Rapid review of decision-making for place of care and death in older people: lessons for COVID-19

West, Emily; Moore, Kirsten; Kupeli, Nuriye; Sampson, Elizabeth L; Nair, Pushpa; Aker, Narin; Davies, Nathan

doi:10.1093/ageing/afaa289

Cited by 20 publications

(24 citation statements)

References 29 publications

(47 reference statements)

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“…Studies of palliative care services are underway and are likely to include people living with dementia. The decision‐making process in older adults may need to happen more rapidly in the context of COVID‐19, 128 and two ongoing UK studies are developing advance care planning and decision‐making tools for people affected by dementia in care homes with nursing (Brazil et al., UKRI, Table 7) and family carers 144 . UKRI, Table 7).…”

Section: Resultsmentioning

confidence: 99%

Dementia wellbeing and COVID‐19: Review and expert consensus on current research and knowledge gaps

Liu

Howard

Banerjee

et al. 2021

Int J Geriat Psychiatry

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Objectives In response to a commissioned research update on dementia during the COVID‐19 pandemic, a UK‐based working group, comprising dementia researchers from a range of fields and disciplines, aimed to describe the impact of the pandemic on dementia wellbeing and identify priorities for future research. Methods We supplemented a rapid literature search (including unpublished, non‐peer reviewed and ongoing studies/reports) on dementia wellbeing in the context of COVID‐19 with expert group members' consensus about future research needs. From this we generated potential research questions the group judged to be relevant that were not covered by the existing literature. Results Themes emerged from 141 studies within the six domains of the NHS England COVID‐19 Dementia Wellbeing Pathway: Preventing Well, Diagnosing Well, Treating Well, Supporting Well, Living Well and Dying Well. We describe current research findings and knowledge gaps relating to the impact on people affected by dementia (individuals with a diagnosis, their carers and social contacts, health and social care practitioners and volunteers), services, research activities and organisations. Broad themes included the potential benefits and risks of new models of working including remote healthcare, the need for population‐representative longitudinal studies to monitor longer‐term impacts, and the importance of reporting dementia‐related findings within broader health and care studies. Conclusions The COVID‐19 pandemic has had a disproportionately negative impact on people affected by dementia. Researchers and funding organisations have responded rapidly to try to understand the impacts. Future research should highlight and resolve outstanding questions to develop evidence‐based measures to improve the quality of life of people affected by dementia.

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Section: Resultsmentioning

confidence: 99%

Dementia wellbeing and COVID‐19: Review and expert consensus on current research and knowledge gaps

Liu

Howard

Banerjee

et al. 2021

Int J Geriat Psychiatry

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“…It is vital that carers are supported and do not take on this burden of responsibility. It is important that carers understand support is available and they should not be afraid to seek support, as multidisciplinary professional involvement aids decision making and helps achieve goals of preferred place of care and place of death [ 27 , 28 ].…”

Section: Discussionmentioning

confidence: 99%

“…The pandemic has changed decision making around place of care. Care at home appears to be the preferred option [ 27 ]. This may reduce COVID-19 risk and ensure families can continue to see their relatives, but brings its own challenges and difficulties.…”

Section: Discussionmentioning

confidence: 99%

Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life

Aker

West

Davies

et al. 2021

BMC Health Serv Res

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Background People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life. Methods We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May–June 2020. Results An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. Conclusions Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.

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“…The decision-making process in older adults may need to happen more rapidly in the context of COVID-19, 128 and two ongoing UK studies are developing advance care planning and decision-making tools for people affected by dementia in care homes with nursing (Brazil et al, UKRI, Table 7) and family carers. 144 UKRI, Table 7).…”

Section: Supporting Wellmentioning

confidence: 99%

Dementia wellbeing and COVID-19: review and expert consensus on current research and knowledge gaps

Liu¹,

Howard²,

Banerjee³

et al. 2021

Preprint

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Objectives: In response to an NHS England enquiry, a UK-based working group, comprising dementia researchers from a range of fields and disciplines, aimed to describe the impact of the COVID-19 pandemic on dementia wellbeing and identify priorities for future research. Methods: We supplemented a rapid literature search (including unpublished, non-peer reviewed and ongoing studies/reports) on dementia wellbeing in the context of COVID-19 with expert group members’ consensus about future research needs. From this we generated potential research questions the expert group judged to be relevant that were not covered by the existing literature. Results: Themes emerged from 141 studies within the six domains of the NHS England COVID-19 Dementia Wellbeing Pathway: Preventing Well, Diagnosing Well, Treating Well, Supporting Well, Living Well and Dying Well. We describe current research findings and knowledge gaps relating to the impact on people affected by dementia (individuals with a diagnosis, their carers and social contacts, health and social care practitioners and volunteers), services, research activities and organisations. Broad themes included the potential benefits and risks of new models of working including remote healthcare, the need for population-representative longitudinal studies to monitor longer-term impacts, and the importance of reporting dementia-related findings within broader healthcare studies. Conclusions: The COVID-19 pandemic has had a disproportionately negative impact on people affected by dementia. Researchers and funding organisations have responded rapidly to try to understand the impacts. Future research should highlight and resolve outstanding issues to develop evidence-based measures to improve the quality of life of people affected by dementia.

show abstract

Rapid review of decision-making for place of care and death in older people: lessons for COVID-19

Cited by 20 publications

References 29 publications

Dementia wellbeing and COVID‐19: Review and expert consensus on current research and knowledge gaps

Dementia wellbeing and COVID‐19: Review and expert consensus on current research and knowledge gaps

Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life

Dementia wellbeing and COVID-19: review and expert consensus on current research and knowledge gaps

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