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Published on: March 27, 2016
by John C. Morris, MD, FAAN for Neurology Now:
After news of the diagnosis sinks in, consider these important questions.
As a neurologist specializing in Alzheimer’s disease and other dementia disorders for the past 30 years, I realize that the initial diagnosis of dementia can be devastating for patients and their families. Often, people need time to absorb the news and let the diagnosis “sink in.” I recommend that they talk to others who have faced similar news and also contact their nearest chapter of the Alzheimer’s Association, where they can find information, answers to questions, caregiver support, and other resources.
Because no two people with Alzheimer’s dementia are alike, everyone’s situation will be unique with its own particular set of questions. Moving forward after a diagnosis can be overwhelming, but professional help can be beneficial. Depending on the patient’s particular challenges, his or her health care team might include (in addition to the physician) a nurse or nurse practitioner, social worker, neuropsychologist, occupational therapist, and driving instructor.
Since it may be challenging and potentially expensive to assemble all these professionals, it makes sense to determine areas of greatest need. For example, an occupational therapist can evaluate whether it is safe and appropriate for a person with Alzheimer’s dementia to continue to live at home. A driving instructor may offer an on-the-road assessment of a patient’s ability to drive. Attorneys can help families navigate legal options, including establishing durable power of attorney, advance directives, and a last will and testament; estate planners can help assure that the patient’s finances and health wishes are in order.
To get the most out of meeting with your relative’s neurologist or physician, it helps to write your questions down in advance. Here are 10 questions that—from my side of the desk—I think are worth asking:
1. What is the difference, if any, between dementia and Alzheimer disease, and what exactly is Alzheimer disease?
2. What is the typical duration of the illness and how much deterioration can I expect in my loved one in the next year? Is it fatal?
3. Are there any approved medications for Alzheimer dementia and do they work? Is there anything we can do to slow the rate of progression, either through diet, cognitive activities, social engagement, or physical activity?
4. Are there any clinical trials or experimental therapies for which my family member may be eligible?
5. What is my risk and my siblings’ risk of inheriting the illness?
6. How certain is the diagnosis of Alzheimer’s disease? I’ve heard that the only way to know for sure is through a brain autopsy after death.
7. What are the stages of Alzheimer dementia and in what stage is my relative? What do I need to know about the stages as he or she progresses through them?
8. How do I know if my relative is safe to be at home alone?
9. Will my relative get lost if she or he goes out for a walk?
10. Is my relative capable of managing his or her finances? Cooking? Taking medications? Should my family member wear an ID bracelet?
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