Engaging People With Lived Experience of Dementia in Research: Perspectives From a Multi-disciplinary Research Network.

Background: Patient and public involvement/engagement in research on dementia is not new, but it is becoming increasingly common. The objective of this study was to describe researchers' knowledge, attitudes, and activities related to engaging people with lived experience of dementia in research, and how these differ by research theme. Methods: Data were from an online, anonymous survey of researchers within the Canadian Consortium on Neurodegeneration in Aging. Results: Of the 84 researchers who completed the survey (response rate: 27%), 89% agreed they understood the meaning of engaging people with lived experience in research, although this was lower among biomedical researchers. Almost all (93%) agreed that people with lived experience could contribute meaningfully to research, and nearly two-thirds were already incorporating engagement in their research. Some engagement practices reported differed by research theme. Irrespective of the type of research they conduct, researchers were most often motivated by improving the relevance and quality of their research. Conclusions: These findings support an optimistic outlook for engaging people with lived experience of dementia in research, but identify differences across research themes. Understanding approaches to incorporate, evaluate, and adapt engagement activities across research disciplines are needed to enable researchers, as well as others involved in research, to develop and target strategies for patient and public involvement/engagement in research on dementia.

Education as drug policy: A realist synthesis of continuing professional development for opioid agonist therapy.

BACKGROUND: Continuing professional development (CPD) for opioid agonist therapy (OAT) has been identified as a key health policy strategy to improve care for people living with opioid use disorder (OUD) and to address rising opioid-related harms. To design and deliver effective CPD programs, there is a need to clarify how they work within complex health system and policy contexts. This review synthesizes the literature on OAT CPD programs and educational theory to clarify which interventions work, for whom, and in what contexts. METHODS: A systematic review and realist synthesis of evaluations of CPD programs focused on OAT was conducted. This included record identification and screening, theory familiarization, data collection, analysis, expert consultation, and iterative context-intervention-mechanism-outcome (CIMO) configuration development. RESULTS: Twenty-four reports comprising 21 evaluation studies from 5 countries for 3373 providers were reviewed. Through iterative testing of included studies with relevant theory, five CIMO configurations were developed. The programs were categorized by who drove the learning outcomes (i.e., system/policy, instructor, learner) and their spheres of influence (i.e., micro, meso, macro). There was a predominance of instructor-driven programs driving change at the micro level, with few policy-driven macro-influential programs, inconsistent with the promotion of CPD as a clear opioid crisis policy-level intervention. CONCLUSION: OAT CPD is challenged by mismatches in program justifications, objectives, activities, and outcomes. Depending on how these program factors interact, OAT CPD can operate as a barrier or facilitator to OUD care. With more deliberate planning and consideration of program theory, programs more directly addressing diverse learner and system needs may be developed and delivered. OAT CPD as drug policy does not operate in isolation; programs may feed into each other and intercalate with other policy initiatives to have micro, meso, and macro impacts on educational and population health outcomes.

Factors influencing participation in physical activity for persons living with dementia in rural and northern communities in Canada: a qualitative study.

OBJECTIVE: In recognition that engagement in physical activities for persons living with dementia can be challenging in rural and northern communities, the objective of this study was to explore the factors influencing physical activity participation among persons living with dementia in rural/northern communities and to identify the locally-driven mitigation strategies participants used to address barriers to physical activity. SETTING: Interviews and focus groups were conducted in two locations in northern British Columbia, Canada including a rural community (<10 000 persons) and a medium-sized geographically isolated city (<80 000 persons). Both communities are located at substantial distances (>700 km) from larger urban centres. PARTICIPANTS: Twenty-nine individuals participated including healthcare providers (n=8), community exercise professionals (n=12), persons living with dementia (n=4) and care partners (n=5). RESULTS: Rural and northern contextual factors including aspects of the built and natural environment were the main drivers of physical activity for persons living with dementia. Limited capacity in the health system to support physical activity due to a lack of referrals, poor communication mechanisms and limited resources for programming created challenges for physical activity participation. At the community level, local champions filled gaps in physical activity programming by leveraging informal networks to organise opportunities. Programme-level factors included a lack of consistency in staff, and challenges defining programme scope given limited population size and the fear of stigma for persons living with dementia. CONCLUSIONS: Environmental context and limited access to specialised programming affect the opportunities for persons living with dementia to engage in physical activities. Rural and northern communities showed resiliency in providing physical activity opportunities yet remained fragile due to human resource challenges. Without reliable resources and sustained support from the health system, local champions remain vulnerable to burnout. Enhancing support for local champions may provide greater stability and support to physical activity promotion in rural and northern communities.

