Assessing Advance Care Planning Fidelity within the Context of Cognitive Impairment: The SHARE Trial.

CONTEXT: Advance care planning (ACP) is critical among primary care patients with cognitive impairment, but few interventions have tested ACP with this population. OBJECTIVE: Describe the development and evaluation of a tool for assessing ACP fidelity within the context of cognitive impairment, including inter-rater reliability, convergent validity, and overall fidelity using clinical trial data. DESIGN: SHARE is a multicomponent intervention inclusive of facilitated ACP conversations. From a two group, single blind, randomized controlled trial, recorded ACP conversations were rated for fidelity. 145 primary care patients and their care partners were randomized to receive the intervention. Participating patients were 80+ years, had a care partner, and indications of cognitive impairment. An ACP Fidelity Checklist was developed with three subscales: Meeting Set-Up; ACP Meeting Topics; and Communication Skills. Scores were converted to percentages (100% = perfect fidelity) with a target of ≥80% fidelity. A post-ACP meeting report completed by ACP facilitators was used to assess convergent validity of the checklist. Intra-class correlation (ICC) was to evaluate inter-rater reliability. RESULTS: ACP conversations averaged 33.6 minutes (SD = 14.1). The mean fidelity score across N = 91 rated meetings was 82.9%, with a range of 77.3%-90.6% for subscales. 63.7% of meetings achieved a rating of ≥80%. Cognitive function was positively associated with patient participation (rho = .59, P < 0.001). For checklist items, ICC scores ranged from 0.43-0.96. Post-ACP meeting form scores were correlated with the checklist Meeting Topics subscale (r = 0.36, P = 0.001). CONCLUSIONS: Assessing the fidelity of ACP conversations involving primary care patients living with cognitive impairment and their care partners is feasible.

The Role of Place in Person- and Family-Oriented Long-Term Services and Supports.

Policy Points Little attention to date has been directed at examining how the long-term services and supports (LTSS) environmental context affects the health and well-being of older adults with disabilities. We develop a conceptual framework identifying environmental domains that contribute to LTSS use, care quality, and care experiences. We find the LTSS environment is highly associated with person-reported care experiences, but the direction of the relationship varies by domain; increased neighborhood social and economic deprivation are highly associated with experiencing adverse consequences due to unmet need, whereas availability and generosity of the health care and social services delivery environment are inversely associated with participation restrictions in valued activities. Policies targeting local and state-level LTSS-relevant environmental characteristics stand to improve the health and well-being of older adults with disabilities, particularly as it relates to adverse consequences due to unmet need and participation restrictions. CONTEXT: Long-term services and supports (LTSS) in the United States are characterized by their patchwork and unequal nature. The lack of generalizable person-reported information on LTSS care experiences connected to place of community residence has obscured our understanding of inequities and factors that may attenuate them. METHODS: We advance a conceptual framework of LTSS-relevant environmental domains, drawing on newly available data linkages from the 2015 National Health and Aging Trends Study to connect person-reported care experiences with public use spatial data. We assess relationships between LTSS-relevant environmental characteristic domains and person-reported care adverse consequences due to unmet need, participation restrictions, and subjective well-being for 2,411 older adults with disabilities and for key population subgroups by race, dementia, and Medicaid enrollment status. FINDINGS: We find the LTSS environment is highly associated with person-reported care experiences, but the direction of the relationship varies by domain. Measures of neighborhood social and economic deprivation (e.g., poverty, public assistance, social cohesion) are highly associated with experiencing adverse consequences due to unmet care needs. Measures of the health care and social services delivery environment (e.g., Medicaid Home and Community-Based Service Generosity, managed LTSS [MLTSS] presence, average direct care worker wage, availability of paid family leave) are inversely associated with experiencing participation restrictions in valued activities. Select measures of the built and natural environment (e.g., housing affordability) are associated with participation restrictions and lower subjective well-being. Observed relationships between measures of LTSS-relevant environmental characteristics and care experiences were generally held in directionality but were attenuated for key subpopulations. CONCLUSIONS: We present a framework and analyses describing the variable relationships between LTSS-relevant environmental factors and person-reported care experiences. LTSS-relevant environmental characteristics are differentially relevant to the care experiences of older adults with disabilities. Greater attention should be devoted to strengthening state- and community-based policies and practices that support aging in place.

Sharing Health Care Wishes in Primary Care (SHARE) among older adults with possible cognitive impairment in primary care: Study protocol for a randomized controlled trial.

