Social support services for dementia during the COVID-19 pandemic: A longitudinal survey exploring service adaptations in the United Kingdom.

OBJECTIVES: To understand how the delivery of dementia-related social support services across the UK adapted during the pandemic. METHODS: We devised a two-part online and telephone longitudinal survey. Providers participated between March and June 2021, and again 3 months later. Information relating to services delivered and delivery methods employed was collected before and during the pandemic at two timepoints (T1 and T2). RESULTS: A total of 75 participants completed the survey at T1, with 58 participants completing the survey at both timepoints. Thirty-six participants had complete data at T1. Day care centres and support groups were the most delivered primary services. During the pandemic, services shifted from in-person to remote or hybrid. While in-person services started to resume at T2, most services remained hybrid. At T2, the frequency of service delivery increased, however, a decreasing trend in usage was observed across survey timepoints. The telephone was the most employed format to deliver remote and hybrid services, however, reliance on videoconferencing software significantly increased at T1. Videoconferencing software was often used alongside the telephone and emails to remotely deliver services. CONCLUSIONS: Services were able to adapt and provide support to some service recipients. Complementing novel approaches to service delivery with more traditional formats may facilitate access to service recipients with limited digital literacy. Following the easing of public health measures, many service recipients may be reluctant to engage with in-person services. Thus, the provision of in-person and remote services needs to be carefully balanced amidst the current hybrid landscape. PATIENT OR PUBLIC CONTRIBUTION: Two public advisors (a former unpaid carer and a person living with dementia) were involved in designing and piloting the tool, interpreting the results and disseminating the findings. Both public advisors have experience in delivering dementia-related social support services before and or during the pandemic in the United Kingdom.

A UK qualitative study of living and dying with dementia in the last year of life.

Background: Dementia is a life-limiting illness, but the trajectory of dying can be difficult to establish and care at end of life can be variable and problematic. Methods: This UK study was carried out to explore the end-of-life-care experiences of people with dementia from the perspective of their family carers. In-depth interviews were conducted with 40 bereaved family carers of people with dementia. Results: Forty family carers (male n = 9, female n = 31) age range: 18-86 years were interviewed. Issues with poor communication were common. The hard work of caring and issues regarding unpredictability of living and dying with dementia were also commonplace within the study. Only three patients were referred for specialist palliative care support at the end of life, all of whom had a dual diagnosis of dementia and cancer. Conclusion: This qualitative study has identified that there are several gaps in the end-of-life care of people with dementia, and frequently, there is poor communication during the last year of life. The need for high-quality integrated care for people dying with dementia with appropriate support during the last year of life is identified. COVID-19 has disproportionately affected people with dementia, and in the post-pandemic era, there is an urgent need to ensure every person dying with dementia is supported to die in their preferred place and that family members are supported and enabled to be treated as the 'expert' in terms of their knowledge of their relatives' care and preferences.

Outcomes for older people with long-term conditions attending day care services delivered by paid staff or volunteers: a comparative study.

BACKGROUND: Day care services support older people living with long-term conditions (LTC's). AIMS: The aims of the study were to determine outcomes in terms of loneliness and health-related quality of life for older people with LTCs attending day care services in the United Kingdom. METHODS: Newly referred older people with LTCs to day care services in North West of England and Wales were invited to participate. The EQ-5D-3L and De Jong Loneliness questionnaires were completed at recruitment, 6 and 12 weeks. RESULTS: Ninty-four older people (64% female), age range 65-99 years; mean number of LTCs 4.3 (range: 2-9) were recruited. About 52% lived alone and 36% lived in one of the 20% most deprived local authorities in England and Wales. Outcomes over 12 weeks were comparable for paid, blended, and for volunteer-led services. CONCLUSION: Following the Covid-19 pandemic, it is increasingly urgent to support older people with LTCs who may have lost physical and cognitive function during lockdown and to support their recovery. Our study suggests that volunteers can provide services and complement the care provided by paid staff, freeing up resources and enabling increasing numbers of older people to be supported.