As co-chair of the Alzheimer’s Australia Consumer’s Dementia Research network, I presented at an Annual Meeting of the Cognitive Decline Partnership Centre (CDPC) this week on why it is important to include consumers in research, in particular people with dementia, as to date, most of the research has been done with care partners or the families of people with dementia. The slides I used for the presentation can be downloaded here Nothing about us without us.
One of the things I have often found mildly disturbing at conferences and research forums, is that the research being proposed or in progress, seems to be more of a career statement, or career launching pad for academics, and I find it difficult to see how much of the research is of value, especially when people with dementia are still being told to give up our pre diagnosis lives, to get our advanced care planning and end of life things in order, and to get acquainted with aged care.
Being Prescribed Disengagement ® at the time of diagnosis, which is then continued by the service providers and a lack of rehabilitative, disability or social pathway of support, makes no sense, and to me is not only unpalatable, it is unethical. I remain hopeful as by nature I am a positive person, but on many days, I do feel like giving up.
This is not meant to be disrespectful to clinicians, service providers or researchers, especially as I hope to become one, but it is concerning when the research is about consumers which in this instance I mean people with dementia, and we are not included in the process or as participants. Hopefully Australia and other countries follow the excellent lead of the UK by setting up their own Join Dementia Research site.