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.

Characterizing patients hospitalized without an acute care indication: A retrospective cohort study.

BACKGROUND: Hospitalizations by patients who do not meet acute inpatient criteria are common and overburden healthcare systems. Studies have characterized these alternate levels of care (ALC) but have not delineated prolonged (pALC) versus short ALC (sALC) stays. OBJECTIVE: To descriptively compare pALC and sALC hospitalizations-groups we hypothesize have unique needs. DESIGNS, SETTINGS, AND PARTICIPANTS: A retrospective study of hospitalizations from March-April 2018 at an academic safety-net hospital. MAIN OUTCOME AND MEASURES: Levels of care for pALC (>3 days) and sALC (1-3 days) were determined using InterQual©, an industry standard utilization review tool for determining the clinical appropriateness of hospitalization. We examined sociodemographic and clinical characteristics. RESULTS: Of 2365 hospitalizations, 215 (9.1%) were pALC, 277 (11.7%) were sALC, and 1873 (79.2%) had no ALC days. There were 17,683 hospital days included, and 28.3% (n = 5006) were considered ALC. Compared to patients with sALC, those with pALC were older and more likely to be publicly insured, experience homelessness, and have substance use or psychiatric comorbidities. Patients with pALC were more likely to be admitted for care meeting inpatient criteria (89.3% vs. 66.8%, p < .001), had significantly more ALC days (median 8 vs. 1 day, p < .001), and were less likely to be discharged to the community (p < .001). CONCLUSIONS: Patients with prolonged ALC stays were more likely to be admitted for acute care, had greater psychosocial complexity, significantly longer lengths of stay, and unique discharge needs. Given the complexity and needs for hospitalizations with pALC days, intensive interdisciplinary coordination and resource mobilization are necessary.

Unmet health-related needs of community-dwelling older adults during COVID-19 lockdown in a diverse urban cohort.

BACKGROUND: Shelter-in-place orders during the COVID-19 pandemic created unmet health-related and access-related needs among older adults. We sought to understand the prevalence of these needs among community-dwelling older adults. METHODS: We performed a retrospective chart review of pandemic-related outreach calls to older adults between March and July 2020 at four urban, primary care clinics: a home-based practice, a safety net adult medicine clinic, an academic geriatrics practice, and a safety net clinic for adults living with HIV. Participants included those 60 or older at three sites, and those 65 or older with a chronic health condition at the fourth. We describe unmet health-related needs (the need for medication refills, medical supplies, or food) and access-related needs (ability to perform a telehealth visit, need for a call back from the primary care provider). We performed bivariate and multivariate analyses to examine the association between unmet needs and demographics, medical conditions, and healthcare utilization. RESULTS: Sixty-two percent of people had at least one unmet need. Twenty-six percent had at least one unmet health-related need; 14.0% needed medication refills, 12.5% needed medical supplies, and 3.0% had food insecurity. Among access-related needs, 33% were not ready for video visits, and 36.4% asked for a return call from their provider. Prevalence of any unmet health-related need was the highest among Asian versus White (36.4% vs. 19.1%) and in the highest versus lowest poverty zip codes (30.8% vs. 18.2%). Those with diabetes and COPD had higher unmet health-related needs than those without, and there was no change in healthcare utilization. CONCLUSIONS: During COVID, we found that disruptions in access to services created unmet needs among older adults, particularly for those who self-identified as Asian. We must foreground the needs of this older population group in the response to future public health crises.

Lessons from Detecting Cognitive Impairment Including Dementia (DetectCID) in Primary Care.

BACKGROUND: Cognitive impairment, including dementia, is frequently under-detected in primary care. The Consortium for Detecting Cognitive Impairment, including Dementia (DetectCID) convenes three multidisciplinary teams that are testing novel paradigms to improve the frequency and quality of patient evaluations for detecting cognitive impairment in primary care and appropriate follow-up. OBJECTIVE: Our objective was to characterize the three paradigms, including similarities and differences, and to identify common key lessons from implementation. METHODS: A qualitative evaluation study with dementia specialists who were implementing the detection paradigms. Data was analyzed using content analysis. RESULTS: We identified core components of each paradigm. Key lessons emphasized the importance of engaging primary care teams, enabling primary care providers to diagnose cognitive disorders and provide ongoing care support, integrating with the electronic health record, and ensuring that paradigms address the needs of diverse populations. CONCLUSION: Approaches are needed that address the arc of care from identifying a concern to post-diagnostic management, are efficient and adaptable to primary care workflows, and address a diverse aging population. Our work highlights approaches to partnering with primary care that could be useful across specialties and paves the way for developing future paradigms that improve differential diagnosis of symptomatic cognitive impairment, identifying not only its presence but also its specific syndrome or etiology.

