Remembering My Hat

14th November 2014

CABS/CPA seminar on innovative methods in dementia research: Part 4

Filed under: Uncategorized — rememberingmyhat @ 17:17

Jenni Brooks, University of York and Nada Savitch, Innovations in Dementia

Researching life story work: Ethics and processes.

Life story work – includes future as well as past, in order to increase pleasure as well as quality of care. Not just reminiscence or life review.

Long tradition of work in this area, increasingly with PWD, but little evidence of cost-effectiveness. One of aims of this project is to help with that.

Research qs

  1. How might life story work improve outcomes for PWD, carers, familiies, services?
  2. How cost-effective could it be
  3. Is formal evaluation of life story work feasible?

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(CC) bix

Involvement of PWD.

Innovations in Dementia is a Community Interest Company.

PWD involved in project at every stage, including in Advisory Group. Did this through specialist work – was not just tokenistic.

Less formal meetings, in their homes or familiar places. Talked about particular issues, not necessarily the whole agenda, paperwork and information presented in accessible forms and at appropriate times.

Focus groups for three groups: PWD, family carers and professionals – allowed some tailoring. Asking them about experiences of life story work – what outcomes should we be looking for? This set their agenda for later stages of the research.

Intervention in care homes was to provide 2 hours of training in life story work to care homes and hospital wards (existing carers, not specialists). How they implemented it was up to them. Did baseline and 1 month, 2 month up to 6 month measures.

Issues they encountered:

  • PWD don’t always have a diagnosis or have it recorded in their notes – asked care home managers instead, chose randomly from list provided.
  • Obtaining consent to contact family members. But hospitals and care homes can’t pass on family member contact details. So care staff asked to ask family members if they would mind be contacted by researchers, or gave leaflet. Didn’t work very well as care staff so busy. Big barrier. Also meant researchers don’t know why people refused contact.
  • PWD Mental Capacity Act, as usual – assume capacity and check for each decision. But difference between consent and assent. Funders required consent form to say things like ‘this is a feasibility study’ which PWD sometimes couldn’t understand. If PWD couldn’t consent, ask consultee instead ‘yes, my mother would love to talk about herself’. But always with PWD’s demeanor taken into account so if they don’t want to do it on the day, they don’t.

Used standard questionnaires. Sometimes had to abandon questionnaire because people seemed to be getting upset by questions. Some questionairres were really hard to understand, although the intended question was fine – they ended up recording verbatim answers. Meant it took much longer that it was supposed to 2 hrs instead of 5 minutes.

Need to measure QoL in the moment, not just retrospectively.

Have to rethink consent processes to include PWD. Don’t have consent forms you have to sign. Don’t have consent forms full of questions. Don’t take consent as once-and-for-all [this is good practice for all consent].

CABS/CPA seminar on innovative methods for dementia research: Part 3

Filed under: Uncategorized — rememberingmyhat @ 15:55

Erratic and partial liveblog of this seminar. Possibly slightly scantier this afternoon and definitely no account of the questions and comments afterwards, as I’m also chairing.

Hannah Zeilig, University of the Arts, London

Mark Making and Descartes projects

Two projects recently completed, Mark Making and Descartes, both about dementia and arts using ethnographic methods. Both collaborative projects with wide range of people.

Image of a slinky (toy) as useful for working with dementia – have to be flexible and adaptive to the unexpected. Sense of humour also helps.

Four methods:

  • Participant observation
  • Focus groups
  • comics
  • interviews

General agreement about importance of dementia care, lots of ‘noise’ about it. But big lacks in post-diagnosis support and funding.

Descartes project: using the arts to educated the dementia care workforce. Applied project to develop arts-based workshop to educate dementia workforce.

Real suspicion of Hannah by care home staff. Protective of their routines and practices. And of residents. Offer to let them read her notes didn’t help. Really didn’t understand why she was there. Didn’t have a conception of what research was.

Developed a comic for staff to convey information about the research project. Residents also liked it and seemed to understand it. 63% of staff then came in their own time to research workshops!

