Study protocol: pragmatic randomized control trial of an internet-based intervention (My tools 4 care) for family carers

BackgroundMost adults aged ≥65 years live with multiple chronic conditions (MCC), and nearly one in four have recognized or unrecognized Alzheimer’s disease and related dementias (ADRD), including an estimated 7.2 million Americans. Together, MCC and ADRD increase treatment complexity, medication burden, and the risk of adverse outcomes. Among patients who meet clinical criteria for mild cognitive impairment (MCI) or ADRD but lack a formal diagnosis, MCC burden remains unclear. This study examined the association between MCC burden and undiagnosed MCI and ADRD in a diverse cohort of older adults in primary care.MethodsWe conducted a cross-sectional analysis of 324 adults aged ≥65 from primary care clinics in Indiana and South Florida (2021–2023), as part of a larger ADRD detection study. Patients without documented MCI or ADRD completed standardized cognitive assessments. Cognitive status (normal, MCI, ADRD) was determined by interdisciplinary consensus. Chronic conditions and medications were extracted from electronic health records. Multinomial logistic regression was used to examine the association between MCC profiles and cognitive status.ResultsAmong 324 older adults, 51.9% were determined to have MCI and 8% ADRD. Patients with MCI and ADRD had more chronic conditions (mean = 5–6) and medications (mean = 4–5) than those with normal cognition (p < 0.001). Anticholinergic use was more common in the MCI (23.8%) and ADRD (23.1%) groups than in those with normal cognition (10.8%). In adjusted models, MCI and ADRD were associated with higher odds of having more chronic conditions. Cerebrovascular disease was associated with both MCI and ADRD; diabetes, sleep apnea, and insomnia with MCI; and ischemic heart disease and insomnia with ADRD.ConclusionOlder adults with unrecognized MCI and ADRD experience substantial MCC and medication burden. These findings highlight the need for targeted primary care interventions that integrate cognitive screening, support MCC management, optimize self-management capacity, and promote safer prescribing.

BackgroundEscalating drug costs are likely to disproportionately burden individuals with Alzheimer’s disease and related dementias (ADRD) as they often have multiple chronic conditions (MCC). This study aimed to estimate the incremental total and out‐of‐pocket (OOP) drug costs associated with ADRD and MCC across the drug cost distributions.MethodThe study used a nationally representative cross‐sectional dataset from 2003 to 2021 Medical Expenditure Panel Survey. The study sample comprised of 83,667 elderly community dwelling individuals aged 65 and above, among which 3,046 individuals had ADRD diagnosis and 2,710 had both ADRD and MCC. To address the skewed distribution of the drug costs, quantile regression models were used to examine the associations between prescription drug costs and having ADRD/MCC across the drug cost distributions at 25th, 50th, 75th, and 90th percentiles, after adjustment for other sociodemographic factors. MCC was defined as having two or more chronic conditions. Survey weights were applied to all estimates.ResultADRD patients and those with ADRD and MCC had significantly higher incremental costs at the upper end of the total and OOP drug cost distributions than at the lower end of the distributions, compared to those who had no ADRD diagnosis. The incremental OOP drug costs of ADRD at the 90th percentile were over 14 times higher than that at the 25th percentile ($624.43, p&lt;0.001, 90th percentile; $42.66, p&lt;0.001, 25th percentile), while the incremental total drug costs of ADRD at the 90th percentile was about 9 times higher than that of ADRD at the 25th percentile ($3,372.27, p&lt;0.001, 90th percentile; $381.31, p&lt;0.001, 25th percentile). Similarly, the incremental OOP drug costs among individuals with ADRD and MCC at the 90th percentile were 11 times more than that at the 25th percentile ($756.91 vs. $68.55, respectively), while the incremental cost difference for the total drug costs was 7 times higher among individuals with ADRD and MCC at the 90th percentile than those at the 25th percentile ($3,940.53 vs. $548.80, respectively).ConclusionThe results of the study highlighted that ADRD patients with and without MCC who are heavy prescription drug users face a disproportionately greater burden in OOP payments.

