Comparison of behaviors characteristic of autism spectrum disorder behaviors and behavioral and psychiatric symptoms of dementia.

BACKGROUND: Similarities exist in behavioral expression of autism spectrum disorder (ASD) and Alzheimer's disease and related dementias (ADRD). The purpose of this study was to assess presence of behavioral and psychiatric symptoms of dementia (BPSD) and ASD-like behaviors in adults with ADRD. METHODS: Using a cross-sectional design, data from University of Kentucky Alzheimer's Disease Center participant cohort were used. Hierarchical linear regression was used to assess (1) the relationship between ASD-like behaviors (measured by the Gilliam Autism Rating Scale-Second Edition, GARS-2) and BPSD measured by the Neuropsychiatric Inventory (NPI), and (2) the relationship between ASD-like behaviors and dementia severity (measured by the Clinical Dementia Rating [CDR] sum of boxes), when controlling for BPSD. RESULTS: Complete data were available for 142 participants. Using α of 0.05, analyses identified ASD behaviors were significantly associated with BPSD severity ratings (r = 0.47; p < 0.001) and dementia severity (r = 0.46; p < 0.001). GARS-2 explained 6.1% (p < 0.001) of variance in CDR sum of boxes when controlling for NPI and other covariates. DISCUSSION: There is significant overlap in behaviors characteristic of ASD and BPSD as assessed by the NPI and GARS-2, despite the use of these instruments in disparate developmental vs. aging settings. ASD behaviors appear to not be solely present in early childhood as a manifestation of ASD but are also present in older adults with neurodegenerative cognitive impairment. Such associations warrant additional research into causation, assessment, and behavioral interventions to further enable new therapeutic approaches targeting ASD behaviors across the lifespan.

Alzheimer Disease Worries, Fears, and Stigma and Their Relationship to Genetic and Interventional Research Engagement.

BACKGROUND: Alzheimer disease (AD) research increasingly requires healthy individuals willing to undergo genetic testing. OBJECTIVE: This study seeks to: (1) describe older adults' beliefs about AD genetic testing, worry about AD, and fear of AD stigma, and (2) explore how these constructs relate to research participation. METHODS: Surveys were sent to participants active in AD-observational research and those that were not. Three measures of research participation were explored: (1) being a current research participant, (2) self-report of clinical trial participation, and (3) expressing genetic registry interest. RESULTS: The majority of the 502 respondents perceived greater benefit than the risk associated with AD genetic testing. AD worry and perceptions of AD stigma were low. Higher levels of AD worry and lower perceptions of AD stigma were associated with being a current AD research volunteer. AD worry and stigma were unrelated to clinical trial participation or genetic registry interest; these research participation measures were associated with AD genetic testing benefit. CONCLUSIONS: Beliefs about AD genetic testing, AD worry, and AD stigma are related to research participation, but relationships vary based on the research participation investigated. Future work should identify how these findings can inform outreach and recruitment efforts.

Real-world Site Experiences With GeneMatch: The Role of a Recruitment-related Registry in the Context of Local Site Effort to Support Alzheimer Disease Prevention Research.

BACKGROUND: Registries have been proposed as a novel way to accelerate targeted recruitment for Alzheimer disease prevention clinical trials. However, there are limited data regarding registry effectiveness at accelerating recruitment and enrollment in research opportunities. This manuscript explores one site's experience with GeneMatch, a novel genetic registry for Alzheimer disease research. METHODS: Referrals from GeneMatch to the site were tracked to understand the demographics of those referred and ultimate research enrollment outcomes. Referrals were cross-referenced with the site's existing recruitment database, to better understand the role of GeneMatch in the context of existing recruitment efforts. RESULTS: GeneMatch referred 86 individuals to the site, resulting in 54 individuals coming into the site to pursue research involvement further. The majority of referrals (52/86, 60.47%) did not have prior contact with the site about research engagement, and having prior site contact did not significantly relate to engaging in on-site research. CONCLUSIONS: GeneMatch helped identify new individuals for participation in Alzheimer disease prevention studies. Results highlight the value of continuing local site-level efforts while also taking advantage of registries to enhance research recruitment. Ongoing efforts to further develop these and other novel strategies for outreach and engagement are much needed.

