Dementia and Cognitive Impairment
This information is for the qualitative part of the ‘DCPharm’ study that focuses on speaking to people living with dementia and carers of dementia.
Overview of the studyThe study focuses on people’s experiences of living with dementia (i.e., diagnosed with dementia) and carers of dementia. We want to find out more about people’s experiences of working with a pharmacist that they have accessed through their doctors’ surgery. These pharmacists are known as ‘clinical pharmacists’ and they have a different role to a pharmacist in a local chemist/pharmacy. We want to find out how clinical pharmacists have helped support people living with dementia and their carers.
What is a clinical pharmacist?A clinical pharmacist is a pharmacist who you can access through your doctors’ surgery, usually following a referral from your doctor. They have a different role to pharmacists that work in a local chemist/pharmacy. Clinical pharmacists are known as medication specialists and can review the medication you are taking, check if you are taking more medication than needed, and in some cases, stop some medications or prescribe new drugs. A clinical pharmacist can answer questions about medication and also signpost to other support which may be community-based. They may also ask your doctor to refer you to another specialist.
Funding and timelineThe research costs for the qualitative study are funded by the NIHR School for Primary Care Research (SPCR). Recruitment to the study began in July 2022 and is expected to be completed by 31st December 2023. This study has been approved by the UCL REC 3344/006.
Get involved in our studyWe are now looking for people to take part in our study! We are looking to speak to people living with dementia and carers of dementia, who have seen a pharmacist at their doctors’ surgery (or another primary care setting such as a care home), to take part in an interview.
Interviews will last up to 60 minutes and can be done online (e.g. MS Teams/Zoom), over the phone, or in-person. There is a £20 voucher for people taking part in an interview.
Who can take part?Please have a look at the recruitment flyers below that provide more information about who can take part in the study:
If you are a person living with dementia, please click here for the flyer.
If you identify as being a carer for someone with dementia, either a family member or close friend (current or past experience), please click here for the flyer.
If you would like to know more about the study or are interested in taking part, please contact Alice Burnand by email a.burnand@ucl.ac.uk or telephone on 07469 273849.
Chief Investigator: Sarah Griffiths s.a.griffiths@ucl.ac.uk
Start date: 02/01/2024
Finish date: 31/12/2026
Main aim of the projectThis project aims to develop an evidence-based training and guidance toolkit, of communication strategies for facilitating personalised dementia care planning conversations. This will support allied primary care workforce (e.g., social prescribers, dementia advisors, care coordinator, health and wellbeing coaches) to work alongside GPs to deliver personalised, holistic care planning.
BackgroundEveryone living with dementia should have a personalised care plan (NHS England, 2017). The plan needs to say what health and social care support should be put in place and how it will be put in place. ‘Personalised’ means that the plan is made with the person with dementia, based on what matters most to them. In primary care (healthcare provided in the community), GPs should create care plans with people living with dementia in ‘Annual Dementia Reviews,’ but we know these rarely happen. When reviews do happen, they are often not ‘personalised,’ and may not even involve the person living with dementia themselves.
NHS England recommends that Annual Dementia Reviews should no longer be carried out just by GPs. This should be shared amongst the wider team in primary care. This could include staff such as Social Prescribers, Dementia Advisors, Care Co-ordinators and Health and Wellbeing Coaches. These ‘allied’ primary care staff offer social and community-based support, allowing people to maintain strengths and explore new opportunities for life activities. This work still usually happens separately to the Annual Dementia Review, despite calls for more task sharing. There is a great opportunity for these two types of care planning to be more joined up. This would lead to better conversations about the relationship between people’s health and social needs and how staff can work together to address those needs.
However, there are two important communication challenges to overcome for this joined-up approach to work:
Many primary care teams are unsure about how best to work with each other, the person living with dementia and carer, to jointly develop a care plan and share patient records with each other. Allied primary care staff lack confidence in having personalised care planning conversations with people living with dementia and often ‘just speak with the carer.’ Conversations about life activities are not always culturally aware or fitted to their interests. The conversations can feel like a ‘rigid tick-box’ ‘one size fits all’ approach.
There is a lack of training to support the allied primary care workforce in finding out what really matters to people, how to create culturally appropriate care plans and how to balance the needs of people living with dementia and carers.
Study MethodsThis three-year project will take place in London and Devon, and has six overlapping workstreams:
Workstream 1 (Months 0-6) – Reviewing published evidence about the challenges of delivering personalised dementia care and support. This will help identify possible elements of good practice. It will also help to inform later workstreams.
Workstream 2 (Months 7-22) – Interview study: Up to 50 interviews with people living dementia, carers, Social Prescribers, Dementia Advisors, Care Co-ordinators, Health and Wellbeing Coaches, GPs and practice nurses to find out about their experiences of personalised care planning conversations.
Workstream 3 (Months 7-22) – Observation study: Up to 20 video recordings of real personalised care planning conversations between people with dementia and allied primary care staff across both sites. Conversation Analysis will be used. This work will help us understand what verbal and non-verbal communication behaviours work well/less well, for finding out what matters to people living with dementia and carers.
