Resource allocation in dementia care: comparing the views of people with dementia, carers and health and social care professionals under constrained and unconstrained budget scenarios

Abstract

Background

People with dementia and their carers have a wide range of health and social care needs. People with dementia, carers and health and social care professionals (HSCPs) all have different perspectives on dementia care. Differences among these groups are important for commissioners of services and for front-line HSCPs.

Objective

To compare the service recommendations of people with dementia and carers with those of HSCPs, under different budgetary conditions.

Methods

A mixed-methods approach, which builds on the Balance of Care method, was used. Nine workshops were held with 41 participants from three groups: people with dementia, carers and HSCPs. Participants were asked to make decisions on a set of services for case types of dementia under two scenarios: a no budget constraint (NBC) scenario and a budget constraint (BC) scenario.

Results

While each group allocated resources in broadly similar overall proportions, important differences in emphasis emerged: (i) people with dementia and carers placed more emphasis on psychosocial supports than HSCPs; (ii) carers put more emphasis on respite opportunities for carers; and (iii) carers identified residential care as the most suitable setting for the person with dementia more frequently than health care professionals.

Conclusion

Our findings suggest that the importance of psychosocial interventions, including counselling and peer support programmes, are currently underestimated by HSCPs. The provision of in-home respite is highly valued by carers. Even with unconstrained resources, some carers do not judge home care to be a viable option for dementia case types with high-level care needs.

Keywords:

• Dementia
• Balance of Care
• budget experiment

Disclosure statement

The authors have no conflicts of interest.

Ethics

Ethical approval for the study was provided by the Research Ethics Committee of the National University of Ireland, Galway. Information sheets were given to all participants in advance of the workshops and again at the venue (the study was conducted pre-Covid), with opportunities to ask questions at all stages of the process. Signed consent was obtained from all participants.

Data availability statement

The data that support the findings of this study are available from the corresponding author, T.P., upon reasonable request.

Additional information

Funding

This study was part of a larger study funded under a Health Research Board Applied Partnership Award, grant no. APA-2016-1876, and the National Dementia Office.