Supporting medicines optimisation for people living with dementia: exploring communication between informal carers and people living with dementia in the context of polypharmacy
Award Number
NIHR300559Award Type
FellowshipProgramme
HEE/NIHR Integrated Clinical Academic ProgrammeStatus / Stage
ActiveDates
1 April 2020 -1 April 2023
Duration (calculated)
03 years 00 monthsFunder(s)
NIHRFunding Amount
£386,794.00Funder/Grant study page
NIHRContracted Centre
Queen Mary University of LondonPrincipal Investigator
Ms Lucie HoggerPI Contact
l.hogger@qmul.ac.ukWHO Catergories
Methodologies and approaches for risk reduction researchDisease Type
Dementia (Unspecified)CPEC Review Info
| Reference ID | 484 |
|---|---|
| Researcher | Reside Team |
| Published | 29/06/2023 |
Data
| Award Number | NIHR300559 |
|---|---|
| Status / Stage | Active |
| Start Date | 20200401 |
| End Date | 20230401 |
| Duration (calculated) | 03 years 00 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | Queen Mary University of London |
| Funding Amount | £386,794.00 |
Abstract
People with dementia (PwD) who experience polypharmacy often require support to take medicines optimally. Research has shown that carers (family and friends) of PwD provide substantial support with administering and monitoring medicines, involving daily and often difficult negotiations with the PwD. Communication skills have been shown to be crucial in negotiating medicines taking in interactions between healthcare professionals and PwD in hospital. Research is needed to explore similar interactions between carers and PwD at home. Analysis of findings will inform development of resources to support safe, ethical and effective medicines use for PwD and reduce carer burden. Aims To improve medicines optimisation for PwD by: 1: Conducting in-depth analysis of interactions occurring in the home between PwD and their carers when they talk about and manage medicines; 2. Identifying carer communication behaviours (questions, requests, negotiations etc) which support optimal medicines taking by PwD 3. Illuminating how taking multiple medicines is experienced by PwD 4. Building detailed case studies and integrating these into patient and carer resources to inform medicines optimisation for PwD 5. Working with established networks to disseminate findings, patient and carer resources and learning materials Research questions 1. How do PwD and their carers communicate about medicines at home? 2. How and to what extent do PwD-carer interactions support or inhibit medicines optimisation? 3. How is taking multiple medicines experienced by the PwD? 4. How can insights from detailed patient-carer case studies inform improvements in medicines optimisation for PwD? Methods A longitudinal in-depth qualitative study combining observational data, naturally occurring conversations and data generated from participant diaries and interviews. 24 participants, consisting of 12 PwD who take 5 or more medicines and their 12 carers, will be observed over 10-12 months in the home environment. Interactions when participants talk about or use medicines will be video-recorded. Digital recordings will be made by the researcher, or by trained carer-participants, and analysed using Conversation Analysis. I will support PwD to keep verbal, written or photo diaries then conduct individual interviews using the diaries as prompts to discuss feelings, thoughts and beliefs about medicines use. I will integrate data from observations, conversations, diaries and interviews in a narrative synthesis. My analysis will be informed by Burden of Treatment Theory, focusing on the ‘work’ that patients and carers do as they engage in healthcare treatment.Impact on patients and NHSThis research will: Identify evidence-based strategies to improve medicines conversations in the home and avoid interactional ‘troubles’ between PwD and carers Make patient and carer ‘treatment burden’ visible by showing the interactions involved in medicines practices. Findings will highlight where burdens can be reduced in ways that are acceptable to PwD, carers and professionals Develop and disseminate resources to support conversations about medicines optimisation between professionals and PwD, illustrated with case studies Improve carer experience by providing carers with strategies to manage negotiations around medicines
Plain English Summary
570-600,000 people with dementia (PwD) live in their own homes in the UK. Many have support from informal carers, such as a partner or children. PwD are often prescribed many medicines and need help with these from their carer. Research from interviews with carers shows that managing medicines can be a significant source of conflict and worry. Recent research in a hospital analysed video recordings of interactions between professionals and PwD. They showed that the ways in which professionals requested PwD to take medicines made a difference to whether or not they were taken. In this study I will spend time with PwD and their carers at home, observing how they talk about medicines and how they manage medicines together. My analysis of this communication will inform the development of training materials to improve conversations about medicines, supporting PwD and their carers in safe and effective medicines use. AimsTo build a detailed picture of ‘communication about medicines’ and improve patient care by: Exploring how PwD and carers communicate about medicines and how these conversations influence medicines taking; Following PwD and their carers over time, to understand their experience of taking multiple medicines; Identifying approaches to communication which support optimum medicines use; Developing resources for carers and professionals to help them communicate effectively about medicines. Study design and methods I will use observations, video-recordings and data generated from diaries and interviews to explore medicines use in the home. I will visit 24 people (12 pairs of PwD and their carers) at home over 10-12 months, observing how they manage medicines and video-recording their interactions when they talk about and take medicines. Recordings will be made by me, or by trained carer-participants using iPads. I will also support PwD to record their feelings and experiences of medicines using a combination of spoken, written and photo diaries, then talk to them about their diaries. I will analyse data from recordings to identify communication approaches which best support PwD and their carers to have effective conversations around medicines. I will also combine data collected from diaries and interviews to build rich stories showing the medicines experiences of PwD. Patient and public involvementThe James Lind Alliance has identified that a key priority in dementia research is finding ways of helping PwD be as independent as possible. Safe and effective medicines use at home is a crucial element of maintaining independence. I have improved my project by discussing it with PwD and carers at a discussion group and dementia support groups. For example, PwD highlighted that some crucial medicines interactions may take place late at night so I adapted the protocol to include these (see Project Plan) A lay research panel also gave me feedback on my ideas. My study advisory panel will include PwD and carers to advise on how the study is carried out, including analysis and sharing the results. Outputs Resources for carers, PwD and professionals showing helpful communication strategies, including short films (played by actors) and written resources. These will be freely available on the internet. Anonymised case studies showing the range of medicines experiences of PwD. I will work with established networks (Alzheimer’s UK, Opening Doors London) to make these available via the internet, social media and community events as well as academic journals and conferences. Regular updates on a dedicated page on the APOLLO-MM study website (www.polypharmacy.org.uk) Talks and presentations of findings at community dementia groups.
Aims
To improve medicines optimisation for PwD by: 1: Conducting in-depth analysis of interactions occurring in the home between PwD and their carers when they talk about and manage medicines; 2. Identifying carer communication behaviours (questions, requests, negotiations etc) which support optimal medicines taking by PwD 3. Illuminating how taking multiple medicines is experienced by PwD 4. Building detailed case studies and integrating these into patient and carer resources to inform medicines optimisation for PwD 5.