CARE-AD: Assessing CArer beliefs, Awareness and REsponsiveness in Advanced Dementia – PhD Healthcare and Medicine Ref: 5886

Supervisors

Dr Jonathan Huntley - University of Exeter - Faculty of Health and Life Sciences

Dr Anthony Martyr - University of Exeter - Faculty of Health and Life Sciences

Professor Linda Clare - University of Exeter - Faculty of Health and Life Sciences

NIHR Applied Research Collaboration (ARC) South West is inviting applications for a PhD studentship to commence on 21 September 2026 or as soon as possible thereafter.  For eligible students the studentship will cover Home tuition fees plus an annual tax-free stipend of at least £21,805 for 3 years full-time. We welcome applicants who wish to study less than full-time, provided they complete their studies before March 2031. The student would be based in the ARC South West in the Faculty of Health and Life Sciences at St Luke’s Campus in Exeter. A training and development budget will also be provided to support the activity of the student.

Background: When someone has advanced dementia, family members often ask heartbreaking questions such as: “Is my dad still in there?” or “Does she know I’ve come to see her?”. Professional carers may also struggle to know what the person is still aware of, or in other words: what can they still notice, feel, and respond to?  Too often, people with advanced dementia are described as “not really there” or assumed to be unaware, even when carers mean well.  People with advanced dementia usually cannot tell us what they are thinking or feeling. This makes it extremely difficult to understand their inner experience — what they are aware of and what makes them feel comfort, distress, pleasure, or connection. As a result, carers may miss signs of awareness or respond in ways that unintentionally increase distress. This is especially challenging for families and staff who continue to care deeply about someone they can no longer communicate with using words.  Why does this matter? Because what carers believe about awareness strongly shapes how they behave. If someone believes a person with advanced dementia is “no longer there”, or misses signs they are aware, they may talk over them, offer less stimulation, or focus only on physical care. By contrast, if carers believe the person is still aware in some way and are able to recognise signs of awareness — even subtle or fleeting signs — they may continue to talk to them, help find meaningful activities, and protect their dignity. These differences can have a major impact on relationships and quality of life (QoL), for the person with dementia and for those who care for them.  This project aims to improve how we understand awareness in advanced dementia and to translate that understanding into a simple, practical tool that helps carers respond more sensitively and confidently.

Problem to be investigated: Around 130,000 people in the UK live with advanced dementia. They are highly vulnerable, dependent on others for all aspects of daily life, and yet remain under-researched. Our pilot work and focus groups show wide differences in how family members and professional carers understand the awareness of people with advanced dementia. Views range from “they are still in there” to a painful sense of bereavement: “they are already gone”. This uncertainty is distressing for carers and may directly affect how they care, relate, and cope emotionally. Our previous work has shown that carers and families urgently want help in recognising signs of awareness in those they care for; however as there is a lack of simple tools to help them in everyday care settings, carers are left to rely on guesswork, assumptions, or occasional “moments” of apparent awareness that may not be recognised or acted upon. Clarifying how carers understand awareness, how these beliefs shape care, and how awareness might be recognised in practice is therefore essential for improving quality of life and person-centred care.

Research questions, aims and objectives:  

Theme 1: Beliefs and experiences

·         What beliefs and attitudes do family and professional carers hold about awareness in advanced dementia?

·         How do these beliefs affect relationships, care practices, wellbeing, and quality of life?

·         Are these beliefs linked to dementia severity, subtype, or outcomes?

Theme 2: Practice and assessment

·         What signs of awareness do carers notice and interpret in everyday care?

·         Can awareness be recognised more consistently and confidently in practice?

·         Can a short, easy-to-use observational checklist (AwareCare short form) be developed to support both family and paid carers?

Proposed methods: The studentship builds directly on previous ARC work and ongoing collaborations. The project has four work packages:

WP1: Literature reviews (Months 0–14). Systematic reviews will be conducted of:

- Carer beliefs about awareness in advanced dementia, across medical, social and cultural perspectives.

- Existing tools used to assess awareness, focusing on advanced dementia

WP2: Survey (Months 9–18): A co-produced online mixed-methods survey with family and professional carers (n≈120), will be conducted exploring:

·         - Beliefs about awareness and personhood.

·         - How carers judge awareness and foster connection.

·         - Experiences of lucid moments or increased awareness and connection.

·         - Carer wellbeing, stress, relationship with the person with dementia and quality of life

·         Quantitative results (from measures of wellbeing, QoL and carer relationship) will be triangulated with qualitative themes (from free text responses describing beliefs and experiences) to confirm, explain, and enrich key findings.

WP3: Tool development (Months 16–24): The existing AwareCare tool will be adapted into a short, practical checklist, informed by WP1 and WP2. A co-production process previously used by the supervisory team to develop similar tools will be followed. This involves working closely with carers, the PPIE group and clinical stakeholders to modify and finalize the checklist.

WP4: Pilot study (Months 24–30): The tool will be pilot tested with at least five dyads (person with advanced dementia and carer) during shared activities such as music or reminiscence, followed by qualitative interviews with carers to assess the tool’s acceptability and feasibility.

