Preliminary translation of 'Reducing Disability in Alzheimer's Disease' among individuals with intellectual disabilities and caregiver dyads.

BACKGROUND: The Reducing Disability in Alzheimer's Disease in Kansas City (RDAD-KC) intervention has been shown to improve the health of individuals with dementia and caregiver dyads. This manuscript reports the results of implementing the RDAD among individuals with intellectual disabilities and caregiver dyads. METHODS: Nine community agencies deployed the 12-week intervention. We assessed changes in individuals with intellectual disabilities' behavioural symptom related severity and physical activity, and caregivers' behavioural symptom-related distress, unmet needs, and caregiver strain. RESULTS: Forty-four dyads enrolled, and 23 (~60 years, 48% female) completed ≥75% of the intervention. We observed decreases in behavioural symptom related severity (p = .07) and increases in physical activity (p = .20) among individuals with intellectual disabilities. We also observed decreases in behavioural symptom related distress (p = .14), unmet needs (p = .50), and caregiver strain (p = .50) among caregivers. CONCLUSIONS: The RDAD-KC intervention showed promising, although statistically non-significant, benefits among individuals with intellectual disabilities and their caregivers.

Impact of the COVID-19 Pandemic on Latino Families With Alzheimer Disease and Related Dementias: Qualitative Interviews With Family Caregivers and Primary Care Providers.

Background: Latino individuals experience disparities in the care of Alzheimer disease and related dementias (ADRD) and have disproportionately high COVID-19 infection and death outcomes. Objective: We aimed to gain an in-depth understanding of the impact of the COVID-19 pandemic among Latino families with ADRD in the United States. Methods: This was a qualitative study of 21 informal caregivers of Latino individuals with ADRD and 23 primary care providers who serve Latino patients. We recruited participants nationwide using convenience and snowball sampling methods and conducted remote interviews in English and Spanish. We organized the transcripts for qualitative review to identify codes and themes, using a pragmatic approach, a qualitative description methodology, and thematic analysis methods. Results: Qualitative analysis of transcripts revealed eight themes, including (1) the pandemic influenced mental and emotional health; (2) the pandemic impacted physical domains of health; (3) caregivers and care recipients lost access to engaging activities during the confinement; (4) the pandemic impacted Latino caregivers' working situation; (5) the pandemic impacted health care and community care systems; (6) health care and community care systems took measures to reduce the impact of the pandemic; (7) Latino families experienced barriers to remote communication during the pandemic; and (8) caregiver social support was critical for reducing social isolation and its sequalae. Conclusions: Latino families with ADRD experienced similar but also unique impacts compared to those reported in the general population. Unique impacts may result from Latino individuals' underserved status in the United States, commonly held cultural values, and their intersectionality with ADRD-related disability. Family caregiver social support was crucial during this time of adversity. These findings suggest the need for more equitable access, culturally appropriate and trustworthy content and delivery of health care and community services, as well as stronger financial and social supports for family caregivers.

Risk of Neuropsychiatric Symptoms Among People Who Develop Cognitive Impairment With and Without a History of Post-traumatic Stress Disorder.

We aimed to prospectively assess the change in neuropsychiatric symptoms among people who develop cognitive impairment and have a history of post-traumatic stress disorder (PTSD). We analyzed longitudinal data from the National Alzheimer's Coordinating Center Unified Data Set (March 2015 to December 2021). Analyses included individuals who were cognitively normal and who had nonmissing assessment of PTSD at the initial visit and had at least 1 follow-up visit with cognitive impairment. We compared the difference in the mean neuropsychiatric symptom score at the first Unified Data Set visit versus the first visit with a Clinical Dementia Rating of 0.5 between those with and without a history of PTSD. The mean neuropsychiatric symptom score change did not differ between those with and without a history of PTSD (1.06 vs. 0.77, respectively; P =0.79). The null results found in this study warrant future research. Several methodological limitations might explain these results.

A culturally and linguistically adapted text-message Diabetes Prevention Program for Latinos: Feasibility, acceptability, and preliminary effectiveness.

