Involving people with experience of dementia in a literature review – and discussing this at the Alzheimer’s Society conference
28 May 2019
I recently attended the Alzheimer’s Society annual research conference in the London Oval, presenting a poster on my experiences of involving people living with dementia in my literature review of urgent care.
People living with dementia supported the literature review by highlighting which aspects were most relevant for them
With my poster I wanted to highlight how useful I found involving people living with dementia and carers in my literature review from the very start. I am conducting a scoping review of the literature for my NIHR SPCR launching fellowship. My data collection is in out-of-hours primary care and I originally planned to do a review of the literature in this area. However, consultation with 7 Alzheimer’s Society Service User Review Panels (groups set up nationally that review research ideas) found that people were unsure what out of hours primary care was. They helped broaden the research question and specify the literature search terms.
I conducted the literature search and screening (with second screening from a colleague), and then held two local groups with 6 people living with dementia and 5 carers for those living with dementia. I brought the themes and findings from the literature to discuss. I found that while the much of literature focussed reporting how many people with dementia end up in hospital, and methods to avoid this, people affected by dementia saw hospitals as at times necessary. They felt that work needs to be done to improve hospitals for people with dementia, rather than keep people out of hospitals. (Incidentally, I attended a great panel on this topic at the conference – including a current literature review of this topic , an example of a dementia specialist ward, and the great ‘My care matters’ initiative to encourage person-centred care.)
The groups particularly aligned with the literature that highlighted the role of carers, identifying this as an area of research and care which is particularly important. However, while there is much research on end-of-life care and advanced planning, this was seen as a ‘sore’ and difficult subject for people living with dementia.
I am currently synthesising the findings with the feedback from the groups and look forward to updating you as this work progresses.
Alzheimer’s Society research conference – for people with experience of dementia as much as for those researching dementia
While the Alzheimer’s Society conference was a great place to talk about my review and I had some great conversations, there is no doubt that I was preaching to the choir in highlighting how useful and important it is to include people with lived experience in dementia research. The Alzheimer’s Society have people with experience of dementia at the heart of their work, as evidence by the fact their Research Volunteers Network was celebrating its 20th birthday at the conference. MP Matt Hancock, Secretary of State for Health and Social Care, was stopped mid-flow by campaigner (and person living with dementia) Joy Watson for using the word ‘suffering’ in a dementia context – something dementia advocates have been trying to stop for years. People living with dementia gave talks, presented posters, sat on panels, signed books, and were as fully involved in the conference proceedings as those without dementia. It was great to experience and completely fitting to the Alzheimer’s Society ethos.
That’s not to say that we were missing out on up-to-date research. Professor David Sharp gave a fascinating overview on the latest research from the Dementia Research Institute on technology to enable people to live at home for longer and Professor John O’Brian spoke from a neuroscience perspective on preventing dementia. Social prescribing came under debate (especially when Matt Hancock referred to art therapies as ‘free’) and the panel on the impact of dementia on women highlighted gender differences both in the provision of care and for disease processes . Cuts to social care and ways to address this were discussed in depth. There was also a lot of primary care relevant discussions, with GPs being repeatedly highlighted as crucial in signposting to appropriate support, and the Alzheimer’s Society identifying GPs as key in rolling out their new dementia support initiative ‘Dementia Connect’.
I would definitely recommend all dementia researchers to attend future Alzheimer’s Society conferences as an opportunity to discuss the latest dementia research and innovations with academics, healthcare professionals and people affected by dementia alike.