Question:
I am a researcher at Stirling Universityin Scotland and have just started a research project looking ways ofimproving the ability of people with dementia to communicate theirpoints of view and opinions. We are trying to focus on the well-beingof people with dementia, and I was hoping that some of you who havefirst-hand experience of caring for people with dementia might findtime to let me know what sort of things you feel are important in thelives of people with dementia.

We are looking particularly at the activities they enjoy/dislike, theirrelationships with other people, their surroundings - i.e. what'sgood and bad about where they live or spend large parts of their time(i.e. if they go to any day centre), and importantly how they feelabout themselves.

Another area in which I would be interested in getting opinions is howbest to categorize the various stages of dementia.....we need to find ameans of distinguishing between early, middle and late stage dementia,with a particular emphasis on people's ability to communicate duringthese three stages, and although I do have some ideas (e.g. the MMSE),it is not clear to me what would be the most appropriate.

Can anyone help???

Answer: When you say 'researcher' do you mean "student", because everything you askis well documented, so the fact you need to ask on a website for this typeof information (stages, needs, etc) I find somewhat alarming. Remind me notto ask Stirling University for any info on Az as they presumably read it ona web page somewhere, and maybe did a Google or two if you were lucky.

Secondly, if I was to do 'research' of the kind you mention, I'd go toplaces where real carers and sufferers are, since you can have no idea whois behind any of the identities on this website. Chances are most are"real" (except the iron guy obviously), but you certainly dont have anyobjective way of knowing, or of classifying and categorising our experiencesand opinions, of knowing whether they are true, or of knowing what actualstate the people we look after or know about, are in.

Finally, this group is by definition a tiny, unrepresentative set of carerswith a higher than normal proportion of nutcases and single issueproponents, and responses from it would be an even more atypicalself-selecting sample. Dont they teach anything about statistics atStirling?