seek your doctor’s advice first to fully understand your husband’s current mental and physical limitations.

Then to assess your husband’s driving capability, ask yourself, “Is he increasingly nervous behind the wheel?” and “Is he having frequent close calls in traffic?” Another very revealing question is, “Does he get lost in his own neighborhood?”

When it’s time for the “Big Talk” plan it in advance. Let your husband be involved in the decision to quit or reduce his driving by asking him Best Questions such as, “Are there other ways you can get around without driving?” and “Which friends can provide rides when you need them?”

There are more Best Questions in my book to assess an elderly person’s driving skills and to ask the driver with Alzheimer’s during a family meeting.

For More Information

Dr. Dede Bonner’s book, The 10 Best Questions™ for Living with Alzheimer’s: The Script You Need to Take Control of Your Health, is available wherever books are sold.

Do you have a question you would like to ask the experts at the Fisher Center for Alzheimer’s Research Foundation? If so, please call 1-800-ALZINFO, visit ALZinfo.org, send surface mail to Fisher Center for Alzheimer’s Research Foundation, West 46th Street & 12th Avenue, New York, NY 10036, or e-mail info@alzinfo.org.

Source: www.ALZinfo.org. Author: Dr. Dede Bonner and ALZinfo.org, Preserving Your Memory: The Magazine of Health and Hope; Winter 2008.


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