Despite the general positive outcomes of the Diabetes Prevention Program (DPP), the program's reach, adherence, and effectiveness among Latinos are still suboptimal. Text-message DPP can potentially overcome barriers and improve DPP outcomes for this group. We aimed to assess the feasibility, acceptability, and preliminarily effectiveness of a culturally and linguistically adapted text-message DPP for Latinos. We enrolled 26 eligible Spanish-speaking Latino adults at risk of developing type 2 diabetes (A1c = 5.7%-6.4%, body mass index ≥25) in a 6-month culturally and linguistically adapted text-message DPP. Participants received (i) two to three daily automated text-messages about healthy eating, physical activity, problem-solving skills, lifestyle change motivation, and logistics, (ii) on-demand keyword-driven messages, and (iii) on-demand chat messages with a DPP coach. Outcomes included feasibility (e.g. adherence), acceptability (e.g. satisfaction), and preliminary effectiveness (e.g. weight loss). Twenty-four participants completed the program and follow-up assessments. Participants' mean body weight changed from 191.2 to 186.7 pounds (P = .004); 45.8% of participants lost ≥3%, and 29.2% lost ≥5% of body weight. Body mass index and waist circumference were also reduced [0.9 kg/m2 (P = .003) and 1.1 cm (P = .03), pre-post]. Self-reported physical activity frequency was increased (P = .003). No statistically significant changes in diet quality were found. Most participants were satisfied with the program and perceived it to help prevent diabetes. Our pilot study of an innovative text-message DPP for Latinos demonstrated the program was acceptable, feasible, and potentially effective. Using text-message for DPP can reduce barriers to in-person participation by increasing the program's reach without compromising fidelity and effectiveness.

The Diabetes Prevention Program (DPP) is an in-person program that helps people to reduce their risk of having diabetes by supporting them to improve their lifestyles. However, the program is not working well for Latinos. It is possible that offering the program using text-messages for Latinos can support them in improving their lifestyles so they can reduce their chances of getting diabetes. We developed a text-message DPP for Latinos who speak Spanish to test if the program would work for them. A total of 26 Latinos received 2 to 3 daily text-messages about healthy eating, physical activity, and motivations to change lifestyles, for a period of 6 months. Participants also had the chance to send messages to coaches to get individualized responses. By the end of the 6 months, 24 Latinos completed the program. Participants reduced an average of 5.5 pounds in body weight. We also saw reductions in participants' waist circumferences. In addition, participants started to do more physical activity. Most participants were satisfied with the program and perceived it helped them prevent diabetes. In conclusion, we believe that our program worked well and was successful in helping Latinos to change their lifestyles to prevent diabetes.

A text message intervention to support latino dementia family caregivers (CuidaTEXT): feasibility study.

OBJECTIVES: To test the feasibility, acceptability, and preliminary efficacy of CuidaTEXT: a bidirectional text message intervention to support Latino dementia family caregivers. METHODS: CuidaTEXT is a six-month, bilingual intervention tailored to caregiver needs (e.g., education, problem-solving, resources). We used convenience sampling and reached 31 potential participants via clinics, registries, community promotion, and online advertising. We enrolled 24 Latino caregivers in a one-arm trial and assessed feasibility, acceptability, and preliminary efficacy within six months. RESULTS: None of the participants unsubscribed from CuidaTEXT and 83.3% completed the follow up survey. Most participants (85.7%) reported reading most text messages thoroughly. All participants reported being very or extremely satisfied with the intervention. Participants reported that CuidaTEXT helped a lot (vs not at all, a little, or somehow) in caring for their care recipient (71.4%; n = 15), for themselves (66.7%; n = 14), and understanding more about dementia (85.7%; n = 18). Compared to baseline, at six months caregiver behavioral symptom distress (0-60) decreased from 19.8 to 12.0 and depression (0-30) from 8.8 to 5.4 (p < .05). CONCLUSIONS: CuidaTEXT demonstrated high levels of feasibility, acceptability, and preliminary efficacy among Latino caregivers. CLINICAL IMPLICATIONS: CuidaTEXT's feasibility and potential for widespread implementation holds promise in supporting Latino caregivers of people with dementia.

Patient Polypharmacy use Following a Multi-Disciplinary Dementia Care Program in a Memory Clinic: A Retrospective Cohort Study.

