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1.
JMIR Aging ; 5(2): e38363, 2022 Jun 27.
Article in English | MEDLINE | ID: covidwho-1923875

ABSTRACT

BACKGROUND: The COVID-19 pandemic is taking a serious toll on people with dementia. Given the rapidly evolving COVID-19 context, policymakers and practitioners require timely, evidence-informed research to address the changing needs and challenges of people with dementia and their family care partners. OBJECTIVE: Using Twitter data, the objective of this study was to examine the COVID-19 impact on people with dementia from the perspective of their family members and friends. METHODS: Using the Twint application in Python, we collected 6243 relevant tweets over a 15-month time frame. The tweets were divided among 11 coders and analyzed using a 6-step thematic analysis process. RESULTS: Based on our analysis, 3 main themes were identified: (1) frustration and structural inequities (eg, denied dignity and inadequate supports), (2) despair due to loss (eg, isolation, decline, and death), and (3) resiliency, survival, and hope for the future. CONCLUSIONS: As the COVID-19 pandemic persists and new variants emerge, people with dementia and their family care partners are facing complex challenges that require timely interventions. More specifically, tackling COVID-19 challenges requires revisiting pandemic policies and protocols to ensure equitable access to health and support services, recognizing the essential role of family care partners, and providing financial assistance and resources to help support people with dementia in the pandemic. Revaluating COVID-19 policies is critical to mitigating the pandemic's impact on people with dementia and their family care partners.

2.
JMIR Res Protoc ; 11(5): e33023, 2022 May 19.
Article in English | MEDLINE | ID: covidwho-1875275

ABSTRACT

BACKGROUND: Informal carers play a significant role in supporting people living with dementia; however, carers in rural areas are often isolated, with limited access to support services. Although dementia-friendly communities provide valued support for carers, access to them is limited as they are few and geographically dispersed. OBJECTIVE: This study's aim was to increase support and services for rural informal carers of people living with dementia by using information and communication technologies accessed through an integrated website and mobile app-the Verily Connect app. The objective of this protocol is to detail the research design used in a complex study that was situated in a challenging real-world setting integrating web-based and on-ground technology and communication. Therefore, it is anticipated that this protocol will strengthen the research of others exploring similar complex concepts. METHODS: A stepped-wedge, open-cohort cluster randomized controlled trial was conducted to implement Verily Connect across 12 rural Australian communities. The Verily Connect intervention delivered web-based, curated information about dementia, a localized directory of dementia services and support, group and individual chat forums, and peer support through videoconference. During the implementation phase of 32 weeks, Verily Connect was progressively implemented in four 8-weekly waves of 3 communities per wave. Usual care, used as a comparator, was available to carers throughout the study period. Participants and researchers were unblinded to the intervention. There were 3 cohorts of participants: carers, volunteers, and staff; participants were recruited from their communities. The primary outcome measure was perceived carer social support measured using the Medical Outcomes Study-Social Support Survey. Volunteers and staff provided feedback on their participation in Verily Connect as qualitative data. Qualitative data were collected from all cohorts of participants through interviews and focus groups. Process evaluation data were collected through interviews and memos written by research staff. Data on the costs of implementing Verily Connect were collected by the research team members and evaluated by a health economist. RESULTS: Between August 2018 and September 2019, a total of 113 participants were recruited. There were 37 (32.7%) carers, 39 (34.5%) volunteers, and 37 (32.7%) health service staff. The study was complex because of the involvement of multiple and varied communities of carers, volunteers, health service staff, and research team members originating from 5 universities. Web-based technologies were used as intervention strategies to support carers and facilitate the process of undertaking the study. CONCLUSIONS: The Verily Connect trial enabled the testing and further development of a web-based approach to increasing support for carers of people living with dementia across a diverse rural landscape in Australia. This protocol provides an example of how to conduct a pragmatic evaluation of a complex and co-designed intervention involving multiple stakeholders. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12618001213235; https://tinyurl.com/4rjvrasf. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/33023.

3.
Can J Public Health ; 113(2): 204-208, 2022 04.
Article in English | MEDLINE | ID: covidwho-1841736

ABSTRACT

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.


