Earlier this month I attended the Alzheimer’s Society annual conference at the Park Plaza Hotel London. This was my first in person event and it was great to share a room with so many people driven by the belief in a better world for people affected by dementia.
The focus of the day was on improving early diagnosis rates in response to the impact of the pandemic, where we witnessed a catastrophic decline in the amount of people being diagnosed and subsequent utilisation of support services.
The conference brought together professionals from all knucks and crannies of the health system, as well as academics, students, and most importantly people affected by dementia who played a part in every aspect of the day.
I thought it may be nice for those who did not attend to get a wee flavour of what the day was like and share a few of my personal reflections, although, if anyone is reading this who did attend and finds my recollection contradictory, then I do apologise, it must have been the free bar.
Lived Experience in the lead
Firstly, what a show Gina (person living with dementia) and Trevor (family carer) put on co-presenting the conference. The pair kicked of the day of by sharing their lived experience and some of the highs and lows. As a dementia researcher and unpaid dementia care worker myself, I basically live and breathe dementia, but even I found their stories really focused my attention to why we were all congregated in that conference room. As a colleague of mine also in attendance said afterwards, “you forgot why you do what you do sometimes”.
New Chief Executive of Alzheimer’s Society, Kate Lee, addressed delegates and spoke of building back better, but not to where we were pre-covid because that simply wasn’t good enough. The fact that COVID-19 has been used wrongly by many (mainly politicians) to explain systemic problems that were REAL well before the pandemic, was raised several times throughout the day, but ironically not by the Secretary of State for Health and Social Care.
The main take home message from Kate’s inaugural speech as CEO, was that dementia isn’t getting old, it’s getting ill. I find it quite shocking to reflect that over 10 years after the release of the first national dementia strategy, that the principal focus remains to convince people dementia is not a normal part of ageing.
Professor Alistair Burns provided the context for the conference presenting the historic perspective of dementia diagnosis rates, which fair enough, were heading in the right direction prior to the pandemic. Although it is good to note, a diagnosis doesn’t mean post-diagnostic support, like it does with other diseases. Unsurprisingly, cancer featured prominently as a benchmark for where we need to get, and it is the comparison I commonly make with members of the public whether it be the disparity in funding, service, or social norms. Though as Prof Burns highlighted, diagnosing dementia is complex and nothing like getting a diagnosis of heart disease or cancer, made even harder by the lack of universal diagnostic testing in the UK. But promisingly, he did raise awareness to some pockets of really good practice such as blended diagnosis approaches, boundaryless memory assessment services, and the opportunities Link Workers provide in the ‘living well’ pathway.
What can we learn from cancer?
Professor Sir Mike Richards, former national cancer director shared experiences of a lifetimes pioneering work twisting politicians’ arms to get cancer on the political agenda. Getting the data, having a minister on your side, and bringing charities and other big influencers together to make a collective case for action were said to be the key political drivers. If only the Secretary of State were present for the morning session and not just his speech.
There were a number of parallel sessions running throughout the day. One of which looked at how Integrated Care Systems [ICSs] are improving the integration of dementia services.
While the work these professionals were doing looked and sounded impressive, I couldn’t help but be sinical at the lack of impact reported. There were not just one, but several sophisticated pathways of change that evidenced collaborative working and enabled the voices of people affected by dementia, but there was very little evidence to say these different ways of working were actually better than before in terms of the outcomes for people and communities. We know we have a problem with accountability because of the way public services are contracted and then sub-contracted, and sub-contracted again, in the UK. For me this showed throughout the day, and at times it felt a little like a marketing campaign for ICSs.
Another parallel session I attended was on diagnosis in ethnic diverse populations, whereby those with lived experience spoke of their pre and post diagnosis experience. What I found incredibly interesting was that many of the challenges facing them, although from a very different ethnic background, were the ones I have too encountered. Of course our family didn’t encounter language barriers, but I constantly battle with my father, who also cares for my nan, to try and access services we are entitled too, or my nan to accept her diagnosis. Talking with a delegate after the session who was previously a family care worker, we concluded that the challenges facing all of us were relating to and centred on a lack of awareness. This awareness manifests in different ways, and disproportionate ways, but in my opinion, overall people don’t know enough about dementia.
What the Secretary of State forgot to say…
Last but definitely least, Savid Javid’s speech. Firstly, for those who did not attend the conference, if you were there would you have clapped the minister as he walked on stage? I’m slightly questioning my sanity. He got what I would describe as a very warm reception. We have a minister of a government who through austerity measures dismantled our welfare state quite literally to the point of killing, 120,000 extra deaths since 2010 in fact. His government are also the ones who seen the human rights of people living with dementia and their families taken away during the pandemic, that left hundreds of thousands of people affected by dementia the ‘worst hit’.
His speech wasn’t much better than their handling of the pandemic. He provided some very brief detail of what would be in the new dementia strategy, which will mirror much of the cancer strategy centred around the four P’s: prevention, precise diagnoses, personalisation, and participatory roles for patients and public. A couple of positives to take home were that the strategy will be ten years instead of five, and dementia will also have a stake in the revised Long Term Plan.
To end on a positive note, it was just really, really, really nice to be in the company of other humans and meet some exceptional advocates and campaigners for dementia.
Nathan Stephens is a PhD Student and unpaid carer, working on his PhD at University of Worcester, studying the Worcestershire Meeting Centres Community Support Programme. Inspired by caring for both grandparents and personal experience of dementia, Nathan has gone from a BSc in Sports & Physical Education, an MSc in Public Health, and now working on his PhD.