Abstract

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.

Highlights

  • There are approximately 850,000 people living with dementia (PLWD) in the UK, and these numbers are predicted to increase to 2 million by 2051 [1]

  • Nine dyads (PLWD and their family caregiver), two family caregivers, and one PLWD were interviewed from the community setting

  • Ten family caregivers and one PLWD agreed to the follow-up interview via telephone

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Summary

Introduction

There are approximately 850,000 people living with dementia (PLWD) in the UK, and these numbers are predicted to increase to 2 million by 2051 [1]. Primary Care Networks (PCNs) were formed as part of the NHS long-term plan, with each network comprising general practices and other local health and social care workers to provide an integrated multidisciplinary approach within a specific geographical location This includes a pro-active approach with healthcare professional teams on hand, enabling people to live independently at home for longer, supporting people to age well and improving recognition of caregivers and the support they need. Structured medication reviews (SMRs) and medicines optimisation services were officially implemented from October 2020 under the PCN Contract-Directed Enhanced Services (DES) [6] These target specific patient groups in the community with medication-related needs, including those residing within care homes

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