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.

The 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.

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.

The 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.

We 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.

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

This 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.

Everyone 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.

This 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

• Nathan Davies
• Greta Rait
• Mike Clark
• Jane Wilcock

Alzheimer’s Society (Grant reference number 597: awarded 31/03/2023).

Health Inequalities in end of life for people with dementia from Black African and Caribbean backgrounds (HINTED) 

Project Lead: Narin Aker

Primary supervisor: Prof Nathan Davies (QMUL)

Start –end date: 01/10/2021 - 31/07/2025

Funder: NIHR School for Primary Care Research 

Overview

This PhD aimed to investigate inequalities in end-of-life care for people with dementia from Black African and Caribbean backgrounds and explore ways to improve access and engagement with healthcare services. This project consists of three studies:

Study 1: Scoping review exploring experiences and access to palliative and end of life care for older people from minority ethnic groups, published here.

Study 2: Semi-structured qualitative interviews with people living with dementia and family carers from Black African and Caribbean backgrounds, and healthcare professionals who work with these groups. Interviews focused on support needs, difficulties accessing care and support, issues related to culture and ethnicity, and end of life care experiences/preferences.

Study 3: Co-design study with people living with dementia and family carers from Black African and Caribbean backgrounds, healthcare professionals, and other relevant stakeholders (such as charities or dementia organisations) to collaboratively design a resource to support better access to care. The resource can be found here.

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.

Health promotion for older adults infographic.pdf

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.

Chief investigator

Dr Sarah Griffiths

Dates: 1 June 2025 – 31 May 2027

Funder: NIHR School for Social Care Research

Background

A growing number of people with dementia live alone, with no informal carer (close relative or friend) to provide support with health and wellbeing, e.g., helping with appointments, social activities, and keeping safe. Little is known about their needs, but they are at greater risk of physical and mental health difficulties, including malnutrition and loneliness, than those with informal carers. They see doctors less, have more unplanned hospital admissions and move into care homes earlier.

Staying independent for as long as possible is important to people with dementia. Achieving this requires planning. Everyone with dementia should have a ‘personalised care plan,’ updated each year. The plan should be created by staff in primary care (e.g., GP surgeries) such as GPs, nurses, social prescribers and dementia advisers. It should be created with the person with dementia and identify their physical health, mental health and social wellbeing needs, and how they will be addressed.

Often, carers support the person to create this plan. Having no carer can create challenges. The person may not know what they need, and the primary care team might not know them well. It is therefore important to do more research about how best to support people with dementia who live alone with no informal carer. This will help care teams to have helpful care planning conversations. It will help teams understand how to identify and address social care needs (e.g., maintaining social connections and staying safe) before they turn into a crisis.

Overview of project

This 24-month research project explores the needs and strengths of people with dementia who live alone without informal carers, how primary and social care teams can best support them, and develops training resources to support staff with creating effective care plans. The study takes place across London, Devon, and Yorkshire and involves a diverse range of advisors and participants. People with dementia are actively involved through Patient and Public Involvement and Engagement.

The project uses interviews, observations of care planning conversations, and co-production workshops to develop a practical training resource for health and social care professionals. The resource will o improve personalised care planning and support for people with dementia living alone without informal carers.

Co-applicants 

Prof Greta Rait

Prof Nathan Davies

Dr Jenni Brooks 

Dr Kate Gridley

Agnes Houston, MBE

Researchers 

Dr Gianna Kohl

Emily Spencer

Collaborators

Dr Fiona Aspinal

Dr Mandy Willcox (Sheffield Hallam University) 

Personalised care for people living with dementia: The role of primary care in the management of dementia in the context of multiple long-term conditions

Chief Investigator: Kumud Kantilal kumud.kantilal@ucl.ac.uk, Senior Research Fellow

Start date: 01 August 2024

End date: 31 March 2026

Background: Supporting people to manage long-term conditions (LTCs) and dementia are strategic priorities for the NIHR as both are growing public health issues. Research on the experiences and care of people from minority ethnic backgrounds living with dementia as a single disease is growing, however, little is known about the specific challenges facing people from South Asian backgrounds who are living with dementia alongside other LTCs. This is important because people from South Asian backgrounds in the UK not only have a higher incidence of LTCs, but dementia incidence among South Asians will rise seven-fold in the next 25 years compared to two-fold in people from White backgrounds. 