BackgroundMy Tools 4 Care (MT4C) is a Web-based intervention that was developed based on the transitions theory. It is an interactive, self-administered, and portable toolkit containing six main sections intended to support carers of community-living persons with Alzheimer’s disease and related dementia and multiple chronic conditions through their transition experiences.ObjectiveThe objective of our study was to evaluate the effectiveness of MT4C with respect to increasing hope, self-efficacy, and health-related quality of life in carers of community-living older persons with Alzheimer’s disease and related dementia and multiple chronic conditions.MethodsA multisite, pragmatic, mixed methods, longitudinal, repeated-measures, randomized controlled trial was conducted between June 2015 and April 2017. Eligible participants were randomized into either treatment (MT4C) or educational control groups. Following baseline measures, carers in the treatment group received 3 months of password-protected access to MT4C. Trained research assistants collected data from participants via phone on hope (Herth Hope Index [HHI]), self-efficacy (General Self-Efficacy Scale), and health-related quality of life (Short Form-12 item [version 2] health survey; SF-12v2) at baseline, 1, 3, and 6 months. The use and cost of health and social services (Health and Social Services Utilization Inventory) among participants were measured at baseline, 3, and 6 months. Analysis of covariance was used to identify group differences at 3 months, and generalized estimating equations were used to identify group differences over time.ResultsA total of 199 carers participated in this study, with 101 participants in the treatment group and 98 in the educational control group. Of all, 23% (45/199) participants withdrew during the study for various reasons, including institutionalization or death of the person with dementia and lack of time from the carer. In the treatment group, 73% (74/101) carers used MT4C at least once over the 3-month period. No significant differences in the primary outcome measure (mental component summary score from the SF-12v2) by group or time were noted at 3 months; however, significant differences were evident for HHI-factor 2 (P=.01), with higher hope scores in the treatment group than in the control group. General estimating equations showed no statistically significant group differences in terms of mental component summary score at all time points. Attrition and the fact that not all carers in the treatment group used MT4C may explain the absence of statistically significant results for the main outcome variable.ConclusionsDespite no significant differences between groups in terms of the primary outcome variable (mental component score), the significant differences in terms of one of the hope factors suggest that MT4C had a positive influence on the lives of participants.Trial RegistrationClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387 (Archived by Webcite at http://www.webcitation.org/708oFCR8h).

BackgroundA self-administered Web-based intervention was developed to help carers of persons with Alzheimer disease and related dementias (ADRD) and multiple chronic conditions (MCC) deal with the significant transitions they experience. The intervention, My Tools 4 Care (MT4C), was evaluated during a pragmatic mixed methods randomized controlled trial with 199 carers. Those in the intervention group received free, password-protected access to MT4C for three months. MT4C was found to increase hope in participants at three months compared with the control group. However, in the intervention group, 22% (20/92) did not use MT4C at all during the three-month period.ObjectiveThis mixed methods secondary analysis aimed to (1) examine differences at three months in the outcomes of hope, self-efficacy, and health-related quality of life (HRQOL) scores in users (ie, those who used MT4C at least once during the three-month period) compared with nonusers and (2) identify reasons for nonuse.MethodsData from the treatment group of a pragmatic mixed methods randomized controlled trial were used. Through audiotaped telephone interviews, trained research assistants collected data on participants’ hope (Herth Hope Index; HHI), self-efficacy (General Self-Efficacy Scale; GSES), and HRQOL (Short-Form 12-item health survey version 2; SF-12v2) at baseline, one month, and three months. Treatment group participants also provided feedback on MT4C through qualitative telephone interviews at one month and three months. Analysis of covariance was used to determine differences at three months, and generalized estimating equations were used to determine significant differences in HHI, GSES, and SF-12v2 between users and nonusers of MT4C from baseline to three months. Interview data were analyzed using content analysis and integrated with quantitative data at the result stage.ResultsOf the 101 participants at baseline, 9 (9%) withdrew from the study, leaving 92 participants at three months of which 72 (78%) used MT4C at least once; 20 (22%) participants did not use it at all. At baseline, there were no statistically significant differences in demographic characteristics and in outcome variables (HHI, GSES, and SF-12v2 mental component score and physical component score) between users and nonusers. At three months, participants who used MT4C at least once during the three-month period (users) reported higher mean GSES scores (P=.003) than nonusers. Over time, users had significantly higher GSES scores than nonusers (P=.048). Reasons for nonuse of MT4C included the following: caregiving demands, problems accessing MT4C (poor connectivity, computer literacy, and navigation of MT4C), and preferences (for paper format or face-to-face interaction).ConclusionsWeb-based interventions, such as MT4C, have the potential to increase the self-efficacy of carers of persons with ADRD and MCC. Future research with MT4C should consider including educational programs for computer literacy and providing alternate ways to access MT4C in addition to Web-based access.Trial RegistrationClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387

