People with dementia and carer preferences for home support services in early-stage dementia

Objectives. With population ageing, dementia is a significant public health and care challenge. The immediate priority is to help those with dementia, and their carers, to live well through appropriate interventions. Since around 60 per cent of those with dementia live at home, evidence as to preferences for home-based support are needed as a prelude to effectiveness evidence. The objective was to examine patients’ and carers’ preferences for different attributes of home support in early stage dementia to build on the paucity of evidence in this area. Method. Preferences from 44 patients and 103 carers, recruited through memory clinics and an on-line questionnaire, were assessed with a Discrete Choice Experiment survey, with attributes informed by an evidence synthesis and lay consultation. A conditional logit model was used to estimate preference weights for the attributes within a home support ‘package’. Results. The most preferred attributes were support with personal feelings and concerns, provided by a trained counsellor at home (coefficient 0.67, p=<0.001) and information on coping with dementia, provided by an experienced worker at home (coefficient 0.59, p=<0.001). However, for patients, opportunities for social and recreational activities were considered the most important (coefficient 0.48, p=<0.001). Conclusions. These patient and carer preferences for home support concur with emerging evidence on psychosocial interventions in dementia. Support with personal feelings, information and social engagement are important components. Additionally, knowledge of patients’ and carers’ preferences can identify other attributes that may be important to effectiveness in ‘living well’ but for which there remains limited evidence.