An outcome-wide analysis of the effects of diagnostic labeling of Alzheimer's disease and related dementias on social relationships.

INTRODUCTION: This study examines how receiving a dementia diagnosis influences social relationships by race and ethnicity. METHODS: Using data from the Health and Retirement Study (10 waves; 7,159 observations) of adults 70 years and older predicted to have dementia using Gianattasio-Power scores (91% accuracy), this study assessed changes in social support, engagement, and networks after a dementia diagnosis. We utilized quasi-experimental methods to estimate treatment effects and subgroup analyses by race/ethnicity. RESULTS: A diagnostic label significantly increased the likelihood of gaining social support but reduced social engagement and one measure of social networks. With some exceptions, the results were similar by race and ethnicity. DISCUSSION: Results suggest that among older adults with assumed dementia, being diagnosed by a doctor may influence social relationships in both support-seeking and socially withdrawn ways. This suggests that discussing services and supports at the time of diagnosis is important for healthcare professionals.

Participatory Research Approaches in Alzheimer's Disease and Related Dementias Literature: A Scoping Review.

Background and Objectives: Given the increase in methodological pluralism in research on brain health, cognitive aging, and neurodegenerative diseases, this scoping review aims to provide a descriptive overview and qualitative content analysis of studies stating the use of participatory research approaches within Alzheimer's disease and related dementias (ADRD) literature globally. Research Design and Methods: We conducted a systematic search across four multidisciplinary databases (CINAHL, SCOPUS, PsycInfo, PubMed) for peer-reviewed, English-language studies addressing ADRD that explicitly described their use of a participatory research approach. We employed a systematic process for selecting articles that yielded a final sample of 163 studies. Data from articles were analyzed to chart trends from 1990 to 2022 in terminology, descriptions, application of participatory approaches, and the extent and nature of partnerships with nonacademics. Results: Results demonstrated geographic differences in the use of stated approaches between North America-where community-based participatory research predominates-and Europe, where Action Research is most common. We further found that only 73% of papers in this systematic review had identifiable definitions or descriptions of the participatory approach used. Findings also showed that 14% of articles demonstrated no evidence of engaged partnership beyond activities typical of research participants, while 23% of articles identified partnering with people with dementia, and an additional 16% reported partnerships with members from Indigenous, Black, Asian, or Latinx communities. Discussion and Implications: This scoping review identifies three areas in need of greater attention in ADRD literature using participatory research approaches. First, findings indicate the importance of strengthening the use, transparency, and rigor of participatory methods. Second, results suggest the need for greater inclusion of historically marginalized groups who are most affected by ADRD as research partners. Finally, the findings highlight the need for integrating social justice values of participatory approaches into research project designs.

Organizational Characteristics of Senior Centers and Engagement in Dementia-Friendly Communities.

Background and Objectives: Dementia-friendly communities (DFCs) are systematic and collaborative efforts to make local communities more supportive and inclusive of persons living with dementia and their care partners. This study explores how the organizational characteristics of senior centers influence their engagement in DFCs. Research Design and Methods: We used a partially mixed, concurrent, equal status design, drawing on qualitative interviews with staff from 13 senior centers leading DFC initiatives as part of a statewide dementia-friendly network in Massachusetts, as well as quantitative data from 342 senior centers collected as part of a statewide survey. Results: The qualitative results demonstrated ways in which human, social, tangible, and programmatic capital facilitate senior centers' DFC engagement. In particular, the results illuminated the importance of social capital with organizations and groups outside of the senior center, spanning the municipal, regional, and state levels. Findings from multivariate analyses further indicated robust and strong associations between higher levels of social capital, as well as more dementia-focused programming and greater variety of funding sources, with greater likelihood of engagement in DFC work. Discussion and Implications: Results indicate the importance of policy and practice to foster both organizational capacity and multilevel systems conditions to enable and motivate senior centers' involvement in DFC initiatives.

Variation in Implementing Dementia-Friendly Community Initiatives: Advancing Theory for Social Change.

