Medicines management issues in dementia and coping strategies used by people living with dementia and family carers: A systematic review

Abstract

ObjectivesMedicines play a key role in the lives of people with dementia, primarily to manage symptoms. Managing medicines is complex for people with dementia and their family carers and can result in multiple problems leading to harm. We conducted a systematic review to identify and model medication issues experienced and coping strategies used by people with dementia and/or family carers.MethodsEleven general databases and four systematic review databases were searched. Studies were quality assessed using an established framework and thematically analysed.ResultsTwenty‐one articles were included in this study, and four domains affecting medication use were identified: cognitive, medication, social and cultural, and knowledge/educational and communication. People with dementia reported medication issues in all four domains, but few coping strategies were developed. Family carers reported issues and coping strategies related to the medication and knowledge/educational and communication domains. Common issues with regards to knowledge and communication about medicines remain unresolved. The “voices” of people with dementia appeared largely missing from the literature so were in‐depth understanding of how, whether, and in which circumstances coping strategies work in managing medicines.ConclusionsMedicines management is a complex set of activities and although current coping strategies exists, these were primarily used by family carers or the person with dementia‐carer dyad. Health and social care practitioners and researchers should seek to understand in‐depth the “mechanisms of action” of existing coping strategies and actively involve people with dementia as co‐producers of knowledge to underpin any further work on medicines management.

Evaluation of Carer Strain and Carer Coping with Medications for People with Dementia after Discharge: Results from the SMS Dementia Study

“…Some carers also described needing to know specific information such as when to withhold medications and how to recognise side effects and adverse effects of medication, and these needs have been reported in previous studies [ 6 , 17 , 28 ]. Medication changes and complexity, and behavioural problems of people with dementia have also been identified in previous studies as important issues for carers that may contribute to poor therapeutic outcomes for people with dementia, and health professionals may be unaware of this burden [ 6 , 17 , 18 ].…”

“…These issues included not having sufficient information about medications, problems with different packaging and opening medication packages, difficulty cutting/crushing tablets, not using DAAs, complex medication regimes, and monitoring and managing side effects and outcomes of medication errors. Previous studies have reported similar issues for carers involved in managing medications including challenges with maintaining medication supplies (obtaining prescriptions, collecting medications, transport, monitoring supply, access, waiting times, delays, follow up regarding medication details and errors, and medication vigilance), medication administration (packaging issues, reminding people with dementia to take medications, scheduling, cutting tablets, helping with eye drops and creams, uncooperative people with dementia, adapting to medication changes, and the number and frequency of medications), and overall supervision and vigilance of medicine use [17,18,28].…”

Impacts of a multicomponent intervention programme on neuropsychiatric symptoms in people with dementia and psychological health of caregivers: A feasibility pilot study

“…One of the features of the programme was combining the knee OA‐specific self‐management support with physical exercise. Dementia caregivers reported that one of the difficulties in taking care of PWD is the lack of knowledge, education, information, and support in managing dementia‐related problems . The problem usually becomes more serious as dementia becomes worse.…”

“…Dementia caregivers reported that one of the difficulties in taking care of PWD is the lack of knowledge, education, information, and support in managing dementia-related problems. 42,43 The problem usually becomes more serious as dementia becomes worse. By completing this programme with the PWD, the caregivers received comprehensive caregiving information, techniques, and skills-based training to better understand the pain behaviour of the PWD to self-manage knee OA.…”

Managing medicines in the time of COVID-19: implications for community-dwelling people with dementia

“…The issue of medicines management for PwD raises complex and unique challenges for both patients and carers [8,9], and has received limited attention within the scientific literature in the past [10]. We would propose that the current restrictions may only further complicate this.…”