Dissemination and impact: Findings will be shared through care home networks (including the Outstanding Society), carer forums, webinars, podcasts, and ARC networks. Results will be published in peer-reviewed journals and presented at conferences. Feedback will be provided to participating care homes and families where possible. By the end of the project, we will have:

·        A clearer understanding of how carers think about awareness and how this shapes care

·    A practical, co-produced tool to support person-centred care in advanced dementia with evidence for acceptability and feasibility for use in care homes.

While this study focuses on people with advanced dementia, the tool will have wider potential to be used with other groups of people with severe cognitive impairment.  The next step will be to seek NIHR funding for wider testing, further adaptation for use by care staff and implementation to use the co-produced tool in real world settings

Patient and public involvement: This project builds on 5 years of PPIE work with people with dementia, family carers and professionals. Understanding awareness in advanced dementia was consistently identified as a top priority. A dedicated ARC PPIE group will co-design the survey, support tool development, and contribute to dissemination.

Equality, diversity and inclusion: We will recruit a diverse sample through partner care networks in the South West and nationally. As beliefs about awareness may vary across cultures and communities, we will ensure we include participants from under-represented groups, guided by an Equality Impact Assessment.  This will be conducted at the start of the project to focus the team on possible areas of inequity/disparity and identify ways to be as inclusive as possible, and then reviewed at key points. The ultimate aim is to develop a tool that improves care, quality of life, and strengthens relationships for carers and people with advanced dementia from all backgrounds.

“The studentship will be awarded on the basis of academic merit. Students who pay international tuition fees are eligible to apply. However, these candidates should note the following:

• The award covers only part of the international tuition fee, approximately £27,000.
• It does not include a stipend for living expenses.
• International applicants will need to cover additional costs, including:
• Student visa fees
• Immigration Health Surcharge
• Relocation expenses associated with moving to the UK to undertake a PhD.

International fee-paying applicants should ensure they have sufficient funds to meet these costs before applying.

The conditions for eligibility of home fees status are complex and you will need to seek advice if you have moved to or from the UK (or Republic of Ireland) within the past 3 years or have applied for settled status under the EU Settlement Scheme.”

Entry requirements

Applicants for this studentship must have obtained, or be about to obtain, a First or Upper Second Class UK Honours degree, or the equivalent qualifications gained outside the UK, in an appropriate area of healthcare data science or an area with strong quantitative and programming elements, such as physics, mathematics, statistics or computer science.

 If English is not your first language you will need to meet the English language requirements and provide proof of proficiency. Click here for more information.

Doctoral Award Person Specification

Essential

·         Hold a 1st or 2:1 bachelor’s degree, or equivalent If not, you will usually need to have a relevant master’s degree

·         Have prior research experience or training to prepare for a PhD

·         Not already hold a relevant PhD or equivalent

·         Show strong academic and professional skills needed to complete a PhD

Desirable

·         Demonstrate originality and independent critical thinking in proposing research with real-world benefits for patients, the public, and the health and social care system

·         Knowledge of the priorities in the area of research interest

·         Demonstrate an alignment with NIHR strategic priorities, where applicable.

Successful applicants will become members of the NIHR Academy, and further information about this can be found here https://www.nihr.ac.uk/career-development/research-career-funding-programmes/supporting-career-development/opportunities-infrastructure.

How to apply

Apply now

To apply, please click the ‘Apply Now’ button above. In the application process you will be asked to upload several documents

•  CV
• Letter of application (outlining your academic interests, prior research experience and reasons for wishing to undertake the project).
• Transcript(s) giving full details of subjects studied and grades/marks obtained (this should be an interim transcript if you are still studying)
• Two references from referees familiar with your academic work. If your referees prefer, they can email the reference direct to PGRApplicants@exeter.ac.uk quoting the studentship reference number.
• If you are not a national of a majority English-speaking country you will need to submit evidence of your proficiency in English.

The closing date for applications is midnight on 28th July 2026.  Interviews will be held virtually in August.

All application documents must be submitted in English. Certified translated copies of academic qualifications must also be provided.

Please quote reference 5886 on your application and in any correspondence about this studentship.

NIHR are committed to equality, diversity and inclusion in everything we do. Diverse people and communities shape our research, and we strive to make opportunities to participate in research an integral part of everyone’s experience of health and social care services. We develop researchers from multiple disciplines, specialisms, geographies and backgrounds, and work to address barriers to career progression arising from characteristics such as sex, race or disability. Please let us know if you need any reasonable adjustments made to the application process and we will be happy to explore whether this is possible. 

Potential applicants working in community, social care and public health are welcome to contact us to explore their suitability.

For general information about this studentship and the application process, please contact PGRApplicants@exeter.ac.uk. Project specific queries should be directed to the main supervisor J.D.Huntley@exeter.ac.uk.  Queries about the award itself can be directed to arcsouthwest@exeter.ac.uk 

Summary