Introduction: Dementia increases the risk of polypharmacy. Timely detection and optimal care can stabilize or delay the progression of dementia symptoms, which may in turn reduce polypharmacy. We aimed to evaluate the change in polypharmacy use among memory clinic patients living with dementia who participated in a dementia care program compared to those who did not. We hypothesized that patients in the dementia care program would reduce their use of polypharmacy compared to those who were not in standard care. Methods: We retrospectively analyzed data extracted from electronic medical records from a university memory clinic. Data from a total of 381 patients were included in the study: 107 in the program and 274 matched patients in standard care. We used adjusted odds ratios to assess the association between enrollment in the program and polypharmacy use at follow-up (five or more concurrent medications), controlling for baseline polypharmacy use and stratified polypharmacy use by prescription and over-the-counter (OTC). Results: The two groups did not differ in the use of five or more overall and prescription medications at follow-up, controlling for the use of five or more of the respective medications at baseline and covariates. Being in the program was associated with a three-fold lower odds of using five or more OTC medications at follow-up (adjusted odds ratio = 0.30; p <0.001; 95% Confidence interval = 0.15-0.58) after controlling for using five or more OTC medications at baseline and covariates. Conclusions: Dementia care may reduce polypharmacy of OTC medications, potentially reducing risky drug-drug interactions. More research is needed to infer causality and understand how to reduce prescription medication polypharmacy.

A Collaborative Approach to Dementia Inclusion in Social Work Education: The Dementia Intensive.

There are 5.8 million Americans with Alzheimer's disease and this number is rising. Social Work can play a key role. Yet, like other disciplines, the field is ill prepared for the growing number of individuals and family members who are impacted physically, emotionally and financially. Compounding the challenge, the number of social work students identifying interest in the field is low. This mixed methods concurrent study assessed the preliminary efficacy of a day-long education event among social work students from eight social work programs. Pre- post-training survey included: 1) dementia knowledge, assessed with the Dementia Knowledge Assessment Scale, and 2) negative attitudes towards dementia, assessed by asking students to identify three words that reflected their thoughts on dementia, which were later rated as positive, negative or neutral by three external raters. Bivariate analyses showed that dementia knowledge (mean difference= 9.9) and attitudes (10% lower) improved from pre- to post-training (p<0.05). Collaboration between social work programs can increase student access to strength-based dementia education. Such programs hold the potential of improving dementia capability within the field of Social Work.

Demographically-adjusted normative data among Latinos for the version 3 of the Alzheimer's Disease Centers' Neuropsychological Test Battery in the Uniform Data Set.

INTRODUCTION: We developed demographically-adjusted normative data for Spanish- and English-speaking Latinos on the Version 3.0 of the National Alzheimer's Coordinating Center Uniform Data Set Neuropsychological Battery (UDS3-NB). METHODS: Healthy Latino adults (N = 437) age 50-94 (191 Spanish- and 246 English-speaking) enrolled in Alzheimer's Disease Research Centers completed the UDS3-NB in their preferred language. Normative data were developed via multiple linear regression models on UDS3-NB raw scores stratified by language group with terms for demographic characteristics (age, years of formal education, and sex). RESULTS: Younger age and more years of education were associated with better performance on most tests in both language groups, with education being particularly influential on raw scores among Spanish-speakers. Sex effects varied across tests and language groups. DISCUSSION: These normative data are a crucial step toward improving diagnostic accuracy of the UDS3-NB for neurocognitive disorders among Latinos in the United States and addressing disparities in Alzheimer's disease and related dementias. HIGHLIGHTS: We developed normative data on the UDS3-NB for Latinos in the US ages 50-94. Younger age and more years of education were linked to better raw scores in several cognitive tests. Education was particularly influential on raw scores among Spanish-speakers. Sex effects varied across tests and between English- and Spanish-speaking Latinos. These normative data might improve diagnostic accuracy of the UDS3-NB among Latinos.

Primary Care Provider Preferences on Dementia Training: A Qualitative Study.