Overall project aim: To explore the experiences and care needs of people from South Asian backgrounds living with dementia alongside other long-term conditions and the role of primary care in supporting them. 

Methods:

This project has two studies: 

1. Evidence review: A scoping review of health and care service adaptations for managing dementia in people living with multiple long-term conditions
2. Qualitative interviews: Experiences of care in people from South Asian backgrounds living with dementia and multiple other health conditions

The findings will be used to identify what “good” dementia care looks like for this population with a view to making recommendations to primary care and other providers for personalised care and inform development of a culturally appropriate primary care intervention in the future. 

Project team:

Kate Walters, Clinical Professor of Primary Care and Epidemiology, UCL

Silvie Cooper, Lecturer (Teaching), UCL

Nathan Davies, Professor of Ageing and Applied Health and Care Research, Queen Mary University of London

Elisa Langley, Dementia Research Intern, UCL

Manoj Mistry, member of the public

Nazia Hussain, member of the public 

Funding: Kumud Kantilal is the recipient of a post-doctoral fellowship from the National Institute for Health and Care Research (NIHR) Applied Research Collaboration North Thames. This fellowship was part of an initiative funded by the NIHR and Alzheimer’s Society to support post-doctoral capacity building in applied dementia research. The views expressed are those of the study team and not necessarily those of the Alzheimer’s Society, NIHR, or the Department of Health and Social Care.

DEMSA Study: Exploring person-centred care, care planning and care environments for people with dementia from South Asian backgrounds

Project Lead: Pushpa Nair

Primary supervisor: Professor Nathan Davies

Secondary supervisors: Professor Kate Walters, Professor Fiona Stevenson, Dr Jemima Dooley (Exeter)

Dates: October 2022 – May 2027

Funder: Wellcome

Overview

This PhD aims to understand what person-centred care means for South Asian people living with dementia, specifically exploring care environments and care planning takes.

Workstream 1: A systematic review and thematic synthesis exploring key influential factors on care planning and post-diagnostic support provision for South Asian people with dementia. 

Workstream 2: Ethnography. This will include semi-structured interviews with South Asian people with dementia and current/former carers, together with participant observation - to explore experiences of care environments and accessing post-diagnostic support and care planning, considering the impact of ethnicity and culture. A document analysis of recorded care planning discussions in the community will also be undertaken.

Workstream 3: Co-design. Over a series of workshops, South Asian people with dementia, current and former carers, and health and social care professionals will co-design an information resource to help facilitate care planning in the community for South Asian people with dementia.

Project Lead: Dr Danielle Nimmons

Primary supervisor:  Professor Kate Walters

Secondary supervisors: Professor Nathan Davies, Professor Irene Petersen, Professor Claudia Cooper, Dr Juan Carlos Bazo Alvarez

Dates: March 2023 – March 2026

Funder: Alzheimer’s Society

Overview

This PhD explores the primary care identification and management of anxiety and depression in community-dwelling people with dementia, using mixed methods.

Phase 1: A systematic review and meta-analysis exploring effective pharmacological and non-pharmacological interventions for anxiety in people with dementia in the community.

Phase 2: Semi-structured interviews and group interviews exploring primary care identification and management of anxiety and depression in dementia. This included 56 participants mostly located in London and West Yorkshire. Fourteen people with dementia, 17 carers and 25 health and social care professionals were interviewed. 

Phase 3: Cross-sectional study using IMRD electronic health records. This explored the prevalence of prescription records for antidepressants, anxiolytics and hypnotics in the year before and after a dementia diagnosis. It also explored the prevalence of recorded diagnoses and symptoms of anxiety and depression in this time frame.

Outputs:

Nimmons D, Aker N, Burnand A, Jordan KP, Cooper C, Davies N, Manthorpe J, Chew-Graham CA, Kingstone T, Petersen I, Walters K. Clinical effectiveness of pharmacological and non-pharmacological treatments for the management of anxiety in community dwelling people living with dementia: A systematic review and meta-analysis. Neurosci Biobehav Rev. 2024 Feb;157:105507. doi: 10.1016/j.neubiorev.2023.105507. Epub 2023 Dec 13. PMID: 38097097.

Supporting communication in research partnerships involving people with dementia.

Find out more here.