Do people with dementia and carers get what they need? : Barriers in social care and carers needs assessments

Giebel, Clarissa and Watson, James and Dickinson, Julie and Gabbay, Mark and Halpin, Kath and Harding, Andrew and Swarbrick, Caroline (2024) Do people with dementia and carers get what they need? : Barriers in social care and carers needs assessments. Dementia, 23 (4). pp. 550-566. ISSN 1471-3012

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Abstract

Background People with dementia and unpaid carers need to go through a social care or carers needs assessment to access and receive subsidised or fully-funded social care. With no previous evidence, this qualitative study aimed to provide insights into the access to, experiences of receiving and conducting social care or carers needs assessments, and access to social care. Methods Unpaid carers of people with dementia and professionals conducting social care or carers needs assessment living or working in England were interviewed remotely about their experiences between April and August 2023. Topic guides were co-produced with two unpaid carers, and both were supported to code anonymised transcripts. Thematic analysis was used to analyse the data. Findings Twenty-seven unpaid carers (n = 21) and professionals (n = 6) participated. Four themes were generated: (1) Issues with accessing needs assessments, not the process; (2) Knowledge of needs assessments and the health and social care system; (3) Expectations of unpaid carers; and (4) Post-assessment unmet needs. The most prominent barriers unpaid carers and their relatives with dementia encountered were awareness of and access to needs assessment. Unpaid carers were mostly unaware of the existence and entitlement to a needs assessment, and sometimes realised they had participated in one without their knowledge. Professionals described the pressures on their time and the lack of financial resources within services. Conclusions To facilitate improved access to dementia care and support for carers, the pathway to accessing needs assessments needs to be clearer, with better integration and communication between health and social care.