Dementia-friendly communities (DFC) have emerged as a global movement to make communities more supportive and inclusive of people living with dementia (PLWD) and their care partners. This study contributes to a nascent body of research on DFC initiatives by building theory on their local implementation. Based on an analysis of data from semi-structured interviews with 23 leaders of initiatives in Massachusetts (United States), we aimed to identify key dimensions of variation in the implementation of DFC initiatives. We found that all initiatives engaged in a common set of activities, such as the facilitation of training about dementia and improving services for PLWD. Although initiatives mostly engaged in these activities in ways that targeted the community at large, in some instances, they concentrated their efforts on enhancing the dementia-friendliness of their own organizations. We describe ways in which financial, social, and human capital operate as key factors that influence the initiatives' primary focus (i.e., the community at large or their own organization). Our findings suggest the importance of helping DFC initiative leaders more explicitly specify the focal ecological level of their efforts throughout the trajectory of their work, especially in the context of resource considerations. Results also indicate ways in which DFC initiative efforts at one systems level can support those at other levels over time.

Comparison of Cognitive and Physical Decline as Predictors of Depression Among Older Adults.

Activities of daily living (ADL) limitations and cognitive impairment have been identified as key risk factors for depression among older adults. However, little has been done to compare the strength of these relationships. The current study describes the prevalence and compares the independent and joint associations of ADL and cognitive limitations with depression among older adults in the US. Analyses are based on a sample of 30,923 observations on 13,545 unique respondents from three waves (2012, 2014, and 2016) of the Health and Retirement Study. Linear and logistic multivariate regression models with random and individual fixed effects were estimated. Findings indicate that both cognitive and ADL limitations are associated with depression; however, across all models, ADL limitations have a much stronger association. Further, in our most rigorous models, having both limitations is not significantly different from having just ADL, and not cognitive, limitations.

A mobile health + health coaching application for the management of chronic non-cancer pain in older adults: Results from a pilot randomized controlled study.

Introduction: The rapid growth of mobile health (mHealth) devices holds substantial potential for improving care and care outcomes in aging adults with chronic non-cancer pain (CNCP), however, research evaluating these devices in older adults remains limited. Objective: To ascertain the feasibility and preliminary efficacy of an mHealth intervention (Mymee) that combines symptom, diet, and behavior tracking via a smartphone application with data analytics to detect associations between symptoms and lifestyle factors along with weekly health coaching sessions to mitigate CNCP in adults 55 years of age and older. Methods: Participants (N = 31) in this pilot study were recruited from one primary care practice in New York City and randomized to an intervention [app + up to 12 health coaching sessions (scheduled approximately once weekly) + usual care] or a control (app + usual care) arm. Feasibility measures included recruitment (proportion of eligible persons who enrolled) and retention rates (proportion of subjects completing a follow-up assessment) as well as adherence with the weekly coaching sessions and logging daily data on the app. Efficacy outcomes (e.g., pain intensity, self-efficacy, disability, anxiety) were assessed at baseline and follow-up (~16 weeks after baseline). Descriptive statistics were obtained and general linear mixed models used for primary analyses. Results: Participants had a mean (standard deviation) age of 67.32 (9.17) and were mostly female (61%). Feasibility outcomes were mixed as evidenced by recruitment and retention rates of 74% and 65%, respectively. The mean number of weekly coaching sessions attended by intervention participants was 6.05 (SD = 5.35), while the average number of days logging data on the app was 44.82 (34.02). We found a consistent trend in favor of the intervention, where pain intensity, affect, and quality of life measures improved considerably more among intervention (vs. control) participants. Finally, the proportion of participants with GAD-7 scores at follow up decreased by 0.35 to 0, whereas controls did not change, a significant effect in favor of the intervention (p = 0.02). Conclusions: This study supports the need for future research that seeks to enhance feasibility outcomes and confirm the efficacy of the Mymee intervention among aging adults with CNCP.

Responding to Local Needs by Mobilizing Community Assets: Age-Friendly Community Initiatives During the COVID-19 Pandemic.

BACKGROUND AND OBJECTIVES: Age-friendly community initiatives (AFCIs) strive to make localities better for long and healthy lives by fostering improvements across social, physical, and service environments. Despite the heightened need for community supports during the coronavirus disease 2019 pandemic, very little research has addressed the work of AFCIs in the context of this crisis. We aimed to develop theory on how AFCI core teams have contributed to community responses during the pandemic, as well as what contexts have influenced the initiatives' ability to contribute. RESEARCH DESIGN AND METHODS: As part of a multiyear, community-partnered study on the development of philanthropically supported initiatives in northern New Jersey, we conducted qualitative interviews with 8 AFCI core teams during the winter of 2020-2021. The interviews focused on the leaders' efforts at that time, with probing questions concerning enabling factors for their community responses. We analyzed the data using an inductive coding process encompassing open, axial, and subcoding. RESULTS: The analysis indicated four distinct roles of AFC core groups: good community partner, creator, advocate, and communications broker. We further found that AFC leaders primarily drew on three types of capital-human, social, and tangible-to enact these roles, oftentimes in cumulative ways. DISCUSSION AND IMPLICATIONS: We interpret our study's findings and their implications by integrating insights from theories of social impact. We further highlight the importance of continued research on community-centered approaches to promote aging in community during times of societal crisis, and otherwise.

