Please can I ask your advice on ...

[fallenangel14]

what do you feel needs more research or attention to with respect to dementia, those experiencing it or those caring for people with dementia.

I'm due to undertake some university research soon and want to look at areas which would be of some real significance or help to those dealing with dementia in their everyday lives.

All suggestions welcomed.

The thing that drives my dad round the twist caring for mum is the continual process of prompting her to eat and drink. She doesn't recognise food, and her language problems mean even when you tell her to eat and what it is, she can't process that either.

Lots of people seem to have problems eating/drinking, but theres little advice apart from prompting them which is rather tiring to do for 12 hours a day, every day!

Thanks CMOT. I can see how frustrating that could be. Is there a need generally for more information, guidance or advice to be given to carers - or is this readily available to help the situation?

There is a need for more - mostly its very general, with no specifics to the different types of impairments. So advice for people with memory impairment as their primary issue about finding the toilet (for example) is very different to someone like mum who has language and visual processing as her primary (a picture of a toilet is as little use as the word)

Isn't it up to you to research your research choice, via lit review rather than asking random folk on Internet? What has your lit review told you so far?

Why so negative ginmakes? I happen to believe that centring the views of those who are dealing with issues on an everyday basis is actually very important in the conceptualisation of research design. For research to be useful, and directly applicable and helpful to, say, carers of relatives with dementia, it's important to have their input from the start. Otherwise, the risk is that more 'ivory tower' research is produced that isn't grounded in people's experiences. Just so you know, this wasn't a short-cut on my behalf - a literature review would beed to be undertaken anyway as research topics need justifying. It's just very important to ask people who are having to cope with dementia outside of an academic environment.

And thanks CMOT for your responses - useful information.

Because I think it's lazy "research" which can't be validated. "Some random anonymous people on a forum thought it would be useful" isn't a great basis for a research topic. Why not try your local carers centre or alzheimers group for a focus group?

It's a preliminary brainstorming. Not lazy at all. If the research stopped at this, you might have a point. As it stands, you don't. No-one is claiming representativeness, nor generalisability. Brainstorming with people - random or not - who are mire experienced than myself with the challenges of dementia, in a very real, day-to-day context. Their experiences may be anecdotal and pertain just to their situation (or not). This doesn't make their concerns any less legitimate or inconsequential or unworthy of being researched. Personally, I think the best research is grounded, from the very start, in real-life experiences - and not from some 'random' researcher sat in a university library.

Quite true fallen angel. There'll always be snipers on Mumsnet.
CMOT has made good points. I am not a day to day carer for my dad, he has professional helpers. One thing I can remember is there wasn t a lot of hand holding in the early days, when Dad's dementia was dawning on us and his behaviour was getting harder and harder to manage. The admiral nurse came along, but as the household is rather unconventional: no mum, a mentally ill bro, Dad, me living 2 hours away, and the house in a mess, I could feel her shock and apprehension. She sent me a booklet.To be frank, apart from wanting to run for the hills, I felt I needed help with everything. As it was, i learnt as I went along. From the elderly parents site on mumsnet, from the dementia team ot, and the Alzheimers UK website.

Thanks Whataboutbob. The Care Act is supposed to accommodate carer support for carers of people with dementia but I think local authorities etc are perhaps only just getting to grips with that and are pressured, in any case, to signpost carers on to community services. I guess it depends on what's available and their knowledge to do that though

What I think needs research is why dementia can often be viewed differently to any other terminal diagnosis. We need more active care plans that are openly discussed about interventions that would be helpful and add quality to life just not add length to it. To not then embark of courses of action that just lengthen life. If you have dementia what/who are we treating with say tight control of diabetes?

A more personalised approach then? Is this not what happens now in needs assessments and subsequent care plans? I've recently read up on Admiral Nurses who seem to offer both clinical and emotional support. I don't think they are in every region but it seems to accommodate the person-centred approach you are advocating. Has anyone any experience of these?