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?


(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].


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