Dementia and comorbidities in primary care: a scoping review.

BACKGROUND: People with dementia (PwD) are known to have more chronic conditions compared to those without dementia, which can impact the clinical presentation of dementia, complicate clinical management and reduce overall quality of life. While primary care providers (PCPs) are integral to dementia care, it is currently unclear how PCPs adapt dementia care practices to account for comorbidities. This scoping review maps recent literature that describes the role for PCPs in the prevention, detection/diagnosis and management of dementia in the context of comorbidities, identifies critical knowledge gaps and proposes potential avenues for future research. METHODS: We searched for peer-reviewed literature published between 2017-2022 in MEDLINE, Cochrane Library, and Scopus using key terms related to dementia, primary care, and comorbidity. The literature was screened for relevance by title-abstract screening and subsequent full-text screening. The prioritized papers were categorized as either 'Risk Assessment and Prevention', 'Screening, Detection, and Diagnosis' or 'Management' and were further labelled as either 'Tools and Technologies', 'Recommendations for Clinical Practice' or 'Programs and Initiatives'. RESULTS: We identified 1,058 unique records in our search and respectively excluded 800 and 230 publications during title-abstract and full-text screening. Twenty-eight articles were included in our review, where ~ 50% describe the development and testing of tools and technologies that use pre-existing conditions to assess dementia risk. Only one publication provides official dementia screening guidelines for PCPs in people with pre-existing conditions. About 30% of the articles discuss managing the care of PwD, where most were anchored around models of multidisciplinary care and mitigating potentially inappropriate prescribing. CONCLUSION: To our knowledge, this is the first scoping review that examines the role for PCPs in the prevention, detection/diagnosis and management of dementia in the context of comorbidities. Given our findings, we recommend that future studies: 1) further validate tools for risk assessment, timely detection and diagnosis that incorporate other health conditions; 2) provide additional guidance into how comorbidities could impact dementia care (including prescribing medication) in primary care settings; 3) incorporate comorbidities into primary care quality indicators for dementia; and 4) explore how to best incorporate dementia and comorbidities into models/frameworks of holistic, person-centred care.

Understanding barriers to and facilitators of clinician-patient conversations about brain health and cognitive concerns in primary care: a systematic review and practical considerations for the clinician.

BACKGROUND: Primary care clinicians (PCCs) are typically the first practitioners to detect cognitive impairment in their patients, including those with Alzheimer's disease or related dementias (ADRD). However, conversations around cognitive changes can be challenging for patients, family members, and clinicians to initiate, with all groups reporting barriers to open dialogue. With the expanding array of evidence-based interventions for ADRD, from multidomain care management to novel biotherapeutics for early-stage AD, incorporating conversations about brain health into routine healthcare should become a standard of care. We conducted a systematic review to identify barriers to and facilitators of brain health conversations in primary care settings. METHODS: We systematically searched PubMed, Scopus, Web of Science, and the Cochrane Library for qualitative or quantitative studies conducted in the US between January 2000 and October 2022 that evaluated perceptions of cognition and provider-patient brain health conversations prior to formal screening for, or diagnosis of, mild cognitive impairment or ADRD. We assessed the quality of the included studies using the Mixed Methods Appraisal Tool. RESULTS: In total, 5547 unique abstracts were screened and 22 articles describing 19 studies were included. The studies explored perceptions of cognition among laypersons or clinicians, or provider-patient interactions in the context of a patient's cognitive concerns. We identified 4 main themes: (1) PCCs are hesitant to discuss brain health and cognitive concerns; (2) patients are hesitant to raise cognitive concerns; (3) evidence to guide clinicians in developing treatment plans that address cognitive decline is often poorly communicated; and (4) social and cultural context influence perceptions of brain health and cognition, and therefore affect clinical engagement. CONCLUSIONS: Early conversations about brain health between PCCs and their patients are rare, and effective tools, processes, and strategies are needed to make these vital conversations routine.

