Desired dementia care towards end of life: Development and experiences of implementing a new approach to improve person‐centred dementia care

Author:

Biesmans Jesper M. A.123ORCID,Bolt Sascha R.4ORCID,Janssen Daisy J. A.125,Wintjens Toon1,Khemai Chandni12,Schols Jos M. G. A.12,Van Der Steen Jenny T.678ORCID,Zwakhalen Sandra M. G.12ORCID,Meijers Judith M. M.123ORCID

Affiliation:

1. Department of Health Services Research Maastricht University, Care and Public Health Research Institute Maastricht The Netherlands

2. Living Lab for Aging and Long‐Term Care Limburg, Department of Health Services Research Maastricht University Maastricht The Netherlands

3. Zuyderland Medical Center Sittard‐Geleen The Netherlands

4. Tranzo, Tilburg School of Social and Behavioral Sciences Tilburg University Tilburg The Netherlands

5. Department of Family Medicine, Care and Public Health Research Institute, Faculty of Health, Medicine and Life Sciences Maastricht University Maastricht The Netherlands

6. Department of Public Health and Primary Care Leiden University Medical Center Leiden The Netherlands

7. Department of Primary and Community Care Radboud University Medical Center Nijmegen The Netherlands

8. Radboudumc Alzheimer Center Radboud University Medical Center Nijmegen The Netherlands

Abstract

AbstractAimsTo describe the co‐creation of the ‘Desired Dementia Care Towards End of Life’ (DEDICATED) approach to improve person‐centred palliative care for individuals with dementia and to describe the experiences of healthcare professionals during the approach's implementation.MethodsA needs assessment, comprising both qualitative and quantitative studies, informed palliative care needs of healthcare professionals, family caregivers and individuals with dementia. The approach was co‐created with healthcare and education professionals, guided by the findings. Then, healthcare professionals were trained to implement the approach in their organizations. From April to June 2022, semi‐structured interviews with actively engaged professionals were analysed using Conventional Content Analysis.ResultsThe needs assessment yielded six key themes: (1) raising palliative care awareness, (2) familiarization with a person with dementia, (3) communication about future care preferences, (4) managing pain and responsive behaviour, (5) enhancing interprofessional collaboration in advance care planning and (6) improving interprofessional collaboration during transitions to nursing homes. Interviews with 17 healthcare professionals revealed that active involvement in co‐creating or providing feedback facilitated implementation. Overall, the DEDICATED approach was perceived as a valuable toolkit for optimizing palliative care for people with dementia and their loved ones.ConclusionCo‐creating the DEDICATED approach with healthcare professionals facilitated implementation in daily practice. The approach was considered helpful in enhancing person‐centred palliative dementia care.Impact StatementThis study underscores the importance of active involvement of healthcare professionals in the research and development of new interventions or tools for palliative care, which can influence the successful implementation, dissemination and sustained usage of the developed tools.Implications for the Profession and Patient CareThe developed approach can improve person‐centred palliative care for individuals with dementia, ultimately improving their quality of life and that of their loved ones.Reporting MethodThis study used the Consolidated Criteria for Reporting Qualitative Research.Patient of Public ContributionNo patient or public contribution.

Funder

ZonMw

Publisher

Wiley

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