Use of Services by People Living Alone With Cognitive Impairment: A Systematic Review.

BACKGROUND AND OBJECTIVES: Formal supports and social services are essential to people living alone with cognitive impairment (PLACI) because they are at risk of negative health outcomes and lack cohabitants who may support them with cognitively demanding tasks. To further our understanding of this critical and worldwide issue, we conducted a systematic review to understand whether, and how, PLACI access and use essential formal supports and services. RESEARCH DESIGN AND METHODS: We searched 6 databases (PubMed, Embase, PsycINFO, CINAHL, Web of Science, and Sociological Abstracts) to identify quantitative and mixed-method literature on formal service use among PLACI. The initial search was conducted in 2018 and updated in 2020. RESULTS: We identified 32 studies published between 1992 and 2019, representing 13 countries, that met our criteria: 16 reported on health services and 26 on social services. Most studies compared PLACI with people with cognitive impairment living with others. Health service use was lower or similar among PLACI, as opposed to counterparts living with others. Most studies reported a higher use of social services (e.g., home services) among PLACI than those living with others. Overall use of essential home service among PLACI was higher in Europe than in the United States, a country where large portions of PLACI were reported receiving no formal services. DISCUSSION AND IMPLICATIONS: We identified wide variability among countries and major gaps in service use. Results for use of health services were mixed, although our findings suggest that PLACI may have fewer physician visits than counterparts living with others. Our findings suggest that varying policies and budgets for these services among countries may have affected our findings. We encourage researchers to evaluate and compare the influence of social policies in the well-being of PLACI. We also encourage policy makers to prioritize the needs of PLACI in national dementia strategies.

Adult Protective Services Training: Insights from California Caseworkers.

Adult Protective Services (APS) training is critical to the mission of APS in supporting the workforce, but not much is known from caseworkers' perspectives. To learn more, 63 caseworkers in five California counties, from urban, suburban, and rural areas, participated in focus groups. Discussion was organized around three open-ended questions regarding implementation of the National Adult Protective Services Association (NAPSA) training content in practice: (1) What trainings have changed your practice and how? (2) How could training be changed to make it easier to implement? (3) What characteristics of your work environment interfere with implementation of learning? Through iterative reading and review of focus group transcripts, four themes emerged: (1) motivations, (2) barriers, (3) facilitators, and (4) impact. Caseworkers also made recommendations to improve training for better implementation of concepts and skills. Caseworkers involved in this study were quick to assert the need for increased access to training, more sophisticated content, and experiential learning. Moreover, expanding and enhancing safety training was recommended, as was aligning training with local needs and policies. Since the NAPSA approved APS core competencies and advanced topics are also offered and used in other counties and states, considering how to improve training could benefit caseworkers nationwide.

The Effects of the COVID-19 Pandemic on the Lived Experience of Diverse Older Adults Living Alone With Cognitive Impairment.

BACKGROUND AND OBJECTIVES: Even before the COVID-19 pandemic, older adults with cognitive impairment living alone (an estimated 4.3 million individuals in the United States) were at high risk for negative health outcomes. There is an urgent need to learn how this population is managing during the pandemic. RESEARCH DESIGN AND METHODS: This is a qualitative study of 24 adults aged 55 and older living alone with cognitive impairment from diverse racial/ethnic backgrounds. Participants' lived experiences during the pandemic were elicited via 59 ethnographic interviews conducted over the phone either in English, Spanish, or Cantonese. Using a qualitative content analysis approach, interview transcripts were analyzed to identify codes and themes. RESULTS: Qualitative analysis of transcripts revealed 5 themes: (a) fear generated by the pandemic, (b) distress stemming from feeling extremely isolated, (c) belief in misinformation, (d) strategies for coping during the pandemic, and (e) the importance of access to essential services. DISCUSSION AND IMPLICATIONS: This pandemic put a spotlight on the precarity and unmet needs of older adults living alone with cognitive impairment. Findings underscore the need to expand access to home care aides and mental health services for this population.

Subjective cognitive decline and elder mistreatment in Mexican community-dwelling older adults.