CommunityRx, a social care assistance intervention for family and friend caregivers delivered at the point of care: two concurrent blinded randomized controlled trials.

BACKGROUND: CommunityRx is an evidence-based social care intervention delivered to family and friend caregivers ("caregivers") at the point of healthcare to address health-related social risks (HRSRs). Two CommunityRx randomized controlled trials (RCTs) are being fielded concurrently on Chicago's South Side, a predominantly African American/Black community. CommunityRx-Hunger is a double-blind RCT enrolling caregivers of hospitalized children. CommunityRx-Dementia is a single-blind RCT enrolling caregivers of community-residing people with dementia. RCTs with caregivers face recruitment barriers, including caregiver burden and lack of systematic strategies to identify caregivers in clinical settings. COVID-19 pandemic-related visitor restrictions exacerbated these barriers and prompted the need for iteration of the protocols from in-person to remote operations. This study describes these protocols and methods used for successful iteration to overcome barriers. METHODS AND FINDINGS: CommunityRx uses individual-level data to generate personalized, local community resource referrals for basic, health and caregiving needs. In early 2020, two in-person RCT protocols were pre-tested. In March 2020, when pandemic conditions prohibited face-to-face clinical enrollment, both protocols were iterated to efficient, caregiver-centered remote operations. Iterations were enabled in part by the Automated Randomized Controlled Trial Information-Communication System (ARCTICS), a trial management system innovation engineered to integrate the data collection database (REDCap) with community resource referral (NowPow) and SMS texting (Mosio) platforms. Enabled by engaged Community Advisory Boards and ARCTICS, both RCTs quickly adapted to remote operations. To accommodate these adaptations, launch was delayed until November (CommunityRx-Hunger) and December (CommunityRx-Dementia) 2020. Despite the delay, 65% of all planned participants (CommunityRx-Hunger n = 417/640; CommunityRx-Dementia n = 222/344) were enrolled by December 2021, halfway through our projected enrollment timeline. Both trials enrolled 13% more participants in the first 12 months than originally projected for in-person enrollment. DISCUSSION: Our asset-based, community-engaged approach combined with widely accessible institutional and commercial information technologies facilitated rapid migration of in-person trials to remote operations. Remote or hybrid RCT designs for social care interventions may be a viable, scalable alternative to in-person recruitment and intervention delivery protocols, particularly for caregivers and other groups that are under-represented in traditional health services research. TRIAL REGISTRATION: ClinicalTrials.gov: CommunityRx-Hunger (NCT04171999, 11/21/2019); CommunityRx for Caregivers (NCT04146545, 10/31/2019).

Primary Care Pracitioner Perspectives on the Role of Primary Care in Dementia Diagnosis and Care.

Importance: Although the barriers to dementia care in primary care are well characterized, primary care practitioner (PCP) perspectives could be used to support the design of values-aligned dementia care pathways that strengthen the role of primary care. Objective: To describe PCP perspectives on their role in dementia diagnosis and care. Design, Setting, and Participation: In this qualitative study, interviews were conducted with 39 PCPs (medical doctors, nurse practitioners, and doctors of osteopathic medicine) in California between March 2020 and November 2022. Results were analyzed using thematic analysis. Main Outcomes and Measures: Overarching themes associated with PCP roles in dementia care. Results: Interviews were conducted with 39 PCPs (25 [64.1%] were female; 16 [41%] were Asian). The majority (36 PCPs [92.3%]) reported that more than half of their patients were insured via MediCal, the California Medicaid program serving low-income individuals. Six themes were identified that convey PCPs' perspectives on their role in dementia care. These themes focused on (1) their role as first point of contact and in the diagnostic workup; (2) the importance of long-term, trusting relationships with patients; (3) the value of understanding patients' life contexts; (4) their work to involve and educate families; (5) their activities around coordinating dementia care; and (6) how the care they want to provide may be limited by systems-level constraints. Conclusions and Relevance: In this qualitative study of PCP perspectives on their role in dementia care, there was alignment between PCP perspectives about the core values of primary care and their work diagnosing and providing care for people living with dementia. The study also identified a mismatch between these values and the health systems infrastructure for dementia care in their practice environment.