Most people with Alzheimer's disease and related dementia (ADRD) also suffer from two or more chronic conditions, known as multiple chronic conditions (MCC). While many studies have investigated the MCC patterns, few studies have considered the synergistic interactions with other factors (called the syndemic factors) specifically for people with ADRD. We included 40,290 visits and identified 18 MCC from the National Alzheimer's Coordinating Center. Then, we utilized a multi-label XGBoost model to predict developing MCC based on existing MCC patterns and individualized syndemic factors. Our model achieved an overall arithmetic mean of 0.710 AUROC (SD=0.100) in predicting 18 developing MCC. While existing MCC patterns have enough predictive power, syndemic factors related to dementia, social behaviors, mental and physical health can improve model performance further. Our study demonstrated that the MCC patterns among people with ADRD can be learned using a machine-learning approach with syndemic framework adjustments. Machine learning models can learn the MCC patterns for people with ADRD. The learned MCC patterns should be adjusted and individualized by syndemic factors. The model can predict which disease is developing based on existing MCC patterns. As a result, this model enables early specific MCC identification and prevention.

For older individuals with Alzheimer’s disease and related dementias (ADRD) and multiple chronic conditions (MCC), taking more medications is associated with greater risk of adverse drug events, drug interactions, treatment burden, and cognitive changes from medication side effects. Optimizing medication through deprescribing (the process of reducing or stopping the use of inappropriate medications or medications unlikely to be beneficial) can help avoid adverse drug effects and improve outcomes for MCC patients, particularly for those with ADRD. Findings to date are limited to primarily Caucasian patients. This talk will focus on work geared to elicit perspectives on medication use, communication about medication, and deprescribing among African American and Hispanic older adults with ADRD and MCC, their family members, and clinicians caring for these populations.

Our primary objectives were (a) to determine the relative impact of Alzheimer's disease and related dementias (ADRD), disability, and common comorbid health conditions on the cost of caring for community-dwelling elderly person and (b) to determine whether ADRD serves as an effect modifier for the effect of disability and common comorbidities on costs. Participants were drawn from community respondents to the 1994 National Long Term Care Survey. The authors compared total cost of caring for persons without ADRD with that of those who had moderate and severe ADRD. Using regression analysis, the author identified the adjusted effect of ADRD, limitations in activities of daily living (ADLs), and common comorbidities on total costs. Persons with severe ADRD had higher median total costs ($10,234) than did persons with moderate ADRD ($4,318) and those without ADRD ($2,268, p <.001). However, disability measured by ADL limitations was a more important predictor of total cost than was ADRD status in both stratified and multivariate analyses. Comorbidities such as heart attack, stroke, and chronic obstructive pulmonary disease also increased costs. Severe ADRD was an effect modifier for ADL limitations, increasing the positive impact of disability on total costs among persons with severe ADRD, but not for comorbidities. Disability, severe ADRD, and comorbidity all had independent effects that increased total costs. Thus, any risk adjustment procedure should account for disability and comorbidity and not just ADRD status.