Associations of Future Cognitive Decline with Sexual Satisfaction among Married Older Adults.

Objectives: This study sought to explore changes in longitudinal cognitive status in relation to baseline measures of intimacy and sexuality in cognitively intact, married older adults.Methods: Baseline intimacy and sexuality survey data from 155, cognitively intact, married, older adults were collected using a novel survey instrument that explored the domains of: 1) romance with one's partner, 2) sexual satisfaction, 3) beliefs about sexuality, and 4) social support and emotional intimacy. These data were analyzed in relation to change in cognitive status over a 10-year follow-up period using binary logistic regression modeling. Exploratory factor analysis was used to assess the shared variance of survey items attributable to intimacy and sexuality without specification of an a priori hypothesis regarding the association of intimacy and sexuality with future change in cognitive status.Results: Over the 10-year study period, 33.5% (n = 52) of individuals developed cognitive impairment. Participants with greater sexual satisfaction scores at baseline were statistically less likely to convert from cognitively intact to mild cognitive impairment or dementia in the future (p = .01). The domains of romance with one's partner, beliefs about sexuality, and social support/emotional intimacy were not predictive of future longitudinal changes in cognitive status.Conclusions: Sexual satisfaction is associated with longitudinal cognitive outcomes in cognitively intact, married, older adults.Clinical implications: Clinicians should routinely assess for sexual satisfaction among older adults and refer to appropriate providers, such as couples or sex therapists, when appropriate.

Identifying Adaptive and Maladaptive Behaviors Following a Diagnosis of Mild Cognitive Impairment.

INTRODUCTION: Individual reactions to a diagnosis of mild cognitive impairment (MCI) can vary in a wide range of both adaptive and maladaptive responses. Understanding such reactions to diagnosis is important to maximize adaptive responses that can promote continued independence. METHODS: In this pilot study, the Aging and Memory Quality of Life survey was developed to facilitate an understanding of adaptive and maladaptive behaviors results from a diagnosis of MCI. The Aging and Memory Quality of Life was administered to 45 individuals diagnosed with MCI and 45 cognitively normal participants serving as control subjects matched for age, sex, and education. Study partners were surveyed to collect corroborating and or discrepant observer responses. RESULTS: Inconsistent with study partners' reporting, MCI subjects may be underreporting physical limitations, and overreporting medication compliance. MCI subjects identified challenges to managing financial affairs. DISCUSSION: Developing strategies to circumvent the development of maladaptive behaviors could significantly reduce morbidity and mortality in MCI patients.

The Effectiveness of Community-based Outreach Events for the Promotion of African American Research Participation.

INTRODUCTION: African Americans (AA) are disproportionately affected by Alzheimer's disease and related dementias yet are under-represented in clinical research. Outreach events for AA are offered to encourage research participation; however, this approach's effectiveness remains largely unexplored. METHODS: To explore the effectiveness of AA-focused versus general audience events, the authors examined attendance data over 5 years, encompassing 10 general audience events and 4 events focused on AA. For each individual, the authors searched center records for recruitment contacts and research enrollment. Summary scores for attendance at AA-focused events, general audience events, and total events were compared between those with and without research involvement. RESULTS: Out of 773 unique AA that attended ≥1 event, 88 became or were involved in research (11.4% engagement). AA-focused events achieved greater AA attendance than general audience events. Although research-engaged individuals were more likely to have ever attended an AA-focused event than a general audience event, attendance at AA-focused events did not statistically relate to research engagement. In contrast, attendance at events focused on the general public was related to an increased likelihood of research participation. DISCUSSION: These findings have important implications for designing and implementing community events to encourage AA research participation.

Behaviors Characteristic of Autism Spectrum Disorder in a Geriatric Cohort With Mild Cognitive Impairment or Early Dementia.