The intersection of social determinants of health and family care of people living with Alzheimer's disease and related dementias: A public health opportunity.

In this Perspective article, we highlight current research to illustrate the intersection of social determinants of health (SDOHs) and Alzheimer's disease and related dementia (ADRD) caregiving. We then outline how public health can support ADRD family caregivers in the United States. Emerging research suggests that family care for persons with ADRD is influenced by SDOHs. Public health actions that address these intersections such as improved surveillance and identification of ADRD caregivers; building and enhancing community partnerships; advancing dementia-capable health care and related payment incentives; and reducing the stigma of dementia and ADRD caregiving can potentially enhance the health and well-being of dementia caregivers. By engaging in one or all of these actions, public health practitioners could more effectively address the myriad of challenges facing ADRD caregivers most at risk for emotional, social, financial, psychological, and health disruption.

The national public health response to Alzheimer's disease and related dementias: Origins, evolution, and recommendations to improve early detection.

Longstanding gaps in the detection of Alzheimer's disease and related dementias (ADRD) and biopsychosocial care call for public health action to improve population health. We aim to broaden the understanding of the iterative role state plans have played over the last 20 years in prioritizing improvements in the detection of ADRD, primary care capacity, and equity for disproportionately affected populations. Informed by national ADRD priorities, state plans convene stakeholders to identify local needs, gaps, and barriers and set the stage for development of a national public health infrastructure that can align clinical practice reform with population health goals. We propose policy and practice actions that would accelerate the collaboration between public health, community organizations, and health systems to improve ADRD detection-the point of entry into care pathways that could ultimately improve outcomes on a national scale. HIGHLIGHTS: We systematically reviewed the evolution of state/territory plans for Alzheimer's disease and related dementias (ADRD). Plan goals improved over time but lacked implementation capacity. Landmark federal legislation (2018) enabled funding for action and accountability. The Centers for Disease Control and Prevention (CDC) funds three Public Health Centers of Excellence and many local initiatives. Four new policy steps would promote sustainable ADRD population health improvement.

Validation and expansion of a behavioral framework for dementia care partner resilience (CP-R).

BACKGROUND AND OBJECTIVES: Resilience - the ability to bounce back after a stressor - is a core component of successful family caregiving for people living with dementia. In this manuscript, we describe the preliminary empirical validation of a new behavioral framework developed from existing literature for assessing care partner resilience, CP-R, and propose its potential value for future research and clinical care. METHODS: We selected 27 dementia care partners who reported significant challenges prompted by a recent health crisis of their care recipient from three local university-affiliated hospitals in the United States. We conducted semi-structured interviews to elicit care partners' accounts of what they did to address those challenges that helped them recover during and after the crisis. Interviews were transcribed verbatim and analyzed using abductive thematic analysis. FINDINGS: When persons with dementia experienced health crises, care partners described various challenges in managing new and often complex health and care needs, navigating informal and formal care systems, balancing care responsibilities with other needs, and managing difficult emotions. We identified five resilience-related behavioral domains, including problem-response (problem-solving, -distancing, -accepting, and -observing), help-related (help-seeking, -receiving, and -disengaging), self-growth (self-care activities, spiritual-related activities, and developing and maintaining meaningful relationships), compassion-related (self-sacrifice and relational compassion behaviors), and learning-related (learning from others and reflecting). DISCUSSIONS AND IMPLICATIONS: Findings support and expand the multidimensional CP-R behavior framework for understanding dementia care partner resilience. CP-R could guide the systematic measurement of dementia care partners' resilience-related behaviors, support individual tailoring of behavioral care plans, and inform the development of resilience-enhancing interventions.

Building a dementia-capable nursing workforce.

