Improving End-of-Life Care for People with Dementia in LTC Homes During the COVID-19 Pandemic and Beyond

Kaasalainen, Sharon; McCleary, Lynn; Vellani, Shirin; Pereira, José

doi:10.5770/cgj.24.493

Cited by 12 publications

(16 citation statements)

References 47 publications

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“…Third, interventions are necessary to address discriminatory practices and structural barriers to accessing healthcare and support services (such as limited access to specialist services, hospital transfers, palliative care services, health information, physician visits, and end-of-life care) for people with dementia (Banerjee & Estabrooks, 2021;Kaasalainen et al, 2021). More specifically, safeguards and formal policies are critical to ensuring that healthcare protocols and guidelines do not stigmatize and/or discriminate against people with dementia with respect to accessing healthcare and life-saving services (Suárez-González et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

“…Similarly, a report by the Canadian Institute for Health Information (2021) found that, compared to pre-pandemic years, people with dementia in long-term care homes experienced decreased physician visits, reduced access to specialist services, an increased use of antipsychotic drugs, and reduced hospital transfers for illness and infection (CIHI, 2021). Kaasalainen et al (2021) note that the surge of COVID-19 and rationing of healthcare resources have intensified the pre-existing need for improvements in palliative services and end-of-life care for people with dementia. However, this absence of equitable access to healthcare services for people with dementia has led to unnecessary suffering and loss of life (Peisah et al, 2020).…”

Section: Inequitable Access To Healthcare and Support Servicesmentioning

confidence: 99%

“…In Canada, statistics show that dementia is the most common co-morbidity, accounting for 36% of all COVID-19related deaths (O'Brien et al, 2020). Moreover, a growing number of reports highlight human rights violations against people with dementia related to inequitable access to healthcare services, life-saving resources, health information, social connection, palliative services, and end-of-life care (Banerjee & Estabrooks, 2021;Bethell et al, 2021;Kaasalainen et al, 2021;Mialkowski, 2020;Suárez-González et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

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Improving the health equity and the human rights of Canadians with dementia through a social determinants approach: a call to action in the COVID-19 pandemic

Bacsu

O’Connell

Wighton

2022

Can J Public Health

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In 2019, the Canadian Government released a national dementia strategy that identified the need to address the health inequity (e.g., avoidable, unfair, and unjust differences in health outcomes) and improve the human rights of people living with dementia. However, the novel coronavirus disease 2019 (COVID-19) pandemic is having an inequitable impact on people with dementia in terms of mortality and human rights violations. As the new Omicron COVID-19 variant approaches its peak, our commentary highlights the need for urgent action to support people living with dementia and their care partners. More specifically, we argue that reducing COVID-19 inequities requires addressing underlying population-level factors known as the social determinants of health. Health disparities cannot be rectified merely by looking at mortality rates of people with dementia. Thus, we believe that improving the COVID-19 outcomes of people with dementia requires addressing key determinants such as where people live, their social supports, and having equitable access to healthcare services. Drawing on Canadian-based examples, we conclude that COVID-19 policy responses to the pandemic must be informed by evidence-informed research and collaborative partnerships that embrace the lived experience of diverse people living with dementia and their care partners. RésuméDans sa stratégie nationale sur la démence publiée en 2019, le gouvernement canadien définissait le besoin de redresser les iniquités en santé (p. ex. les différences évitables, inéquitables et injustes dans les résultats cliniques) et de mieux faire respecter les droits humains des personnes vivant avec la démence. La pandémie de la nouvelle maladie à coronavirus 2019 (COVID-19) touche cependant de façon inéquitable les personnes atteintes de démence sur le plan de la mortalité et des violations des droits humains. À l'heure où le nouveau variant Omicron de la COVID-19 est sur le point d'atteindre son pic, nous faisons valoir qu'il faut appliquer des mesures urgentes pour aider les personnes vivant avec la démence et leurs partenaires soignants. Plus précisément, pour atténuer les effets inégaux de la COVID-19, il faut aborder les facteurs populationnels sous-jacentsles déterminants sociaux de la santé. Les disparités de l'état de santé ne peuvent pas être corrigées par la simple observation des taux de mortalité chez les personnes atteintes de démence. Nous croyons donc que pour améliorer les résultats cliniques de la COVID-19 chez ces personnes, il faut aborder les grands déterminants comme leurs milieux de vie, leurs soutiens sociaux et l'équité d'accès aux services de soins de santé. À partir d'exemples canadiens, nous concluons que les interventions stratégiques contre la pandémie de COVID-19 doivent être éclairées par des études fondées sur des données probantes et par des partenariats de collaboration qui tiennent compte du vécu de toutes sortes de personnes vivant avec la démence et de leurs partenaires soignants.

