Identifying Primary Care Models of Dementia Care that Improve Quality of Life for People Living with Dementia and their Care Partners: An Environmental Scan.

Dementia is a growing concern in Canada, affecting peoples' health and raising the cost of care. Between June and October 2019, we conducted an environmental scan to identify primary care models, strategies, and resources for dementia care from 11 pre-selected countries and assess their impact on quality-of-life measures. Search strategies included a rapid scoping review, grey literature search, and discussions with stakeholders. Eighteen primary care-based models of dementia care were identified. Common factors include team-based care, centralized care/case coordination, individual treatment plans, a stepped-care approach, and support for care partners. Five provinces had released a dementia strategy. Evidence of positive outcomes supported primary care-based models for dementia care, although only one model demonstrated evidence of impact on quality of life. Although these findings are encouraging, further research is needed to identify primary care-based models of dementia care that demonstrably improve quality of life for people living with dementia and their care partners.

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.

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.

RéSUMé: Dans 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-jacents ­ les 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.

A scoping review of COVID-19 experiences of people living with dementia.

OBJECTIVES: Compared with the general population, people living with dementia have been unequivocally affected by the COVID-19 pandemic. However, there is a paucity of knowledge on the COVID-19 impact on people with dementia and their care partners. The objective of this scoping review was to synthesize the existing literature on the COVID-19 experiences of people with dementia and their care partners. METHODS: Following Arksey and O'Malley's scoping review framework, we searched five electronic databases (Scopus, PubMed, CINAHL, EMBASE, and Web of Science) and an online search engine (Google Scholar). Inclusion criteria consisted of English-language articles focusing on the COVID-19 experiences of people with dementia and their care partners. SYNTHESIS: Twenty-one articles met our inclusion criteria: six letters to the editor, seven commentaries, and eight original research studies. In the literature, five main themes were identified: (i) care partner fatigue and burnout; (ii) lack of access to services and supports; (iii) worsening neuropsychiatric symptoms and cognitive function; (iv) coping with COVID-19; and (v) the need for more evidence-informed research. Factors such as living alone, having advanced dementia, and the length of confinement were found to exacerbate the impact of COVID-19. CONCLUSION: Urgent action is needed to support people living with dementia and their care partners in the pandemic. With little access to supports and services, people with dementia and their care partners are currently at a point of crisis. Collaboration and more evidence-informed research are critical to reducing mortality and supporting people with dementia during the pandemic.

RéSUMé: OBJECTIFS: Comparativement à la population générale, les personnes vivant avec la démence ont incontestablement été touchées par la pandémie de COVID-19. On en sait toutefois peu sur l'effet de la COVID-19 sur les personnes atteintes de démence et leurs partenaires soignants. Notre étude de champ visait à résumer la littérature existante sur l'expérience de la COVID-19 chez les personnes atteintes de démence et leurs partenaires soignants. MéTHODE: En suivant le cadre méthodologique d'Arksey et O'Malley pour les études de champ, nous avons interrogé cinq bases de données électroniques (Scopus, PubMed, CINAHL, EMBASE et Web of Science) et un moteur de recherche en ligne (Google Scholar). Nous avons inclus tous les articles en anglais portant sur l'expérience de la COVID-19 chez les personnes atteintes de démence et leurs partenaires soignants. SYNTHèSE: Vingt et un articles ont correspondu à nos critères d'inclusion : six lettres publiées dans le courrier des lecteurs, sept commentaires et huit études de recherche originales. Cinq grands thèmes sont ressortis de ces articles : i) la fatigue et l'épuisement professionnel des partenaires soignants; ii) le manque d'accès aux services et aux mesures d'aide; iii) l'aggravation des symptômes neuropsychiatriques et des fonctions cognitives; iv) les façons de faire face à la COVID-19; et v) le besoin de plus de recherche fondée sur les preuves. Nous avons constaté que trois facteurs, soit le fait de vivre seul(e), la démence avancée et la durée du confinement, exacerbaient l'effet de la COVID-19. CONCLUSION: Une action urgente est nécessaire pour aider les personnes vivant avec la démence et leurs partenaires soignants durant la pandémie. N'ayant guère accès aux mesures d'aide et aux services, les personnes atteintes de démence et leurs partenaires soignants se trouvent actuellement dans une situation de crise. La collaboration et la recherche fondée sur les preuves sont essentielles pour réduire la mortalité et aider les personnes atteintes de démence durant la pandémie.

Patient engagement in research related to dementia: A scoping review.

Patient 'engagement' or 'involvement' in health research broadly refers to including people with lived experience (i.e. individuals with personal experience of a health issue and their friends, family and caregivers or carers) in the research process. Although previous reviews have systematically summarized approaches to patient engagement in research, it is unclear whether and how engagement activities have been implemented or adapted for research related to dementia. We conducted a scoping review to describe the extent and nature of patient engagement approaches that have been used to involve persons with dementia and their care partners in research. We then summarized the reported barriers, enablers, and impacts of this engagement. Fifty-four research articles were included in the review and almost all were published after 2010. Persons with dementia and their care partners have been engaged in diverse phases of the research process. The majority of engagement involved both persons with dementia and care partners. Barriers and enablers to engagement included those identified for general patient engagement in research, but some more specific to engaging persons with dementia and their care partners were also reported. Very few studies assessed the impact of patient engagement. While the arguments for patient engagement in research are compelling, research to demonstrate the impact - on the research process and outcomes as well as on persons with dementia, care partners, researchers, research institutions and society - is still needed.