Which Pain Treatment Goals Are Important to Community-Dwelling Older Adults?

OBJECTIVE: In this cross-sectional study of 237 older adults, we ascertained the importance of seven pain treatment goals and identified factors associated with their perceived importance. METHODS: Participants (mean age = 72 years) ranked each goal (e.g., pain reduction; finding a cure) on a 1 (not at all important) to 10 (extremely important) scale. We used general linear models to identify sociodemographic and pain factors independently associated with the perceived importance of each goal and repeated measures mixed models to examine their relative importance. RESULTS: The goal with the lowest adjusted score was "minimize harmful side effects from pain medications" with a mean (standard error [SE]) of 6.75 (0.239), while the highest ranked goals, "finding a cure," and "reducing my pain" had mean scores of 8.06 (0.237) and 7.89 (0.235), respectively. Pain reduction did not differ significantly from the average of the other 6 goals (P = .072) but was significantly different when compared with the goals of minimizing side effects (P < .0001) and finding a cause for the pain (P = .047), and different from the average of the five other goals excluding finding a cure (P = .021). We did not identify differences in the importance of the seven goals by gender or race/ethnicity. Age was inversely associated with the goals of minimizing harmful side effects and decreasing pain's effects on everyday activities. Pain reduction was rated more important than all other goals but finding a cure. CONCLUSIONS: Future research is needed to establish the benefits of eliciting treatment goals when delivering pain care to older adults.

Usefulness and acceptability of an animation to raise awareness to grief experienced by carers of individuals with dementia.

AIM: Many carers of individuals with dementia experience high levels of grief before and after the death of the person with dementia. This study aimed to determine the usefulness, acceptability, and relevance of an animation developed to raise awareness to grief experienced by carers of people with dementia. METHODS: This research had a cross-sectional survey design. We contacted carers of people with dementia over the phone or email. Participants evaluated the animation through an online or paper-based survey. We used descriptive statistics and analysed qualitative data using thematic analysis. We required a sample of 40 carers to adequately power the study with a target of 75% of carers finding the animation useful, acceptable, and relevant. RESULTS: 31/78 carers approached evaluated the animation. Ninety-four percent of participants found the animation relevant to their situation, meeting our target. However, we fell short of this target for usefulness (68%) and acceptability (73%). The qualitative responses suggested that participants felt the animation could help improve the understanding of grief among carers, family, friends, and healthcare professionals. Carers also shared that the animation would be most useful for carers of newly diagnosed people with dementia. CONCLUSION: Most carers of people with dementia in this study reported that the animation was useful, acceptable, and relevant. Dissemination of the resource may be useful for the majority of carers, with the caveat that a few carers may find it distressing and need to be referred for further support.

The Effect of Receiving a Diagnosis of Alzheimer's Disease and Related Dementias on Social Relationships of Older Adults.

INTRODUCTION: Although early diagnosis has been recognized as a key strategy to improve outcomes of Alzheimer's disease and related dementias (ADRD), the effect of receiving a diagnosis on patients' well-being is not well understood. This study addresses this gap by examining if receiving a dementia diagnosis influences social relationships. METHODS: Data from the 3 waves (2012, 2014, and 2016) of the Health and Retirement Study were utilized as part of this study. This study examined whether receiving a new diagnosis of ADRD changed subsequent social relationships (social networks, social engagement, and social support). Regression analyses with inverse probability weighting were performed to estimate the impact of receiving a dementia diagnosis on changes in social relationships. RESULTS: Receiving a new diagnosis of ADRD reduced both informal and formal social engagement. We found no statistically significant impacts of receiving a diagnosis of ADRD on social networks and social support. CONCLUSIONS: Results suggest that receiving a new diagnosis of ADRD may have unintended impacts on social relationships. Practitioners and policymakers should be aware of these consequences and should identify strategies to alleviate the negative impact of receiving a diagnosis of ADRD and methods to mobilize support networks after receiving a diagnosis.