BACKGROUND: Undergraduate nursing students will play a pivotal role in caring for the rising numbers of older adults and people living with dementia (PLWD). However, many do not receive training in geriatrics or dementia and do not enter this field post-graduation, contributing to the workforce shortage. OBJECTIVE: We aimed to capture students' interest and intention to work with PLWD, their suggestions about training, and to evaluate interest in a new elective long-term care (LTC) externship. METHODS: We developed and administered a survey to Bachelor of Science in Nursing students consisting of questions modified from the Dementia Attitude Scale and related to respondents' health care experience, attitudes about caring for older adults, comfort working with PLWD, and willingness to develop geriatric and dementia care skills. We then conducted focus groups about desired curricular and clinical content. RESULTS: Seventy-six students completed the survey. The majority reported low interest in working with and low knowledge of caring for older adults and PLWD. Six focus group participants expressed interest in participating in hands-on learning opportunities. Participants identified specific training components to attract students to geriatrics education. CONCLUSIONS: Our findings informed the development, piloting, and evaluation of a new LTC externship at the University of Washington Schoool of Nursing.

Two concurrent randomized controlled trials of CommunityRx, a social care intervention for family and friend caregivers delivered at the point of care.

Background: CommunityRx is an evidence-based social care intervention delivered to family and friend caregivers ("caregivers") at the point of healthcare to address health-related social risks (HRSRs). CommunityRx-Hunger is a double-blind randomized controlled trial (RCT) that enrolls caregivers of hospitalized children. CommunityRx-Dementia is a single-blind RCT that enrolls caregivers of community-residing people with dementia. Clinical trials that enroll caregivers face recruitment barriers, including caregiver burden and lack of systematic strategies to identify and track caregivers. COVID-19 pandemic-related visitor restrictions exacerbated these barriers and prompted the need for iteration of the CommunityRx protocols from in-person to remote operations. This study describes the novel methods used to iterate existing RCT protocols and factors contributing to their successful iteration. Methods: CommunityRx uses individual-level data to generate personalized community resource referrals for basic, health and caregiving needs. Our research program uses an asset-based, community-engaged approach including study-specific community advisory boards (CABs). In early 2020, both RCT protocols were pre-tested in-person. In March 2020, when pandemic conditions prohibited enrollment during clinical encounters, both protocols were iterated to efficient, caregiver-centered remote operations. Iterations were enabled in part by the Automated Randomized Controlled Trial Information-Communication System (ARCTICS), a trial management system innovation engineered to integrate the data collection database (REDCap) with community resource referral (NowPow) and SMS texting (Mosio) platforms. Results: Enabled by engaged CABs and ARCTICS, both RCTs quickly adapted to remote operations. Designed before the pandemic, we had planned to launch both trials by March 2020 and complete enrollment by December 2021. The pandemic postponed launch until November (CommunityRx-Hunger) and December (CommunityRx-Dementia) 2020. Despite the delay, 65% of all planned participants (CommunityRx-Hunger n = 417/640; CommunityRx-Dementia n = 222/344) were enrolled by December 2021, halfway through our projected enrollment timeline. Both trials enrolled 13% more participants in 12 months than originally projected in-person. Conclusions: Our asset-based, community-engaged approach combined with widely accessible institutional and commercial information technologies facilitated rapid migration to remote trial operations. Remote or hybrid RCT designs for social care interventions may be a viable, scalable alternative to in-person recruitment and intervention delivery protocols, particularly for caregivers and other groups that are under-represented in traditional health services research. Trial Status: Both studies are registered on ClinicalTrials.gov: CommunityRx-Hunger (NCT04171999); CommunityRx for Caregivers (NCT04146545); My Diabetes My Community (NCT04970810).

Caregiving in a Pandemic: Health-Related Socioeconomic Vulnerabilities Among Women Caregivers Early in the COVID-19 Pandemic.

