Don’t Be Afraid to Ask Post-Diagnosis Questions

Eric J. Hall Health Guide
  • It's a new year, and that means that thousands upon thousands of Americans are expected to be diagnosed with Alzheimer's disease during the next 12 months.


    Just this week, since 2008 began, staff members at the Alzheimer's Foundation of America (AFA) have been personally touched. One person's neighbor approached her to ask for guidance - his mom was just diagnosed and he felt he should exploring the option of moving her back north. A friend of the sister of another colleague had just come from the doctor, devastated by the news that Alzheimer's was cited as the cause of her mother's memory problems.

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    AFA's social services team continually receives emails and hot line calls from family members whose loved ones are exhibiting warning signs of Alzheimer's disease or have been recently diagnosed. At this time of year, the queries increase, after relatives notice symptoms at holiday gatherings. Our social workers, as always, encourage them to have their loved ones follow up with a thorough medical examination. Unfortunately, the folks concerned about their loved ones could hear a similar diagnosis for themselves down the road.


    There is no doubt that news like this is heartbreaking-and life-changing for the individual with the disease and his or her family.


    I can't say often enough that quality of life is precious in the absence of a cure. To obtain this higher quality of life, education, appropriate treatment and care, and support services are critical. A lot of it boils down to asking the right questions.


    One of the major components is effective communication between a healthcare professional and the individual with the disease and his or her caregiver. This process should begin at the very point of diagnosis and continue throughout the progression of the disease. Other members of the care team also need to be in touch.


    AFA surveys have shown that caregivers of individuals with Alzheimer's disease look to their healthcare professionals for information and resources, and note that they feel that they need more information about Alzheimer's disease at the time of diagnosis. Caregivers also look to community resources to assist in the process.


    Often, we may feel that the doctor or other professional will tell us what we need to know-so there is no need to ask questions. But you do need to ask questions. You do need to get answers.


    What should be at the top of your list of questions? You'll want to know if other tests should be taken and if a specialist, such as a neurologist or geriatrician, should be seen. If one treatment is suggested, ask about other medications and the pros/cons and side effects of each of the four widely-prescribed medications. In addition, many other drugs are in clinical trials: Should you consider participating in one? How do you find clinical trials? What are the benefits and drawbacks?


    Besides the treatment questions, it is important to communicate with doctors about care issues. Should lifestyle be adapted in any way? This is a critical question, given growing research that shows that mental and physical exercise, proper nutrition and stress management can help delay progression of symptoms of Alzheimer's disease.


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    What community resources are available-for the person with the disease and the family caregivers? Again, research shows that caregiver support can boost physical and mental well-being and help delay placement of loved ones in long-term care settings.


    The dialogue needs to continue with ongoing medical visits. It's best to be prepared by keeping a log of any changes you observe and writing down questions and concerns in advance. Ask for clarification if you don't understand a doctor's explanation or feel instructions are not realistic. And find out about additional community support services as needs continually change.


    What families deserve most are answers to their questions. From the moment that a diagnosis is given, it is the time to start asking.

Published On: January 06, 2008