Real stories

Jane's story: Using my lived experience to influence the government

The All-Party Parliamentary Group (APPG) on Dementia, for which Alzheimer’s Society serves as the secretariat, is a cross-party group made up of MPs and Peers with an interest in dementia. Its aim is to influence legislation and policymaking in order to improve the lives of people affected by dementia.

It meets several times a year to focus on and conduct inquiries on specific issues affecting people with dementia. During the 2019 election, the Conservative party made a commitment in their manifesto to double research funding into dementia and speed up trials for new treatments in what it termed a ‘Dementia Moonshot’.  

This has not yet happened, so the APPG chose to conduct an inquiry into the current state of dementia research in the UK, the need for the Moonshot, and what it could achieve.

It also aimed to examine how the pandemic has impacted the research field, the experience of dementia researchers in the UK, and which areas of research should be prioritised for any additional funding. 

Taking part

I was honoured to be asked to take part in the first of four sessions taking evidence for this enquiry though slightly overawed by my fellow panellists; David Thomas, Head of Policy at ARUK, Professor Bart De Strooper, Director at UKDRI and Professor Martin Rossor, from NIHR. 

Jordan Clark from the Public Affairs team at Alzheimer's Society sent me the briefing notes and the list of the questions which were going to be asked within our session. We then had a Zoom call to chat through how the session would proceed, my background and special interests and experience. This was so he could help me frame my answers, which was very helpful.

The APPG were extremely welcoming. The questions were addressed to us in turn, though we were able to add our thoughts wherever they were appropriate. To start, I was asked why I got involved in research. I talked a little about my background and my time caring for my mum, in particular that dementia takes away our control of our lives.

Getting involved in research can help regain some control, particularly for so many people living with dementia; there are increasingly things which they can no longer do, but being an expert in their own lived experience is certainly something they can continue to do. 

We talked about the various different forms of dementia and that even when we find a cure for Alzheimer’s we still need to find a cure for all of the other forms of dementia.

We also discussed the impact of Covid on current research: loss of funding, the difficulty of remote interaction with research participants, labs being shut down and young researchers losing much needed and important peer support.

We also highlighted the effects of Covid on all of the people living with dementia due to social isolation during lockdown and the possible effects on all of us from long Covid and whether that would eventually lead to a new form of dementia.  
 
The session was recorded for future use and was an amazing experience. The comments we all made were certainly listened to and I felt that it gave a real opportunity for us to make a difference, though obviously time will tell.