Abraham A. Brody

Abstract

In the current study, we conducted one-on-one interviews with primary care providers (PCPs) and family care partners (FCPs) and held focus groups with interdis-ciplinary adult day service center (ADSC) staff to understand the perspectives of care providers across community settings regarding early warning signs of acute illnesses in persons living with dementia (PLWD). We used content analysis to analyze qualitative data. Warning signs of acute illnesses in PLWD fell into one of five categories, including new onset changes in (a) physical functions, (b) moods or be-haviors (psychological), (c) social interactions, (d) speech, or (e) appearance. FCPs (n = 11) focused on physical changes, whereas ADSC staff (n = 33) emphasized changes in speech and social interactions in addition to the other categories. Al-though ADSC staff and PCPs (n = 22) focused on changes in functions and moods, each group described these changes differently. ADSC staff possess rich information that can be used to identify acute changes in PLWD and describe a broader range of warning signs compared to PCPs and FCPs. FCPs may benefit from further training in distinguishing between normal disease progression and acute illness. Future research should focus on the implementation of standardized tools across community-based care providers to simplify the identification and reporting of early warning signs in PLWD.

Abstract

Objective: To investigate mental health needs and barriers to seeking mental health support in Medicaid-funded Assisted Living Facility (M-ALF). Design: A multimethod, qualitative-dominant descriptive design using questionnaires and semistructured interviews. Setting and Participants: The study occurred at a M-ALF in the Bronx, New York. A researcher in residence recruited 13 residents (11 Black or African American, 2 Asian) using purposive sampling. Methods: Demographic data and mental health indicators (depression, anxiety, stress, hopelessness) were measured with questionnaires (Center for Epidemiological Studies Depression Scale, Edmonton Symptom Assessment System, Perceived Stress Scale, Beck Hopelessness Survey) and analyzed with descriptive statistics. Interviews were conducted between June and November 2021, transcribed, and analyzed using conventional content analysis. Results: Thirteen residents (mean age: 73.4 years, mean length of stay: 3.5 years; range: 1.0-7.5) completed data collection. Quantitatively indicators of unmet mental health were common. Qualitatively, residents reported barriers to mental health access to address depression, anxiety, and substance use. This was accompanied by concerns surrounding loss of autonomy, mistrust for M-ALF organizational support, isolation and uncertainty about how to receive mental health support. Perspectives were shaped by past experiences with institutional living, serious illness, and being unhoused. Themes and subthemes were (1) mental health need (unmet mental health need, depression, and anxiety and seeking support through non–mental health resources) and (2) barriers to mental health support (dissatisfaction with M-ALF care, perceived threats to autonomy, desire for autonomy that leads to diminished care seeking). Conclusion and Implications: Residents of M-ALF have mental health needs for which care is stymied by loss of autonomy, lack of resources, and the M-ALF environment. Residents use unconventional resources to address needs that may be neither efficient nor effective. Novel mental health interventions and processes are needed to improve mental health access and should prioritize residents’ desire for autonomy and the unique circumstances of living in M-ALF.

Abstract

In order to reduce care partner strain and support aging in place for people living with Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD), adult day centers (ADCs) must manage behavioral and psychological symptoms of dementia (BPSD). The purpose of this paper is to identify person-centered care strategies used by center staff to manage BPSD. Six focus groups with center staff (n = 31) were conducted. Data were analyzed using directed content analysis guided by Kitwood’s conceptual approach to cultivating personhood in dementia care. Themes were identified and organized within Kitwood’s framework. The results demonstrate that staff incorporate evidence-based person-centered approaches to AD/ADRD care that align with Kitwood’s principles of comfort, attachment, inclusion, and identity. Staff individualize their approach to people with AD/ADRD within a group setting. They monitor, engage, socially stimulate, and, when needed, de-stimulate them. Centers are flexible social environments with underrecognized expertise managing BPSD using person-centered approaches.

