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Why Aren't Patients with Alzheimer's Disease Getting a Timely Diagnosis?

Posted by on 5/20/2015 to Dementia Education

Was the dementia diagnosis revealed - or not?

In our medical model dominated country, sharing a dementia diagnosis when it is very first discovered by the physician is imperative, as the physician is the trusted train physicians.pngsource and where all subsequent services flow from. So it was disconcerting to read from the Alzheimer's Disease Facts and Figures 2015 report from the Alzheimer's Association that "only 45% of people with Alzheimer's disease or their caregivers say they were told the diagnosis by their doctor." In contrast, patients of the 4 most common cancers - breast, colorectal, lung, and prostate - have a 90% rate of disclosure.

Truly, the low rate of disclosure did not surprise me. In my many years as an occupational therapist, I have more than once been left in a difficult and uncomfortable situation where I knew a patient had an Alzheimer's or dementia diagnosis per their medical record, but family was unaware. It is hard to educate and make recommendations around this diagnosis when involved parties are not even aware of its presence. The Alzheimer's Disease Facts and Figures Report lists these reasons of why physicians may have not disclosed the Alzheimer's diagnosis:

  • Not wanting to cause emotional distress
  • Uncertainty if the diagnosis was accurate
  • Lack of available support services and effective treatments
  • The stigma around Alzheimer's disease

It is true that improvements in dementia care are needed: better diagnostic tools and/or referral systems to specialists; more support services with easy accessibility; and increased awareness and conversations about Alzheimer's disease among both professionals and the public at large. But making improvements at the point where the dementia 'journey' begins - with the primary care physician - is a key piece to the flow of the other parts.

Are physicians being trained in dementia care?

It was shared at the recent American Society on Aging Conference, that 85% of medical residents who graduate this year will not have taken a single credit in geriatric care. Training in the different needs of geriatric care is so important. And that training must include dementia care, as one of the biggest risk factors of getting Alzheimer's disease or other dementia is advancing age. Now is the time to ensure new physicians - and current ones - are trained in promptly addressing Alzheimer's disease. After all, knowledge is power and patients and families dealing with Alzheimer's need all the power they can get.

How was the diagnosis experience for the person with dementia you know?



Date: 8/15/2015
I love that you shared this post. I find that Dementia/ Alzheimer's is so under-diagnosed and not addressed properly time and again in my clinical practice. Why is this so? We can address lung CA, but not discuss with the patient/ family a dementia Dx. It does not make sense. I would agree with the finding that MDs are not provided enough training in the disease. Early diagnosis and support is critical. I love your site and your passion for sharing knowledge about such an underserved diagnosis.
Monica from MindStart
Date: 8/17/2015
Thanks Jill for your kind words and support of MindStart. Together, little things that we each do, can add up to big differences.
Date: 10/12/2016
Great article and thanks for taking the time to shine a light on the issue. One other important point is time - most visits are cut short and medical practices so tightly scheduled that there is no time for the lengthy conversation this diagnosis requires. Good practice guidelines suggest no more than 30% geriatric patients in the practice, due to Medicare limitations. We need supportive systems to improve this situation. And we are in desparate need of more geriatricians who are skilled at diagnosing, disclosing and treating them many kinds of dementia.
Sharon Tabberer
Date: 10/14/2016
It is really interesting to hear of this from the US perspective. In the UK we did a piece of work that picked up on barriers in terms of an early diagnosis which focussed on the person seeking the diagnosis. http://intl-dem.sagepub.com/content/early/2011/07/05/1471301211409375?patientinform-links=yes&legid=spdem;1471301211409375v1
Kelly Lindell
Date: 10/18/2016
Hi Monica! I am facilitating a support group for the Alz. Assoc. and have heard the experiences of many who are frustrated with the diagnosis and support they get through the medical profession and this certainly highlights a key reason why. What do you feel we - and the families affected can do to try to improve this in the future? We feel somewhat helpless to affect "the system".

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