BACKGROUND: Dementia has no cure, but interventions can stabilize the progression of cognitive, functional, and behavioral symptoms. Primary care providers (PCPs) are vital for the early detection, and long-term management of these diseases, given their gatekeeping role in the healthcare system. However, PCPs rarely implement evidence-based dementia care due to time limitations and knowledge about diagnosis and treatment. Training PCPs may help address these barriers. OBJECTIVE: We explored the preferences of PCPs for dementia care training programs. METHODS: We conducted qualitative interviews with 23 PCPs recruited nationally via snowball sampling. We conducted remote interviews and organized the transcripts for qualitative review to identify codes and themes, using thematic analysis methods. RESULTS: PCP preferences varied regarding many aspects of ADRD training. Preferences varied regarding how to best increase PCP participation in training, and what content and materials were needed to help them and the families they serve. We also found differences regarding the duration and timing of training, and the modality of training sessions (remote versus in-person). CONCLUSION: The recommendations arising from these interviews have the potential to inform the development and refinement of dementia training programs to optimize their implementation and success.

Cognitive Aging with Dementia, Mild Cognitive Impairment, or No Impairment: A Comparison of Same- and Mixed-Sex Couples.

BACKGROUND: Lesbian and gay older adults have health disparities that are risk factors for Alzheimer's disease, yet little is known about the neurocognitive aging of sexual minority groups. OBJECTIVE: To explore cross-sectional and longitudinal dementia outcomes for adults in same-sex relationships (SSR) and those in mixed-sex relationships (MSR). METHODS: This prospective observational study utilized data from the National Alzheimer's Coordinating Center Uniform Data Set (NACC UDS) collected from contributing Alzheimer's Disease Research Centers. Participants were adults aged 55+ years at baseline with at least two visits in NACC UDS (from September 2005 to March 2021) who had a spouse, partner, or companion as a co-participant. Outcome measures included CDR® Dementia Staging Instrument, NACC UDS neuropsychological testing, and the Functional Activities Questionnaire. Multivariable linear mixed-effects models accounted for center clustering and repeated measures by individual. RESULTS: Both MSR and SSR groups experienced cognitive decline regardless of baseline diagnosis. In general, MSR and SSR groups did not differ statistically on cross-sectional or longitudinal estimates of functioning, dementia severity, or neuropsychological testing, with two primary exceptions. People in SSR with mild cognitive impairment showed less functional impairment at baseline (FAQ M = 2.61, SD = 3.18 vs. M = 3.97, SD = 4.53, respectively; p < 0.01). The SSR group with dementia had less steep decline in attention/working memory (ß estimates = -0.10 versus -0.18; p < 0.01). CONCLUSION: Participants in SSR did not show cognitive health disparities consistent with a minority stress model. Additional research into protective factors is warranted.

Acceptability and Preliminary Effectiveness of a Remote Dementia Educational Training Among Primary Care Providers and Health Navigators.

BACKGROUND: Optimal care can improve lives of families with dementia but remains under-implemented. Most healthcare professional training is in person, time-intensive, and does not focus on key aspects such as early detection, and cultural competency. OBJECTIVE: We explored the acceptability and preliminary effectiveness of a training, The Dementia Update Course, which addressed these issues. We hypothesized that the training would lead to increased levels of perceived dementia care competency among key healthcare workers, namely primary care providers (PCPs) and health navigators (HNs). METHODS: We conducted pre-post training assessments among 22 PCPs and 32 HNs. The 6.5-h training was remote, and included didactic lectures, case discussion techniques, and materials on dementia detection and care. Outcomes included two 5-point Likert scales on acceptability, eleven on perceived dementia care competency, and the three subscales of the General Practitioners Confidence and Attitude Scale for Dementia. We used paired samples t-tests to assess the mean differences in all preliminary effectiveness outcomes. RESULTS: The training included 28.6% of PCPs and 15.6% of HNs that self-identified as non-White or Latino and 45.5% of PCPs and 21.9% of HNs who served in rural areas. PCPs (84.2%) and HNs (91.7%) reported a high likelihood to recommend the training and high satisfaction. Most preliminary effectiveness outcomes analyzed among PCPs (11/14) and all among HNs (8/8) experienced an improvement from pre- to post-training (p < 0.05). CONCLUSION: A relatively brief, remote, and inclusive dementia training was associated with high levels of acceptability and improvements in perceived dementia care competency among PCPs and HNs.