BACKGROUND AND OBJECTIVES: Elder mistreatment in individuals with subjective cognitive decline is an understudied public health problem that violates human rights. DESIGN AND METHODS: Cross-sectional study of 386 Mexican community-dwelling older adults. Individuals with episodic memory, executive function, language, visuospatial skills or attention cognitive complaints without low cognitive performance scores in the Mini-Mental State Examination and the Isaacs Set Test that were considered positive for subjective cognitive decline (SCD). Elder mistreatment (EM) was considered positive if any of the questions on the Geriatric Mistreatment Scale were answered affirmatively. Logistic regression models were created to test the association between SCD and EM. RESULTS: After adjustments made by age, sex, education and depressive symptoms a positive association was found between SCD and EM (OR = 2.226; 95%CI = 1.296 to 3.822 ; p = 0.004). This association was observed in all subtypes of cognitive complaints except excecutive function: episodic memory (OR = 2.219 ; 95%CI = 1.321 to 3.728 ; p = 0.003), language (OR = 2.500 ; 95% CI = 1.422 to 4.396 ; p = 0.001), visuospatial (OR = 2.158 ; 95%CI = 1.162 to 4.007 ; p = 0.015), attention (OR = 2.197 ; 95%CI = 1.206 to 4.001 ; p = 0.010) and executive (OR = 1 2.062 ; 95%CI = 0.981 to 4.333 ; p = 0.056). Discussion and Implications: This study brings to light the relation between SCD and EM in a population where it has been understudied. Exploring mistreatment in older adults who experience subjective cognitive decline might help preserve their safety and create future prevention and intervention strategies.

In-Home Technology Training Among Socially Isolated Older Adults: Findings From the Tech Allies Program.

Technology has the potential to increase social connectedness among older adults, but one-third do not use the internet. We formed a community partnership, Tech Allies, providing tablets, broadband, and 1:1 training to isolated older adults. In a pragmatic pilot trial, participants were randomized into intervention (n = 44) and waitlist (n = 39) groups. Volunteers provided eight weekly, in-home iPad lessons. Surveys assessed self-reported loneliness, social support, technology use, and confidence at baseline and follow-up. A subgroup completed in-home interviews. The intervention group showed no change in loneliness, marginally significant improvement in social support and technology confidence, and significant increase in technology use. Among the waitlist group, no changes were observed. Interviews showed some participants felt more connected to the world, and many expressed increased technology confidence. Key implementation lessons on program feasibility are discussed. Embedding training within existing community-based programs holds promise as a potentially sustainable mechanism to provide digital training to older adults.

Caring for Unbefriended Older Adults and Adult Orphans: A Clinician Survey.

Objectives: Unbefriended older adults are those who lack the capacity to make medical decisions and do not have a completed advance directive that can guide treatment decisions or a surrogate decision maker. Adult orphans are those who retain medical decision-making capacity but are at risk of becoming unbefriended due to lack of a completed advance health care directive and lack of a surrogate decision maker. In a follow-up to the 2016 American Geriatrics Society (AGS) position statement on unbefriended older adults, we examined clinicians' experiences in caring for unbefriended older adults and adult orphans.Methods: Clinicians recruited through the AGS (N = 122) completed an online survey about their experiences with unbefriended older adults regarding the perceived frequency of contact, clinical concerns, practice strategies, and terminology; and also with adult orphans regarding the perceived frequency of contact, methods of identification, and terminology.Results: Almost all inpatient (95.9%) and outpatient (86.4%) clinicians in this sample encounter unbefriended older adults at least quarterly and 92.2% of outpatient clinicians encounter adult orphans at least quarterly. Concerns about safety (95.9%), medication self-management (90.4%), and advance care planning (86.3%) bring unbefriended older adults to outpatient clinicians' attention "sometimes" to "frequently." Prolonged hospital stays (87.7%) and delays in transitioning to end-of-life care (85.7%) bring unbefriended older adults to inpatient clinicians' attention "sometimes" to "frequently." Clinicians apply a wide range of practice strategies to these populations. Participants suggested alternative terminology to replace "unbefriended" and "adult orphan."Conclusions: This study suggests that unbefriended older adults are frequently encountered in geriatrics practice, both in the inpatient and outpatient settings, and that there is widespread awareness of adult orphans in the outpatient setting. Clinicians' awareness of both groups suggests avenues for intervention and prevention.Clinical Implications: Health care professionals in geriatric settings will likely encounter older adults in need of advocates. Clinicians, attorneys, and policymakers should collaborate to improve early detection and to meet the needs of this vulnerable population.

Can the Safety Net be Age-Friendly? How to Address Its Important Role in Caring for Older Adults with Geriatric Conditions.