Using a Virtual Community of Practice to Support Stroke Best Practice Implementation: Mixed Methods Evaluation.

BACKGROUND: Successful best practice implementation is influenced by access to peer support and knowledge exchange. The Toronto Stroke Networks Virtual Community of Practice, a secure social media platform, is a knowledge translation tool supporting dissemination and adoption of stroke best practices for interprofessional stroke stakeholders. OBJECTIVE: The aim of this study is to evaluate the use of a virtual community of practice (VCoP) in supporting regional stroke care best practice implementation in an urban context. METHODS: A mixed methods approach was used. Qualitative data were collected through focus groups and interviews with stroke care provider members of the VCoP working in acute and rehabilitation settings. Thematic analysis was completed, and the Wenger Value Creation Model and developmental evaluation were used to reflect practice change. Quantitative data were collected and analyzed using website analytics on VCoP use. RESULTS: A year after implementation, the VCoP had 379 members. Analysis of web analytics data and transcripts from focus groups and interviews conducted with 26 VCoP members indicated that the VCoP provided immediate value in supporting user networking, community activities, and interactions. Skill acquisition and changes in perspective acquired through discussion and project work on the VCoP were valued by members, with potential value for supporting practice change. Learning about new stroke best practices through the VCoP was a starting point for individuals and teams to contemplate change. CONCLUSIONS: These findings suggest that the VCoP supports the early stages of practice change and stroke best practice implementation. Future research should examine how VCoPs can support higher levels of value creation for implementing stroke best practices.

Using Twitter to Examine Stigma Against People With Dementia During COVID-19: Infodemiology Study.

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.

Using the Health Belief Model to Understand Age Differences in Perceptions and Responses to the COVID-19 Pandemic.

COVID-19 severity and mortality risk are greater for older adults whereas economic impact is deeper for younger adults. Using the Health Belief Model (HBM) as a framework, this study used a web-based survey to examine how perceived COVID-19 susceptibility and severity and perceived efficacy of recommended health behaviors varied by age group and were related to the adoption of health behaviors. Proportional odds logistic regression was used to examine the relationship between age group and perceived COVID-19 susceptibility, severity, impact, and health behavior efficacy and adoption. Structural equation modeling based on HBM constructs examined the relationships between health beliefs and behaviors. Data from 820 participants (Ontario, Canada) were analyzed (age: 42.7, 16.2 years; 79% women). Middle-aged and older adults reported greater concerns about the personal risk of hospitalization and mortality, economic impact, and social impact of COVID-19 than young adults. Middle-aged adults also reported greatest concern for other age groups. Adoption and perceived efficacy of health behaviors was similar across age groups with few exceptions. Both middle-aged and older-adults were more likely to perceive their own and each other's age groups as responding adequately to COVID-19 compared to young adults. Structural equation modeling indicated perceived benefits of health behaviors were the primary driver of behavior uptake, with socioeconomic factors and perceived severity and susceptibility indirectly associated with uptake through their influence on perceived benefits. Overall, these results suggest adoption of health behaviors is very high with few differences between age groups, despite differences in perceived impact of COVID-19. Public health communications should focus on the benefits of health behaviors to drive adoption.

COVID-19 and Quarantine, a Catalyst for Ageism.

