Are we on the same page? Multiple stakeholders and service users priorities for dementia care and policy: A Delphi study

Abstract

Background It's crucial to develop a national policy for dementia due to the growing number of persons living with the condition and the attendant impact on individuals, families, and society at large. However, there has been limited exploration of the views on long-term goals for dementia of different stakeholders involved in different aspects of service use, planning or delivery. Objective This study aims to examine and compare the perceived priorities of service users (i.e., people living with dementia and their family caregivers) and other multiple stakeholders for dementia care and policy. Design Two independent Delphi studies were conducted in Hong Kong. Setting(s) and participants In Delphi study 1, 75 stakeholders were recruited from public and private nursing, medical and social care providers, philanthropic organizations, policy-makers and government sectors. In Delphi study 2, 45 people living with dementia and 55 family caregivers were recruited from community care settings. Methods The Delphi study 1 was conducted using online surveys, while the Delphi study 2 was conducted using phone interviews. Each Delphi study comprised a qualitative study for exploring the range of views of the two panels and a quantitative validation for generating consensus. We systematically compared the two panels' identified priorities in terms of contents and consensus levels. Results Multiple stakeholders identified 32 consensus-based statements and service users identified 25 statements, most of which achieved moderate to high level of consensus. Through content analysis, statements from the two panels were converged into six common themes: (1) early prevention, detection and referral systems for dementia, (2) care and intervention services, (3) health and social care workforce capacity building within and across service sectors, (4) supportive services for family caregivers, (5) development of longer-term dementia service planning and a policy framework, and (6) promotion of a dementia-friendly community. Despite the similarity of the themes expressed by the two panels, critical comparison of their priorities identified the dementia service and policy gaps in providing integrated and informed healthcare, a mechanism for sensitive care allocation, enabling seamless social inclusion, and proactive health orientation of dementia caregivers. Conclusions Discrepancies between two panels reflect the distinctive value of service user engagement in the policy-making process. Our findings have implications for developing a multi-disciplinary integrated action plan for the local health response across the primary and secondary care settings to dementia and expanding the practice scope of person-centered dementia care in a collaborative way.