The safety net, a collection of public hospitals, federally qualified health centers (FQHCs), and publicly funded community-based healthcare entities, provides essential care to middle-aged and older adults with geriatric conditions. The role of the safety net for these adults will intensify over the next two decades with the growing numbers of middle-aged and older adults with adverse social determinants of health and premature geriatric conditions. The foundation for addressing their needs is to detect geriatric conditions and then focus care plans on the impact of these factors on function, which predicts mortality and quality of life more than chronic conditions alone. To detect geriatric conditions in safety net populations, the Age-Friendly Health System (AFHS) framework offers an evidence-based focus on the 4Ms: Mentation, Mobility, Medications, and what Matters. Further incorporating geriatric care models that target the 4Ms and are adapted to safety net populations will enable age-friendly care that optimizes health and addresses what matters to older people.

Effect of Collaborative Dementia Care via Telephone and Internet on Quality of Life, Caregiver Well-being, and Health Care Use: The Care Ecosystem Randomized Clinical Trial.

Importance: Few health systems have adopted effective dementia care management programs. The Care Ecosystem is a model for delivering care from centralized hubs across broad geographic areas to caregivers and persons with dementia (PWDs) independently of their health system affiliations. Objective: To determine whether the Care Ecosystem is effective in improving outcomes important to PWDs, their caregivers, and payers beyond those achieved with usual care. Design, Setting, and Participants: A single-blind, randomized clinical trial with a pragmatic design was conducted among PWDs and their caregivers. Each PWD-caregiver dyad was enrolled for 12 months between March 20, 2015, and February 28, 2017. Data were collected until March 5, 2018. Study interventions and assessments were administered over the telephone and internet by clinical and research teams in San Francisco, California, and Omaha, Nebraska. Of 2585 referred or volunteer PWD-caregiver dyads in California, Iowa, or Nebraska, 780 met eligibility criteria and were enrolled. A total of 512 PWD-caregiver dyads were randomized to receive care through the Care Ecosystem and 268 dyads to receive usual care. All eligible PWDs had a dementia diagnosis; were enrolled or eligible for enrollment in Medicare or Medicaid; and spoke English, Spanish, or Cantonese. Analyses were intention-to-treat. Intervention: Telephone-based collaborative dementia care was delivered by a trained care team navigator, who provided education, support and care coordination with a team of dementia specialists (advanced practice nurse, social worker, and pharmacist). Main Outcomes and Measures: Primary outcome measure: Quality of Life in Alzheimer's Disease based on caregiver's rating of 13 aspects of PWD's well-being (including physical health, energy level, mood, living situation, memory, relationships, and finances) on a 4-point scale (poor to excellent). Secondary outcomes: frequencies of PWDs' use of emergency department, hospitalization, and ambulance services; caregiver depression (score on 9-Item Patient Health Questionnaire; higher scores indicate more severe depression); and caregiver burden (score on 12-Item Zarit Burden Interview; higher scores indicate more severe caregiver burden). Results: The 780 PWDs (56.3% female; mean [SD] age, 78.1 [9.9] years) and 780 caregivers (70.9% female; mean [SD] age, 64.7 [12.0] years) lived in California (n = 452), Nebraska (n = 284), or Iowa (n = 44). Of 780 dyads, 655 were still active at 12 months, and 571 completed the 12-month survey. Compared with usual care, the Care Ecosystem improved PWD quality of life (B, 0.53; 95% CI, 0.25-1.30; P = .04), reduced emergency department visits (B, -0.14; 95% CI, -0.29 to -0.01; P = .04), and decreased caregiver depression (B, -1.14; 95% CI, -2.15 to -0.13; P = .03) and caregiver burden (B, -1.90; 95% CI, -3.89 to -0.08; P = .046). Conclusions and Relevance: Effective care management for dementia can be delivered from centralized hubs to supplement usual care and mitigate the growing societal and economic burdens of dementia. Trial Registration: ClinicalTrials.gov identifier: NCT02213458.

Ethical Challenges in Caring for Unrepresented Adults: A Qualitative Study of Key Stakeholders.

The decision-making process on behalf of unrepresented adults (ie, those who lack capacity to make medical decisions and have no identifiable surrogate) is at risk for not incorporating their interests, raising ethical concerns. We performed semistructured interviews with key stakeholders across multiple sectors in an urban county who participate in the care of or decision-making process for unrepresented adults. This included a safety net healthcare system, social services, and legal services. Participants were healthcare, social service, and legal professionals who worked with unrepresented adults (n = 25). Our interview questions explored the current process for proxy decision making in cases of unrepresented adults and potential alternatives. We recorded, transcribed, and analyzed interviews using the constant comparative method to identify major themes related to ethical challenges if they were raised. Participants grappled with multiple ethical challenges around the care of unrepresented adults. Themes described by participants were: (1) prioritizing autonomy; (2) varying safety thresholds; (3) distributing resources fairly; and (4) taking a moral toll on stakeholders. In conclusion, all stakeholders identified ethical challenges in caring for unrepresented adults. An applied ethical framework that takes these dilemmas into account could improve ethical practice for unrepresented adults and lessen the emotional toll on stakeholders. J Am Geriatr Soc 67:1724-1729, 2019.