Abstract

Context: Evaluation of usability and mobile health content is critical for ensuring effective implementation of technology utilizing interventions tailored to the needs of hospice care providers for people living with dementia in community-based settings. Objectives: To evaluate the usability, content, and “readiness to launch” of the Aliviado mobile health app for interdisciplinary team members participating in the Hospice Advanced Dementia Symptom Management and Quality of Life. Methods: Usability of the Aliviado app was assessed in 86 respondents with an adapted IBM Computer Usability Satisfaction Questionnaire following Hospice Advanced Dementia Symptom Management and Quality of Life training and implementation of the mobile app. Results: More than half of users receiving training employed the mobile app in practice. Users reported use as: Daily-6.3%, Weekly-39.6%, monthly-54.2%. The highest measured attributes were usefulness, value, and effectiveness. Over 90% deemed the app “ready to launch” with no or minimal problems. Conclusion: This study shows that a newly-developed mobile app is usable and can be successfully adopted for care of people living with dementia.

Abstract

Importance: Use of hospice has been demonstrated to be cost saving to the Medicare program and yet the extent to which hospice saves money across all payers, including whether it shifts costs to families, is unknown. Objective: To estimate the association between hospice use and total health care costs including family out-of-pocket health care spending. Design, Setting, and Participants: This retrospective cohort study of health care spending in the last 6 months of life used data from the nationally representative Medicare Current Beneficiary Survey (MCBS) between the years 2002 and 2018. Participants were MCBS participants who resided in the community and died between 2002 and 2018. Exposures: Covariate balancing propensity scores were used to compare participants who used hospice (n = 2113) and those who did not (n = 3351), stratified by duration of hospice use. Main Outcomes and Measures: Total health care expenditures were measured across payers (family out-of-pocket, Medicare, Medicare Advantage, Medicaid, private insurance, private health maintenance organizations, Veteran's Administration, and other) and by expenditure type (inpatient care, outpatient care, medical visits, skilled nursing, home health, hospice, durable medical equipment, and prescription drugs). Results: The study population included 5464 decedents (mean age 78.7 years; 48% female) and 38% enrolled with hospice. Total health care expenditures were lower for those who used hospice compared with propensity score weighted non-hospice control participants for the last 3 days of life ($2813 lower; 95% CI, $2396-$3230); last week of life ($6806 lower; 95% CI, $6261-$7350); last 2 weeks of life ($8785 lower; 95% CI, $7971-$9600); last month of life ($11747 lower; 95% CI, $10072-$13422); and last 3 months of life ($10908 lower; 95% CI, $7283-$14533). Family out-of-pocket expenditures were lower for hospice enrollees in the last 3 days of life ($71; 95% CI, $43-$100); last week of life ($216; 95% CI, $175-$256); last 2 weeks of life ($265; 95% CI, $149-$382); and last month of life ($670; 95% CI, $530-$811) compared with those who did not use hospice. Health care savings were associated with reductions in inpatient care. Conclusions and Relevance: In this population-based cohort study of community-dwelling Medicare beneficiaries, hospice enrollment was associated with lower total health care costs for the last 3 days to 3 months of life. Importantly, we found no evidence of cost shifting from Medicare to families related to hospice enrollment. The magnitude of lower out-of-pocket spending to families who enrolled with hospice is meaningful to many Americans, particularly those with lower socioeconomic status.