INTRODUCTION: Autism spectrum disorder (ASD) represents a heterogenous cluster of clinical phenotypes that are classically diagnosed by the time of adolescence. The possibility of late-life emergence of ASD has been poorly explored. METHODS: To more fully characterize the possibility of late-life emergence of behaviors characteristic of ASD in mild cognitive impairment and AD, we surveyed caregivers of 142 older persons with cognitive impairment from the University of Kentucky Alzheimer's Disease Center Longitudinal Cohort using the Gilliam Autism Rating Scale-2. RESULTS: Participants with high autism index ratings (autism "possible/very likely," n=23) reported significantly (statistically and clinically) younger age at the onset of cognitive impairment than those who scored in the autism "unlikely" range (n=119): 71.14±10.9 vs. 76.65±8.25 (P=0.034). In addition, those in the autism "possible/very likely" group demonstrated advanced severity of cognitive impairment, indicated by the Clinical Dementia Rating Scale Sum of Boxes scores. DISCUSSION: Data demonstrate that ASD behaviors may seem de novo of degenerative dementia and such behaviors are more prevalent in those with early onset dementia. Further work elucidating a connection between ASD and dementia could shed light on subclinical forms of ASD, identify areas of shared neuroanatomic involvement between ASD and dementias, and provide valuable insights that might hasten the development of therapeutic strategies.

Perspectives of African American Older Adults on Brain Health: "Brains Get Tired Too".

BACKGROUND: Statistics suggest that African Americans have a disproportionately high prevalence of Alzheimer disease (AD), yet are less likely to enroll in AD clinical trials than white individuals. Although research has previously identified various barriers to participation, relatively little is known about how to overcome these barriers and engage African American individuals in AD research. The purpose of this study is to better understand how African Americans conceptualize brain health and their ability to influence healthy brain aging. METHODS: Three African American community advocates each facilitated a small group of African American participants over 8 to 10 sessions of a photovoice process involving discussion and sharing of images focused on brain health. Sessions were audiotaped and transcribed verbatim and photographs were uploaded. FINDINGS: Participants recognized a diversity of what brain health can mean and indicated an interconnectedness between brain health and its influences. Key factors that were identified by group members as key to brain health included lifestyle factors, activity, and engagement and nature, resiliency, and positivity. DISCUSSION: These emic insights into perceptions of brain health may represent important foci for targeted messaging strategies to promote brain health and research engagement within the African American population.

Health Behaviors in Rural Appalachia.

OBJECTIVES: To better understand the disproportionate burdens from cancer, cardiovascular disease, diabetes mellitus, stroke, and other chronic conditions related to energy balance, we studied diet and physical activity patterns in younger and older adults in rural Appalachia by using a nonclinical, cross-sectional, community-based sampling approach. METHODS: A total of 651 younger (ages 18-59) and 254 older (ages ≥60) Appalachians were recruited from 43 churches or community organizations. Participants answered questions about fruit and vegetable intake and physical activity. Analyses were adjusted for clustering within churches. RESULTS: Compared with older Appalachians, younger Appalachians consumed significantly fewer fruits and vegetables (P = 0.01) and reported significantly more moderate-to-vigorous physical activity (P = 0.01). Regardless of age, engagement in healthy behaviors was suboptimal and well below national averages. CONCLUSIONS: This community-based sample demonstrated elevated behavioral risk factors that likely contribute to some of the nation's highest rates of premature mortality. Despite suboptimal dietary intake and physical activity, results indicate some potential leverage points between the generations that may be used to improve health. For example, the older generation could benefit from engaging with their younger relatives in physical activities while advocating for a better-rounded diet. Given traditions of intergenerational connectedness, mutual aid, and self-reliance, transmission of healthier behaviors across the generations may be beneficial in the rural Appalachian context.

Alzheimer Disease Clinical Trial Recruitment: Does Participation in a Brief Cognitive Screen at a Community Health Fair Promote Research Engagement?

