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Diagnosis: Let’s look at what happens in practice

Posted in Dementia Awareness Week, Diagnosis, and Research

Getting a diagnosis of a dementia can be a very complicated process. It not only involves the patient themselves, but family members or friends, a number of different health professionals, and various assessments and medical tests. If a person is experiencing symptoms of a less common form of dementia, is under the age of 65, or isn’t a native language speaker the process can be even more challenging.

This week the Alzheimer’s Society, which provides helpful information about what people should expect when getting diagnosed is encouraging people who are worried about dementia to confront dementia directly. The NHS also offers information about getting a dementia diagnosis. The NHS says that: “Unless you decide otherwise, your doctor or a member of their team should explain to you and your family:

  • the type of dementia you have, or if it is not clear, what the plan to investigate further will entail; sometimes, despite investigations, a diagnosis may not be clear, in which case the doctors will review you again after a period of time to reassess you
  • details about symptoms and how the illness might develop
  • appropriate treatments that you might be offered
  • care and support services in your area
  • support groups and voluntary organisations for people with dementia and their families and carers
  • advocacy services
  • where you can find financial and legal advice”

But what happens in practice?

Based on the careful analysis of video-recordings of real life conversations during diagnostic appointments in Britain and in Sweden, our research has shown that:

  • Sometimes the words ‘dementia’ or ‘Alzheimer’s disease’ don’t need to be used for a diagnosis to be communicated.
  • Sometimes using the term ‘Alzheimer’s disease’ doesn’t help the patient understand their symptoms.
  • When interpreters are needed during assessments (which may not translate well into different languages) this can mean assessments are more demanding for patients and clinicians.
  • When interpreters aren’t trained in neuropsychological assessment this may play out in the interaction, and effect the outcome of the test.
  • Formal tests are not the only way of diagnosing dementia. In fact, having a conversation with a person with memory problems can reveal important information about their diagnosis.

We think that looking closely at what actually happens during diagnosis is a good way to understand not just the process, but also what types of communication might work best for which people. Getting a diagnosis has been likened to a “toxic dementia prescription”. By researching what actually happens in practice there is the potential to improve the experiences of all involved.

Elizabeth Peel, Charlotta Plejert & Danielle Jones

@profpeel @DementiaCRN

 

References

Jones, D., Drew, P., Elsey, C., Blackburn, D., Wakefield, S., Harkness, K. & Reuber, M. (2016) Conversational assessment in memory clinic encounters: interactional profiling for differentiating dementia from functional memory disorders. Aging & Mental Health, 20(5): 500-509.

Peel, E. (2015) Diagnostic communication in the memory clinic: A conversation analytic perspective. Aging & Mental Health 19 (12): 1123-1130.

Plejert, C., Antelius, E., Yazdanpanah, M. & Nielsen, T. R. (2015) There’s a letter called ef. On challenges and repair in interpreter-mediated tests of cognitive functioning in dementia evaluations: A case study. Journal of Cross-Cultural Gerontology, 30 (2): 163-187.

Plejert, C., Jones, D. & Peel, E. (forthcoming) Pathways to dementia and diagnostic practices: Conversation Analytical perspectives. In In L-C. Hydén & E. Antelius (Eds.) Life with Dementia: Relations, Responses and Agency in Everyday Life. London: Palgrave Macmillan.

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3 Comments

  1. Mike Parish
    Mike Parish

    Interesting article. My partners diagnosis is on-going after more than18 months mainly because of difficulties in determine if the dementia is or not related to HIV and the effects of HIV medication issues in the brain. As a gay couple (and as his cater) I feel, rightly or wrongly somewhat isolated from normal support services especially as he is included in the young onset dementia bracket. I’d love some support or happy to contribute to others going through the same process as us.

    Mike

    May 24, 2016
    • Thanks for commenting Mike. I can understand why as a younger gay couple you’re feeling isolated. Have you contacted Young Dementia UK? They may be able to provide some support. I wonder too whether HIV charities might be able to offer help or signpost you; there must be other gay couples in your situation out there.

      May 24, 2016
      • Mike Parish
        Mike Parish

        Elizabeth many thanks for your reply. I have some leads which I am following in including a young dementia group at my local hospital. Interestingly at hospital which is one of the major south London hospitals plus the HIV consultant for my partner aren’t able to answer some of these issues to do with HIV related neurocognitive problems. It appears still to be a very rare condition. Indeed there are sparse drug or cognitive therapies available but I am still working on it and will report back when I make any progress. As you there must be other people in my position but I can’t find any presents online of people having these difficulties or sharing their problems.

        Mike

        June 8, 2016

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