Community Living Research Articles

Conducting Assessments of Community-Based Programs for Individuals with Dementia and their Family Caregivers.

While the gold standard for intervention science is the randomized controlled trial (RCT), there is growing emphasis on the practical implementation and evaluation of evidence-based programs into community agencies. Assessment of program efficacy by community-based organizations can confirm planned delivery of services, implementation fidelity, and demonstrate positive outcomes, which can provide justification for funding. Methods and measures used in an RCT, however, often cannot be implemented in non-research settings and different approaches are needed. This manuscript reviews the emerging literature on program evaluation work and draws upon the authors' experiences conducting evaluations with three community-based organizations funded by Administration for Community Living to implement programs for individuals with dementia and their family care partners. This manuscript argues for an examination of the expectations of evaluation efforts for translation of research-based trials to practice and emphasizes three main strategies for assessment: (1) Development of brief tailored assessments; (2) Measuring fidelity of implementation of the program; and (3) Measuring acceptability of the program to clients.

Implementing Montessori approaches after training: A mixed methods study to examine staff understanding and movement toward action.

Background: This paper uses Normalization Process Theory (NPT) to examine staff impressions of Montessori-based program training and implementation at Veterans Affairs Community Living Centers (VA CLCs; nursing homes). Methods: We conducted a mixed-methods evaluation of Montessori Approaches to Person-Centered Care (MAP-VA) at eight VA CLCs. Trainings were conducted as either a live virtual course or a pre-recorded asynchronous class. Two NPT constructs, coherence building and cognitive participation, informed qualitative interview questions, surveys, and analyses focused on staff movement from knowledge to action during initial implementation. Data collection included staff-completed standardized post-training exams (N = 906), post-training evaluations (N = 761), and optional validated surveys on perceptions of Montessori training (N = 307). Champions (peer-leaders) from each CLC completed semi-structured qualitative interviews post-training (N = 22). Findings: The majority of staff (83%-90%) passed all courses. Staff evaluated the training highly (80%+ agreement) on learning relevant new knowledge and confidence applying new skills. On average, staff felt MAP-VA would become a normal part of their work (7.68/10 scale), and reported increased familiarity with Montessori approaches after training (p = .002). Qualitative interview data from staff trained in Montessori supported three themes concordant with the NPT dimensions of coherence building and cognitive participation. (1) Coherence regarding Montessori: staff demonstrated an understanding of the program and mentioned the benefits of Montessori compared to their previous usual routines. Cognitive participation or engagement with Montessori: (2) staff had positive feelings about Montessori principles/applications and demonstrated a willingness to try the Montessori approach, and (3) staff made sense of the new intervention through early rehearsal of Montessori principles/practices and recognized opportunities for using Montessori in future interactions. Conclusions: Montessori virtual training resulted in high levels of coherence and cognitive participation among multidisciplinary staff, evidenced by high knowledge, self-efficacy, and readiness to act. The asynchronous and synchronous trainings were accessible, relevant, and supported diverse learners.

The Pathways to Community Living Initiative (PCLI) for older adults: implementation and outcomes.

To describe implementation of the Pathways to Community Living Initiative (PCLI) within an Older People's Mental Health (OPMH) service. A retrospective observational study was conducted. Implementation comprised partnership with a specialist Residential Aged Care Facility (RACF). Data were obtained from Clinical Advisory Committee (CAC) discussion and minutes, the PCLI database, and consumer medical records. Eighteen consumers were accepted onto the program between April 2019 and March 2023. Their PCLI and rating scale outcomes alongside interventions facilitating placements are described. Interventions included OPMH case management, wide-reaching liaison, and inservices. Challenges included communication, confusion regarding roles, and differing views on capacity to accommodate complex consumers. Solutions included streamlining communication, including clinical updates in the CAC, facility appointment of a lead PCLI-nurse, and targeted RACF education. Considered interventions strengthened the OPMH and specialist RACF partnership over time. Clarification of professional roles and intersection with other services was crucial. Successful placement for PCLI consumers required consideration of personalised needs and existing resident mix, liaison with stakeholders, and targeted staff training. These strategies may apply to other health services implementing similar initiatives supporting community placements for OPMH consumers with complex needs.