BACKGROUND: Slow participant recruitment impedes Alzheimer disease research progress. Although research suggests that direct involvement with potential participants supports enrollment, strategies for how best to engage potential participants are still unclear. PURPOSE: This study explores whether community health fair (HF) attendees who engage in a brief cognitive screen (BCS) are more likely to enroll in research than attendees who do not complete a BCS. SUBJECTS: A total of 483 HF attendees. METHODS: Attendees were tracked for a 1-year period to ascertain research involvement. RESULTS: In total, 364 attendees expressed interest in research and 126 completed a BCS. Over the follow-up period, 21 individuals prescreened as eligible and 19 enrolled in an investigational study. Among all HF attendees, BCS completers had a 2.5-fold increase in subsequently prescreening as eligible as compared with non-BCS completers. However, when limited only to participants who stated an interest in research, this difference was no longer significant. CONCLUSIONS: Completing a BCS at a community event may be an indicator of future research engagement, but for those already interested in participation, the BCS may be a poor indicator of future involvement. The BCS may also reduce anxiety and stigma around memory evaluation, which may translate into research engagement in the future.

Motivators for Alzheimer's disease clinical trial participation.

BACKGROUND: Alzheimer's disease (AD) research progress is impeded due to participant recruitment challenges. This study seeks to better understand, from the perspective of individuals engaged in clinical trials (CTs), research motivations. METHODS: Participants, or their caregivers, from AD treatment and prevention CTs were surveyed about research motivators. RESULTS: The 87 respondents had a mean age of 72.2, were predominantly Caucasian, 55.2% were male, and 56.3% had cognitive impairment. An overwhelming majority rated the potential to help themselves or a loved one and the potential to help others in the future as important motivators. Relatively few respondents were motivated by free healthcare, monetary rewards, or to make others happy. CONCLUSIONS: Recruitment efforts should focus on the potential benefit for the individual, their loved ones, and others in the future rather than free healthcare or monetary rewards.

The Role of Primary Care Providers in Encouraging Older Patients to Change Their Lifestyle Behaviors.

OBJECTIVES: This study sought to identify older patients' perceptions of primary care providers' influence on their likelihood of improving diet and physical activity. METHODS: 104 adults ages 65 and older were interviewed immediately following a routine primary care visit about their plans and motivations for behavior change and how their clinic visit would influence their likelihood of making lifestyle changes. All interviews were recorded, transcribed and analyzed using a constant comparison approach. RESULTS: Participants reported that their providers influence their health behaviors by developing strong relationships, addressing concerns and encouraging change, and providing concrete instruction. When providers did not discuss diet or physical activity, or mentioned these topics only briefly, participants often perceived the message that they should continue their current behaviors. CONCLUSIONS: Whether and how diet and physical activity are discussed in primary care influences the likelihood that older adults will make changes in these behaviors. CLINICAL IMPLICATIONS: These findings highlight the need for a patient-centered counseling approach and caution providers to think twice before omitting discussion of the need for lifestyle change.

The Effectiveness of Small-group Community-based Information Sessions on Clinical Trial Recruitment for Secondary Prevention of Alzheimer's Disease.

Effective and practical recruitment strategies are needed to ensure successful recruitment into the Alzheimer disease clinical trials. To facilitate successful recruitment for the NIH-sponsored A4 (Anti-Amyloid treatment in Asymptomatic Alzheimer's disease, NCT02008357) trial for the secondary prevention of Alzheimer disease, we developed a small-group community information session to attract and recruit potential research participants. After a successful media campaign, 213 participants were screened through telephone for eligibility, identifying 127 potential participants. Participants were given the option of a traditional one-on-one recruitment session or a small-group session. One-on-one recruitment was performed for 15 participants requesting this procedure, and yielded an overall recruitment rate of 67% (n=10). Substantially more individuals (n=112, 88%) requested small-group sessions to learn about the study. After attending the small-group informational sessions, 98% of potential participants self-reported a greater understanding of the study; and the recruitment rate from these sessions was 90%. Small-group sessions not only improved recruitment success rates, but also contributed to significantly shorter median time for consent processes (20 vs. 60 min) and reduced staff time spent on persons not recruited. Small-group education programs are an effective strategy for enhancing recruitment success and facilitating practical recruitment into clinical trials with high recruitment demands.

The Role of the Built Environment: How Decentralized Nurse Stations Shape Communication, Patient Care Processes, and Patient Outcomes.

