Abstract

Objectives: In England and other countries, unpaid carers of people with dementia have been shown to carry the largest share of societal cost. These estimates are frequently derived from questionnaires eliciting the time unpaid carers spend on specific care tasks. Only rarely, however, is this information used to explore what factors influence the time carers are willing and/or able to commit.

Methods: The MODEM cohort, a study following 300 people with dementia and their carers in England, collected detailed information on how much time carers spent on tasks falling under the frequently used categories of Activities of Daily Living (ADL), Instrumental Activities of Daily Living (IADL) and supervision using an amended version of the Resources Utilisation in Dementia questionnaire. We conducted cross-sectional analysis exploring carer and care recipient characteristics as well as few situational characteristics, such as sleep disruption due to care needs or the receipt of care support, to better understand factors influencing time spent on ADLs, IADLs and supervision as well as total time spent caring using negative binomial regression analysis.

Results: Multivariate analysis showed that female carers in this study were significantly more likely to spend a greater amount of time on ADL and IADL activities than their male counterparts. Relationship to the care recipient as well as co-residence were additional characteristics influencing time commitment for some of the measures. Furthermore, carer sleep-disruption due to care needs, employment and receipt of support showed significant associations with some of the grouped care tasks investigated. The results of this study were contrasted with the limited existing literature from other countries, highlighting differences and similarities.

Conclusions: While no direct policy messages can be drawn from such explorative analysis, the literature on factors influencing time spent on unpaid care can provide important insights on the patterns of care different groups provide and contribute to an understanding of how policy could best support and meet the needs of the diverse set of people making up the people providing unpaid care for people with dementia.