Intergenerationality in the Context of Age-Friendly Cities and Communities: Older people’s Experiences and Perspectives on Place and Community Living in the UK

ABSTRACT Intergenerational communities can be understood as communities where multiple age groups interact, feel valued, and contribute to community life in an inclusive way. However, older adults in many communities in the UK can be excluded from intergenerational mixing. The PlaceAge project undertook interviews, photo-diaries, community mapping workshops, and knowledge cafés to explore older adult experiences of and participation in their cities and communities. Three key themes were generated, showcasing intergenerationality: (1) Connectedness in place and space; (2) Feeling old in siloed communities; and (3) Play in everyday life. This research emphasizes the importance of inclusive and accessible intergenerational places and activities that foster sustainable social connections and combat ageism. It highlights the value of playfulness, skill-sharing and co-mentoring, and advocates for the importance of incorporating intergenerational opportunities into the planning and development of age-friendly cities and communities.

Adoption, Implementation, and Maintenance of Evidence-Based Falls Prevention Programs.

We evaluate the implementation of evidence-based falls prevention programs (EBFPPs) of the Administration for Community Living (ACL) Grantees by (1) describing adoption; (2) evaluating implementation through participant adherence; and (3) describing program maintenance. Secondary data analysis of a national data repository included forty-four ACL grantees spanning 31 states who were funded between September 2014 and December 2019 and provided information on over 80,000 older adult participants. Descriptive statistics including frequencies, percentages, and means were used to describe adoption, implementation (adherence), and maintenance of EBFPPs. Senior centers were the most common organizations to adopt EBFPPs. Most programs were maintained at their respective organizational site through repeat offerings, with several programs (60%) being offered greater than 10 times. Information regarding adoption, implementation, and maintenance of EBFPPs is valuable in identifying the best programs suited for different organizations and their clientele, which can inform policy for scaling and sustaining EBFPPs across the nation.

The relationship between pain, quality of life and physical activity in older community living Australians

The objective of this analysis was to investigate the relationship between pain and quality of life and physical activity as a mediator in the relationship between pain and quality of life. This study utilised a combination of questionnaire data from 503 community-living people aged 70-years and over concerning quality of life, pain, and physical activity. Participants with higher levels of pain intensity experienced lower quality of life and engaged in lessphysical activity (P < 0.05). Physical activity was a mediator in the relationship between pain and quality of life(6.5 %). This study confirms an association between pain and quality of life and highlights physical activ-ity as an essential component of this relationship; further research is needed to understand the mechanism of this relationship.

Promoting Independence &amp; Community Living Through Use of Medicaid Home &amp; Community-Based Service Waivers’ Environmental Modifications

Abstract Date Presented 03/22/24 This study analyzed fiscal year 2021 Medicaid Home and Community-Based Service (HCBS) 1915(c) waivers from across the United States, serving people with any type of intellectual and developmental disabilities, to identify how environmental modification services were used. The findings identify major opportunities for the role of OT. Primary Author and Speaker: Laura Vanpuymbrouck Contributing Authors: Carli Friedman

Life-sustaining treatment decisions and family evaluations of end-of-life care for Veteran decedents in Department of Veterans Affairs nursing homes.