PURPOSE: Family and friends who provide regular care for a sick or dependent individual ("caregivers") are at increased risk of health-related socioeconomic vulnerabilities (HRSVs). This study examined pre-pandemic prevalence of and early pandemic changes in HRSVs among women caregivers compared with non-caregivers. METHODS: A cross-sectional survey was conducted in April 2020 (early pandemic) with 3,200 English-speaking US women aged 18 years or older, 30% of whom identified as caregivers. We modeled adjusted odds of self-reported HRSVs (financial strain, food/housing insecurity, interpersonal violence, transportation/utilities difficulties) before and changes during the early pandemic by caregiving status. Models were adjusted for age, race/ethnicity, marital status, education, income, number of people in household, number of children in household, physical and mental health, and number of comorbidities. RESULTS: Pre-pandemic, 63% of caregivers and 47% of non-caregivers reported 1 or more vulnerability (P <.01); food insecurity was most prevalent (48% of caregivers vs 33% of non-caregivers, P <.01). In the early pandemic, caregivers had higher odds than non-caregivers of financial strain, both incident (adjusted odds ratio [AOR] = 2.1; 95% CI, 1.6-2.7) and worsening (AOR = 2.0; 95% CI, 1.4-2.8); incident interpersonal violence (AOR = 2.0; 95% CI, 1.5-2.7); incident food insecurity (AOR = 1.6; 95% CI, 1.2-2.1); incident transportation difficulties (AOR = 1.9; 95% CI, 1.3-2.6); and incident housing insecurity (AOR = 1.6; 95% CI, 1.1-2.3). CONCLUSION: The coronavirus disease 2019 (COVID-19) pandemic increased risk of incident and worsening HRSVs for caregivers more than for non-caregivers. COVID-19 response and recovery efforts should target caregivers to reduce modifiable HRSVs and promote the health of caregivers and those who depend on them.Annals Online First article.

Program of Intensive Support in Emergency Departments for Care Partners of Cognitively Impaired Patients: Protocol for a Multisite Randomized Controlled Trial.

BACKGROUND: Older adults with cognitive impairment have more emergency department visits and 30-day readmissions and are more likely to die after visiting the emergency department than people without cognitive impairment. Emergency department providers frequently do not identify cognitive impairment. Use of cognitive screening tools, along with better understanding of root causes for emergency department visits, could equip health care teams with the knowledge needed to develop individually tailored care management strategies for post-emergency department care. By identifying and directly addressing patients' and informal caregivers' (or care partners') psychosocial and health care needs, such strategies could reduce the need for repeat acute care. We have used the terms "caregiver" and "care partner" interchangeably. OBJECTIVE: We aimed to describe the protocol for a randomized controlled trial of a new care management intervention, the Program of Intensive Support in Emergency Departments for Care Partners of Cognitively Impaired Patients (POISED) trial, compared with usual care. We described the research design, intervention, outcome measures, data collection techniques, and analysis plans. METHODS: Emergency department patients who were aged ≥75 years and screened positive for cognitive impairment via either the Mini-Cog or the proxy-reported Short Informant Questionnaire on Cognitive Decline in the Elderly, with a planned discharge to home, were recruited to participate with their identified informal (family or friend) caregiver in the 2-site POISED randomized controlled trial at New York University Langone Health and Indiana University. The intervention group received 6 months of care management from the POISED Care Team of registered nurses and specialty-trained paraprofessionals, who perform root cause analyses, administer standardized assessments, provide advice, recommend appropriate referrals, and, when applicable, implement dementia-specific comorbid condition protocols. The control group received care as recommended at emergency department discharge (usual care) and were given information about resources for further cognitive assessment. The primary outcome is repeat emergency department use; secondary outcomes include caregiver activation for patient health care management, caregiver depression, anxiety, and experience of social support as important predisposing and time-varying enabling and need characteristics. Data were collected from questionnaires and patients' electronic health records. RESULTS: Recruitment was conducted between March 2018 and May 2021. Study findings will be published in peer-reviewed journals and presented to peer audiences, decision makers, stakeholders, and other interested persons. CONCLUSIONS: The POISED intervention is a promising approach to tailoring care management based on root causes for emergency department admission of patients with cognitive impairment with the aim of reducing readmissions. This trial will provide insights for caregivers and emergency department and primary care providers on appropriate, personalized, and proactive treatment plans for older adults with cognitive impairment. The findings will be relevant to audiences concerned with quality of life for individuals with cognitive impairment and their caregivers. TRIAL REGISTRATION: ClinicalTrials.gov NCT03325608; https://clinicaltrials.gov/ct2/show/NCT03325608. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/36607.

