The Psychosocial Wellbeing of People Living with Dementia and Informal Carers, and their Experiences of Accessing Support.

Introduction: Dementia can have substantial psychological, emotional, and social impacts on people living with dementia (PLWD) and informal carers. Moreover, many face barriers to accessing support for these impacts. The interconnected experiences of PLWD and informal carers require further investigation, particularly as they are recognised as under-represented groups in research. Therefore, this qualitative study explored the psychosocial impacts of dementia on PLWD and informal carers in the UK, and their experiences of accessing psychosocial support.

Method: First, discussion threads from two online forums were searched and sampled in accordance with best practice guidelines. Thirty threads comprising 403 comments from 142 PLWD and informal carers were analysed. Second, two focus groups with seven informal carers and dementia-focused researchers were conducted. Inductive thematic analysis was performed. Patient and Public Involvement from a carer representative was embedded throughout the study.

Results:  Three themes were generated. Theme 1 (A Multitude of Impacts across the Dementia Journey): PLWD and informal carers reported shifting into a new life (e.g., difficulties with self-care, employment, independence). They can experience burnout, poor emotional wellbeing, social isolation, and strained family relationships. Theme 2 (Minimal Psychosocial Support Available): Families frequently struggle to access support from the health service (e.g., psychological therapy, primary care appointments). Consequently, they can turn to informal support (e.g., physical activity, meditation, peer support, hobbies) and home-based support (e.g., helplines, befriending, charity websites). Theme 3 (Support Optimisation and Preferences): Families require improvements to person-centred care, support options for young-onset dementia, coordination between clinicians from different services, and clear information about support options at each stage of the dementia journey.

Conclusions: This study examined psychosocial wellbeing in PLWD and informal carers using a novel approach that combined forum and focus group data. Significant gaps in support for these groups and recommendations for improvement were identified. The findings have implications for health and social care services, charities, and researchers.