Increasingly, health communication scholars are attending to how hospital built environments shape communication, patient care processes, and patient outcomes. This multimethod study was conducted on two floors of a newly designed urban hospital. Nine focus groups interviews were conducted with 35 health care professionals from 10 provider groups. Seven of the groups were homogeneous by profession or level: nursing (three groups), nurse managers (two groups), and one group each of nurse care technicians ("techs") and physicians. Two mixed groups were comprised of staff from pharmacy, occupational therapy, patient care facilitators, physical therapy, social work, and pastoral care. Systematic qualitative analysis was conducted using a conceptual framework based on systems theory and prior health care design and communication research. Additionally, quantitative modeling was employed to assess walking distances in two different hospital designs. Results indicate nurses walked significantly more in the new hospital environment. Qualitative analysis revealed three insights developed in relationship to system structures, processes, and outcomes. First, decentralized nurse stations changed system interdependencies by reducing nurse-to-nurse interactions and teamwork while heightening nurse interdependencies and teamwork with other health care occupations. Second, many nursing-related processes remained centralized while nurse stations were decentralized, creating systems-based problems for nursing care. Third, nursing communities of practices were adversely affected by the new design. Implications of this study suggest that nurse station design shapes communication, patient care processes, and patient outcomes. Further, it is important to understand how the built environment, often treated as invisible in communication research, is crucial to understanding communication within complex health care systems.

Perspectives of healthcare practitioners: An exploration of interprofessional communication using electronic medical records.

Contemporary state-of-the-art healthcare facilities are incorporating technology into their building design to improve communication and patient care. However, technological innovations may also have unintended consequences. This study seeks to better understand how technology influences interprofessional communication within a hospital setting based in the United States. Nine focus groups were conducted including a range of healthcare professions. The focus groups explored practitioners' experiences working on two floors of a newly designed hospital and included questions about the ways in which technology shaped communication with other healthcare professionals. All focus groups were recorded, transcribed, and coded to identify themes. Participant responses focused on the electronic medical record, and while some benefits of the electronic medical record were discussed, participants indicated use of the electronic medical record has resulted in a reduction of in-person communication. Different charting approaches resulted in barriers to communication between specialties and reduced confidence that other practitioners had received one's notes. Limitations in technology-including limited computer availability, documentation complexity, and sluggish sign-in processes-also were identified as barriers to effective and timely communication between practitioners. Given the ways in which technology shapes interprofessional communication, future research should explore how to create standardised electronic medical record use across professions at the optimal level to support communication and patient care.

What Motivates Older Adults to Improve Diet and Exercise Patterns?

Dietary intake and physical activity are lifestyle behaviors that are learned, developed, and practiced throughout an individual's lifetime. These lifestyle behaviors have a profound role on health and quality of life--with late-life changes still resulting in notable improvements. Despite well documented benefits of behavior change, such changes are extremely challenging. The purpose of this study is to better understand from the perspective of older adults themselves, the factors that may influence their likelihood of making lifestyle changes. Participants were recruited two primary care clinics. 104 older adults ranging in age from 65 to 95 were included. Participants were interviewed about their motivations and plans to change diet and physical activity behaviors following a routine primary care visit. All interviews were transcribed and transcripts were analyzed using a line-by-line coding approach. Older adults reported that their likelihood of making a lifestyle change related to perceptions of old age, personal motivation, and perceived confidence in the ability to make effective changes. These findings suggest the importance of creating more positive images of old age and tailoring health promotion efforts to older adults' motivations and confidence in their ability to make behavior changes.

Reflections on 3 Years of Innovation: Recognizing the Need for Innovation Beyond the Clinical Care Pathway.

The Susan and Richard Levy Healthcare Delivery Incubator is designed to bring about rapid, sustainable, scalable, and transformational health care redesign. All 10 projects in the initial 3 cohorts of teams embraced the Incubator process-forming diverse teams and following a design-thinking informed curriculum-and each successfully implemented improvements or innovations by the end of their project. The purpose of this article is to identify the key features of teams' work that may help account for projects' success. For the 10 projects completed, findings from debrief interviews and staff observations were examined to identify processes key to project's success. Analysis highlighted cross-project learnings that indicate nonclinical aspects of care delivery that play a critical role in project innovation success. Innovating health care delivery requires considering social and political determinants of health. The Incubator's process and structures enable teams to identify and respond to a broad range of health determinants.