Subject(s)
COVID-19 , Dementia , Health Equity , COVID-19/epidemiology , Canada/epidemiology , Dementia/epidemiology , Human Rights , Humans , Pandemics , SARS-CoV-2 , Social Determinants of Health
4.
JMIR Aging ; 5(1): e35677, 2022 Mar 31.
Article in English | MEDLINE | ID: covidwho-1742141

ABSTRACT

BACKGROUND: During the pandemic, there has been significant social media attention focused on the increased COVID-19 risks and impacts for people with dementia and their care partners. However, these messages can perpetuate misconceptions, false information, and stigma. OBJECTIVE: This study used Twitter data to understand stigma against people with dementia propagated during the COVID-19 pandemic. METHODS: We collected 1743 stigma-related tweets using the GetOldTweets application in Python from February 15 to September 7, 2020. Thematic analysis was used to analyze the tweets. RESULTS: Based on our analysis, 4 main themes were identified: (1) ageism and devaluing the lives of people with dementia, (2) misinformation and false beliefs about dementia and COVID-19, (3) dementia used as an insult for political ridicule, and (4) challenging stigma against dementia. Social media has been used to spread stigma, but it can also be used to challenge negative beliefs, stereotypes, and false information. CONCLUSIONS: Dementia education and awareness campaigns are urgently needed on social media to address COVID-19-related stigma. When stigmatizing discourse on dementia is widely shared and consumed amongst the public, it has public health implications. How we talk about dementia shapes how policymakers, clinicians, and the public value the lives of people with dementia. Stigma perpetuates misinformation, pejorative language, and patronizing attitudes that can lead to discriminatory actions, such as the limited provision of lifesaving supports and health services for people with dementia during the pandemic. COVID-19 policies and public health messages should focus on precautions and preventive measures rather than labeling specific population groups.

5.
Can J Aging ; 41(1): 71-95, 2022 Mar.
Article in English | MEDLINE | ID: covidwho-1730219

ABSTRACT

Multiple transitions across care settings can be disruptive for older adults with dementia and their care partners, and can lead to fragmented care with adverse outcomes. This scoping review was conducted to identify and classify care trajectories across multiple settings for people with dementia, and to understand the prevalence of multiple transitions and associated factors at the individual and organizational levels. Searches of three databases, limited to peer-reviewed studies published between 2007 and 2017, provided 33 articles for inclusion. We identified 26 distinct care trajectories. Common trajectories involved hospital readmission or discharge from hospital to long-term care. Factors associated with transitions were identified mainly at the level of demographic and medical characteristics. Findings suggest a need for investing in stronger community-based systems of care that may reduce transitions. Further research is recommended to address knowledge gaps about complex and longitudinal care trajectories and trajectories experienced by sub-populations of people living with dementia.

6.
BMC Health Serv Res ; 22(1): 148, 2022 Feb 04.
Article in English | MEDLINE | ID: covidwho-1703316

ABSTRACT

BACKGROUND: The aging of rural populations contributes to growing numbers of people with dementia in rural areas. Despite the key role of primary healthcare in rural settings there is limited research on effective models for dementia care, or evidence on sustaining and scaling them. The purpose of this study was to identify factors influencing sustainability and scale-up of rural primary care based memory clinics from the perspective of healthcare providers involved in their design and delivery. METHODS: Participants were members of four interdisciplinary rural memory clinic teams in the Canadian province of Saskatchewan. A qualitative cross-sectional and retrospective study design was conducted. Data were collected via 6 focus groups (n = 40) and 16 workgroup meetings held with teams over 1 year post-implementation (n = 100). An inductive thematic analysis was used to identify themes. RESULTS: Eleven themes were identified (five that influenced both sustainability and scale-up, three related to sustainability, and three related to scale-up), encompassing team, organizational, and intervention-based factors. Factors that influenced both sustainability and scale-up were positive outcomes for patients and families, access to well-developed clinic processes and tools, a confident clinic leader-champion, facilitation by local facilitators and the researchers, and organizational and leadership support. Study findings revealed the importance of particular factors in the rural context, including facilitation to support team activities, a proven ready-to-use model, continuity of team members, and mentoring. CONCLUSIONS: Interdisciplinary models of dementia care are feasible in rural settings if the right conditions and supports are maintained. Team-based factors were key to sustaining and scaling the innovation.


