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UK DRI’s Lived Experience Group: Involving people affected by dementia in our research

Dri Launch 346

The UK Dementia Research Institute exists to improve the lives of those at risk of or living with dementia, and their carers. We believe our research is strengthened by input from people with lived experience of neurodegenerative diseases.

We formed our Lived Experience Group in 2019, made up of people living with different forms of dementia and people who have cared for or are caring for loved ones. Members of the group act as advocates and ambassadors for the institute, helping explain what we do and sharing our outcomes with wider networks, to help build a supportive society. Members also provide patient and public involvement feedback to UK DRI researchers.

To date we have seen many benefits of involvement. This includes valuable input at launch events, for our communications materials and on key selection panels – including appointing our Director Bart De Strooper and selecting our Care Research & Technology centre. The Helix Centre, who work with our Care Research & Technology programme, engaged with our group members to gather feedback on what needs could be addressed with technology in the home.

We look forward to developing more involvement activities this year. If you’re a UK DRI researcher and would like to find out more about connecting with the Lived Experience Group, or if you are affected by dementia yourself and are interested in getting involved please contact enquiries@ukdri.ac.uk

Meet our Lived Experience Group members

Sue BoexSue-Boex-border.jpg#asset:4034


My experience with dementia

As an ex carer for my Father and then my Mother both of whom had dementia, I am passionate about public involvement in Health Research, more especially dementia research.

My experience with research involvement

I have been a Research Network Volunteer for the Alzheimer’s Society for over 12 years. I am a lay panel member of the NIHR Academy for the Doctoral Research Fellowships as well as on the NIHR Prioritisation Committee for Primary Care.

My hopes for involvement at the UK DRI

I joined the UK DRI because as a carer I have seen what dementia can do, both to the patient and their families. UK DRI may have the brightest minds but they do not have the lived experience of the disease.  We desperately need to find a cure but also need to help people with the disease to be able to live life as fully and independently as possible.  

Andrew Cornwall

My experience with dementia

I am currently caring for the third member of my immediate family with mixed dementias. I am also Co-founder & Vice-Chair for Dementia First, which is a charity running dementia specialist day care centres in East Surrey & support for carers and families.  

My experience with research involvement

I have a wealth of experience in PPI: Public Panel Member for NIHR’s Programme Grants for Applied Research, former member of several NHS ethics committees, Lay Member of the Management Committee at S.W. Dementia Brain Bank, Co-Lead of the Publicity & Cohort Engagement Work Package at Brains for Dementia Research and a Member of the Lay Advisory Group at Maudsley NIHR Biomedical Research Centre. Additionally I am a Research Network and Fundraising Volunteer for Alzheimer’s Society and a Campaigns & Fundraising Volunteer for Alzheimer’s Research UK. I am employed in Public Engagement by a national museum as well as a consultant and volunteer with several charities and universities in non-dementia research related public engagement. 

My hopes for involvement at the UK DRI

By keeping patient focus and patient benefit at the core of the UK DRI’s research, we can ensure that this major investment by the UK Government & the founding charities does produce real improvements to those people affected by dementias. As a public engagement professional, I want to use my professional skills & academic training, as well as my lived experience, to help the UK DRI achieve its full potential and maximum impact with its research.

Kathy GillKathy-Gill-border.jpg#asset:4037


My experience with dementia 

My husband Paul was diagnosed with Semantic Variant Frontal Temporal Dementia in 2013 and my mum died in 2015, she had vascular dementia. Our social group includes many couples living with a range of dementias and I have learnt a lot from their experiences too.

My experience with research involvement

In 2013 I registered with our local NHS Trust database of research participants and have been a subject in a number of dementia related research projects. I became a member of Join Dementia Research in 2015 and have enjoyed participating in research. I have delivered over 70 Dementia Friends sessions, and encourage people to register with JDR as their action. It is important to me to feel that I am doing something positive in the fight against dementia, and as Paul’s diagnosis is one of the rarer types of dementia I welcome the opportunity to have my voice heard. When the local NHS trust produced a training video about JDR Paul and I talked about life with dementia, how important research is to us and how much we gain from participating in it. When the video was launched we were interviewed for the Leicester Mercury, Radio Leicester and East Midlands Today.           

I joined Alzheimer’s Society Research Network Volunteers in 2015 and have been in 3 focus groups, working with researchers at the design stage. I have spoken to audiences at two legacy events for the Alzheimer’s Society.

My hopes for involvement at the UK DRI

Paul and I were members of the lay interview panel selecting the UK DRI Director. I am passionate about research and dissemination to the wider public of the work of the UK DRI. I value the opportunity to do anything to help in the fight against dementia.

Paul Gill

Paul-Gill-border.jpg#asset:4081


My experience with dementia

In 2011 I noticed a change in both my gait and walking speed. Also that neck pain had reduced my ability to read technical articles. In 2012 my wife Kathy expressed concerns to my GP. Following two scans, I was told in 2013 I had semantic variant FTD and warned median life expectancy was six years.

