The legalities of managing finances and paying for future care in dementia: a UK-based qualitative study.

BACKGROUND: Managing finances in dementia and on someone else's behalf can be difficult, especially with navigating the legalities surrounding this activity. With a lack of previous evidence, the aim of this qualitative study was to explore how people living with dementia and unpaid carers are planning the financing of dementia care and deal with legal issues surrounding finances. METHODS: We recruited people living with dementia and unpaid carers from across the UK between February and May 2022. The topic guide was developed with two unpaid carers as advisers, and both contributed to the analysis and interpretation of findings, as well as dissemination. Participants were interviewed remotely, and transcripts analysed using inductive thematic analysis. RESULTS: Thirty unpaid carers and people with dementia participated. We generated three themes: Changes to family dynamics; Barriers to implementing legal arrangements in practice; Planning to pay for future care. Arranging financial management involved difficult family dynamics for some, including strained relationships between the carer and person cared for, and among carers. There was little to no guidance on how finances should be handled, causing difficulties in the implementation even when legal agreements were in place. The lack of guidance was equally experienced for information about how to pay for care and plan for paying for future care. CONCLUSIONS: Post-diagnostic support needs to include legal and financial advice, with clearer guidance on how to access financial support to pay for care. Future quantitative research should explore the link between economic background and access to financial support.

A systematic review on inequalities in accessing and using community-based social care in dementia.

OBJECTIVES: To evaluate and synthesize the evidence base on barriers and facilitators to accessing and using community-based social care in dementia. DESIGN: Mixed-methods systematic review. SETTING: Community-based social care (such as day care, respite care, paid home care, and peer support groups). PARTICIPANTS: People living with dementia and unpaid carers. MEASUREMENTS: Seven databases were searched in March 2022, including English and German evidence published from 2000 focusing on inequalities in community-based social care for dementia across the globe. Titles and abstracts were screened by two reviewers, with all full texts screened by two reviewers also. Study quality was assessed using QualSyst. RESULTS: From 3,904 screened records, 39 papers were included. The majority of studies were qualitative, with 23 countries represented. Barriers and facilitators could be categorized into the following five categories/themes: situational, psychological, interpersonal, structural, and cultural. Barriers were notably more prominent than facilitators and were multifaceted, with many factors hindering or facilitating access to social care linked together. CONCLUSIONS: People with dementia and carers experience significant barriers in accessing care in the community, and a varied approach on multiple levels is required to address systemic and individual-level barriers to enable more equitable access to care for all.

The digitalisation of finance management skills in dementia since the COVID-19 pandemic: A qualitative study.

OBJECTIVES: Engaging with finances has become increasingly digitalised in recent years, particularly since the COVID-19 pandemic, yet it is unknown how finance management has been affected in people living with dementia. The aim of this qualitative study was therefore to explore how digitalisation and the recent pandemic have affected finance management skills in people with dementia. METHODS: Semi-structured interviews were conducted remotely with people with dementia and unpaid carers living in the UK via phone or Zoom between February and May 2022. Transcripts were coded by one of four different research team members, including two unpaid carers who were public advisers on the project. Data were analysed using inductive thematic analysis. RESULTS: Thirty carers and people with dementia participated, and five overarching themes were identified. Managing finances has been both simplified and made more complicated by digitalising how money is spent and managed, with people with dementia and unpaid carers reporting advantages of using direct debits and debit cards, as well as digital illiteracy barriers for older relatives with dementia. Unpaid carers have received no support in managing their relative's finances, and were found to be burdened by the additional caring duties. CONCLUSIONS: Carers need to be supported in managing their relative's finances as well as with their general well-being due to taking on additional caring duties. Digital systems for finance management need to be user-friendly for people with cognitive impairment, with a need for digital literacy training for middle-aged and older adults to avoid difficulties if they develop dementia, and improved access to a computer/tablet/smart phone.