Impact of the COVID-19 pandemic on Latino families with Alzheimer's disease and related dementias: Perceptions of family caregivers and primary care providers.

Latinos experience disproportionately poor outcomes in dementia and COVID-19, which may synergistically impact their health. We explored the impact of the COVID-19 pandemic among Latino families with dementia via a qualitative descriptive study of 21 informal caregivers of Latinos with dementia and 24 primary care providers. Two themes arose: The impact of a global pandemic (e.g., accelerated cognitive and physical decline, or caregivers choosing between risking finances and the family's infection given the work situation) and Developing resilience to the effects of the pandemic (e.g., caregivers seeking vaccination sites, moving in with the care recipient and adopting telehealth).

A Text Messaging Intervention to Support Latinx Family Caregivers of Individuals With Dementia (CuidaTEXT): Development and Usability Study.

BACKGROUND: Latinx family caregivers of individuals with dementia face many barriers to caregiver support access. Interventions to alleviate these barriers are urgently needed. OBJECTIVE: This study aimed to describe the development of CuidaTEXT, a tailored SMS text messaging intervention to support Latinx family caregivers of individuals with dementia. METHODS: CuidaTEXT is informed by the stress process framework and social cognitive theory. We developed and refined CuidaTEXT using a mixed methods approach that included thematic analysis and descriptive statistics. We followed 6 user-centered design stages, namely, the selection of design principles, software vendor collaboration, evidence-based foundation, caregiver and research and clinical advisory board guidance, sketching and prototyping, and usability testing of the prototype of CuidaTEXT among 5 Latinx caregivers. RESULTS: CuidaTEXT is a bilingual 6-month-long SMS text messaging-based intervention tailored to caregiver needs that includes 1-3 daily automatic messages (n=244) about logistics, dementia education, self-care, social support, end of life, care of the person with dementia, behavioral symptoms, and problem-solving strategies; 783 keyword-driven text messages for further help with the aforementioned topics; live chat interaction with a coach for further help; and a 19-page reference booklet summarizing the purpose and functions of the intervention. The 5 Latinx caregivers who used the prototype of CuidaTEXT scored an average of 97 out of 100 on the System Usability Scale. CONCLUSIONS: CuidaTEXT's prototype demonstrated high usability among Latinx caregivers. CuidaTEXT's feasibility is ready to be tested.

Effectiveness of non-pharmaceutical interventions on cognitive function among non-demented African American and Latino older adults in the USA: a scoping review.

OBJECTIVE: African Americans and Latinos/Hispanics have a higher prevalence of dementia compared to non-Latino Whites. This scoping review aims to synthesize non-pharmaceutical interventions to delay or slow age-related cognitive decline among cognitively healthy African American and Latino older adults. DESIGN: A literature search for articles published between January 2000 and May 2019 was performed using the databases PubMed, CINAHL, PsycINFO and Web of Science. Relevant cited references and grey literature were also reviewed. Four independent reviewers evaluated 1,181 abstracts, and full-article screening was subsequently performed for 145 articles. The scoping review consisted of eight studies, which were evaluated according to the peer-reviewed original manuscript, non-pharmaceutical intervention, cognitive function as an outcome, separate reporting of results for African American and Latinos, minimum age of 40, and conducted in the US. A total of 8 studies were considered eligible and were analyzed in the present scoping review. RESULTS: Eight studies were identified. Four studies focused on African Americans and four focused on Latinos. Through the analysis, results indicated cognitive training-focused interventions were effective in improving memory, executive function, reasoning, visuospatial, psychological function, and speed among African Americans. Exercise interventions were effective in improving cognition among Latinos. CONCLUSION: This scoping review identified effective non-pharmaceutical interventions among African American and Latinos. Effective interventions focused on cognitive training alone for African Americans and exercise combined with group educational sessions for Latinos. Future research should explore developing culturally appropriate non-pharmaceutical interventions to reduce disparities and to enhance cognition among older African American and Latinos.

The impact of COVID-19 on the well-being and cognition of older adults living in the United States and Latin America.

