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Development of a resource use measure to capture costs related to unpaid care for people living with non-memory led dementia: a modified Delphi study

Katherine Cullen Orcid Logo, Emilie V. Brotherhood, Oliver Hayes, Valerie Mansfield, Aida Suarez-Gonzalez, Nikki Zimmermann, Joshua Stott, Deborah Fitzsimmons Orcid Logo

BMJ Open, Volume: 16, Issue: 2

Swansea University Authors: Katherine Cullen Orcid Logo, Deborah Fitzsimmons Orcid Logo

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DOI (Published version): 10.1136/bmjopen-2025-110399

Abstract

Objectives To determine the personal, National Health Service and wider societal resource use in relation to caring responsibilities for carers of people living with non-memory led dementias (NMLDs); and to design a resource use measure (RUM) that can be delivered in the Better Living with Non-memor...

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Published in: BMJ Open
ISSN: 2044-6055
Published: BMJ Publishing Group Ltd 2026
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URI: https://cronfa.swan.ac.uk/Record/cronfa71327
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If no measures were identified, the second stage was initial informal discussions with healthcare professionals (HCPs) and the programme patient and public involvement representatives to inform the perspective, settings of care and main resource items to develop a new RUM. In the third stage, a first draft of the RUM was tested for content and face validity in a modified Delphi study comprising HCPs and carers. The measure was revised and, in the final stage, piloted in the first 3&#x2009;months of the BELIDE trial to assess acceptability and feasibility of collecting the economic outcomes and the completeness of data collection. The key drivers of resource use and costs were assessed, and appropriate face validity checks were applied to ensure accurate description of the treatment pathways.Participants and setting Carers and family of people living with NMLD recruited from Rare Dementia Support members in the UK, and a broad range of HCPs with experience of working with people who have NMLD to capture the different dimensions of experience, grade and skill mix.Results In total, 20 people participated in the modified Delphi study, 11 HCPs and 9 carers. Rare Dementia Support groups and 1:1 calls were highly rated, as were general practitioner appointments. The greatest consensus was in the productivity and carer tasks; all caring tasks were highly rated. Healthcare practitioners rated healthcare items as higher importance than carers themselves.Conclusions Unpaid carers and HCPs are the experts in the resource impact of caring for someone with NMLD and have been underserved in research to date. 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spelling 2026-02-16T11:08:37.8509876 v2 71327 2026-01-28 Development of a resource use measure to capture costs related to unpaid care for people living with non-memory led dementia: a modified Delphi study 9ddf9fac6330356b51fbb9f38fd6081f 0000-0002-3704-4598 Katherine Cullen Katherine Cullen true false e900d99a0977beccf607233b10c66b43 0000-0002-7286-8410 Deborah Fitzsimmons Deborah Fitzsimmons true false 2026-01-28 HSOC Objectives To determine the personal, National Health Service and wider societal resource use in relation to caring responsibilities for carers of people living with non-memory led dementias (NMLDs); and to design a resource use measure (RUM) that can be delivered in the Better Living with Non-memory-led Dementia (BELIDE) randomised controlled trial, part of the Rare Dementia (RD) - TALK research programme.Design The first stage was to identify and review any existing RUMs that could be used or adapted to the trial population and setting. If no measures were identified, the second stage was initial informal discussions with healthcare professionals (HCPs) and the programme patient and public involvement representatives to inform the perspective, settings of care and main resource items to develop a new RUM. In the third stage, a first draft of the RUM was tested for content and face validity in a modified Delphi study comprising HCPs and carers. The measure was revised and, in the final stage, piloted in the first 3 months of the BELIDE trial to assess acceptability and feasibility of collecting the economic outcomes and the completeness of data collection. The key drivers of resource use and costs were assessed, and appropriate face validity checks were applied to ensure accurate description of the treatment pathways.Participants and setting Carers and family of people living with NMLD recruited from Rare Dementia Support members in the UK, and a broad range of HCPs with experience of working with people who have NMLD to capture the different dimensions of experience, grade and skill mix.Results In total, 20 people participated in the modified Delphi study, 11 HCPs and 9 carers. Rare Dementia Support groups and 1:1 calls were highly rated, as were general practitioner appointments. The greatest consensus was in the productivity and carer tasks; all caring tasks were highly rated. Healthcare practitioners rated healthcare items as higher importance than carers themselves.Conclusions Unpaid carers and HCPs are the experts in the resource impact of caring for someone with NMLD and have been underserved in research to date. This research, as part of