Inclusion of older adults and reporting of consent processes in randomized controlled trials in the emergency department: A scoping review.

Objective: Conducting research in the emergency department (ED) is often complicated by patients' acute and chronic illnesses, which can adversely affect cognition and subsequently capacity to consent for research, especially in older adults. Validated screening tools to assess capacity to consent for research exist, but neither the frequency of use nor which ones are used for ED research are known. Methods: We conducted a scoping review using standard review techniques. Inclusion criteria included (1) randomized controlled trials (RCTs) from publication years 2014-2019 that (2) enrolled participants only in the ED, (3) included patients aged 65+ years, and (4) were fully published in English. Articles were sourced from Embase and screened using Covidence. Results: From 3130 search results, 269 studies passed title/abstract and full text screening. Average of the mean or median ages was 55.7 years (SD 14.2). The mean number of study participants was 311.9 [range 8-10,807 participants]. A few (n = 13, 4.8%) waived or had exception from informed consent. Of the 256 studies requiring consent, a fourth (26.5%, n = 68) specifically excluded patients due to impaired capacity to consent. Only 11 (4.3%) documented a formal capacity screening tool and only 13 (5.1%) reported consent by legally authorized representative (LAR). Conclusions: Most RCTs enrolling older adults in EDs did not report assessment of capacity to consent or use of LARs. This snapshot of informed consent procedures is potentially concerning and suggests that either research consent processes for older patients and/or reporting of consent processes require improvement.

Dementia diagnosis and utilization patterns in a racially diverse population within an integrated health care delivery system.

Introduction: In an effort to identify improvement opportunities for earlier dementia detection and care within a large, integrated health care system serving diverse Medicare Advantage (MA) beneficiaries, we examined where, when, and by whom Alzheimer's disease and related dementias (ADRD) diagnoses are recorded as well as downstream health care utilization and life care planning. Methods: Patients 65 years and older, continuously enrolled in the Kaiser Foundation health plan for at least 2 years, and with a first ADRD diagnosis between January 1, 2015, and December 31, 2018, comprised the incident cohort. Electronic health record data were used to identify site and source of the initial diagnosis (clinic vs hospital-based, provider type), health care utilization in the year before and after diagnosis, and end-of-life care. Results: ADRD prevalence was 5.5%. A total of 25,278 individuals had an incident ADRD code (rate: 1.2%) over the study period-nearly half during a hospital-based encounter. Hospital-diagnosed patients had higher comorbidities, acute care use before and after diagnosis, and 1-year mortality than clinic-diagnosed individuals (36% vs 11%). Many decedents (58%-72%) received palliative care or hospice. Of the 55% diagnosed as outpatients, nearly two-thirds were diagnosed by dementia specialists; when used, standardized cognitive assessments indicated moderate stage ADRD. Despite increases in advance care planning and visits to dementia specialists in the year after diagnosis, acute care use also increased for both clinic- and hospital-diagnosed cohorts. Discussion: Similar to other MA plans, ADRD is under-diagnosed in this health system, compared to traditional Medicare, and diagnosed well beyond the early stages, when opportunities to improve overall outcomes are presumed to be better. Dementia specialists function primarily as consultants whose care does not appear to mitigate acute care use. Strategic targets for ADRD care improvement could focus on generating pragmatic evidence on the value of proactive detection and tracking, care planning, and the role of specialists in chronic care management.