Modeled after the Physician Orders for Life Sustaining Treatment program, the Veterans Health Administration (VA) implemented the Life-Sustaining Treatment (LST) Decisions Initiative to improve end-of-life outcomes by standardizing LST preference documentation for seriously ill Veterans. This study examined the associations between LST documentation and family evaluation of care in the final month of life for Veterans in VA nursing homes. Retrospective, cross-sectional analysis of data for decedents in VA nursing homes between July 1, 2018 and January 31, 2020 (N = 14,575). Regression modeling generated odds for key end-of-life outcomes and family ratings of care quality. LST preferences were documented for 12,928 (89%) of VA nursing home decedents. Contrary to our hypothesis, neither receipt of wanted medications and medical treatment (adjusted odds ratio [OR]: 0.85, 95% confidence interval [CI] 0.63, 1.16) nor ratings of overall care in the last month of life (adjusted OR: 0.96, 95% CI 0.76, 1.22) differed significantly between those with and without completed LST templates in adjusted analyses. Among Community Living Center (CLC) decedents, 89% had documented LST preferences. No significant differences were observed in family ratings of care between Veterans with and without documentation of LST preferences. Interventions aimed at improving family ratings of end-of-life care quality in CLCs should not target LST documentation in isolation of other factors associated with higher family ratings of end-of-life care quality.

Physical Fitness of the Older Adult Community Living in Leiria, Portugal.

This study aimed to achieve two primary objectives. Firstly, to compare physical fitness levels based on sex, age groups, and body composition. Secondly, to examine physical fitness of the older adults against criterion-referenced fitness standard values using a representative sample from the district of Leiria in Portugal, a region undergoing exponential population growth, including a rise in the elderly population. Data from cross-sectional assessments of the Portuguese older adult community living in the Municipality of Leiria from 2014 to 2022 were collected. This study comprised a sample of 664 community-dwelling older adults (female = 480; male = 184) aged between 60 and 90 years (M = 70.34; SD = 12.67). Participants had a body mass ranging from 45 kg to 122 kg (M = 71.48; SD = 12.34) and a height ranging from 1.30 m to 1.89 m (M = 1.59; SD = 0.08). The Senior Fitness Test battery was used to evaluate parameters of physical fitness, body mass index was calculated, and abdominal circumference was measured. Females displayed a tendency to greater physical fitness compared to males, specifically in terms of lower and upper body flexibility compared to older male adults (p < 0.05). In addition, sexagenarian and older adults with normal weight tended to display greater physical fitness compared to septuagenarian and octogenarian, and overweight adults and those with obesity (p < 0.05), respectively. Information concerning physical fitness is crucial for guiding policymakers and other stakeholders in Leiria for the promotion of healthy aging among the older adult community. Furthermore, this study has established the preliminary reference standards for physical fitness, serving as a tool to promote healthy aging among Portuguese older adults residing in Leiria.

Changes in Physical Function and Physical Therapy Use in Older Veterans Not Infected by CoVID-19 Residing in Community Living Centers during the CoVID-19 Pandemic

ObjectivesExamine physical function change and physical therapy (PT) use in short-stay and long-stay residents not infected by CoVID-19 within Veterans Affairs (VA) Community Living Centers (CLCs). DesignRetrospective cohort study using Minimum Data Set (MDS) 3.0 assessments. Settings and Participants12,606 Veterans in 133 VA CLCs between September 2019 and September 2020. MethodsDifference in physical function [MDS Activities of Daily Living Score (MDS-ADL)] and PT use (minutes in past 7 days) from admission to last assessment in a period were compared between the pre-CoVID-19 (September 2019 to February 2020) and early CoVID-19 (April 2020 to September 2020) period using mixed effects regression with multivariable adjustment. Assessments after a positive CoVID-19 test were excluded. Differences were examined in the sample and repeated after stratifying into short- and long-stay stratums. ResultsVeterans admitted during early CoVID-19 had more comorbidities, worse MDS-ADL scores, and were more often long-stay residents compared with those admitted during pre-CoVID-19. In comparison to pre-CoVID-19, Veterans in VA CLCs during early CoVID-19 experienced greater improvements in their MDS-ADL (−0.49 points, 95% CI –0.27, −0.71) and received similar minutes of therapy (2.6 minutes, 95% CI –0.8, 6.0). Stratification revealed short-stay residents had relative improvements in their function (−0.69 points, 95% CI –0.44, −0.94) and higher minutes of PT (5.1 minutes, 95% CI 0.9, 9.2) during early CoVID-19 whereas long-stay residents did not see differences in functional change (0.08 points, 95% CI –0.36, 0.51) or PT use (−0.6 minutes, 95% CI –6.1, 4.9). Conclusions and ImplicationsDuring early CoVID-19, physical function improved while the amount of PT received was maintained compared with pre-CoVID-19 for Veterans in VA CLCs. Short-stay residents experienced greater improvements in physical function and increases in PT use. These findings may be partly due to selection bias relating to Veterans admitted to CLCs during early CoVID-19.

