White Rose Age and Ageing Conference 28 th April 2014 Kate Gridley Social Policy Research Unit University of York

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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)

 Development and feasibility study (first stages of evaluation)  Funded by NIHR  Started July 2012  Due to report spring 2015 Aim: To carry out the development and initial feasibility stages of evaluation of a complex intervention – life story work – for people with dementia.

SSystematic review of literature QQualitative study - focus groups SSurveys of services and family carers TTwo small scale studies looking at feasibility, as well as potential costs and outcomes: OOne with a stepped wedge design in care homes OOne with a pre-test post-test design in NHS assessment units

RouteIntermediate Outcome Overall Outcome Person is reminded of different aspects of her/his life and achievements Reaffirms identityImproves wellbeing As a personal challenge/project (i.e. a current achievement) Reaffirms identityImproves wellbeing Person has opportunity to think and/or talk through past experiences (life review) Resolves issuesImproves wellbeing Person with dementia is listened to and respected Feels validated Resolves issues Improves wellbeing Staff get to know the person betterChanges 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 loveRebuilds connections Rebuilds relationships

OutcomeMeasureRespondent type Improves wellbeing (quality of life) QOL-ADPeople with dementia and family carers (proxy) DEMQOL Carer Experience ScaleFamily carers Builds relationshipsScale 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 IdentityI AM fluency task (Lara Charlesworth, University of Leeds) People with dementia

 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

*Where the person did not have capacity to give informed consent her/himself Care Home SelectedApproached (directly or via carer) Consented (self) Carer advised to* include Refused (self) Carer did not give consent to contact Other reason for withdrawal CH11011 (typo in selection list) CH CH (too ill – died soon after) CH Total number of people with dementia

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)

Care HomeTotal participants with dementia Completed QOL-AD* at baseline Completed DEMQOL** at baseline Completed Relationships Scale at BL CH18433 CH27744 CH38443 CH46511 Total *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

For more information about research into life story work at the Social Policy Research Unit, go to or contact Kate Gridley on Questions/Comments?