Abstract
For too long, healthcare systems, treatments, legislation and research have been undertaken with the best of intentions while excluding us. Whilst it is true to say that historically, people have been diagnosed at an older age with a later stage of dementia, in recent years, more and more people are being diagnosed at a younger age and earlier stage of dementia.
I personally know people who have lived with a diagnosis for over 20 years and others diagnosed over 10 years ago who still advocate for rights and take part in research worldwide. Research is an invaluable part of the human race, fighting against the multitude of medical conditions that have been identified through human history. Without research, we would not be able to find the causes, develop new ways of support, services, rehabilitation, treatments and eventually the cures for dementia; the researchers play an important part as do the participants. Of equal importance is co-production and the involvement of people living with dementia and their families in the development of research. Who better to guide research, we may not be academics, but we have the lived experience with many of us having the ability to express the challenges we face and how we need health and social care to develop in a way that enables us not disables us?
As well as taking part in research as a participant, I am involved in lay reviewing research applications and co-production in three ways. Firstly, I am a member of South Yorkshire Dementia Research Advisory Group (see http://sydemrag.group.shef.ac.uk/), where PhD students and professionals come to us when they wish to do dementia research in Sheffield, UK. They provide us with a plain English summary beforehand, and at our meeting, they do a presentation and we provide feedback on their research. One example of my own experience of patient involvement is a recent presentation on some potential research on hearing and dementia. The idea originally focused on hearing loss, but as my challenges are specifically with noise, this has now been incorporated in the research. Also, as a result of the meeting, they are now going to do an evaluation as to whether a hearing test should be part of the diagnosis process, and several of us have been invited onto the steering group for the research.
The group also has further involvement with Sheffield University and their Dementia Futures conference which is held annually in July. This is where PhD students present their research in plain English, once they have received funding and begun their research, which means the group is not just involved in the application but has an opportunity to see the research evolving and to talk to the students and give further feedback. As time is limited, some students do poster presentations, and at the end of the day, the group judges the best poster and on-stage presentation. As the Chair of South Yorkshire Dementia Research Advisory Group, part of my role is to ensure that researchers present their research ideas in a clear and concise way. Researchers are encouraged to share their ideas visually where possible and to include breaks throughout their presentation to invite discussion and comments. As Chair, I try to facilitate the discussions so that all group members understand the research and have the opportunity to give their opinions. Members of the advisory group value it most when researchers come along at an early stage when they are developing their research ideas and member’s contributions can inform the research design. The group also welcomes updates throughout the research so that they can remain involved in the progress of the research. (Dr Jane McKeown, The University of Sheffield and Chair of the South Yorkshire Dementia Research Advisory Group) There are currently around 270 volunteers in the Network. As well as acting as Lay Reviewers they also sit on Grant Funding Panels and Boards, act as monitors for projects that are being funded by the Society and offer advice and guidance to researchers when they are first developing their proposals. The Society supports many types of research involving people living with Dementia. An example is ‘Living alone with Dementia’ … that simply involves an interview and telephone conversations with the researcher for people living alone. (Sandra Barker, Regional Coordinator for the Alzheimer’s Society Research Network)
These are just three examples of co-production in research and evidence that we can be involved in the development of research as well as being a participant.
Conclusion
It is very important for there to be co-production in research. People living with dementia or other conditions can and should be involved in all aspects of the research. We can play a valuable part in research about us and for us. Research is just one aspect of our lives where we can be involved. There are some professionals that question whether we can take part in things like research and advocacy because we have a diagnosis of dementia. It is important to remember that people are getting diagnosed at a younger age and earlier stage and still retain their abilities as before albeit the challenges of daily life become greater over time.
The phrase ‘Nothing about us, without us’ is commonly used in advocacy and for research and anything else that is supposed to help us. With earlier diagnosis, it is time to include us, internationally, through national and local government down to grass roots level, not exclude us, as dementia is no longer a silent disease. For me, originally, research was an important part of my rehabilitation, getting me out of the house and engaging with others, early in 2018. Now it is an important part of what I am trying to achieve in my own small way, being involved in the development of and taking part in research. I do not do research for myself, any successes may come too late for me. I see research as a legacy I will leave for my children, grandchildren and those that come after.
Resources
For further information, see https://whenthefoglifts.blog/category/my-journey/my-research/.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.