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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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

The aim of this 3-UK-nation online survey was to explore the impact of the cost of living crisis on the lives of people with dementia and their carers, specifically on their ability to access social care and support services, and the contributions of gender and ethnic background. A 3-UK-nation (England, Wales, Northern Ireland) 31-item online survey was conducted in October 2022 asking people with dementia, carers, and people knowing but not caring for someone with dementia about social care and support service access, cost of living crisis, and changes due to the cost of living crisis. Frequency analysis and Chi-square analysis were employed to assess whether forms of payment for services varied by gender. Pearson correlation analysis and binary logistic regression were used to assess whether gender and ethnicity were associated with struggling to pay for care since the crisis. A total of 1,095 people with dementia, unpaid carers, and people who knew but not cared for someone with dementia participated. Of those, 745 people with dementia were utilising community-based social care and support services. Twenty percent of those with complete data had reduced their spending on care services since the crisis. Men and those from non-white ethnic backgrounds were at significantly increased odds of struggling to pay for care services. The cost of living crisis has led to exacerbated inequalities in accessing and using dementia care. Men and those from non-white ethnic backgrounds in particular need to receive greater support in accessing care. [ABSTRACT FROM AUTHOR]

Objectives: Little is known about how community services and institutional care settings have adapted to providing support since the COVID-19 pandemic. The aim was to explore how these care services have adapted during the pandemic in the UK and are providing care to people living with dementia (PLWD) and carers. Method: Semi-structured telephone interviews were conducted in June and July 2020 with 16 purposefully sampled unpaid dementia carers. Participants were asked about their experiences of accessing care services since the lockdown, and whether they were beneficial, if accessed at all. Results: Three themes were identified: (1) Impacts of no activities; (2) Difficulties accessing care during the pandemic; (3) Remote vs. face-to-face support. Loss of access to previously enjoyed activities and having had to shield for many PLWD is suggested to have led to severe physical and cognitive deteriorations, advancing the dementia. Where remote support was available, this was helpful to some, but did not replace the benefits of face-to-face support. Where PLWD were residing in a care home, carers had very limited remote access. Conclusions: This is the first study to explore the impact on carers both from a community and institutionalised care angle. Few care services have adapted to providing remote support. With the vaccine taking time to be accessible to everyone, it is vital for organisations to work closely with carers and PLWD to adapt services to provide much needed support. [ABSTRACT FROM AUTHOR]

Objective: In order to increase the efficacy of psychosocial interventions in dementia, a step-by-step process translating evidence and public engagement should be adhered to. This paper describes such a process by involving a two-stage focus group with people with dementia (PwD), informal carers, and staff. Methods: Based on previous evidence, general aspects of effective interventions were drawn out. These were tested in the first stage of focus groups, one with informal carers and PwD and one with staff. Findings from this stage helped shape the intervention further specifying its content. In the second stage, participants were consulted about the detailed components. Findings: The extant evidence base and focus groups helped to identify six practical and situation-specific elements worthy of consideration in planning such an intervention, including underlying theory and personal motivations for participation. Carers, PwD, and staff highlighted the importance of rapport between practitioners and PwD prior to commencing the intervention. It was also considered important that the intervention would be personalised to each individual. Conclusions: This paper shows how valuable public involvement can be to intervention development, and outlines a process of public involvement for future intervention development. The next step would be to formally test the intervention. [ABSTRACT FROM AUTHOR]

Objectives: People with dementia (PwD) require an increasing degree of assistance with activities of daily living (ADLs), and dependency may negatively impact on their well-being. However, it remains unclear which activities are impaired at each stage of dementia and to what extent this is associated with variations in quality of life (QoL) across the different stages, which were the two objectives of this study. Methods: The sample comprised 122 PwD, and their carers, either living at home or recently admitted to long-term care. Measures of cognition and QoL were completed by the PwD and proxy measures of psychopathology, depression, ADLs and QoL were recorded. Using frequency, correlation and multiple regression analysis, data were analysed for the number of ADL impairments across mild, moderate and severe dementia and for the factors impacting on QoL. Results: ADL performance deteriorates differently for individual activities, with some ADLs showing impairment in mild dementia, including dressing, whereas others only deteriorate later on, including feeding. This decline may be seen in the degree to which carers perceive ADLs to explain the QoL of the PwD, with more ADLs associated with QoL in severe dementia. Results of the regression analysis showed that total ADL performance however was only impacting on QoL in moderate dementia. Conclusion: Knowledge about performance deterioration in different ADLs has implications for designing interventions to address specific activities at different stages of the disease. Furthermore, findings suggest that different factors are important to consider when trying to improve or maintain QoL at different stages. [ABSTRACT FROM AUTHOR]