Challenges and opportunities in conducting research with older adults with dementia during COVID-19 and beyond.

The coronavirus disease 19 (COVID-19) pandemic has created significant and new challenges for the conduct of clinical research involving older adults with Alzheimer's disease and related dementias (ADRD). It has also stimulated positive adaptations in methods for engaging older adults with ADRD in research, particularly through the increased availability of virtual platforms. In this paper, we describe how we adapted standard in-person participant recruitment and qualitative data collection methods for virtual use in a study of decision-making experiences in older adults with ADRD. We describe key considerations for the use of technology and virtual platforms and discuss our experience with using recommended strategies to recruit a diverse sample of older adults. We highlight the need for research funding that supports the community-based organizations on which improving equity in ADRD research participation often depends.

Developing a New Behavioral Framework for Dementia Care Partner Resilience: A Mixed Research Synthesis.

BACKGROUND AND OBJECTIVES: Caring for a person living with dementia requires resilience, the capacity to recover and grow from challenging situations. Despite the increasing interest in assessing and promoting resilience for dementia care partners, behaviors that indicate this attribute are not well known. The aim of this study was to synthesize the literature to identify resilience-related behaviors and develop a new framework for future validation and intervention research. RESEARCH DESIGN AND METHODS: We searched English-language peer-reviewed articles (January 1991-June 2019) reporting qualitative or quantitative descriptions of resilience-related behaviors among dementia care partners. Thematic analysis was used to categorize behaviors into domains, identify the relationships among them, and generate a thematic map. RESULTS: Sixteen articles were identified according to predefined inclusion criteria. Four domains emerged: (a) problem-response behaviors (problem-solving, problem-distancing); (b) self-growth behaviors (self-care activities, spiritual-related activities, and developing and maintaining meaningful social relationships); (c) help-related behaviors (help-seeking and help-receiving); and (d) learning-related behaviors (learning from others and reflection). Definitions of each domain, identification of corresponding behaviors, and formulation of Care Partner Resilience (CP-R) behavioral framework were informed by mixed research synthesis results and other relevant literature. DISCUSSION AND IMPLICATIONS: The CP-R framework emerged as a result of a new focus on identifying and cultivating strengths instead of evaluating strain and burden. It serves as a useful foundation for understanding the impact of specific behaviors on dementia care partner resilience. Once validated, this framework will inform the development of future measures, research, interventions, and policies for dementia care partners.

A mixed-methods evaluation of home-based primary care in dementia within an integrated system.

BACKGROUND: No prior studies have examined the effects of home-based primary care (HBPC) in persons living with dementia (PLWD), within an ecosystem of serious illness care in an integrated healthcare system. Our objectives were to compare the characteristics of PLWD receiving HBPC and their hospital utilization and end-of-life care, with those of a matched comparison group, and to understand the experiences of family caregivers of PLWD receiving HBPC. METHODS: This mixed-methods study used a retrospective observational cohort design with PLWD receiving HBPC (n = 287) from 2015 to 2020 and a strata-matched comparison group (n = 861), and qualitative phone interviews with 16 HBPC family caregivers in 2020. Inverse probability of treatment weighting propensity score-adjusted models were used to compare time-to-first hospital-based utilization and, for decedents, home palliative and hospice care and place of death. Care experience was captured through caregiver interviews. RESULTS: Patients receiving HBPC had a similar risk of hospital utilization [adjusted hazard ratio, 1.06 (95% CI: 0.89-1.26), p = 0.51] as a matched non-HBPC comparison group after a median follow-up of 199 days. However, HBPC decedents (n = 159) were more likely to receive home palliative care or hospice [rate ratio, RR: 1.23 (95% CI: 1.07-1.42), p < 0.01] and to die at home [RR: 1.66 (95% CI: 1.35-2.05), p < 0.001] than were non-HBPC decedents (n = 423). Caregivers reported that HBPC provided coordinated, continuous, and convenient care that was aligned with families' priorities and goals; however, some expressed unmet needs, especially for help paying for personal care and medical supplies/equipment, and a desire for clearer communication about program operations and more quality oversight for contract services. CONCLUSIONS: Although HBPC for PLWD was associated with a similar risk of hospital utilization compared to a matched non-HBPC comparison group, HBPC resulted in more patient-centered end-of-life care for decedents. Prospective studies of HBPC that further elicit and address unmet needs are warranted.