BACKGROUND: In the COVID-19 pandemic, older adults from vulnerable ethnoracial groups are at high risk of infection, hospitalization, and death. We aimed to explore the pandemic's impact on the well-being and cognition of older adults living in the United States (US), Argentina, Chile, Mexico, and Peru. METHODS: 1,608 (646 White, 852 Latino, 77 Black, 33 Asian; 72% female) individuals from the US and four Latin American countries aged ≥ 55 years completed an online survey regarding well-being and cognition during the pandemic between May and September 2020. Outcome variables (pandemic impact, discrimination, loneliness, purpose of life, subjective cognitive concerns) were compared across four US ethnoracial groups and older adults living in Argentina, Chile, Mexico, and Peru. FINDINGS: Mean age for all participants was 66.7 (SD = 7.7) years and mean education was 15.4 (SD = 2.7) years. Compared to Whites, Latinos living in the US reported greater economic impact (p < .001, ηp 2  = 0.031); while Blacks reported experiencing discrimination more often (p < .001, ηp 2  = 0.050). Blacks and Latinos reported more positive coping (p < .001, ηp 2  = 0.040). Compared to Latinos living in the US, Latinos in Chile, Mexico, and Peru reported greater pandemic impact, Latinos in Mexico and Peru reported more positive coping, Latinos in Argentina, Mexico, and Peru had greater economic impact, and Latinos in Argentina, Chile, and Peru reported less discrimination. INTERPRETATION: The COVID-19 pandemic has differentially impacted the well-being of older ethnically diverse individuals in the US and Latin America. Future studies should examine how mediators like income and coping skills modify the pandemic's impact. FUNDING: Massachusetts General Hospital Department of Psychiatry.

Effectiveness of "Reducing Disability in Alzheimer's Disease" Among Dyads With Moderate Dementia.

Replications of evidence-based dementia care receiver-caregiver dyad interventions in the community are scarce. We aimed to assess the effectiveness of the Kansas City implementation of Reducing Disability in Alzheimer's Disease (RDAD) among a convenience sample of dyads with moderate dementia, which addressed needs identified by nine participating community agencies. We hypothesized that dyads' mental health and physical activity outcomes would improve from baseline to end-of-treatment. The final analytic sample included 66 dyads. Outcomes improved (p < .01) from pre- to post-intervention: behavioral symptom severity (range 0-36) decreased from 11.3 to 8.6, physical activity increased from 125.0 to 190.0 min/week, caregiver unmet needs (range 0-34) decreased from 10.6 to 5.6, caregiver behavioral symptom distress (0-60) decreased from 15.5 to 10.4, and caregiver strain (0-26) decreased from 11.1 to 9.7. This adapted implementation of RDAD leads to clinically meaningful improvements and might inform scaling-up.

Risk of mild cognitive impairment among older adults in the United States by ethnoracial group.

OBJECTIVES: To compare the risk of mild cognitive impairment (MCI) among a wide range of ethnoracial groups in the US. DESIGN: Non-probabilistic longitudinal clinical research. SETTING: Participants enrolling into the National Alzheimer's Coordinating Center Unified Data Set recruited via multiple approaches including clinician referral, self-referral by patients or family members, or active recruitment through community organizations. PARTICIPANTS: Cognitively normal individuals 55 and older at the initial visit, who reported race and ethnicity information, with at least two visits between September 2005 and November 2018. MEASUREMENTS: Ethnoracial information was self-reported and grouped into non-Latino Whites, Asian Americans, Native Americans, African Americans (AAs), and individuals simultaneously identifying as AAs and another minority race (AA+), as well as Latinos of Caribbean, Mexican, and Central/South American origin. MCI was evaluated clinically following standard criteria. Four competing risk analysis models were used to calculate MCI risk adjusting for risk of death, including an unadjusted model, and models adjusting for non-modifiable and modifiable risk factors. RESULTS: After controlling for sex and age at initial visit, subhazard ratios of MCI were statistically higher than non-Latino Whites among Native Americans (1.73), Caribbean Latinos (1.80), and Central/South American Latinos (1.55). Subhazard ratios were higher among AA+ compared to non-Latino Whites only in the model controlling for all risk factors (1.40). CONCLUSION: Compared to non-Latino Whites, MCI risk was higher among Caribbean and South/Central American Latinos as well as Native Americans and AA+. The factors explaining the differential MCI risk among ethnoracial groups are not clear and warrant future research.