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Right of the field

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approaches to dementia care, research

I recently attended an international research workshop that aimed to elicit the views of attending ‘experts’ in the field of dementia research and care.  The focus of the workshop was to explore methodology that examined the receptivity of ‘early diagnosis of Alzheimer’s disease’ across various stakeholders; researchers, clinicians, family carers, advocacy agencies for the person with dementia and business sectors.

The opening session presented the context of the trajectory of Alzheimer’s disease (AD) from the range of known bio markers, through the prodromal or pre-clinical stages, into Mild Cognitive Impairment (MCI), and then into actual diagnosis of a person with the clinical symptoms of dementia.  The aim of the workshop facilitators was to ‘nudge’ attention more to the left of the field; the field being the actual diagnostic phase. The drive was to move the current notion of an early diagnosis of AD to pay more attention to the pre-clinical, MCI stage and to seek the degree of receptivity of stakeholders to diagnosis at this earlier stage.

Mild cognitive impairment (MCI) refers to a condition in which someone has minor problems with cognition - their mental abilities such as memory or thinking. In MCI these difficulties are worse than would normally be expected for a healthy person of their age. However, the symptoms are not severe enough to interfere significantly with daily life, and so are not defined as dementia.

The stage of MCI is often characterised by people (the person with the problems and/or their family members) concerned that what they are experiencing may be the early stages of dementia.  Their concern extends to seeking a professional consultation for a ‘memory assessment’, often in a memory assessment service.  MCI is a categorisation of people whereby their subjective symptoms cannot be measured on standardised measures, such as the mini-mental state examination (MMSE) or in physical screening and tests such as brain scans. Often the memory assessment service clinicians will review such people on a six monthly or annual basis – their approach being ‘watchful waiting’.  There is a probable conversion rate of 50% of these people actually going on to develop dementia.

Now I see two distinct issues here that require careful consideration.  

The first is that this watchful waiting is all well and good but what else do we offer these people? They may still be experiencing problems that as yet fail any clinical categorisation in the form of a clinical diagnosis but that does not make their concerns any less real.  The stress that the approach of watchful waiting can do is to exacerbate the levels of psychological distress the family are already experiencing, they may already be feeling negative effects upon their social activity and networks. They may also indeed be struggling with maintaining a healthy balance in their working life and employment.

When researchers attempt to nudge the field more to the left then they must also consider how services and clinical practice keep pace.  There is already a gap in what people in the MCI ‘no-man’s land’ are offered in respect of psychological support whilst clinicians are watching and waiting.  Because the scan offers no explanation and because they complete the memory test with flying colours may not assuage their angst.  We have a duty to provide psychological support that aids their receptivity of a diagnosis, should it be the case in the future.  If their MCI does not lead to a diagnosis of dementia surely, they also need psychological support during this uncertain time?

The second issue is that once a person has received a diagnosis it does not always lead to a pathway of care and support thereafter. There is much concern that a pathway that supports people with dementia and their families currently does not exist, or if it does, tends to patchy, much like a post-code lottery.  Whilst we need to ensure a defined pathway is a national minimum standard, where does that pathway start and what support is offered along its route? We must give equal attention to nudging attention to right of the field and ensure that once diagnosed effective care and support is available.  Yes, a diagnosis that is both timely and as early as possible is essential, but this must then lead to the offer of appropriate and timely care and support that promotes well-being and prevents or mitigates against crises along the way.  We talk much about the possibility of case management in supporting families affected by dementia, we must ensure that research attention to elicit preventive strategies, bio-markers and pre-clinical phenomena does not distract us from those people right of the field that already have a diagnosis of dementia and its associated needs.

 

Dr Karen Harrison Dening

Dementia UK

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