Tailoring Carers Assessments in NHS and Adult Social Care for Dementia Caregivers

This research project focuses on tailoring assessments in NHS and adult social care to better meet the needs of caregivers of people living with dementia. It involves a co-produced study by carers and former carers, with participatory workshops, data collection through focus groups and staff interviews, and the development of case vignettes. The project aims to improve support and services for caregivers of individuals with dementia.

• Dementia Caregivers
• NHS
• Adult Social Care
• Research Project
• Caregiver Support

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1. TAILORING CARERS ASSESSMENTS IN NHS AND ADULT SOCIAL CARE TO THE NEEDS OF CARERS OF PEOPLE LIVING WITH DEMENTIA Paul Clarkson, Lucie Mills SOCIAL CARE AND SOCIETY; THE UNIVERSITY OF MANCHESTER NIHR THREE SCHOOLS DEMENTIA PROGRAMME

2. RESEARCH GROUP A CO-PRODUCED STUDY BY CARERS AND/OR FORMER CARERS OF PEOPLE LIVING WITH DEMENTIA* Dr Paul Clarkson* Social Care and Society, University of Manchester Professor Caroline Sanders School for Primary Care Research, University of Manchester Lucie Mills Research Assistant, Social Care and Society, University of Manchester Dr Baber Malik* Honorary Fellow, Social Care and Society, University of Manchester Asif Butt* Practice Manager, Huntley Mount GP, Bury, Greater Manchester Ruth Eley* Director and Chair, Together in Dementia Everyday (TIDE) Ian Sheriff Academic Partnership Lead for Dementia, University of Plymouth & Prime Minister s Challenge Group on Dementia With: Cecilia Toole* CEO, Sight & Mind CIC, Knowsley, Merseyside Jessica Drinkwater GP and NIHR Clinical Lecturer, University of Manchester NIHR SSCR ANNUAL CONFERENCE 2023 19/04/2023 TAILORING CARERS ASSESSMENTS IN NHS AND ADULT SOCIAL CARE TO THE NEEDS OF CARERS OF PEOPLE LIVING WITH DEMENTIA 2

3. PROJECT TIMELINE 12 months HRA approval for 1 NHS site (GP Practice) DATA DATA COLLECTION: CARERS & SOCIAL CARE STAFF PARTICIPATORY CO-DESIGN WORKSHOPS SCOPING REVIEW COLLECTION:P RIMARY CARE STAFF ETHICAL APPROVAL STUDY END JUNE 2023 JANUARY 2023 FEBRUARY APRIL 2023 JULY - DECEMBER 2022 APRIL MAY 2023 JULY 2023 NIHR SSCR ANNUAL CONFERENCE 2023 19/04/2023 TAILORING CARERS ASSESSMENTS IN NHS AND ADULT SOCIAL CARE TO THE NEEDS OF CARERS OF PEOPLE LIVING WITH DEMENTIA 3

4. DATA COLLECTION FOCUS GROUPS Semi-structured Carers: 1-6 per group Underserved groups: YoD; south Asian carers PROGRESS: Recruitment: 95% Completed: 90% Preliminary Data analysis PROGRESS: STAFF INTERVIEWS Staff: Social Work Staff: Primary Care Format: 1:1 interview Recruitment: SC underway Primary Care (HRA) PROGRESS: CASE VIGNETTES Mock carers assessments Carers & Staff Recruitment began HRA NIHR SSCR ANNUAL CONFERENCE 2023 19/04/2023 TAILORING CARERS ASSESSMENTS IN NHS AND ADULT SOCIAL CARE TO THE NEEDS OF CARERS OF PEOPLE LIVING WITH DEMENTIA 4

5. SCOPING REVIEW: KEY THEMES BARRIERS TO ACCESS EXPERIENCE OF ASSESSMENT OUTCOMES Good practice: Perceived lack of benefit from carers and practitioners: useless , waste of time Low percentage of carers receiving a carers assessment1: - Respite care - 2022: 25% - Sitting service Separation from the cared-for4 - 2021: 24% - Cash payments Key needs are not assessed: - 2019: 27% Inaccessible support: - Wellbeing - 2018: 31% - Unsuitable for Young Onset - Employment Knowledge of entitlement1-3 - Unable to travel - Relationships Language of assessment 3 - No replacement care - Self-care Lack of resources2,4 - None available 1. Carers UK. State of Caring, 2022. 2 Seddon et al., 2001. 3. Seddon et al., 2015. 4.Seddon et al., 2007. NIHR SSCR ANNUAL CONFERENCE 2023 19/04/2023 TAILORING CARERS ASSESSMENTS IN NHS AND ADULT SOCIAL CARE TO THE NEEDS OF CARERS OF PEOPLE LIVING WITH DEMENTIA 5

