This is the second in our re-emerging series of monthly blogs or articles focused on research, and was co-authored by a researcher Jennifer Bethell, and Christine Thelker who is a very active Alumni board member of DAI.
It highlights the importance of including people with dementia as collaborators in research, and supports the recently launched #DAI 2021 Global Report, Valuing the advocacy of people with dementia: moving dementia out of the shadows.
Building Bridges : The Importance of Researchers and Persons with Lived Experience Coming Together
“Patient engagement” is defined by the Canadian Institutes of Health Research (CIHR) as meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation – where “patients” include people with personal experience of a health issue and caregivers, including family and friends.1 Other organisations, including in the UK and US, use slightly different terms: patient and public involvement2 or engagement,3 but they all overlap on the importance of involving patients and caregivers. Of course, for dementia, the word “patient” may not always be the best; people living with dementia are many things – they have identities defined by a lifetime of personal and professional relationships and activities – for most, being a “patient” is a relatively small part of that. We try to talk about people with lived experience instead, but also see the need for more formal terminology.
There are a few reasons both researchers and people with lived experience have argued for patient engagement in research. Mostly, it comes down to two things:
- It makes for better research – people with lived experience can help researchers figure out how to plan their study in a way that asks the right questions for the greatest impact, is more appealing for prospective participants, collects the most important information and shares the results with more people and in the right way.
- It’s the right thing to do – people impacted by the research should have their say in what research is done and how it is done as well as the ways the results should be used.
For research on dementia, there’s another reason: it challenges the stigmas associated with dementia. Stigmas associated with dementia, including public stigma and self-stigma, are major issues worldwide4-9 and can have negative effects on the health and quality of life of people impacted by dementia. Engaging in research helps to challenge negative assumptions about the abilities of people living with dementia.
Whatever the motivations, patient engagement means people with lived experience of dementia are becoming more and more involved in research. No longer just “study subjects”, they are taking on roles as members of the research team, participating in planning, conducting and communicating research. This idea is not new – it’s been common practice in some areas of research for years – but it is still relatively new for research on dementia.10 Fortunately, dementia advocates, researchers and research organisations worldwide are working together to move these ideas forward.
As a person with lived experience, I can remember feeling a sense of intimidation at the very thought of working with a researcher. Having your confidence shattered with diagnosis, the thought of working alongside a researcher seemed out of my realm. I was sure I would have nothing to offer, after all they were at so much of a higher academic level.
In my first venture into research, I was hesitant, scared actually, nervous, apprehensive. It took me a while to be brave enough to engage and interact. But taking that first step was so important – because I haven’t stopped. I started working with a number of researchers: Kathy McGilton at Toronto Rehab then the TREC (Translating Research into Elder Care) team as one of their Voices members, then with AGEWELL and Noelannah Neubeaur on the Dementia and Wayfinding Project. This brought me to the CCNA (Canadian Consortium on Neurodegeneration in Aging), where I first met Jen Bethell, Ellen Snowball and Carrie McAiney.
Getting involved in research was the start of feeling confident again, feeling I had value and worth, that I could still contribute to this world in meaningful ways. Working with the researchers I work with now is truly a highlight of life for me. The connection, the friendships that have come from the work we do will last long past the end of a project. I continue to learn from both researchers and other people with lived experience. Understanding the work being done, how things move forward and why enables me to share in my advocacy. I learn each time we meet and enjoy watching the projects come to fruition. Giving researchers insight and the ability to understand the lived experience helps ensure their work can have a positive outcome for those affected by dementia. It creates a great sense of pride in knowing you have helped produce something of great value, work we all can take pride in, and that will still be helping others long after my time is done. I always leave feeling better and having a better day. I leave feeling valued, appreciated and like I am part of a team. I am grateful to work with researchers, I will continue to recommend that more people with lived experience get involved. Let’s keep building bridges, because together it is making a difference for those with the lived experience.
Taking that first step is important. I would recommend people with lived experience get involved with groups like DAI(Dementia Alliance International), DAC (Dementia Advocacy Canada), DAA and others, they will help you find research groups. Don’t be scared to try different research groups till you find the one that fits for you, or maybe several will resonate with you.
As a researcher, I also remember the first project involving people with lived experience. I was intimidated – they were the experts! But I was excited – yes, I believed engaging people with lived experience could make research better and it was the right thing to do. Through this work, I also learned the importance of tackling the stigmas associated with dementia9 and started to think of “patient engagement” in research as one way to do this. From my experience, researchers who want to engage people with lived experience of dementia share these motivations – we are also curious about others’ perspectives, open to new ideas, adaptable when circumstances change and humble about things we don’t know. We want to make research a place where people with lived experience of dementia feel valued, respected and supported.
Through the CCNA, I have had the privilege and pleasure of working with Christine as well as 16 other people with lived experience of dementia from across Canada. They came together just over a year ago, but the CCNA Engagement of People with Lived Experience of Dementia (EPLED) Advisory Group is already contributing to research grant applications and projects, planning and participating in our annual Science Days and helping to shape the way research is communicated. They’re also influencing my own work and views on dementia and research. But there is much more to be done! If you are a person living with dementia, in Canada, and interested in hearing more about opportunities to get involved in research – please reach out to us.
Christine Thelker is an author, an advocate, Alumni Board Member of DAI (Dementia Alliance International), Recipient of the Richard Taylor Award in 2021, and was diagnosed with Dementia at 56, she is now 62.
Jennifer Bethell is a researcher and co-lead of the Canadian Consortium on Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia (EPLED) program.
- Canadian Institutes of Health Research (CIHR) https://cihr-irsc.gc.ca/e/48413.html
- National Institute for Health Research (NIHR) https://www.nihr.ac.uk/documents/ppi-patient-and-public-involvement-resources-for-applicants-to-nihr-research-programmes/23437
- Patient-Centered Outcomes Research Institute (PCORI) https://www.pcori.org/about-us/our-programs/engagement/public-and-patient-engagement
- Alzheimer’s Disease International (ADI), World Alzheimer Report 2012 https://www.alzint.org/resource/world-alzheimer-report-2012/
- Alzheimer’s Disease International (ADI), World Alzheimer Report 2019 https://www.alzint.org/resource/world-alzheimer-report-2019/
- World Health Organisation (WHO), Dementia: a public health priority https://apps.who.int/iris/handle/10665/75263
- Government of Canada, A Dementia Strategy for Canada: Together We Aspire https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy.html
- Shah H, Albanese E, Duggan C, Rudan I, Langa KM, Carrillo MC, Chan KY, Joanette Y, Prince M, Rossor M, Saxena S, Snyder HM, Sperling R, Varghese M, Wang H, Wortmann M, Dua T. Research priorities to reduce the global burden of dementia by 2025. Lancet Neurol. 2016 Nov;15(12):1285-1294. doi: 10.1016/S1474-4422(16)30235-6.
- Bethell J, Pringle D, Chambers LW, Cohen C, Commisso E, Cowan K, Fehr P, Laupacis A, Szeto P, McGilton KS. Patient and Public Involvement in Identifying Dementia Research Priorities. J Am Geriatr Soc. 2018 Aug;66(8):1608-1612. doi: 10.1111/jgs.15453.
- Bethell J, Commisso E, Rostad HM, Puts M, Babineau J, Grinbergs-Saull A, Wighton MB, Hammel J, Doyle E, Nadeau S, McGilton KS. Patient engagement in research related to dementia: A scoping review. Dementia (London). 2018 Nov;17(8):944-975. doi: 10.1177/1471301218789292.