Carer preferences for home support services in later stage dementia

Objectives: To examine the relative importance of different home support attributes from the perspective of carers of people with later-stage dementia.

Method: Preferences from 100 carers, recruited through carers’ organisations, were assessed with a Discrete Choice Experiment (DCE) survey, administered online and by paper questionnaire. Attributes were informed by an evidence synthesis and lay consultations. A conditional logit model was used to estimate preference weights for the attributes within a home support ‘package’.

Results: The most preferred attributes were ‘respite care, available regularly to fit your needs’ (coefficient 1.29, p = < 0.001) and ‘home care provided regularly for as long as needed’ (coefficient 0.93, p = < 0.001). Cost had a significant effect with lower cost packages preferred. Findings were similar regardless of the method of administration, with respite care considered to be the most important attribute for all carers. Carers reported that completing the DCE had been a positive experience; however, feedback was mixed overall.

Conclusions: These carer preferences concur with emerging evidence on home support interventions for dementia. Respite care, home care and training on managing difficulties provided at home are important components. Carers’ preferences revealed the daily challenges of caring for individuals with later stage dementia and the need for tailored and specialised home support.