OBJECTIVE: Little is known about effective strategies to improve advance care planning (ACP) for persons with cognitive impairment in primary care, the most common setting of care. We describe a randomized controlled trial to test the efficacy of a multicomponent communication intervention, "Sharing Healthcare Wishes in Primary Care" (SHARE). PARTICIPANTS: Planned enrollment of 248 dyads of adults 80 years and older with possible cognitive impairment and their care partner, from primary care clinics at 2 Mid-Atlantic health systems. METHODS: The treatment protocol encompasses an introductory letter from the clinic; access to a designated facilitator trained in ACP; person-family agenda-setting to align perspectives about the family's role; and print education. The control protocol encompasses minimally enhanced usual care, which includes print education and a blank advance directive. Randomization occurs at the individual dyad-level. Patient and care partner surveys are fielded at baseline, 6-, 12-, and 24- months. Fidelity of interventionist delivery of the protocol is measured through audio-recordings of ACP conversations and post-meeting reports, and by ongoing monitoring and support of interventionists. OUTCOMES: The primary outcome is quality of end-of-life care communication at 6 months; secondary outcomes include ACP process measures. An exploratory aim examines end-of-life care quality and bereaved care partner experiences for patients who die by 24 months. CONCLUSIONS: Caregiver burden, clinician barriers, and impaired decisional capacity amplify the difficulty and importance of ACP discussions in the context of cognitive impairment: this intervention will comprehensively examine communication processes for this special subpopulation in a key setting of primary care. REGISTRATION: ClinicalTrials.gov: NCT04593472.

Perceived Barriers and Facilitators of Implementing a Multicomponent Intervention to Improve Communication With Older Adults With and Without Dementia (SHARING Choices) in Primary Care: A Qualitative Study.

INTRODUCTION: Implementing patient- and family-centered communication strategies has proven challenging in primary care, particularly for persons with dementia. To address this, we designed SHARING Choices, a multicomponent intervention combining patient and family partnered agenda setting, electronic portal access, and supports for advance care planning (ACP). This qualitative descriptive study describes factors affecting SHARING Choices implementation within primary care. METHODS: Semi-structured interviews or focus groups with patient/family dyads (family, friends, unpaid caregivers) and primary care stakeholders (clinicians, staff, administrators) elicited perceived barriers and facilitators of SHARING Choices implementation. Field notes and interview transcripts were coded using template analysis along the Consolidated Framework for Implementation Research (CFIR) constructs. Content analysis identified themes not readily categorized within CFIR. RESULTS: About 22 dyads, including 14 with cognitive impairment, and 30 stakeholders participated in the study. Participants were receptive to the SHARING Choices components. Enablers of SHARING Choices included adaptability of the intervention, purposive engagement of family (particularly for patients with dementia), consistency with organizational priorities, and the relative advantage of SHARING Choices compared to current practices. Perceived barriers to implementation included intervention complexity, space constraints, workflow, and ACP hesitancy. The ACP facilitator was perceived as supportive in addressing individual and organizational implementation barriers including patient health and technology literacy and clinician time for ACP discussions. CONCLUSIONS: Patients, family, and primary care clinicians endorsed the objectives and individual components of SHARING Choices. Strategies to enhance adoption were to simplify materials, streamline processes, leverage existing workflows, and embed ACP facilitators within the primary care team.

Using Geographic Information Systems (GIS) for Targeted National Recruitment of Community-Dwelling Caregivers Managing Dementia-Related Behavioral and Psychological Symptoms: A Recruitment Approach for a Randomized Clinical Trial.

Over 16 million caregivers of people living with dementia require support in a range of issues, including self-care, disease education, and guidance for how to manage behavioral and psychological symptoms of dementia (BPSD). Non-pharmacological interventions are needed to address these areas, and online applications have been shown to be safe and effective. To ensure the efficacy of such interventions, racially, ethnically, geographically, and socioeconomically diverse participants must be recruited to increase the generalizability of study outcomes. This protocol paper describes a recruitment plan using Geographic Information Systems (GIS) to reach a representative sample of caregivers across the United States for a national Phase III clinical study. Using publicly available census data from the American Community Survey (ACS), combined with location data for local aging resources such as Area Agencies on Aging (AAA), recruitment will be derived from data analysis conducted in ESRI ArcGIS v10.7.1. Datasets including age, gender, income, and education will be assessed nationally at the county and census tract spatial scale in a nine-step process to develop recruitment priority areas containing high concentrations of eligible participants living in the community. Overall, the current protocol will demonstrate the value of GIS in tailoring targeted outreach strategies to recruit community-dwelling populations through local resource institutions. This novel approach may have far-reaching implications in future recruitment initiatives and help to secure racially/ethnically diverse samples.

A longitudinal evaluation of family caregivers' willingness to pay for an in-home nonpharmacologic intervention for people living with dementia: results from a randomized trial.

