Key components of post-diagnostic support for people with dementia and their carers: A qualitative study

Bamford, Claire; Wheatley, Alison; Brunskill, Greta; Booi, Laura; Allan, Louise; Banerjee, Sube; Dening, Karen Harrison; Manthorpe, Jill; Robinson, Louise

doi:10.1371/journal.pone.0260506

Cited by 41 publications

(53 citation statements)

References 40 publications

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“…Although pre-dating the pandemic, such inequities have been magnified by it. Focusing on integrated systems of post-diagnostic support in primary care ( Bamford et al, 2021 ) may help to ensure people with dementia and their families are not missed at any time, and especially during times of public health crisis.…”

Section: Discussionmentioning

confidence: 99%

Navigating the coronavirus pandemic 2 years on: Experiences of people with dementia from the British IDEAL cohort

et al. 2023

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Background and objectives People with dementia have been affected in unique ways during the COVID-19 pandemic. It is not known whether the impact of the pandemic has changed with time or with the changes in social restrictions. This study explored how experiences of coping with the effects of the pandemic in the UK changed over time. Research design and methods We conducted semi-structured interviews with people with dementia living in the community in England and Wales who had taken part in a qualitative interview at an earlier stage of the pandemic. We applied framework analysis to identify themes and compared these with interviewees’ previous accounts. Findings Nine people aged between 51 and 89 years were interviewed; four were female and five had early onset dementia. We identified three themes: 1. Navigating a changing world: Living with coronavirus; 2. A ‘downward spiral’: Managing advancing dementia; and 3. Availability, accessibility, and suitability of support. Findings reflect participants’ ongoing caution about re-emerging from social restrictions to resume valued activities, and how this led to coping behaviours to minimise the impact on wellbeing in the absence of formal support and services. Discussion and implications Despite easing of restrictions across the UK, the negative impact of the coronavirus pandemic on people with dementia continues. Whilst individuals and services have adapted to some of the challenges, there is now an opportunity to rebuild support networks and services to ensure people with dementia are suitably advised, supported and socially engaged to allow them to live as well as possible.

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Section: Discussionmentioning

confidence: 99%

Navigating the coronavirus pandemic 2 years on: Experiences of people with dementia from the British IDEAL cohort

et al. 2023

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“…Commissioners, managers and frontline staff of services providing postdiagnostic support in England and Wales were eligible to take part. The sampling frame comprised professionals who had previously been recruited to the PriDem qualitative study before COVID-198 26 27 and who had given permission for follow-up contact. If potential participants were unavailable, a colleague from the same service who had not previously been recruited to the PriDem study was eligible to take part in their place.…”

Section: Methodsmentioning

confidence: 99%

Changes to postdiagnostic dementia support in England and Wales during the COVID-19 pandemic: a qualitative study

2022

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ObjectivesTo explore the impact of COVID-19 on postdiagnostic dementia care and support provision in England and Wales.DesignQualitative research using semistructured interviews, via video or telephone conferencing.SettingServices providing postdiagnostic support across health, social care and the third sector.Participants21 professionals previously recruited to an ongoing research programme on postdiagnostic dementia care (or colleagues, if unavailable).ResultsKey themes identified from the data were: challenges caused by COVID-19; responses to those challenges, including a widespread shift to remote working; and effects of COVID-19 on future postdiagnostic support. Challenges included changing and sometimes conflicting guidelines; a lack of access to support; identifying and responding to emerging needs; emotional and physical impact of COVID-19; and balancing COVID-19 risk with other risks such as deterioration. Some dementia services closed, while others adapted and continued to provide support thus potentially widening existing inequalities. There were also some unintended positive outcomes, including improved cross-sector and multidisciplinary working between professionals.ConclusionDelivering postdiagnostic dementia support during COVID-19 required essential adaptations. While some changes were detrimental to service users, others were identified as potentially beneficial and highly likely to become the new ‘norm’, for example, use of blended approaches, combining virtual and face-to-face work, thus allowing more flexible, integrated care. Our data have implications for policy and practice to improve the response to the lingering effects of COVID-19 as well as creating service provision that is more resilient to future pandemics or other periods of disruption.

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“…PriDem has multiple workstreams (WS) and a linked postgraduate Annual Dementia Review (ADR) project [22], each of which is described in Table 1. The methods for WS2.1 [13], WS2.2 [23], WS3.1 [24] and WS3.2 [25] are reported in more detail elsewhere. Data collection in PriDem was primarily focused on post-diagnostic care overall but included questions relating to management of dementia in primary care and dementia annual reviews.…”

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

The primary care annual dementia review: a qualitative study of the views and experiences of service users and providers

Wheatley

Brunskill

Dow

et al. 2022

Preprint

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BackgroundIn England and Wales, the Quality and Outcomes Framework (QOF) financially rewards GP practices for long-term conditions management, including completion of annual dementia reviews. There is limited evidence about how this works in practice and whether it meets patients’ and carers’ needs.MethodsData from five qualitative datasets were integrated and analysed thematically. Data comprised interviews, focus groups, and observations with 209 participants, including commissioners, managers and frontline staff in dementia services; people with dementia; carers; and policy experts.FindingsFour main themes were developed: (i) perceived benefits of annual review; (ii) variability and (in)visibility of annual review; (iii) logistics; and (iv) external influences and constraints.Variability in both the completion and quality of QOF annual dementia reviews was attributed by some to limited nuance in the current QOF dementia indicator. Many patients and carers were unaware that an annual dementia review had occurred. Participants suggested that many GPs lack the required competencies and/or capacity for successful dementia reviews.ConclusionsWork is urgently needed to improve the quality of annual dementia reviews. Potential strategies include changing the financial reimbursement to reflect both quality and quantity, so the review is tailored to the needs of the individual and their family; the creation of standardised templates; collaborative working within primary care and across sectors; and integrating dementia reviews into other long-term conditions.Key pointsQOF annual dementia reviews are a key opportunity for providing support for people with dementia in England and WalesCurrent provision of annual reviews varies both in completion rates and qualityStrategies for improvement include improving quality indicators, implementing standardised templates, and improving primary care capacity and capability to carry out reviews

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Key components of post-diagnostic support for people with dementia and their carers: A qualitative study

Cited by 41 publications

References 40 publications

Navigating the coronavirus pandemic 2 years on: Experiences of people with dementia from the British IDEAL cohort

Navigating the coronavirus pandemic 2 years on: Experiences of people with dementia from the British IDEAL cohort

Changes to postdiagnostic dementia support in England and Wales during the COVID-19 pandemic: a qualitative study

The primary care annual dementia review: a qualitative study of the views and experiences of service users and providers

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