Coproducing an evaluation of a dementia education programme for family carers

Providing education and support to family carers of people with dementia is advocated in dementia policies across the globe. Family carers of people with dementia receive variable support and often little education to enable them to sustain family caring. An international review of dementia education standards found family carer education to be absent. Although several types of educational interventions have been piloted, few are co-produced with family carers or encompass skills-based education to support them with the complex and progressive changes that dementia brings.

This study took a multi-method approach following a three-phase co-production framework, with family carers co-designing the evaluation. The aims were to assess whether the Carers’ Academy, a skills-based education programme delivered by a university, NHS and third sector partnership, improved carer wellbeing. It also measured the extent to which carers felt they had increased their dementia knowledge and developed practical care skills. Family carers participating in the Carers’ Academy were invited to complete Part B of the psychometric validated Carer Wellbeing and Support Scale (CWS) pre, and six weeks post programme participation, and a co-designed questionnaire immediately after participation. The Carers’ Academy is a unique intervention, and findings demonstrated it made a statistically significant impact on family carers perceptions of wellbeing and an improvement their dementia knowledge and care skills. This paper describes the methodological process of involving family carers of people with dementia in a process of cooperative enquiry to co-design an evaluation.

By doing so it contributes to the scare literature documenting the involvement of family carers of people with dementia in research and evaluation. Family carers need tailored, effective dementia education and, as experts by experience, should be supported to have their voices heard not only as participants in research but also as co-researchers.