In February 2021, France had more than 76,000 deaths due to COVID-19 and older adults were heavily affected. Most measures taken to reduce the impact of COVID-19 (quarantine, visit ban in nursing home, etc.) significantly influenced the lives of older adults. Yet they were rarely consulted about their implementation. Exclusion of and discrimination against older adults has been accentuated during the COVID-19 pandemic. While many articles discussing COVID-19 also mention ageism, few actually incorporate the perspectives and opinions of older adults. Our research aims to assess the ageism experienced by older adults during the COVID-19 pandemic. We conducted interviews with older adults (63-92 years, mean age = 76 years) in an urban area of France. Participants reported experiencing more ageism during the COVID-19 pandemic, including hostile and benevolent ageism from older adults' families. Despite reports of experiencing ageist attitudes and behaviors from others, however, older adults also identified positive signs of intergenerational solidarity during this COVID-19 crisis.

Dementia- and mild cognitive impairment-inclusive exercise: Perceptions, experiences, and needs of community exercise providers.

PURPOSE: For persons who are at risk for, or living with, dementia exercise is recommended, yet many become or remain inactive. Exercise providers play a vital role in promoting and facilitating exercise in these groups by recognizing and being responsive to the needs of persons with mild cognitive impairment (MCI) or dementia in exercise programming. The objective of this study was to explore the experiences, perceptions, and needs of community exercise providers regarding dementia. MATERIALS & METHODS: Five focus groups were held with community exercise providers (n = 30) who deliver exercise to older adults (≥55 years) in municipal, non-profit, for profit, or academic settings. RESULTS: Three themes were developed: (1) Unique experiences and diverse perceptions: suggests unique personal experiences with MCI and dementia inform distinct perceptions of dementia; (2) Dementia-Inclusive Practices: learning as you go and adapting for the individual: reflects exercise providers' approaches to recognizing and accommodating individuals' unique abilities and preferences; (3) Training and Best Practices, with Flexibility: identifies exercise providers' desires for MCI- and dementia-specific knowledge and training strategies, which need to recognize dementia heterogeneity between and within persons over time. CONCLUSIONS: These findings highlight a willingness of exercise providers to support dementia-inclusive exercise, but recognize they have minimal training and lack educational resources to do so. Formal training resources may enhance exercise accessibility and participation for persons with MCI or dementia.

Physical activity perceptions, experiences, and beliefs of older adults with mild cognitive impairment or Alzheimer's disease and their care partners.

Physical activity (PA) participation provides functional and social benefits for persons with mild cognitive impairment (MCI) and Alzheimer's disease (AD), but PA participation in these populations is low. To support health promotion initiatives for cognitively impaired older adults, this study explored the perceptions, experiences, and beliefs of older adults with cognitive impairment and their caregivers concerning PA. Ten care dyads (community-dwelling adult aged ≥65 years diagnosed with MCI or mild-to-moderate AD and their care partner) participated in semi-structured interviews informed by the Theoretical Domains Framework about their PA perceptions, experiences, and beliefs. Interpretive phenomenological analysis of interview transcripts yielded 4 emergent themes: (1) PA as a meaningful activity, (2) experience versus evidence as motivating, (3) participation is possible despite dementia, and (4) care partners as enablers. Findings from this study address a research gap concerning the PA perceptions, experiences, and beliefs of cognitively impaired older adults and their care partners. Novelty Older adults with MCI/AD want to and are capable of engaging in PA. Care partners are critical supporters of PA participation in MCI/AD. Adapted health promotion strategies could enhance PA in MCI/AD.

Ageism and COVID-19: what does our society's response say about us?

The goal of this commentary is to highlight the ageism that has emerged during the COVID-19 pandemic. Over 20 international researchers in the field of ageing have contributed to this document. This commentary discusses how older people are misrepresented and undervalued in the current public discourse surrounding the pandemic. It points to issues in documenting the deaths of older adults, the lack of preparation for such a crisis in long-term care homes, how some 'protective' policies can be considered patronising and how the initial perception of the public was that the virus was really an older adult problem. This commentary also calls attention to important intergenerational solidarity that has occurred during this crisis to ensure support and social-inclusion of older adults, even at a distance. Our hope is that with this commentary we can contribute to the discourse on older adults during this pandemic and diminish the ageist attitudes that have circulated.