Rapid development of a decision-aid for people with dementia and their families during COVID-19

Abstract

Introduction

COVID-19 as a pandemic has disproportionately affected older adults, including those with dementia. The effects on health and social care systems has 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. In light of this, a decision-making tool to help families of persons with dementia was developed using a combination of qualitative data and evidence synthesis.

Objectives

To develop a decision-aid using a combination of assessment and evidence-gathering methods for families of persons with dementia.

Methods

Semi-structured interviews with helpline staff from national end-of-life and supportive care organisations formed the basis of the tool design. Co-design with people living with dementia, current and former carers and experts in general practice and social care shaped the next stage. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken.

Results

Output from interviews covered many topics, including trust, agency and confusion in making decisions in the context of COVID-19. The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision-making.

Conclusions

Combining different sources and forms of evidence was efficient and valuable in creating a novel decision-making tool for persons with dementia and their families within the context of COVID-19. The decision-aid covered care planning, caregiver support systems, access to information and contingency considerations. Upon publication, the tool was adopted by NHS England and other leading healthcare organisations.

Disclosure

No significant relationships.