PhD Studentship: CARE-AD: Assessing CArer beliefs, Awareness and REsponsiveness in Advanced Dementia – PhD Public Health

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.  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.

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.

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