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Section: Discussionmentioning

confidence: 99%

Section: Inequitable Access To Healthcare and Support Servicesmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Improving the health equity and the human rights of Canadians with dementia through a social determinants approach: a call to action in the COVID-19 pandemic

Bacsu

O’Connell

Wighton

2022

Can J Public Health

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“…This study sought to explore the perspectives of LTCH staff on engaging in ACP discussions with residents they care for. A palliative approach that incorporates ACP should be integrated with ongoing chronic disease management [55], yet it is not a norm practiced in most LTCHs [56]. Evidence indicates that the use of invasive life-sustaining treatments has doubled for LTCH residents including those with advanced dementia.…”

Section: Discussionmentioning

confidence: 99%

Interdisciplinary staff perceptions of advance care planning in long-term care homes: a qualitative study

et al. 2022

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Background Residents living in long-term care homes (LTCH) have complex care needs, multiple chronic conditions, increasing frailty and cognitive impairment. A palliative approach that incorporates advance care planning (ACP) should be integrated with chronic disease management, yet it is not a norm in most LTCHs. Despite its growing need, there remains a lack of staff engagement in the ACP process. Objectives The aim of this study was to explore the perceptions and experiences of interdisciplinary staff related to the practice of ACP in LTCHs. Methods This study is part of a larger Canadian project, iCAN ACP, that aims to increase uptake, and access to ACP for older Canadians living with frailty. An exploratory qualitative design using an interpretive descriptive approach was employed utilizing focus groups and semi-structured interviews with staff from four LTCHs in Ontario, Canada. Findings There were 98 participants, including nurses (n = 36), physicians (n = 4), personal support workers (n = 34), support staff (n = 23), and a public guardian (n = 1). Three common themes and nine subthemes were derived: a) ongoing nature of ACP; b) complexities around ACP conversations; and c) aspirations for ACP becoming a standard of care in LTCHs. Discussion The findings of this study provide important contributions to our understanding of the complexities surrounding ACP implementation as a standard of practice in LTCHs. One of the critical findings relates to a lack of ACP conversations prior to admission in the LTCHs, by which time many residents may have already lost cognitive abilities to engage in these discussions. The hierarchical nature of LTCH staffing also serves as a barrier to the interdisciplinary collaboration required for a successful implementation of ACP initiatives. Participants within our study expressed support for ACP communication and the need for open lines of formal and informal interdisciplinary communication. There is a need for revitalizing care in LTCHs through interdisciplinary care practices, clarification of role descriptions, optimized staffing, capacity building of each category of staff and commitment from the LTCH leadership for such care. Conclusion The findings build on a growing body of research illustrating the need to improve staff engagement in ACP communication in LTCHs.

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“…7 A recent consensus paper highlighted the importance of supporting dementia care partners at the end of their family member's life during the pandemic. 8 Dementia family care partners are subject to heightened risk for anxiety, stress, and caregiver burden from lockdown and social distancing because persons living with dementia, especially those in the later stages, 9 are at risk for increased behavioral symptoms, and negative psychosocial outcomes during COVID-19. 10 Hospice staff play a crucial role in supporting dementia family care partners at the end of life.…”

Section: Introductionmentioning

confidence: 99%

Supporting dementia family care partners during COVID-19: Perspectives from hospice staff

et al. 2022

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Improving End-of-Life Care for People with Dementia in LTC Homes During the COVID-19 Pandemic and Beyond

Cited by 12 publications

References 47 publications

Improving the health equity and the human rights of Canadians with dementia through a social determinants approach: a call to action in the COVID-19 pandemic

Improving the health equity and the human rights of Canadians with dementia through a social determinants approach: a call to action in the COVID-19 pandemic

Interdisciplinary staff perceptions of advance care planning in long-term care homes: a qualitative study

Supporting dementia family care partners during COVID-19: Perspectives from hospice staff

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