Innovation in care for individuals with cognitive impairment: Can reimbursement policy spread best practices?

There is now an unprecedented opportunity to improve the care of the over 5 million people who are living with Alzheimer's disease and related dementias and many more with cognitive impairment due to brain injury, systemic diseases, and other causes. The introduction of a new Medicare care planning benefit-long sought openly by advocacy organizations and clinicians and badly needed by patients and families-could greatly improve health care quality, but only if widely and fully implemented. We describe the components of this new benefit and its promise of better clinical care, as well as its potential to create a new platform for clinical and health outcomes research. We highlight external factors-and some that are internal to the benefit structure itself-that challenge the full realization of its value, and we call for broad public and professional engagement to ensure that it will not fail.

Development of an adaptive, personalized, and scalable dementia care program: Early findings from the Care Ecosystem.

Katherine Possin and colleagues report on the implementation, development, and early findings of the Care Ecosystem, an adaptive, personalized, and scalable dementia care program.

Hospitalization-Associated Disability in Adults Admitted to a Safety-Net Hospital.

BACKGROUND: Little is known about hospitalization-associated disability (HAD) in older adults who receive care in safety-net hospitals. OBJECTIVES: To describe HAD and to examine its association with age in adults aged 55 and older hospitalized in a safety-net hospital. DESIGN: Secondary post hoc analysis of a prospective cohort from a discharge intervention trial, the Support from Hospital to Home for Elders. SETTING: Medicine, cardiology, and neurology inpatient services of San Francisco General Hospital, a safety-net hospital. PARTICIPANTS: A total of 583 participants 55 and older who spoke English, Spanish, or Chinese. We determined the incidence of HAD 30 days post-hospitalization and ORs for HAD by age group. MEASUREMENTS: The outcome measure was death or HAD at 30 days after hospital discharge. HAD is defined as a new or additional disability in one or more activities of daily living (ADL) that is present at hospital discharge compared to baseline. Participants' functional status at baseline (2 weeks prior to admission) and 30 days post-discharge was ascertained by self-report of ADL function. RESULTS: Many participants (75.3 %) were functionally independent at baseline. By age group, HAD occurred as follows: 27.4 % in ages 55-59, 22.2 % in ages 60-64, 17.4 % in ages 65-69, 30.3 % in ages 70-79, and 61.7 % in ages 80 or older. Compared to the youngest group, only the adjusted OR for HAD in adults over 80 was significant, at 2.45 (95 % CI 1.17, 5.15). CONCLUSIONS: In adults at a safety-net hospital, HAD occurred in similar proportions among adults aged 55-59 and those aged 70-79, and was highest in the oldest adults, aged ≥ 80. In safety-net hospitals, interventions to reduce HAD among patients 70 years and older should consider expanding age criteria to adults as young as 55.

Journalists, district attorneys and researchers: why IRBs should get in the middle.

BACKGROUND: Federal regulations in the United States have shaped Institutional Review Boards (IRBs) to focus on protecting individual human subjects. Health services research studies focusing on healthcare institutions such as hospitals or clinics do not have individual human subjects. Since U.S. federal regulations are silent on what type of review, if any, these studies require, different IRBs may approach similar studies differently, resulting in undesirable variation in the review of studies focusing on healthcare institutions. Further, although these studies do not focus on individual human subjects, they may pose risks to participating institutions, as well as individuals who work at those institutions, if identifying information becomes public. DISCUSSION: Using two recent health services research studies conducted in the U.S. as examples, we discuss variations in the level of IRB oversight for studies focusing on institutions rather than individual human subjects. We highlight how lack of IRB guidance poses challenges for researchers who wish to both protect their subjects and work appropriately with the public, journalists or the legal system in the U.S. Competing interests include the public's interest in transparency, the researcher's interest in their science, and the research participants' interests in confidentiality. Potential solutions that may help guide health services researchers to balance these competing interests include: 1) creating consensus guidelines and standard practices that address confidentiality risk to healthcare institutions and their employees; and 2) expanding the IRB role to conduct a streamlined review of health services research studies focusing on healthcare institutions to balance the competing interest of stakeholders on a case-by-case basis. SUMMARY: For health services research studies focusing on healthcare institutions, we outline the competing interests of researchers, healthcare institutions and the public. We propose solutions to decrease undesirable variations in the review of these studies.