Rapid development of a COVID‐19 care planning decision‐aid for family carers of people living with dementia

• Published in: Health expectations : an international journal of public participation in health care and health policy 2022-08, Vol.25 (4), p.1954-1966
• Main Authors: West, Emily, Nair, Pushpa, Aker, Narin, Sampson, Elizabeth L., Moore, Kirsten, Manthorpe, Jill, Rait, Greta, Walters, Kate, Kupeli, Nuriye, Davies, Nathan
• Format: Article
• Language: English
• Subjects: Access to information; Advance directives; Aged; Care plans; Caregivers; Charity; Citizen participation; Confusion; Context; coproduction; Coronaviruses; COVID-19; Decision Making; Decisions; Dementia; Dementia - therapy; Dementia disorders; Dissemination; End of life; End of life decisions; End users; engagement; Experts; Families & family life; Health care; Health services; Humans; Interviews; Medical decision making; Minority & ethnic groups; Older people; Organizations; Original; Palliative care; Pandemics; Patients; Public involvement; Reflexivity; Responsiveness; Social interest; Social services; Social systems; Stakeholders; Taxonomy; Verbal communication; Well being; Workshops
• ISSN: 1369-6513; 1369-7625
• DOI: 10.1111/hex.13552

Introduction COVID‐19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid‐response approach to care planning and decision‐making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. Considering this, a decision‐aid to help families of persons with dementia was developed. Objectives To coproduce with people living with dementia, and the people who care for them, a decision‐aid for family carers of people living with dementia, to support decisions during the COVID‐19 pandemic and beyond. Methods Semi‐structured interviews were undertaken in 2020 with: (1) staff from two English national end‐of‐life and supportive care organizations; and (2) people living with dementia and family carers. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Evidence from these inputs was combined to shape the decision‐aid through a series of workshops with key stakeholders, including our patient and public involvement group, which consisted of a person living with dementia and family carers; a group of clinical and academic experts and a group of policy and charity leads. Results The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision‐making and their effects on people living with dementia and their families. The qualitative interviews discussed a wide range of topics, including trust, agency and confusion in making decisions in the context of COVID‐19. The decision‐aid primarily focussed on care moves, legal matters, carer wellbeing and help‐seeking. Conclusions Combining different sources and forms of evidence was a robust and systematic process that proved efficient and valuable in creating a novel decision‐aid for family carers within the context of COVID‐19. The output from this process is an evidence‐based practical decision‐aid coproduced with people living with dementia, family carers, clinical and academic experts and leading national dementia and palliative care organizations. Patient or Public Contribution We worked with people living with dementia and family carers and other key stakeholders throughout this study, from study development and design to inclusion in stakeholder workshops and dissemination.