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Initial ideas for research studies and involving people affected by dementia

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approaches to dementia care, research

Academics are generally discreet about how their initial ideas for a research project develop. There are lots of reasons for this - some are rational, other reasons can seem a little 'paranoid'. Ideas or 'intellectual property' are the main stock of trade for academics, so it isn't surprising that we try to keep our competitive 'edge', as well as the more noble motivation of collaboration and public engagement. Here I'll give you my views as a 'junior' researcher.

Sometimes it feels like a tightrope - trying to think of ideas that meet real needs for people and communities, and yet have some connection to academic work, which can seem fairly abstract. Being 'too academic' leads to work that seems 'ivory tower' and irrelevant to many people (or just not understandable). However being 'too real world' leads to work that may be useful for today and for the local people who participate in the research, but may not solve problems for tomorrow, or for people elsewhere in the country. That is, money invested in research should lead to knowledge that is useful in the future and for people of many different cities and countries. Good research should be generalisable and have high impact.

To make sure research is useful - we have to ask the end user - in our case, people with dementia, their families and carers. To emphasise the importance of listening to people and patients, funding organisations now request evidence that people have been involved at the earliest stages of developing research bids. So if you have an interest or are affected by dementia - researchers are looking for your help in many projects, both locally and nationally. Please visit: https://www.joindementiaresearch.nihr.ac.uk/

We often try to 'go to where people are' - that is we attend carer support groups, or patient participation groups (PPG) or dementia cafes, to seek the views of people affected by dementia. I'd like to describe one meeting I attended recently. I was working with colleagues in Netherlands on a proposal to share knowledge between two universities, and to compare and contrast the situation in the two countries. We started discussing some very abstract concepts such as complexity theory as we tried to understand the difficulties for people to access support and care in the community. I was concerned that the ideas were too 'blue-sky-thinking' and considered bringing the focus back to practical ways to address what I felt were the key issues. I suggested we look at a paper-based care record which could be held by the individual and family, to help coordinate the various support activities (healthcare, social care, voluntary sector, etc). At that point I went to talk to a carers group just outside of Nottingham...

The group gave me a warm welcome. Their first response to my ideas was that there are no services in the community, so my ideas about coordinating services were not worthwhile... (oh!) Of course this was a slight exaggeration; the detail was - most services require self-funding, there is very little follow-up after diagnosis, and that phoning around a number of organisations leads to nothing but closed services or 'not being eligible'. While this brought me 'back to earth', further discussion revealed important details. Some people did manage to access good services, but there was huge variability, with another person not able to access the same service due to living across a bureaucratic boundary. There is very little clarity of information on what should be available. Also, while low level services could prevent needs in future, they were often not available. (These are just a few key points from the discussion).

Input from this group really helped me to reconsider the aims of the proposal that I was discussing with my Dutch colleagues. Our work should enable demonstration of needs in the community, and this evidence should be the basis of an argument for further investment in these services. Furthermore the system that we try to develop should lead to awareness of variability of services between neighbourhoods, so that funding can be directed to the 'underserved' and thus address health inequality.

I hope I've given an insight into the balance between academic input and public input which is required to develop meaningful and valuable research projects. We value your input, and please get involved, but please excuse us if we sometimes look upwards and scratch our heads; we're just thinking of the academic theories and concepts that might lead to better solutions in future.

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