Nursing Home Star Ratings and End-Of-Life Care Quality: Lessons Learned From the Veterans Health Administration

ObjectivesMore than 25% of deaths among older adults occur in nursing homes. Thus, assessments of nursing home quality, including the widely used 5-star rating systems, should reflect quality of end-of-life (EOL) care. Our objective was to examine the associations between Veterans Affairs (VA) nursing home star ratings and quality of EOL care as measured by the VA's Bereaved Family Survey (BFS). DesignNational, retrospective observational study. Setting and ParticipantsVA nursing homes, known as Community Living Centers (CLCs). All veterans who died in a CLC from October 2018 to September 2019 whose next of kin completed a BFS. MethodsUsing linked VA data sources, we examined the BFS-Performance Measure (BFS-PM) (ie, the % of BFS respondents who provided an “excellent” overall rating) by the Overall Star Rating and domain star ratings (unannounced survey, staffing, and quality) for the 133 CLCs in our sample. Logistic and linear regression was used to examine the associations between CLC Overall Star Rating and individual-level BFS outcomes. Outcomes included the BFS-PM (primary), the 3 BFS factor scores of Respectful Care and Communication, Emotional and Spiritual Support, and Death Benefits, and 2 symptom management items. ResultsDifferences in the BFS-PM by CLC star rating were small to none and not statistically significant across all star rating domains. The relationship between a higher CLC Overall Star Rating and odds of an “excellent” BFS global rating was not statistically significant. Similarly, no significant associations were observed between a higher CLC Overall Star Rating and scores on the BFS factor scores and symptom management items. Conclusions and ImplicationsOur findings suggest that the current CLC star rating system is not sufficient to assess the quality of EOL care. BFS scores, or a comparative EOL quality of care measure, should be integrated into CLC quality rating systems.

Advocating for transportation equity: A critical examination of paratransit service reductions in St. Louis and its impact on health and community social participation

Social participation is associated with better health, quality of life, physical activity, and engagement in community living and is thus an emerging health priority. Transportation plays an important role in facilitating social participation. Our team recently reported in the Journal of Disability and Health that Missouri-dwelling adults aging with long-term physical disabilities who use paratransit services as their primary transportation mode are more likely to participate in social roles and activities outside the home compared to those who do not use paratransit. In March of 2023, the paratransit company Metro Call-A-Ride that serves St. Louis announced major scale backs to their coverage zones due in part to staffing shortages. This decision has been met with a formal complaint filed to the U.S. Department of Justice as well as protest from the St. Louis disability community and advocates. Thousands of individuals who relied on Call-A-Ride for their routine community outings—to work, grocery stores, or medical appointments, for example—have been affected by the cuts. In this commentary, we will summarize the media coverage this decision has received, including the perspectives of disability rights advocates and individuals who have been directly affected. We will then present an overview of our original research findings in the context of these recent events and a brief synthesis of existing literature on paratransit services in the U.S. The commentary will end with proposed policy, research, and programming solutions for St. Louis's Metro Call-A-Ride and public transportation at large.

