Medicines management is known to be an integral part of the role of family caregivers; it also contributes to the burden and stress of caregivers' experience. As dementia progresses, new challenges arise as a consequence, which negatively affects the ability of people living with dementia (PLWD) regarding practical decision making and may lead to a change of setting. The aim of this study is to identify and explore changes in medicines management and associated caregiver burden as dementia progresses. To examine medicines management and related issues across severities, a qualitative approach utilising face-to-face and telephone interviews with PLWD and their family caregivers in both the community and care-home setting in London was used. Follow-up interviews with family caregivers were also conducted to gain additional insight into change over time. Eleven family caregivers, ten PLWD, and eight care-home staff were interviewed in 2016. Findings identified how key changes along dementia progression affect medication use. These include changes to caregiver burden, respecting the PLWD's autonomy and decline in capacity, scheduling and administration, choice of formulation, interactions with and between providers, and information needs. The findings assist in informing recommendations to optimise medication use and alleviate caregiver burden.
Keywords: caregivers; challenges; dementia; optimising medication use; qualitative; shared decision making.