Abstract

Background and Objectives: Many investigators of Alzheimer's disease and related dementias (AD/ADRD) are unfamiliar with the embedded pragmatic clinical trials (ePCTs) and the indispensable pilot phase preceding ePCTs. This paper provides a much-needed example for such a pilot phase and discusses implementation barriers and additional infrastructure and implementation strategies developed in preparation for a nationwide AD/ADRD ePCT. Research Design and Methods: Two pilot trials were conducted in 2 hospices sequentially to refine and test Aliviado Dementia Care - Hospice Edition, a complex quality improvement intervention for advanced dementia symptom management. Readiness for the subsequent full-scale ePCT was assessed by three milestones: ≥80% training completion rate ("feasibility"), ≥80% posttraining survey respondents indicating intention for practice changes ("applicability"), and at least 1 Aliviado care plan/assessment instrument administered in ≥75% of dementia patients admitted to home hospice within 1-month posttraining ("fidelity"). Results: Participants included 72 interdisciplinary team members and 11 patients with AD/ADRD across the pilots. Feasibility, applicability, and fidelity outcomes (92%, 93%, and 100%, respectively) all surpassed the preestablished milestones (80%, 80%, and 75%). Main implementation challenges were related to hospice staff turnover, integration of the Aliviado toolbox materials within the electronic health records, and hospices' limited research experience and infrastructure. Discussion and Implications: This pilot phase demonstrated feasibility, applicability, and fidelity required to proceed to the full-scale ePCT. Our study findings and discussions of additional infrastructure and implementation strategies developed following the pilot phase can inform researchers and clinicians interested in conducting AD/ADRD-related pilot studies for ePTCs or quality improvement initiatives. Clinical Trials Registration Number: NCT03681119.

Abstract

Background: Hospice care was initially designed for seriously ill individuals with cancer. Thus, the model and clinicians were geared toward caring for this population. Despite the proportion of persons living with dementia (PLWD) receiving hospice care substantially increased over the past 10 years, and their longer lengths of stay, established hospice interventions for this population are scarce. No systematic review has previously evaluated those interventions that do exist. We synthesized hospice intervention studies for PLWD, their families, and hospice professionals by describing the types of interventions, participants, outcomes, and results; assessing study quality; and identifying promising intervention strategies. Methods: A systematic review was conducted using a comprehensive search of five databases through March 2021 and follow-up hand searches. Included studies were peer-reviewed, available in English, and focused on hospice interventions for persons with dementia, and/or care partners, and clinicians. Using pre-determined inclusion and exclusion criteria, data was extracted guided by the Cochrane Checklist, and quality was assessed using a 26-item Consolidated Standards of Reporting Trials (CONSORT) Checklist. Results: The search identified 3235 unique studies in total, of which 10 studies met inclusion criteria. The search revealed three types of interventions: clinical education and training, usual care plus care add-on services, and “other” delivered to 707 participants (mostly clinicians). Five studies included underrepresented racial and ethnic groups. Outcomes measured knowledge and skills, psychosocial and health outcomes, feasibility, and acceptability, with significant improvements in six studies. Study quality was reflective of early-stage research with clinical education and training strategies showing deliberate progression towards real-world efficacy testing. Implications: Hospice interventions for PLWD are sparse and in early-phase research. More research is needed with rigorous designs, diverse samples, and outcomes considering the concordance of care.

Abstract

Americans near the end of life experience high rates of nonbeneficial, burdensome, and preventable hospital-based care. If patients' goals of care are unknown or unclear, they have higher rates of hospitalization at the end of life. The demand for palliative care has grown exponentially because of its impact on quality of life, symptom burden, and resource use, requiring the development of new palliative care models. Nurses' holistic outlook and patient-centered focus make them ideal to deliver telephonic palliative care. This article discusses 4 cases delivered by a nurse-led telephonic palliative care program, a part of the Emergency Medicine Palliative Care Access project, which is a randomized controlled trial comparing outpatient palliative care with nurse-led telephonic case management after an emergency department visit. Telephonic nurses discuss patients' goals, fears, hopes, and concerns regarding their illness and its trajectory that inform decisions for future interventions and treatments. In addition, they share this information with the patients' surrogate decision-makers and clinicians to facilitate care coordination and symptom management. For seriously ill patients, nurses' abilities and expertise, as well as the difficulties of providing care through in-person models of palliative care delivery, make a nurse-led telephonic model an optimal option.