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(cc) Julie Kertesz

Mark Making: The Arts in Dementia Care

Lit review – vast majority of work in this area is in last 3 years, some 20 years old.

Developed another comic to communicate about the research project.

Worked with 4 dementia arts project. In one project the comic was incredibly effective. But in other projects they didn’t want to use it because it used the word dementia a lot. Artists leading projects felt that people didn’t want to be labelled as having dementia.

Difficult to interview PWD. People running the projects protective of PWD. Also no time to build up relationships (6 month research project)

Questionnaire used smiley face scale and ‘yes / no’ answers. Was short and friendly. Worked really well. But many people wrote long accounts on the back, hadn’t expected that. Some criticisms from PWD of q’airre e.g. ‘don’t feel like any of those faces, or all of them at once’

Focus groups. Hannah had brought lots of prompts but they weren’t needed. Artist present drew the stories that she heard during the focus group.

Telephone interview were okay but not as successful. A few in-depth interviews. One with PWD a few months after arts project had finished. Her carer was worried she wouldn’t remember it, but she did remember lots.

CABS/CPA seminar on innovative methods for dementia research: Part 2

Filed under: Uncategorized — rememberingmyhat @ 14:29

My usual erratic and partial notes from a seminar. Comments in square brackets my own responses.

Sarah Campbell, Univ of Manchester

Embodying life story work: Multi-sensory appearance biographies

‘Hair & Care’ project (Richard Ward PI) combined with ‘Dementia and Dress’ study (Julia Twigg PI)

Why is appearance important in dementia care? Why does it matter?

Nufield Council on Bioethics report on Dementia, 2009 “‘small things’ of care are particularly important … the humanity with which assistance for everyday  living is offered, especially with eating and intimate care.”

These studies are both part of the move to embodied research in dementia ‘the body itself must be understood as a fundamental source of selfhood that does not derive it’s agency from cognition’ Kontos 2005[?]

The interview as a multi-sensory event, for interviewer as well as interviewee.

Methods (mainly Hair & Care project, but some from Dementia and Dress one)

  • filmed the salon event (followed 23 people) from arrival to being shown the style at the end, also exits. Camera placed wherever it would fit (small spaces) then left to roll.
  • in-situ interviews – meant it didn’t matter that PWD couldn’t remember things – there was plenty going on at that moment (water too hot, roller too tight, chit-chat)
  • ‘sensory apprentice’ (Sarah Pink). Interviewer went through the ‘shampoo and set’ experience that most clients had. Helped hairdressers lug equipment around (mostly not working in salons), sweeping up hair cuttings from carpets!

Salon performances

  • even people with very advanced dementia still remembered how to behave in a salon – sitting up, bending head etc.
  • salon banter maintained identity
  • hairdressers were often holders of memory, even if person themselves had forgotten – had been going in to same institution for many years.
  • post-hairdo compliments from staff and other residents.

Also did appearance biographies. Most people used photographs. Talked about appearance over lifecourse, daily appearance routines, significance of jewellery, family resemblences. In Dress and Dementia study did similar reminiscence sessions. Some people brought make-up bags. Wardrobes and handbags.

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(cc) Neil Moralee

Appearance standards. The importance of keeping up your own standards.

Appearance signatures. Something that stood for them – wearing a white cap for one person – took off his work cap when got home, put on his white cap to go down pub. Still always wore a white cap. His account was that it kept his head warm – would it have mattered to him now if the hat wasn’t white? Yes, in terms of his narrative/biographical identity, even if the colour isn’t so significant to him now.

Sensory feeling provoke memories e.g. older man feeling his own newly-shaved chin reminded him of watching his father shave.

Appearance practices are historically produced but also continue to evolve [biographies don’t end with today. Identities aren’t fixed. Until you are dead? But then, what about death of the author?!]

Hairdressers held lots of memories ‘for’ clients. How can these stories get passed on to other staff?

Imperial Leather soap smell was an internationally shared-experience

Comment from audience: There can be tensions for older men between maintaining appearance and maintaining dignity/modesty when care staff are mainly women.

