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 Yorkkate.gridley@york.ac.uk

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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 kate.gridley@york.ac.uk

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