6. EMERGING THEMES: CARER FOCUS GROUPS OUTCOME ACCESS EXPERIENCE 100% received via Social Care - Payments: 150 - 350 p/y +ve: Easy. Pleasant. Avg. 3 years before assessment - Crisis - Carer illness - Violence/Police involvement - Benefits - Carer wellbeing drop-ins: (massages, carer meetings). Questions on sleep, wellbeing, activities & responsibilities. - Holidays/Spa Breaks: Some positive (Titanic Hotel). SW was empathetic & provided information on services. - Respite & sitting services. -ve: Stressful. Complicated. Pointless. Brief. Interview-style. Inaccessible, non-responsive, fully booked, not worker- friendly, hard to book in advance, need a proper break. Multiple assessments over time (<1p/y) Questions didn t cover all needs. In-person & phone-call SW didn t seem to care & it was hard to build trust in so little time. Need respite to take the holiday. Different person each time NIHR SSCR ANNUAL CONFERENCE 2023 19/04/2023 TAILORING CARERS ASSESSMENTS IN NHS AND ADULT SOCIAL CARE TO THE NEEDS OF CARERS OF PEOPLE LIVING WITH DEMENTIA 6

7. TAILORING TO THE NEEDS OF CARERS OF PEOPLE LIVING WITH DEMENTIA INFORMATION PERSONALISED YOUNG ONSET DEMENTIA - Knowledge of what s available - Respite/Sitting services may not be suitable: motor skill activities e.g. snooker, table tennis, gardening, walking - Explore the questions, rather than ticking a box - Legal help, advice, community: Self-advocacy: I wish I knew then what I know now - Experts by experience - Difference in needs: Physical strength - resistance to personal care carer safety - Consider loss of physical contact & romance, conversation, emotional support, living grief - Support worker & check-ins - Training is especially important: cared-for person may seem less unwell - Dementia-trained staff - Assumption that relationship was good prior to dementia - 24 hr/day phone line NIHR SSCR ANNUAL CONFERENCE 2023 19/04/2023 TAILORING CARERS ASSESSMENTS IN NHS AND ADULT SOCIAL CARE TO THE NEEDS OF CARERS OF PEOPLE LIVING WITH DEMENTIA 7

8. CHALLENGES Carers status: citizens! May be vulnerable service users/but may not be. We are all patients but carers may not be active patients just because they care for a family member. Research governance and ethics often do not understand where they may fit into research, particularly as most research governance is configured around the NHS. Ethics approval: Intensely bureaucratic. 2/3 months preparation for a relatively simple, exploratory project. Internal university (for sponsorship), followed by HRA application for one NHS site (GP Practice) - a longer process than the research itself. Carers support: particularly with online/virtual research interviews/focus groups, completion of short questionnaires. Many needed help with Zoom/online technology but cannot assume that all will a need for researcher support to check this out. NIHR SSCR ANNUAL CONFERENCE 2023 19/04/2023 TAILORING CARERS ASSESSMENTS IN NHS AND ADULT SOCIAL CARE TO THE NEEDS OF CARERS OF PEOPLE LIVING WITH DEMENTIA 8

9. CONTACT PAUL.CLARSKON@MANCHESTER.AC.UK LUCIE.MILLS@MANCHESTER.AC.UK DISCLAIMER This presentation summarises independent research funded by the National Institute for Health and Care Research School for Social Care Research. The views expressed are those of the author(s) and not necessarily those of the NIHR SSCR, the NIHR or the Department of Health and Social Care. NIHR SSCR ANNUAL CONFERENCE 2023 19/04/2023 TAILORING CARERS ASSESSMENTS IN NHS AND ADULT SOCIAL CARE TO THE NEEDS OF CARERS OF PEOPLE LIVING WITH DEMENTIA 9