Comment from audience: One of the sources of difficulties is that health care assistants and other low-status workers (who are the people who actually provide the bodily care, and may have great knowledge of appearance matters for individuals) aren’t usually involved in multi-disciplinary meetings and handovers.

Speaker: Yes, and also the case for hairdressers – they are not on the staff at all, usually – just come in freelance, don’t get any training as part of the dementia-care workforce. Certainly not asked their opinion about care.

Question: Do women get any choice in how their apperance comes out? Is the shampoo and set compulsory?

Speaker: Hairdressers want to give value for money. Shampoo and set lasts very well, especially when lying down or leaning head a lot. Hairdressers tend to have a particular style. Many hairdressers had trained in the 50s and 60s, so this may change in the future [or maybe there will be a terrible shortage of hairdressers willing to work in care homes?]

Speaker: Hairdressers valued highly the touch that they provided. Thought it was good for clients, stimulated blood flow, noticing changes in health via head/hair.

Question: How did including PWD go down with ethics committee?

Speaker: It was really hard! Took ages. Had to work very hard to demonstrate that it was necessary to involve people who could not give consent. Worries about what would happen to the images afterwards.

CABS/CPA seminar: Researching the lives of people living with dementia – Innovative methodologies

Filed under: Uncategorized — rememberingmyhat @ 13:26

 My usual erratic and partial notes from a seminar. Comments in square brackets are my own responses

Richard Ward, Univ of Stirling

Negotiating (the) neighbourhood: Doing research into the social and physical environment with carers of people with dementia.

Literature on space/place and dementia tends to focus on the physical aspects of environment (adaptions etc) rather than the social aspects of environment.

Asked participants (carers and ex-carers of PWD) to draw/write social networks.

Many were reluctant to do so – literacy difficulties? [also possibly emotional difficulty in articulating and distinguishing closeness of relationship?] Lots of people produced lists under different categories ‘family’, ‘friends’, ‘age concern’, ‘church’. Some people used different colours. Many put the PWD in the centre of their page.

Hardly any social workers, psychiatrists, CPNs etc were featured. Could be because they were not seen as part of social network or could be because people have less contact with e.g SWers and CPNs than they used to.

Then (if mobile enough) did walking interviews – ‘show us the places that matter to you’. Gave disposable cameras as did. Lots of literature on walking interviews – much more gaps/silence/ time to mull over things. Perfect method for how people experience environments.

One common type of walk was ‘the neighbourhood on display’ – kind of tourguide-tourist relationship. Local beauty spots – held significance even though weren’t part of daily lives. Often open and green spaces. Putting their neighbourhood on display to outsiders (the interviewers).

Another common type was ‘the everyday’ walk. Talked about significance in lives and also local reputation of places

Walking seemed to provoke emplaced memories – things that would be unlikely to come up in an interview in their sitting room.

Places that seemed unremarkable ‘it just looks like a field to anybody else’ football field. Somewhere this carer and PWD had walked for many years as a shortcut to family member’s home. Helped PWD to access memories, and hence significant to carer too as one of the places where they communicate meaningfully.

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(cc) Remi Kaupp

Safe spaces within a neighbourhood – coffee shops and hairdressers especially. Where people wouldn’t stigmatise PWD

The significance of weak ties [as ever!]. People saying ‘hello’ on the street to PWD makes it feel safer and more familiar, even though they don’t remember them or their names. People in shops sending PWD back to car park when wandered off from partner.

Shrinking world. Partly because carers don’t want to tell e.g. less close friends about someone’s dementia, so avoid contact.

Meaning of home changed –feeling imprisoned and trapped. Helps to explain that the wider neighbourhood existed as places of escape, or even just the promise of place (where people didn’t actually visit them except when showing the interviewer around).

It’s clear there were changes over time – next project involves longitudinal aspect.

Conclusions:

  • Separating social environment form physical environment isn’t helpful – they are too intertwined
  • Intangible, imagined and remembered qualities of place are really important
  • ‘Dementia time’ and dementia-specific experiences of place and space.

These walking interview methods could also be very productively used by care providers, not just researchers.

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