Involving service users with dementia or learning disability


Involving service users with dementia or learning disability

A place to share ideas on involving people with cognitive difficulties (eg dementia, learning disability) in research, education or practice development.  What challenges have you come across? How did you resolve them?  What are the ethical issues?

Members: 10
Latest Activity: May 26, 2013

Discussion Forum


Started by julie gosling May 26, 2013. 0 Replies

' ... spouses have shared pride in the courage displayed by their loved ones.  Professionals have been brought to tears as they acknowledge their deeper understanding about what the person with…Continue

Stories in dementia

Started by Jill Anderson Apr 10, 2013. 0 Replies

This event may be of interest to some in this group.STORIES AND EMBODIED MEMORIES IN DEMENTIA Lars-Christer Hydén Linköping University, Sweden & Center for Dementia Research (CEDER) A MODE &…Continue


Started by julie gosling Jan 26, 2013. 0 Replies

My own small experience of working alongside colleagues who live with dementia, in a research capacity not focused on their dementia but upon more general issues for older people has led me to have a…Continue

Comment Wall

Comment by Andrea Capstick on January 25, 2013 at 16:37

Hi  There's been very little activity on this group for a while now, but I just noticed Julie's request to join.  Maybe we can get it going again.  Please reply  about your interests.  I'm just starting a research study about the use of participatory video with people who have dementia - very exciting - and I'm also part of an initiative on PPI in care homes.

Comment by julie gosling on January 25, 2013 at 22:38
Sounds great Andrea!! - I co-worked with a team of researchers in their 60s to 90s, including citizens with some level of dementia, to develop a research framework and peer evaluate experience of care at home - their recommendations all accepted and actioned - and am presently collaboratively developing digital histories with Irish elders in Sheffield -
My partnerships with learning disabled colleagues in research and education spans 23 years - I have never met anyone who could not be involved
Comment by Jill Anderson on January 25, 2013 at 23:05
Comment by Andrea Capstick on January 26, 2013 at 12:38

Hi Julie - I'm not that far away in Bradford.  I'd love to come and talk to you about the digital histories sometime.  Another thing I'm involved in is the Trebus Project, a narrative life history archive of stories from people with dementia, largely living in London care homes  The website may be down for updating at the moment, but when it's available again you should be able to see some of the narrative analysis we've been doing.

Re the Staffs project, it's always good to see anyone getting funding for social research on dementia rather than drug trials, but it does strike me as a bit ironic that even when people with dementia are given a voice, it's only their experience of (journey with) dementia that they're asked to talk about.  It's often not what people with dementia want to talk about in my experience.  They lived through interesting times at a point where the oral history tradition was breaking down and there's so much about their lives that needs to be recorded before it gets lost for good.

I'm interested in alternative methods for facilitating involvement with people who communicate differently, eg photo-elicitation and walking interviews.

Do you know about the Narrative Healthcare conference at King College in June?

Comment by julie gosling on January 26, 2013 at 13:14
Re the project sole focus on dementia - EXACTLY ANDREA - You've Named That Tune In One!!! - similarly - Black people are only ever asked to talk about their experiences of 'blackness' - or people living with distress about their experiences of survival - all invited guests into the dominant 'white, able and normal' framework which seeks only to view, consume or analyse 'otherness!'
I have contacted researchers with a view to possible networking - and YESSSS! - I know you and I have lots to share and I know we will share Andrea - I do sone work at BradMac with Mick Grant and I have also taught with Brad Uni in past years
I will follow up your web links
you may also like to hear about 'Arise You Gallant SWEENEYS!'
I was part of a small group of explorers who filmed their own journey home to Ireland in 2008 - after absences of up to 50 years - the group included older Irish street drinkers with enduring mental health and dementia experiences / musicians / survivors / artists - we threw out all the labels, including 'vulnerable client' and 'helper, and focused on our common humanity as a group of discoverers, creators and story tellers - the journey was about healing through reconnecting and validating - but the film itself became a 'hit! - Guardian Weekend feature and showings on Irish television channels as well as national screening in the UK often hosted (until their deaths) by the older men - we hope to repeat the journey next year with revenue raised from the film
Tell me more about the forthcoming conference - I have been off the map due to illness for a year or so - hope to get more active again -
iRO the richness of communication - I did a lot of peer-led-research in the mid 90s with men and women who used noises, sounds and signs to describe their experiences of moving from institutions into community living - it was a powerful story!
Back to your views on experiences of people living with dementia - and I absolutely agree with everything you say - our journey with the older Irish men was precisely about recording what they felt important about their lives - while there was still time!! - similarly our peer-evaluation more recently of care at home was a living testament to the joy resilience, spiritual thirst for life and celebration of decades - rather than a mere narrow prescriptive response to service provision - ohhhh I could go on at length........
Comment by julie gosling on January 26, 2013 at 13:55
TREBUS is immense - I've just encouraged Outside Film to try and get a last minute bid in for the Preston dementia work
Comment by Bill Penson on January 27, 2013 at 16:11

Hello all,

new to this group but I have a personal interest- my father is in a nursing home in Lancaster with dementia. Alison- you're at Bradford- I'm doing a bit of teaching in SSIS until June- perhaps we could meet up? I would echo Julie's sentiment - I think barriers to involvement reflect the approach of the 'involvers' and often also reflects their particular interest or angle not the stake of the service user/survivor/patient. Even the term involvement can mean 'you can come play in our game' in that the limits/paradigm have already been set.  There's been a few circumstances when I've floated the idea of using activist models with  service users so for instance rather than an 'anxiety management group', a group on local community activation -eg. how to get in touch and make demands of your MP. Funny what worries people...

Comment by Andrea Capstick on January 27, 2013 at 17:45

Here's the url for the conference, Julie

It's also the launch of an International Network (though suspect International may mean largely American in this particular field).

Bill - I'd love to meet up.  Let me know when you're around.  My Bradford ext. no is 5192.

Comment by julie gosling on January 27, 2013 at 18:27
Thank you Andrea - I will pursue the link with interest
- I am very impressed with TREBUS and have read through their web and FB posts with great joy

@Bill - I totally agree with your comments re the suspect connotations of 'involvement' - we have challenged it for years!! - I have similar worries with the word 'partnership' and draw attention to June Sadd's preferred term 'allegiance' - I personally try to develop collaborations wherever possible which rest upon shared values and in mutually defined and owned spaces (both physical and social)
Comment by julie gosling on January 27, 2013 at 18:29
Bill - I hope your father gets the best care that you would wish for him - and if not - fight for it!!

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