The disproportionate burden of Alzheimer's disease and related dementias (ADRD) in diverse older adults diagnosed with cancer

End-of-life (EOL) care for persons with Alzheimer’s disease and related dementias (ADRD) is heterogeneous and, often, inconsistent with patients’ priorities. While differences in physician-patient communication or the health care decision-making process likely contribute to disparities in EOL care, little is known about the relationships between race, advance care planning (ACP), and quality of care among persons with ADRD. The aim of this study was to (1) characterize trends in both ACP and EOL treatment intensity in persons with ADRD and (2) test whether racial differences in ACP mediate disparities in EOL care. We analyzed a population-based cohort of older adults with cognitive impairment or dementia who participated in the Health and Retirement Study (HRS) and died between 2000 and 2014 (n = 5,316). While participation in ACP among persons with ADRD increased from 2000 to 2014 (66% to 83%, P < 0.05), models stratified by race showed that differences in participation rates across white and nonwhite persons with ADRD persisted over the sample period. Racial disparities in the location of death, a proxy for the intensity of EOL care, narrowed from 2000 to 2014. However, next-of-kin surrogates of nonwhite persons with ADRD were much more likely to report the decedent received “all care possible…in order to prolong life”. Assignment of a durable power of attorney was found to influence location of death, while both creation of a living will and participation in discussions about EOL care preferences were found to influence the likelihood that decedents received all possible life-prolonging treatments.

Older Adults with Mental Illness or Dementia Struggle with the Skilled Nursing Facility-to-Home Transition

BackgroundBy 2060, Latinos will represent nearly one‐third of Americans and the Latino elderly population over 65 will nearly quadruple. Over the next 40 years, Latinos are projected to have the largest increase in Alzheimer’s disease and related dementia (ADRD) cases. Despite the expected number of Latinos with ADRD, knowledge gaps are particularly large for Latinas living in regions typically underrepresented in ADRDs research, such as rural and/or agricultural regions. Therefore, the goal of this study is to assess knowledge, perceptions, and feelings associated with ADRD among a sample of middle‐age Latina women.MethodWe used qualitative methods involving semi‐structured interviews to examine the knowledge, perceptions, and feelings associated with ADRD among a subsample of the Center for Health Assessment of Mothers and Children of Salinas (CHAMACOS) study participants, who are Latina women residing in an underserved agricultural community entering mid‐life (mean = 47 years old). We conducted interviews with 20 Latina women and analyzed data with thematic content analysis.ResultsWith regard to knowledge and perceptions about ADRD, three themes emerged: 1) Women associate ADRD with loss of memory, getting lost, losing one’s humanity; 2) They are not familiar with protective and risk factors for ADRD, including cardiovascular risk factors; 3) They believe ADRD can be prevented and want to learn how to prevent it and recognize signs and symptoms. With regard to feelings associated with ADRD, three themes emerged: 1) Fear of developing ADRD, losing independence, and not being aware of reality or who they are; 2) Sadness about how people with ADRD are treated, including those living in a nursing home; 3) A sense of powerlessness to help people with ADRD or oneself once diagnosed with ADRD.ConclusionMiddle age represents a window of opportunity to reduce ADRD risk by raising awareness, prioritizing lifestyle changes, and create community conditions that support brain health. This study found that middle‐aged Latinas are concerned about ADRD and want to learn how to prevent ADRD and recognize signs and symptoms. More research is needed to study effective interventions to prevent ADRD among middle‐age Latinas, particularly from regions of the US often underrepresented in ADRDs research.

Background: Alzheimer’s disease and related dementias (ADRD) are highly prevalent among adults with heart failure (HF). HF is associated with disability among older adults, especially those with ADRD. This may impact aging in place after HF hospitalizations, which is concerning given this is an important outcome for patients recovering from serious illnesses. We aimed to examine the association between ADRD and aging in place among Medicare beneficiaries hospitalized for HF. Methods: We identified 80,694 fee-for-service beneficiaries hospitalized for HF between 2017 and 2019 in a 20% random sample of Medicare claims. HF hospitalization and ADRD were identified using ICD codes. The primary outcome was restricted home time, a patient-centered claims-based measure of successful aging in place defined as spending ≥ 10 days not at home (e.g., hospitalized, nursing home, inpatient facility) over 6 months post-discharge. Multivariable logistic regression was used to examine the association between ADRD and restricted home time adjusting for demographic and clinical characteristics; secondary analyses evaluated the likelihood of returning to pre-hospitalization days at home 6 months post-discharge. Results: Eighteen percent (n= 14,503/80,694) of adults hospitalized for HF had concurrent ADRD. HF patients with ADRD were older (83 vs 77 years), more likely to be female (56% vs 48%), and have dual Medicaid/Medicare eligibility (27% vs 21%), but had similar hospital length of stays and days at home preceding HF hospitalization compared to those without ADRD. Of HF patients with ADRD, 63% had restricted home time (vs. 51% without ADRD) and 52% failed to return to baseline days at home (vs. 42% without ADRD). In adjusted models, older adults with ADRD had 34% greater odds of experiencing restricted home time (OR=1.34, 1.30-1.40), and 20% lower odds of returning to baseline days at home (OR=0.80, 0.77-0.83) 6 months post- discharge than those without ADRD. Conclusions: HF hospitalizations impact the ability of older adults to successfully age in place, especially among those with ADRD. Tailored post-discharge care solutions are urgently needed to address the challenges faced by HF patients with ADRD.

