Experiences of family caregiving in dementia

: identity change and navigating dementia-related hallucinations and delusions

Abstract

Section A
As populations age, the prevalence of dementia continues to rise, increasing reliance on family members to provide care. This transition from relative to caregiver can profoundly reshape everyday life, relationships, and sense of self, highlighting the importance of understanding how family members experience changes in their identity. This review aimed to synthesise qualitative research exploring how family caregivers of people living with dementia experience identity change. A systematic search of Web of Science, PsycINFO and ASSIA identified qualitative studies exploring family members’ experiences of identity in dementia caregiving. Following critical appraisal using the Critical Appraisal Skills Programme (CASP), thirteen studies were included in a meta-ethnographic synthesis.
The synthesis generated four overarching third-order constructs: (mis)recognition and social positioning of caregiver identity; destabilised identities through relational change and ambiguous loss; threats to self and strategies of self-preservation; and adaptive reconstruction and integration, or enduring identity destabilisation. These third-order constructs were integrated into a line of argument synthesis suggesting that caregiver identity change is a dynamic, relational process shaped by social, relational, and intrapersonal factors. Findings highlight the complex ways family members negotiate their evolving identities while adapting to the progressive changes associated with dementia. Implications for clinical practice, policy, and future research are discussed, particularly the importance of recognising caregivers and supporting opportunities for identity renegotiation.

Section B
Background: Dementia-related hallucinations and delusions are common neuropsychiatric symptoms that can significantly affect both people living with dementia (PLWD) and their family caregivers. While quantitative studies suggest these symptoms increase caregiver burden, relatively little is known about how caregivers experience and make sense of these experiences in everyday life. Aims: This study aimed to explore how family caregivers experience dementia-related hallucinations and/or delusions, how these experiences affect the caregiver–relative relationship, and how caregivers cope with these symptoms. Methods: A qualitative design was employed. Semi-structured interviews were conducted with 10 family caregivers supporting PLWD who experienced hallucinations and/or delusions. Interviews were analysed using interpretative phenomenological analysis. Results: Three group experiential themes were developed: being pulled into an uncharted caregiving reality, grappling with two realities as loss deepens, and finding ways to live alongside divergent realities. Caregivers described hallucinations and delusions as unfamiliar, confusing, and often overwhelming, particularly when they felt unprepared and unsupported in responding to them. These experiences intensified awareness of relational loss and created moral tension as caregivers tried to balance honesty with protecting their relative from distress. Over time, many caregivers developed personalised ways of coping, including acceptance, curiosity, humour, compassion, and self-care. Conclusion: The findings highlight the need for psychologically informed post-diagnostic support that helps caregivers understand these symptoms, navigate complex responses, and manage difficult emotions such as guilt and anxiety.

Date of Award	2026
Original language	English
Awarding Institution	Canterbury Christ Church University