Subject(s)
Primary Health Care , Rural Population , Cross-Sectional Studies , Humans , Qualitative Research , Retrospective Studies , Saskatchewan
7.
Clin Gerontol ; 45(1): 159-171, 2022.
Article in English | MEDLINE | ID: covidwho-1301273

ABSTRACT

OBJECTIVES: We describe the evaluation of remote training, an innovative use of technology to maintain older adults' virtual connection with their community and socialization, which were disrupted by the pandemic. Remote training was conducted via telephone using principles of cognitive rehabilitation and delivered by trained clinicians. METHODS: We thematically analyzed trainer reflection notes and interviews with older adult participants. RESULTS: The main facilitators were technology training with exposure, and the main barrier was fear of technology. CONCLUSIONS: We describe how telephone-based training grounded in principles of cognitive rehabilitation can be used to remotely train older adults to use new technology and to help them maintain their community-based connections and engage in socialization. CLINICAL IMPLICATIONS: Fear of technology during the pandemic can cause significant impairment in social functioning for older adults, at least when the only method for socialization is technology mediated such as during the COVID-19 pandemic. Empathically delivered remote training in an understanding manner can reduce fear and increase social and community connections in the era of physical distancing.


Subject(s)
COVID-19 , Pandemics , Aged , Humans , Phobic Disorders , SARS-CoV-2 , Social Isolation
8.
Can J Public Health ; 112(3): 400-411, 2021 06.
Article in English | MEDLINE | ID: covidwho-1229507

ABSTRACT

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.


Subject(s)
COVID-19/psychology , Caregivers/psychology , Dementia/therapy , COVID-19/epidemiology , Dementia/epidemiology , Humans
9.
Canadian Journal of Public Health ; 112(3):400-411, 2021.
Article in English | ProQuest Central | ID: covidwho-1210039

ABSTRACT

ObjectivesCompared 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.MethodsFollowing 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.SynthesisTwenty-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.ConclusionUrgent 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.

10.
JMIR Aging ; 4(2): e28010, 2021 Apr 23.
Article in English | MEDLINE | ID: covidwho-1204173

ABSTRACT

BACKGROUND: Technology use has become the most critical approach to maintaining social connectedness during the COVID-19 pandemic. Older adults (aged >65 years) are perceived as the most physiologically susceptible population to developing COVID-19 and are at risk of secondary mental health challenges related to the social isolation that has been imposed by virus containment strategies. To mitigate concerns regarding sampling bias, we analyzed a random sample of older adults to understand the uptake and acceptance of technologies that support socialization during the pandemic. OBJECTIVE: We aimed to conduct a population-based assessment of the barriers and facilitators to engaging in the use of technology for web-based socialization among older adults in the Canadian province of British Columbia during the COVID-19 pandemic. METHODS: We conducted a cross-sectional, population-based, regionally representative survey by using the random-digit dialing method to reach participants aged >65 years who live in British Columbia. Data were analyzed using SPSS (IBM Corporation), and open-text responses were analyzed via thematic analysis. RESULTS: Respondents included 400 older adults aged an average of 72 years, and 63.7% (n=255) of respondents were female. Most respondents (n=358, 89.5%) were aware of how to use technology to connect with others, and slightly more than half of the respondents (n=224, 56%) reported that, since the beginning of the pandemic, they used technology differently to connect with others during the pandemic. Additionally, 55.9% (n=223) of respondents reported that they adopted new technology since the beginning of the pandemic. Older adults reported the following key barriers to using technology: (1) a lack of access (including finance-, knowledge-, and age-related issues); (2) a lack of interest (including a preference for telephones and a general lack of interest in computers); and (3) physical barriers (resultant of cognitive impairments, stroke, and arthritis). Older adults also reported the following facilitators: (1) a knowledge of technologies (from self-teaching or external courses); (2) reliance on others (family, friends, and general internet searches); (3) technology accessibility (including appropriate environments, user-friendly technology, and clear instructions); and (4) social motivation (everyone else is doing it). CONCLUSIONS: Much data on older adults' use of technology are limited by sampling biases, but this study, which used a random sampling method, demonstrated that older adults used technology to mitigate social isolation during the pandemic. Web-based socialization is the most promising method for mitigating potential mental health effects that are related to virus containment strategies. Providing telephone training; creating task lists; and implementing the facilitators described by participants, such as facilitated socialization activities, are important strategies for addressing barriers, and these strategies can be implemented during and beyond the pandemic to bolster the mental health needs of older adults.

11.
Can J Public Health ; 112(3): 400-411, 2021 06.
Article in English | MEDLINE | ID: covidwho-1171670

ABSTRACT

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.