Risk factors for Alzheimer’s disease and related dementias (ADRD) are higher in rural areas than urban areas, and home- and community-based services (services) are less accessible. This study sought to identify unmet services needs among people with ADRD and their caregivers living in rural Appalachia, and highlight contextual factors that shape service access and utilization. We interviewed 22 caregivers and persons with ADRD living in Western North Carolina between August 2021 and April 2022 with recruitment assistance from local agencies and organizations. Themes were identified across domains of our conceptual model informed by theories of health services use, family caregiving, and sociocultural contexts. Family caregivers communicated multiple unmet needs, foremost of which included fragile and insufficient support systems or imbalances between family and paid caregiving support, a lack of clarity about their services options, and feeling behind in preparing for the future. In the presence of unmet care needs, family caregivers made decisions (or not) to use services in aiding them with caring for persons with ADRD. These decisions were shaped by illness-level (e.g. ADRD symptoms and progression), predisposing (e.g. work experiences), and enabling factors (e.g. family support). The sociocultural contexts in which family caregivers and the persons they cared for with ADRD were embedded within, including their culture, beliefs and family norms, also shaped perceptions and use of services. These contexts should be better understood and considered when developing and implementing acceptable services for people with ADRD in rural areas.

The Role of Neighborhood Socioeconomic Status in Institutionalization of Home Health Care Patients With and Without Alzheimer's Disease and Related Dementias

BackgroundMiddle age is increasingly acknowledged as a critical window for prevention of Alzheimer’s disease and related dementia (ADRD) since research has shown that AD develops in the course of 20–30 years (1) but we know very little about middle-aged individuals’ perspectives on ADRD. Knowledge gaps are particularly large for Latinas living in regions typically underrepresented in ADRD research, such as rural and/or agricultural regions. This is important given that over the next 40 years Latinos are projected to have the largest increase in ADRD cases in the U.S. Therefore, this study aims to assess knowledge, perceptions, and feelings associated with ADRD among a sample of middle-age, Spanish-speaking Latina women.MethodUsing qualitative methods involving semi-structured interviews, we examined knowledge, perceptions, and feelings associated with ADRD among a subsample of the Center for Health Assessment of Mothers and Children of Salinas (CHAMACOS) study. Participants are Latina women residing in an underserved agricultural community entering mid-life (mean = 46.5 years old). Interviews were conducted with 20 women and data was analyzed with inductive thematic content analysis.ResultsWe identified themes regarding perceptions, knowledge, and feelings. First, participants perceive ADRD as involving (1) Loss of memory, (2) Getting lost; (3) Losing the person they once were. With regard to knowledge about ADRD, participants reported: (1) Some knowledge about protective and risk factors for ADRD, (2) No awareness of the links between cardiovascular risk factors and ADRD; (3) A desire to learn prevention methods alongside signs and symptoms of ADRD. Themes related to feelings about ADRD were: (1) Fear of developing ADRD and not being aware of reality or who they are; (2) Worry about losing relationships with loved ones and caretaking if diagnosed with ADRD; (3) Sadness about forgetting one’s family and depending on others if diagnosed with ADRD.ConclusionThe knowledge gaps and negative feelings associated with ADRD highlighted in this study underscore the need for ADRD interventions to include CVD prevention, particularly for mid-life Latino populations residing in rural regions.