Workstream 4 (Months 23-30)– Developing the toolkit. In workshops people with dementia, carers and practitioners will use knowledge from workstreams 1,2 and 3 to design the training toolkit together.
Workstream 5 (Months 31-32) - Testing out the resources. Six allied primary care staff will try out the toolkit in real-life practice. They will provide feedback on how easy to use and helpful the resources were. Based on this feedback, final changes will be made to the training toolkit.
Workstream 6 (Months 0-36) Ongoing Dissemination about the project and the findings throughout the whole 3 years
Project co-applicants and collaboratorsFunded byAlzheimer’s Society (Grant reference number 597: awarded 31/03/2023).
Health inequalities towards the end of life for people with dementia from Black African and Caribbean backgrounds (HINTED) resources for healthcare professionals can be found here: HINTED infographic
Led by PhD candidate: Jessica Kay
Primary supervisor: Dr Megan Armstrong
Dates: October 2024-October 2027
Funder: NIHR Three Schools Dementia Programme
Overview:
WS1: A mixed-methods review to explore the experiences of living with dementia in an underserved geographical (coastal, rural and/or deprived) area and to assess how well available evidenced-based non-pharmacological interventions and services meet specific needs of individuals in these populations.
WS2: Semi-structured interviews with people with dementia living in rural, coastal and urban areas experiencing socioeconomic deprivation, and/or their informal carers. The interviews will inform our understanding of barriers and facilitators to well-being, including unmet needs of people with dementia within these areas and if/how unmet needs differ between areas, as well as how factors such as having other long-term health conditions can further complicate or fragment dementia management.
WS3: A secondary analysis using Biobank data to uncover the prevalence of different dementia-related disease clusters, enabling appropriate recommendations with specific clusters in mind to be made. This study will also explore whether certain disease clusters lead to worse outcomes for people with dementia in terms of well-being and mortality.
Led by PhD candidate: Tasmin Rookes
Primary supervisor: Prof Kate Walters
Dates: October 2022 – October 2025
Funder: NIHR SPCR
Overview
The aim of this project is to identify the additional support needs of people with Mild Cognitive Impairment (MCI) to engage with and benefit from health promotion interventions. Healthy behaviours, such as exercising, eating well, and socialising, carried out later in life enable people to not only live for longer, but live well during this time. The impact of these behaviours on everyday life includes improved mobility, more energy, improved wellbeing, reduced disease, and improved cognition. Many health promotion interventions have been developed to help people live well as they age, but, despite how common MCI is in older adults, few adaptations have been applied to account for the impact MCI has on engagement with and benefits from these interventions. I have conducted a mixed methods study exploring how MCI impacted the engagement with and outcomes from a health promotion intervention tested in a national clinical trial to help older adults with mild frailty maintain their independence (HomeHealth). This has included a secondary analysis of trial data, and two linked qualitative studies. I have developed a set of recommendations to support researchers and clinicians to adapt their health promotion interventions, targeted at older adults, for people with MCI, to ensure they have equivalent improvements in outcomes as those with healthy cognition for their age.
Led by PhD candidate: Alice Burnand
Primary supervisor: Professor Nathan Davies (QMUL)
Dates: October 2024 – October 2027
Funder (if applicable): NIHR Three Schools’ Dementia
Overview:
Work Package 1: a systematic review of the prevalence and/or incidence, risk factors and health related outcomes of delirium superimposed on dementia in community settings for people with dementia and family carers.
Work Package 2: a survey of family carers to understand levels of distress and burden when supporting someone with DSD living in the community.
Work Package 3: semi-structured interviews with family carers and focus groups with health care professionals to understand the experiences of those supporting people with DSD.
Led by PhD candidate: Emily Spencer
Primary supervisor: Prof Nathan Davies
Dates: April 2022 – August 2026
Funder: Alzheimer’s Society
PhD overview (up to 250 words): Please write here an overview of work packages (can be a rough plan if just started) and any findings (if applicable) with links to publications.
This PhD project aims to understand how advance care planning (ACP), specifically conversations about the later stages of dementia and planning for end of life, occur in consultations between GPs, people with dementia and their carers.
In workstream one, a systematic review and narrative synthesis will identify the communicative practices used by health and social care professionals, older adults and carers during ACP, including exploring what evidence exists involving people with dementia.
In workstream two, GP consultations will be videorecorded to capture ACP conversations involving GPs, people with dementia and their carers. Conversation analysis will be used to explore these interactions, to examine how ACP is initiated and continued, including the role that carers take in supporting or influencing communication.
Workstream three will be a codesign study. People with dementia, current and former carers, and health and social care professionals will be presented with findings from the systematic review and conversation analysis study. Over a series of workshops, participants will use these findings to codesign guidance for GPs on the communicative practices that can be used to support people with dementia and their carers to engage with ACP.