Patterns of incident dementia codes during the COVID-19 pandemic at an integrated healthcare system.

BACKGROUND: The COVID-19 pandemic delayed diagnosis and care for some acute conditions and reduced monitoring for some chronic conditions. It is unclear whether new diagnoses of chronic conditions such as dementia were also affected. We compared the pattern of incident Alzheimer's disease and related dementia (ADRD) diagnosis codes from 2017 to 2019 through 2020, the first pandemic year. METHODS: Retrospective cohort design, leveraging 2015-2020 data on all members 65 years and older with no prior ADRD diagnosis, enrolled in a large integrated healthcare system for at least 2 years. Incident ADRD was defined as the first ICD-10 code at any encounter, including outpatient (face-to-face, video, or phone), hospital (emergency department, observation, or inpatient), or continuing care (home, skilled nursing facility, and long-term care). We also examined incident ADRD codes and use of telehealth by age, sex, race/ethnicity, and spoken language. RESULTS: Compared to overall annual incidence rates for ADRD codes in 2017-2019, 2020 incidence was slightly lower (1.30% vs. 1.40%), partially compensating later in the year for reduced rates during the early months of the pandemic. No racial or ethnic group differences were identified. Telehealth ADRD codes increased fourfold, making up for a 39% drop from face-to-face outpatient encounters. Older age (85+) was associated with higher odds of receiving telecare versus face-to-face care in 2020 (OR:1.50, 95%CI: 1.25-1.80) and a slightly lower incidence of new codes; no racial/ethnic, sex, or language differences were identified in the mode of care. CONCLUSIONS: Rates of incident ADRD codes dropped early in the first pandemic year but rose again to near pre-pandemic rates for the year as a whole, as clinicians rapidly pivoted to telehealth. With refinement of protocols for remote dementia detection and diagnosis, health systems could improve access to equitable detection and diagnosis of ADRD going forward.

Modifying the Mini-Cog to Screen for Cognitive Impairment in Nonliterate Individuals.

OBJECTIVES: The Mini-Cog, a rapid, valid, and reliable screening tool for cognitive impairment, consists of 3-word recall and an executive clock drawing test (CDT). However, CDT requires at least basic literacy and cultural exposure to analog clocks, conditions not met in many population groups around the world. We developed a modification of the Mini-Cog (MMC) for use with nonliterate and literate individuals. METHODS: Participants were adults (≥60 years) with no neurological diagnosis, with known cognitive impairment due to stroke, Parkinsonism, traumatic brain injury, or Alzheimer's disease, and whose family members were able to read and write. We replaced the CDT with two tasks of everyday life: a serial subtraction task or a multistep performance task. Family members rated the acceptability and feasibility of the Mini-Cog versions using a 6-point scale and completed a proxy-rated cognitive staging tool, the Dementia Severity Rating Scale (DSRS). Spearman's rho, Mann-Whitney U, and chi-square tests were used to evaluate group differences and associations between measures. RESULTS: Data were collected from 63 participants (75% ≥ 60 years, 67% nonliterate). Literacy was associated with CDT (chi-square strength 0.9, p < 0.001). Both MMC versions correlated with DSRS in healthy adults and patients (rho 0.6-0.7, p < 0.05). In literate individuals, the acceptability and feasibility of CDT and both alternate distractors were similarly high (5/6). CONCLUSIONS: Two alternate distractor tasks may successfully replace CDT in the Mini-Cog. The MMC versions are promising and deserve further study as screening tools for cognitive impairment in larger and more fully characterized samples.