Community delivery of brief therapy for depressed older adults impacted by Hurricane Sandy.

Older adults frequently under-report depressive symptoms and often fail to access services after a disaster. To address unmet mental health needs, we developed a service delivery program (SMART-MH) that combines outreach, assessment, and therapy and implemented it in New York City after Hurricane Sandy. This study aimed to examine the feasibility, effectiveness, and patients' engagement of our brief psychotherapy ("Engage"). We predicted that Engage would result in reductions of depression, and that the benefits would be comparable to those of a historical comparison group who received Engage in a controlled experimental setting. A total of 2,831 adults (age ≥ 60) impacted by Hurricane Sandy were screened for depression. Assessments and therapy were conducted in English, Spanish, Cantonese, and Russian. Depressed individuals (PHQ-9 ≥ 10) who were not in treatment were offered Engage therapy in their native language at local senior center/nutrition sites. Twelve percent of the participants reported depression (N = 333). Of these 333 participants, 201 (60%) were not receiving treatment and 143 agreed to receive Engage therapy. Linear mixed-effects model showed that depression severity decreased significantly over time. More than two thirds had a five-point reduction in PHQ-9 scores and post-treatment scores ≤9. Post-hoc comparison of standardized slopes of change found patterns of depression reductions equivalent to Engage provided in a controlled setting. Partnerships to integrate mental health care into community settings can increase detection of mental-health needs and access to services in patients' native language. Brief reward exposure-based psychotherapy delivered in the community can provide comparable benefits to those achieved in research settings.

Multidimensional Pain Assessment Tools for Ambulatory and Inpatient Nursing Practice.

BACKGROUND: One of the critical components in pain management is the assessment of pain. Multidimensional measurement tools capture multiple aspects of a patient's pain experience but can be cumbersome to administer in busy clinical settings. AIM: We conducted a systematic review to identify brief multidimensional pain assessment tools that nurses can use in both ambulatory and acute care settings. METHODS: We searched PUBMED/MEDLINE, PsychInfo, and CINAHL databases from January 1977 through December 2019. Eligible English-language articles were systematically screened and data were extracted independently by two raters. Main outcomes included the number and types of domains captured by each instrument (e.g., sensory, impact on function, temporal components) and tool characteristics (e.g., administration time, validity) that may affect instrument uptake in practice. RESULTS: Our search identified eight multidimensional assessment tools, all of which measured sensory or affective qualities of pain and its impact on functioning. Most tools measured impact of pain on affective functioning, mood, or enjoyment of life. One tool used ecological momentary assessment via a web-based app to assess pain symptoms. Time to administer the varying tools ranged from less than 2 minutes to 10 minutes, and evidence of validity was reported for seven of the eight tools. CONCLUSIONS: Our review identified eight multidimensional pain measurement tools that nurses can use in ambulatory or acute care settings to capture patients' experience of pain. The most important element in selecting a multidimensional pain measure, though, is that one tool is selected that best fits the practice and is used consistently over time.

Moving Beyond Pain as the Fifth Vital Sign and Patient Satisfaction Scores to Improve Pain Care in the 21st Century.

In an attempt to address the issue of undertreated pain, the Pain as the Fifth Vital Sign (P5VS) Initiative was established to improve the quality of pain care across clinical settings. This initiative included policy efforts such as mandatory pain screening and the implementation of pain-related questions on patient satisfaction surveys. These policies have failed to enhance the treatment of pain and may have unintentionally contributed, in part, to the opioid epidemic. To assess pain more effectively, an inter-professional team approach using multi-dimensional pain assessment tools is needed. The inter-professional team can use these multi-dimensional tools to conduct comprehensive assessments to measure aspects of the pain experience (e.g., psychological, spiritual and socio-emotional pain; impact on daily functioning) beyond its sensory component and establish realistic goals that align with patients' needs. To implement multi-dimensional pain assessments in busy clinical practices, nurses will need to play a central role. Nurses can work to ensure that patients complete the questionnaires prior to the visit. Nurses can also take the lead in the use of new technologies in the form of tablets, smart phones, and mobile apps to facilitate collecting patient-level data in the home or in a waiting room before their visits.