White Rose Age and Ageing Conference 28 th April 2014 Kate Gridley Social Policy Research Unit...
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Transcript of White Rose Age and Ageing Conference 28 th April 2014 Kate Gridley Social Policy Research Unit...
The feasibility of studying life story work in dementia care: report from the fieldWhite Rose Age and Ageing Conference 28th April 2014
Kate Gridley Social Policy Research Unit University of [email protected]
2
Acknowledgements and disclaimerThis presentation features emerging findings from research funded by the National Institute for Health Research Health
Services and Delivery Research Programme.
The views and opinions expressed in the seminar are those of the research team and do not necessarily reflect those of the
HS&DR Programme, NIHR, NHS or the Department of Health.
Life story work involves:
Recording aspects of:
past life
present interests
future plans and wishes
Using this record to achieve a range of
outcomes (not simply filed)
Definition
Development and feasibility study (first stages of evaluation)
Funded by NIHR Started July 2012 Due to report spring 2015
The study
Aim: To carry out the development and initial feasibility stages of evaluation of a complex
intervention – life story work – for people with dementia.
Systematic review of literature
Qualitative study - focus groups
Surveys of services and family carers
Two small scale studies looking at feasibility, as well as potential costs and outcomes:
One with a stepped wedge design in care homes
One with a pre-test post-test design in NHS assessment units
Methods
Route Intermediate Outcome
Overall Outcome
Person is reminded of different aspects of her/his life and achievements
Reaffirms identity Improves wellbeing
As a personal challenge/project (i.e. a current achievement)
Reaffirms identity Improves wellbeing
Person has opportunity to think and/or talk through past experiences (life review)
Resolves issues Improves wellbeing
Person with dementia is listened to and respected
• Feels validated• Resolves issues
Improves wellbeing
Staff get to know the person better Changes staff views of person
Changes staff approach to care
Highlights areas in common (person/ staff/ family/other people)
Facilitates:• Communication • Connections
Builds relationships
Families reminded of the person they love Rebuilds connections
Rebuilds relationships
Potential outcomes (and routes)
Outcome Measure Respondent type
Improves wellbeing (quality of life)
QOL-AD People with dementia and family carers (proxy)DEMQOL
Carer Experience Scale Family carers
Builds relationships Scale for the Quality of the Current Relationship
People with dementia and family carers
Changes staff approach to care
Approaches to Dementia Questionnaire
Staff
Personhood in Dementia Questionnaire
Identity I AM fluency task (Lara Charlesworth, University of Leeds)
People with dementia
Outcome measures
Six care homes 10 residents with dementia in each care home
randomly selected to be invited to join study Loose definition of dementia – care home provider
resistant to measurement Life story work introduced at each home by the
provider (through training and templates) Data collected from residents, family carers
and staff at baseline (before training) and 1 month, 2 months and 6 months after
Qualitative interviews and focus groups to capture context
Care homes study (in a nutshell)
*Where the person did not have capacity to give informed consent her/himself
Recruitment of people with dementia
Care Home
Selected Approached (directly or via carer)
Consented (self)
Carer advised
to* include
Refused (self)
Carer did not give
consent to contact
Other reason for withdrawal
CH1 10 11 (typo in selection list)
3 5 1 2 0
CH2 10 10 5 2 1 2 0
CH3 10 10 4 4 0 1 1 (too ill – died soon after)
CH4 10 10 1 5 1 3 0
Total number of people with
dementia41 13 16 3 8 1
QOL-AD
DEMQOL
Confounds attitudinal position (whether you agree or disagree) with how strongly you feel about the issue.
This is cognitively complex for people without cognitive impairment!
Four stages. Respondents have to: 1. Comprehend the statement
2. Then determine their own opinion
3. Then compare their own opinion to the statement
4. Then fit this result into the agree/disagree format(Refs: Converse and Presser, 1986; Fowler, 1995)
Problems with agree/disagree
Care Home Total participants
with dementia
Completed QOL-AD* at
baseline
Completed DEMQOL** at
baseline
Completed Relationships
Scale at BL
CH1 8 4 3 3
CH2 7 7 4 4
CH3 8 4 4 3
CH4 6 5 1 1
Total 29 20 12 11
Success with measurement tools
*Simplest so attempted first** Reasons for non-completion include:
Person unable to answer questions Person tired/ does not want to answer any more questions Ran out of time (meal time/other activities took priority) Questions upsetting – interviewer ended the session
***Reasons for non-completion similar to DEMQOL but also include: Person does not have any close relationships
Research in care homes is not straightforward Range of barriers which are outside the
researchers’ control Current measures do not work for everyone How do you measure in the moment
benefit/pleasure?
But it is worth it: Under researched group Valuable learning about implementation in this
setting
Summary
For more information about research into life story work at the Social Policy Research Unit, go to
http://bit.ly/lsDem or contact Kate Gridley on 01904 321988 [email protected]
Questions/Comments?
More information