Wandering Behavior and SARS-CoV-2 Infection in Veterans Affairs Community Living Center Residents

ObjectiveWandering behavior in nursing home (NH) residents could increase risk of infection. The objective of this study was to assess the association of wandering behavior with SARS-CoV-2 infection in Veterans Affairs (VA) Community Living Center (CLC) residents. DesignRetrospective cohort study. Setting & ParticipantsVeterans residing in 133 VA CLCs. MethodsWe included residents with SARS-CoV-2 test from March 1, 2020 to December 31, 2020 from VA electronic medical records. We identified CLC residents with wandering on Minimum Data Set 3.0 assessments and compared them with residents without wandering. The outcome was SARS-CoV-2 infection, as tested for surveillance testing, in those with and without wandering. Generalized linear model with Poisson link adjusted for relevant covariates was used. ResultsResidents (n = 9995) were included in the analytic cohort mean, (SD) age 73.4 (10.7); 388 (3.9%) women. The mean (SD) activities of daily living score in the overall cohort was 13.6 (8.25). Wandering was noted in 379 (3.8%) (n = 379) of the cohort. The exposure groups differed in prior dementia (92.6% vs 62.1%, standardized mean difference [SMD] = 0.8) and psychoses (41.4% vs 28.1%, SMD = 0.3). Overall, 12.5% (n = 1248) tested positive for SARS-CoV-2 and more residents among the wandering group were SARS-CoV-2 positive as compared with those in the group without wandering (19% [n = 72] vs 12.2% [n = 1176], SMD = 0.19). Adjusting for covariates, residents with wandering had 34% higher relative risk for SARS-CoV-2 infection (adjusted relative risk, 1.34; 95% CI, 1.04–1.69). Conclusions and ImplicationsCLC residents with wandering had a higher risk of SARS-CoV-2 infection. This may inform implementation of infection control and isolation policies as NHs attempt to balance ethical concepts of resident autonomy, proportionality, equity, and utilitarianism.

How Remote Work is Transforming Urban Real Estate - A Push towards Community Living

How Remote Work is Transforming Urban Real Estate - A Push towards Community Living

A Research Agenda to Support Families of People With Intellectual and Developmental Disabilities With Intersectional Identities.

Family members provide significant practical and emotional support to people with intellectual and developmental disabilities (IDD) across the lifespan. In September 2022, the State of the Science Conference on Community Living: Engaging Persons With Intellectual and Developmental Disabilities From Underserved Racial, Ethnic, Linguistic, and Cultural Groups in Research was held. This article summarizes the efforts of the workgroup that developed research goals related to supporting families of people with IDD. The focus was on families with intersectional identities and minoritized communities. Recommended areas of future research include exploratory research to better understand the experiences of these families, perspectives of families with intersectional identities about the formal support system, funding for family support and services, and inclusive research strategies.

Efficacy of Parent Training Programme in Enhancing Quality of Home and Community Living of Individuals with Intellectual Disability in Haryana (India)

Intellectual Disabled (ID) person has a right to live and received recognition and importance. There is a strong need to strengthen the social, emotional, physical and personal support systems among the families of these ID people and the society at large. The purpose of the study was to assess the effectiveness of parents training program in quality of life of children with ID on its dimension Quality of Home &amp; Community Living. Binet-Kamat Test of Intelligence and Quality of Life Scale for Persons with Disabilities was applied. Analysis of covariance (ANCOVA) was applied on the pre test scores and post test scores obtained by the participants in the experimental and control group before and after the Parent Training Programme. Parent training programme of individual with intellectual disability is effective and important interventional approach for enhancing better quality of life of parents as well as person with ID.

Relationships between cognitive flexibility performance and adaptive behavior outcomes in survivors of pediatric brain tumor