My experience with research involvement

Upon diagnosis, I immediately asked about what medical research I could join, becoming a member of Join Dementia Research and a lay member of Alzheimer’s Research Network in 2015. I also answered questions as a lay member of a panel representing neurological conditions at the Association of Medical Research Councils. 

Because we both had scientific backgrounds, Jamie Tulloch asked us to monitor Prof Jason Warren’s project on MRI scans, a project I found fascinating. More locally, I attend an elderly patient involvement group in Leicester and am a named co-applicant on a NIHR research project. I also attend sessions at Leicester medical school for first and second year students.

My proudest moment was 10th January 2018. Following Pfizer’s announcement that it was withdrawing from research, the Alzheimer’s Society made an urgent request to answer a BBC ‘Today Programme’ request to say what those with a diagnosis could do. Our response was to volunteer for research - this family of diseases have been around a long time and a cure is needed to help future generations.

My hopes for involvement at the UK DRI

In September 2016 Kathy and I were asked to join a lay panel interviewing candidates including Prof Bart De Strooper for the post of UK DRI Director. I hope to continue using my experience and skillset to help the institute.

Keith OliverKeith-Oliver-border.jpg#asset:4035


My experience with dementia

I was diagnosed with Alzheimer's disease in December 2010 aged 55 and since then have done my best to live as well as possible with the many challenges the disease has presented to myself and my wife. I am an Alzheimer's Society Ambassador and Kent and Medway Dementia Envoy. For some time to help treat my dementia,  I have been on the maximum dose of galantamine and for 8 months this has been supplemented with memantine as my dementia has progressed, and alongside this my care plan focuses upon a wide range of interventions and treatments which I find very helpful.

My experience with research involvement

I have a very wide experience of PPI from being an Alzheimer's Society Research Network volunteer for the past 6 years, serving on the panel for the Care, Public Health and well being half of the Network, siting on various research project advisory boards; written articles with professionals and academics about dementia research, have published books which feature elements about PPI and dementia research. I was also on the interview panel selecting the director of the DRI having been interviewed for the MRC newsletter just prior to this and then following this up by delivering the speech at the opening of the DRI in the presence of HRH Princess Anne.

My hopes for involvement at the UK DRI

Having been closely involved in the UK DRI since its inception and as someone who has an enormous amount to potentially gain from the important work the UK DRI is embarking upon I am delighted to be involved and hope that I can play a part in supporting and celebrating the work of the committed and talented staff the DRI has drawn together. In doing so we can truly make tomorrow better than today and yesterday for those affected by dementia.

Barry PlumptonBarry-Plumpton-border.jpg#asset:4044

My experience with dementia

As the ex main carer for my mother who was diagnosed with Vascular Dementia I have experienced many of the issues raised during the progression of this illness.  Following retirement I worked with the local Alzheimer’s Society as Dementia Outreach supporting people with dementia and their families in their attempts to cope with this illness.

My experience with research involvement

As a long standing member of the Alzheimer’s Society Research Network I have had involvement with numerous research projects funded by the Society. I have helped to set up the Public Involvement in Research into Ageing and Dementia (PIRAD) PPI group at the Cambridge Institute of Public Health. I am also a lay member of the London Brain Bank Tissue Request reviewers group and past member of the Public Involvement in Research Group (Pirg) PPI group at the University of Hertfordshire.

My hopes for involvement at the UK DRI

I joined the UK DRI Lived Experience Group because I believe that the combined resources and focus of the UK DRI, that can potentially be brought to bear on tackling this devastating illness that is dementia, stand our best chance yet of success in not only improving the lives of people with dementia and their carer’s but eventually providing a cure.

Sue StrachanSue-Strachen-border-copy.jpg#asset:4036

My experience with dementia

I was diagnosed with Vascular Dementia in September 2014, having had symptoms since Dec 2012 when I experienced a Global Transient Amnesia attack. I try to manage my cardio vascular risk by running. As a result I ran the 2018 London Marathon for Alzheimer’s Research UK. I have kept busy over the last 3 years with volunteering and awareness/fund raising, despite my struggle with concentration and fatigue.

My experience with research involvement

I am a Champion and a Community Speaker for Alzheimer’s Research UK. I deliver Dementia Friends Sessions locally, in Hereford. I have given interviews and talks through my local Clinical Commissioning Group. All this has meant telling my story and influencing professionals to understand dementia and what it is like to live with a dementia diagnosis.

My hopes for involvement at the UK DRI

My passion is for more research. I have already participated in several research studies through ‘Join Dementia Research’ and my local mental health trust. I hope that by joining the group at the UK DRI I can bring ARUK’s perspective to the work and my participation will contribute to better understanding of the impact of dementia on our lives and how research can create a more positive future.

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