preparatory stages of the BELIDE trial, has enabled the timely development of a comprehensive and valid RUM for unpaid carers of people with NMLD. Journal Article BMJ Open 16 2 BMJ Publishing Group Ltd 2044-6055 12 2 2026 2026-02-12 10.1136/bmjopen-2025-110399 COLLEGE NANME Health and Social Care School COLLEGE CODE HSOC Swansea University SU Library paid the OA fee (TA Institutional Deal) National Institute for Health and Care Research (NIHR) - NIHR203680 2026-02-16T11:08:37.8509876 2026-01-28T09:37:07.4527446 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health Katherine Cullen 0000-0002-3704-4598 1 Emilie V. Brotherhood 2 Oliver Hayes 3 Valerie Mansfield 4 Aida Suarez-Gonzalez 5 Nikki Zimmermann 6 Joshua Stott 7 Deborah Fitzsimmons 0000-0002-7286-8410 8 71327__36233__9f78d4358c7d45a48c066e16faf2baeb.pdf 71327.VoR.pdf 2026-02-16T11:03:03.4898633 Output 454985 application/pdf Version of Record true © Author(s) (or their employer(s)) 2026. This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license. true eng https://creativecommons.org/licenses/by/4.0/
title Development of a resource use measure to capture costs related to unpaid care for people living with non-memory led dementia: a modified Delphi study
spellingShingle Development of a resource use measure to capture costs related to unpaid care for people living with non-memory led dementia: a modified Delphi study
Katherine Cullen
Deborah Fitzsimmons
title_short Development of a resource use measure to capture costs related to unpaid care for people living with non-memory led dementia: a modified Delphi study
title_full Development of a resource use measure to capture costs related to unpaid care for people living with non-memory led dementia: a modified Delphi study
title_fullStr Development of a resource use measure to capture costs related to unpaid care for people living with non-memory led dementia: a modified Delphi study
title_full_unstemmed Development of a resource use measure to capture costs related to unpaid care for people living with non-memory led dementia: a modified Delphi study
title_sort Development of a resource use measure to capture costs related to unpaid care for people living with non-memory led dementia: a modified Delphi study
author_id_str_mv 9ddf9fac6330356b51fbb9f38fd6081f
e900d99a0977beccf607233b10c66b43
author_id_fullname_str_mv 9ddf9fac6330356b51fbb9f38fd6081f_***_Katherine Cullen
e900d99a0977beccf607233b10c66b43_***_Deborah Fitzsimmons
author Katherine Cullen
Deborah Fitzsimmons
author2 Katherine Cullen
Emilie V. Brotherhood
Oliver Hayes
Valerie Mansfield
Aida Suarez-Gonzalez
Nikki Zimmermann
Joshua Stott
Deborah Fitzsimmons
format Journal article
container_title BMJ Open
container_volume 16
container_issue 2
publishDate 2026
institution Swansea University
issn 2044-6055
doi_str_mv 10.1136/bmjopen-2025-110399
publisher BMJ Publishing Group Ltd
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Public Health{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Public Health
document_store_str 1
active_str 0
description Objectives To determine the personal, National Health Service and wider societal resource use in relation to caring responsibilities for carers of people living with non-memory led dementias (NMLDs); and to design a resource use measure (RUM) that can be delivered in the Better Living with Non-memory-led Dementia (BELIDE) randomised controlled trial, part of the Rare Dementia (RD) - TALK research programme.Design The first stage was to identify and review any existing RUMs that could be used or adapted to the trial population and setting. If no measures were identified, the second stage was initial informal discussions with healthcare professionals (HCPs) and the programme patient and public involvement representatives to inform the perspective, settings of care and main resource items to develop a new RUM. In the third stage, a first draft of the RUM was tested for content and face validity in a modified Delphi study comprising HCPs and carers. The measure was revised and, in the final stage, piloted in the first 3 months of the BELIDE trial to assess acceptability and feasibility of collecting the economic outcomes and the completeness of data collection. The key drivers of resource use and costs were assessed, and appropriate face validity checks were applied to ensure accurate description of the treatment pathways.Participants and setting Carers and family of people living with NMLD recruited from Rare Dementia Support members in the UK, and a broad range of HCPs with experience of working with people who have NMLD to capture the different dimensions of experience, grade and skill mix.Results In total, 20 people participated in the modified Delphi study, 11 HCPs and 9 carers. Rare Dementia Support groups and 1:1 calls were highly rated, as were general practitioner appointments. The greatest consensus was in the productivity and carer tasks; all caring tasks were highly rated. Healthcare practitioners rated healthcare items as higher importance than carers themselves.Conclusions Unpaid carers and HCPs are the experts in the resource impact of caring for someone with NMLD and have been underserved in research to date. This research, as part of preparatory stages of the BELIDE trial, has enabled the timely development of a comprehensive and valid RUM for unpaid carers of people with NMLD.
published_date 2026-02-12T05:25:39Z
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