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More power together?

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approaches to dementia care, communication, research

I have worked in the field of dementia care for some forty years and consider myself to have a passion for improving the quality of care families affected by dementia receive.  In more recent years my career took a slightly different route.  Not away from the field of dementia care but more specifically towards the palliative and end-of-life care part of the trajectory of dementia.  This led employment with Dementia UK as an Admiral Nurse and in undertaking a PhD in planning for end-of-life care in dementia. As I read more research about the poor access to or poor quality of palliative and end-of-life care for a person with dementia the more of an activist I became.  Indeed I have since become part of many national and international research studies to champion this cause.

However, I recently had the opportunity to attend a two day course in Sheffield that focused on palliative and end-of-life care in several neurological conditions, dementia included. Partly I wanted to hear of the current thinking on dementia and end-of-life and partly I was inquisitive as to what care and support people with other neurological conditions received.  The days were broken into sections that gave an overview of the condition from a pathophysiology perspective, considered the research evidence for unmet palliative care needs and then considered how to assess the persons palliative care needs in order to better address them.  Dementia was the first of the four neurological conditions explored; the others were Parkinson’s disease (PD), Motor Neurone Disease (MND) and Multiple Sclerosis (MS).  The section on dementia revealed no new information for me so I felt this was affirmatory in my knowledge.  Indeed the pathophysiology of each of the other conditions was largely affirmatory of my knowledge.  However, when the position on access to and quality of palliative and end-of-life car were discussed for each of the other conditions I was alarmed to see that there were shared issues. I had spent many years feeling that people with dementia were sadly unique in health and social care systems failing to recognise, assess and manage their symptoms at the end-of-life but here we were being told that often people affected by each of these other neurological  conditions also experienced similar unmet needs.

In many a presentation I discuss the palliative and end-of-life care needs of people diagnosed with dementia.  I often set the scene by talking about the shortened life span of a person with dementia and how this should press us to diagnose in a timely manner and to ensure that discussions and plans are in place that ensure the wishes and preferences of the person are noted whilst they have the capacity.  Now retaining capacity may not be the biggest concern of a person diagnosed with MND as the majority may likely retain capacity almost to the end and make decisions for themselves, however, the median lifespan is often short after the diagnosis is made - 20-24 months after diagnosis.  Sometimes the gaining diagnosis, as with dementia, can be tortuous which reduces the amount of time the family have to both come to terms with the disease and also to plan for the future.

What was also both enlightening and humbling was that the symptom burden at the end stages for these four neurological conditions were not dissimilar.  The literature on each of them talked about comparing the symptom burden with that of cancer and arguing how it was not dissimilar and asking the question; if the symptom burdens are not dissimilar how is it we can achieve better control in patients with cancer than in these other conditions?  This was one of the very questions I would ask of my audience of professionals when delivering my ‘sermon’ calling for better palliative and end-of-life care for people with dementia.  As with all such continuing professional development activities there is networking activities built in.  I frantically moved between professional’s representatives of each of the four conditions and shared my perception that we were each claiming a uniqueness of place in the palliative and end-of-life care world in so much as they were a hidden or overlooked group. What we all agreed was that we have a group of conditions that are all equally disadvantaged in some way or other and that the collective voice would be more powerful and carry more weight in improving care and support as they near the end-of-life.


Dr Karen Harrison Dening

Head of Research & Publications, Dementia UK

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