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.

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.

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.