Eliciting preferences of persons with dementia and informal caregivers to support ageing in place in the Netherlands: a protocol for a discrete choice experiment.

INTRODUCTION: Ageing in place (AIP) for persons with dementia is encouraged by European governments and societies. Healthcare packages may need reassessment to account for the preferences of care funders, patients and informal caregivers. By providing insight into people's preferences, discrete choice experiments (DCEs) can help develop consensus between stakeholders. This protocol paper outlines the development of a Dutch national study to cocreate a healthcare package design methodology built on DCEs that is person-centred and helps support informal caregivers and persons with dementia to AIP. A subpopulation analysis of persons with dementia with a migration background is planned due to their high risk for dementia and under-representation in research and care. METHODS AND ANALYSIS: The DCE is designed to understand how persons with dementia and informal caregivers choose between different healthcare packages. Qualitative methods are used to identify and prioritise important care components for persons with dementia to AIP. This will provide a list of care components that will be included in the DCE, to quantify the care needs and preferences of persons with dementia and informal caregivers. The DCE will identify individual and joint preferences to AIP. The relative importance of each attribute will be calculated. The DCE data will be analysed with the use of a random parameters logit model. ETHICS AND DISSEMINATION: Ethics approval was waived by the Amsterdam University Medical Center (W23_112 #23.137). A study summary will be available on the websites of Alzheimer Nederland, Pharos and Amsterdam Public Health institute. Results are expected to be presented at (inter)national conferences, peer-reviewed papers will be submitted, and a dissemination meeting will be held to bring stakeholders together. The study results will help improve healthcare package design for all stakeholders.

Important components for Dutch in-home care based on qualitative interviews with persons with dementia and informal caregivers.

BACKGROUND: Dementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs. OBJECTIVE: To identify important components of in-home care for persons with dementia and their informal caregivers in the Netherlands. DESIGN: Semi-structured interviews across the Netherlands, between March and June 2019 using thematic analysis. SETTING AND PARTICIPANTS: Persons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi-structured interviews findings. RESULTS: Five themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers. CONCLUSION: This study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.