Objective: Survivors of pediatric brain tumors are at increased risk of executive function (EF) and adaptive behavior difficulties. While previous research suggests that executive dysfunction impacts suboptimal adaptive outcomes, the specific elements of EF influencing this relationship remain unexplored. This study examines the relationship between cognitive flexibility and adaptive behavior in survivors compared to healthy controls. Methods: 86 survivors (M age(SD)=23.41(4.24), 44 females) and 86 controls (M age(SD)=23.09(4.50), 44 females) completed the Delis-Kaplan Executive Function System Trail Making Test (TMT) and Verbal Fluency Test (VFT). The Letter-Number Sequencing (LNS) and Category Switching (CS) conditions were isolated as measures of cognitive flexibility. Informants provided responses to obtain adaptive behavior ratings using the Scales of Independent Behavior-Revised (SIB-R). Linear regressions explored relationships between cognitive flexibility and SIB-R scores in survivors compared to controls. Results: For both TMT and VFT, the relationship between cognitive flexibility and adaptive behavior was significantly different between survivors and controls for SIB-R scores in Social Communication, Community Living, and Personal Living Skills (p<.0125). Survivors’ better LNS performance predicted greater SIB-R scores across the same 3 domains (all p= <.001, r 2semipartial=.08). Similarly, survivors’ better CS performance predicted greater SIB-R scores across the same 3 domains (p = 0.002 to .02, r 2semipartial =.03 to .04). No significant relationships were found in controls (all p >.05). After adjusting for working memory and inhibitory control, most relationships remained significant in survivors (p= <.001 to .046, r 2semipartial=.02 to .08). Conclusion: These findings reveal a robust, positive relationship between cognitive flexibility performance and adaptive behaviors specific to survivors.

Direct Support Professionals: Diversity, Disparities, and Deepening Crisis.

In the United States, direct support professionals (DSPs) support people with intellectual and developmental disabilities (IDD) so they can live in the community. Thirty years of deinstitutionalization and the development of community living options would not have been possible without DSPs. Although life for people with IDD improved greatly, working conditions, wages/benefits, demands, stress/burnout, and trauma experienced by DSPs have worsened. Turnover and vacancy rates threaten the availability of community supports for too many people with IDD. DSPs from diverse racial, ethnic, linguistic, and cultural backgrounds face significant workplace disparities. These issues were discussed during the Research and Training Center on Community Living's 2022 State of the Science Conference. We propose important research questions needing solutions to continue constructively addressing these critical issues.

Social Cohesion of Kampong Lorong Buangkok: Community Amidst Singaporean Industrialization

This paper aims to conduct a comprehensive examination of the Malay community living in Kampong Lorong Buangkok, the last village in Singapore's Hougang area. This community is intriguing due to its preservation of customs, traditions, and a simplified economic system amidst Singapore's rapid industrial development. The study utilizes in-depth interviews with current residents of Kampong Lorong Buangkok and reveals their steadfast commitment to upholding Malay traditions as a social foundation. Residents persist in maintaining a traditional economy designed to promote unity and support productive community life. This economic system functions to enhance social unity, assisting the residents in coping with Singapore's high cost of living. The robust social cohesion within the community has enabled Kampong Lorong Buangkok to persist despite political tensions and the encroaching pressures of rapid Singaporean industrialization that jeopardize the village's survival.

Transmission of Severe Acute Respiratory Syndrome Coronavirus 2 Among Residents and Employees in a Veterans Affairs Community Living Center: A 42-Month Prospective Cohort Study.

Understanding routes of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) transmission in long-term care facilities is essential for the development of effective control measures. Between March 1, 2020, and August 31, 2023, we identified coronavirus disease 2019 (COVID-19) cases among residents and employees in a Veterans Affairs community living center that conducted routine screening for asymptomatic COVID-19. Contact tracing was conducted to identify suspected transmission events, and whole genome sequencing was performed to determine the relatedness of SARS-CoV-2 samples. During the 42-month study period, 269 cases of COVID-19 were diagnosed, including 199 employees and 70 residents. A total of 48 (24.1%) employees and 30 (42.9%) residents were asymptomatic. Sequencing analysis provided support for multiple events in which employees transmitted SARS-CoV-2 to co-workers and residents. There was 1 episode of likely transmission of SARS-CoV-2 from one resident to another resident, but no documented transmissions from residents to employees. Transmission of SARS-CoV-2 in the community living center predominantly involved transmission from employees to co-workers and residents. There is a need for improved measures to prevent transmission of SARS-CoV-2 by healthcare personnel.