Subject(s)
COVID-19/psychology , Caregivers/psychology , Dementia/therapy , COVID-19/epidemiology , Dementia/epidemiology , Humans
12.
J Med Internet Res ; 23(2): e26254, 2021 02 03.
Article in English | MEDLINE | ID: covidwho-1069701

ABSTRACT

BACKGROUND: The COVID-19 pandemic is affecting people with dementia in numerous ways. Nevertheless, there is a paucity of research on the COVID-19 impact on people with dementia and their care partners. OBJECTIVE: Using Twitter, the purpose of this study is to understand the experiences of COVID-19 for people with dementia and their care partners. METHODS: We collected tweets on COVID-19 and dementia using the GetOldTweets application in Python from February 15 to September 7, 2020. Thematic analysis was used to analyze the tweets. RESULTS: From the 5063 tweets analyzed with line-by-line coding, we identified 4 main themes including (1) separation and loss; (2) COVID-19 confusion, despair, and abandonment; (3) stress and exhaustion exacerbation; and (4) unpaid sacrifices by formal care providers. CONCLUSIONS: There is an imminent need for governments to rethink using a one-size-fits-all response to COVID-19 policy and use a collaborative approach to support people with dementia. Collaboration and more evidence-informed research are essential to reducing COVID-19 mortality and improving the quality of life for people with dementia and their care partners.


Subject(s)
COVID-19 , Caregivers , Dementia , Family , Health Personnel , Social Media , Bereavement , Data Mining , Humans , Nursing Homes , Pandemics , Quality of Life , Risk , SARS-CoV-2 , Stress, Psychological , Visitors to Patients
13.
J Med Internet Res ; 23(1): e24098, 2021 01 27.
Article in English | MEDLINE | ID: covidwho-1054954

ABSTRACT

Remote approaches for dementia research are required in the era of COVID-19, but moving a research program from in person to remote involves additional considerations. We recommend using outcome measures that have psychometric properties for remote delivery, and we recommend against adapting in-person scales for remote delivery without evidence for psychometric equivalency. We suggest remote research designs that maximize benefit for participants, which could have implications for control groups. Researchers should plan for flexibility in their methods for remote research and must not assume all participants will be able to videoconference; telephone-only research is possible. We recommend performing an assessment of information communication technology infrastructure and prior exposure to this technology with each participant before making a final choice on remote methods for research. In general, researchers should adapt their methods for remote research to each participant rather than requesting participants to adapt to the researchers. Screening for sensory loss should be conducted, and the impact of this on the use of technology for remote research should be considered. In this viewpoint, we detail how individualized training is required prior to engaging in remote research, how training plans interact with cognitive impairments and, finally, the steps involved in facilitating technology-based remote data collection.


Subject(s)
Biomedical Research/trends , Dementia , Telemedicine , Videoconferencing , COVID-19 , Cognitive Dysfunction , Humans
14.
Alzheimers Dement (Amst) ; 12(1): e12111, 2020.
Article in English | MEDLINE | ID: covidwho-808863

ABSTRACT

INTRODUCTION: Despite the urgent need for remote neurobehavioral assessment of individuals with cognitive impairment, guidance is lacking. Our goal is to provide a multi-dimensional framework for remotely assessing cognitive, functional, behavioral, and physical aspects of people with cognitive impairment, along with ethical and technical considerations. METHODS: Literature review on remote cognitive assessment and multidisciplinary expert opinion from behavioral neurologists, neuropsychiatrists, neuropsychologists, and geriatricians was integrated under the auspices of the Alzheimer Society of Canada Task Force on Dementia Care Best Practices for COVID-19. Telephone and video approaches to assessments were considered. RESULTS: Remote assessment is shown to be acceptable to patients and caregivers. Informed consent, informant history, and attention to privacy and autonomy are paramount. A range of screening and domain-specific instruments are available for telephone or video assessment of cognition, function, and behavior. Some neuropsychological tests administered by videoconferencing show good agreement with in-person assessment but still lack validation and norms. Aspects of the remote dementia-focused neurological examination can be performed reliably. DISCUSSION: Despite challenges, current literature and practice support implementation of telemedicine assessments for patients with cognitive impairment. Convergence of data across the clinical interview, reliable and brief remote cognitive tests, and remote neurological exam increase confidence in clinical interpretation and diagnosis.

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