OBJECTIVE: To determine the willingness-to-pay (WTP) of family caregivers to learn care strategies for persons living with dementia (PLwD). DESIGN: Randomized clinical trial. SETTING: Community-dwelling PLwD and their caregivers (dyads) in Maryland and Washington, DC. PARTICIPANTS: 250 dyads. INTERVENTION: Tailored Activity Program (TAP) compared to attention control. TAP provides activities tailored to the PLwD and instructs caregivers in their use. MEASUREMENT: At baseline, 3 and 6 months, caregivers were asked their WTP per session for an 8-session 3-month in-home nonpharmacologic intervention to address behavioral symptoms and functional dependence. RESULTS: At baseline, 3 and 6 months, caregivers assigned to TAP were willing to pay $26.10/session (95%CI:$20.42, $33.00), $28.70 (95%CI:$19.73, $39.30), and $22.79 (95%CI: $16.64, $30.09), respectively; attention control caregivers were willing to pay $37.90/session (95%CI: $27.10, $52.02), $30.92 (95%CI: $23.44, $40.94), $27.44 (95%CI: $20.82, $35.34), respectively. The difference in baseline to 3 and 6 months change in WTP between TAP and the attention control was $9.58 (95%CI: -$5.00, $25.47) and $7.15 (95%CI: -$5.72, $21.81). The difference between TAP and attention control in change in the proportion of caregivers willing to pay something from baseline to 3 and 6 months was -12% (95%CI: -28%, -5%) and -7% (95%CI:-25%, -11%), respectively. The difference in change in WTP, among caregivers willing to pay something, between TAP and attention control from baseline to 3 and 6 months was $17.93 (95%CI: $0.22, $38.30) and $11.81 (95%CI: -$2.57, $28.17). CONCLUSIONS: Family caregivers are willing to pay more for an intervention immediately following participation in a program similar to which they were asked to value.

SHARING Choices: A Pilot Study to Engage Family in Advance Care Planning of Older Adults With and Without Cognitive Impairment in the Primary Care Context.

CONTEXT: Few advance care planning (ACP) interventions proactively engage family or address the needs of older adults with and without cognitive impairment in the primary care context. OBJECTIVES: To pilot a multicomponent intervention involving: an introductory letter describing a new clinic initiative and inviting patients to complete a patient-family pre-visit agenda-setting checklist, share their electronic health information with family, and talk about their wishes for future care with a trained ACP facilitator (SHARING Choices). METHODS: SHARING Choices was delivered to 40 patient-family dyads from 3 primary care clinics. Facilitators completed post-ACP reports. Patient and family participants completed baseline and 6-week surveys. RESULTS: Patients were on average 75 years (range 65-90). Family were spouses (85.0%) or adult children (15.0%). At 6 weeks, nearly half of dyads participated in ACP conversations (n = 19) or used the agenda-setting checklist (n = 17), one-third (n = 13) registered family to access the patient's portal account, and most (n = 28) provided the primary care team with a new or previously completed advance directive. Of 12 patients who screened positive for cognitive impairment, 9 completed ACP conversations and 10 provided the clinic with an advance directive. ACP engagement, measured on a 4-point scale, was comparatively lower at baseline and 6 weeks among family (3.05 and 3.19) than patients (3.56 and 3.54). Patients remarked that SHARING Choices clarified communication and preferences while family reported a better understanding of their role in ACP and communication. CONCLUSION: SHARING Choices was acceptable among older adults with and without cognitive impairment and may increase advance directive completion.

National Assessment of Nursing Schools and Nurse Educators Readiness for Radiation Emergencies and Nuclear Events.

Nurses will play a crucial role in responding to a public health emergency resulting from nuclear war or other large-scale release of radiation into the environment and in supporting the National Health Security Strategy. Schools of nursing are ultimately responsible for developing a competent nursing workforce prepared to assess a population's public health emergency needs and respond to these low-frequency but high-impact events. This responsibility includes the provision of specific content and training regarding how to respond and care for patients and communities in the event of a nuclear or radiation emergency. To date, however, there has been a lack of empirical evidence focusing specifically on nursing schools' capacity to prepare nurses for radiation emergencies and nuclear events, as well as perception of risk. This study employed a cross-sectional survey administered to a nationwide sample of nursing school administrators and faculty to assess content, faculty expertise, planning, and perception of risk related to radiation emergencies and nuclear events.

Implications of Geographic Information Systems (GIS) for targeted recruitment of older adults with dementia and their caregivers in the community: A retrospective analysis.

5.5 million Americans are living with Alzheimer's dementia (AD) or related dementias. Developing evidence-based interventions for these people and their caregivers (dyads) is a public health priority, and is highly dependent on recruiting representatives from the community. Precision recruitment methodologies are needed to improve the efficiency of this process. Geographic Information Systems (GIS) offer the potential to determine location trends of an older adult population of people living with dementia in the community and their caregivers. American Community Survey (ACS) 2015 5-year estimates were analyzed at the census tract level in ESRI ArcMap v. 10.5.1. Datasets included summarized estimates of age, gender, income, and education in Maryland. Using a two-step process, geographic regions were identified in ArcMap that contained various combinations of available data variables. These areas were compared to participant locations from a previously completed traditional recruitment effort to determine overlap (Dementia Behavior Study - R01AGO41781). The largest number of existing participants were identified in derived regions defined by combining age, education, gender, and income variables; predicting 184 (79%) of 234 participants regardless of the population density within census tracts. 208 (89%) were identified when matching this variable combination to the highest density census tracts (city/urban), and 66 (28%) in regions with the lowest population density (rural). This study successfully defined specific geographic regions in the state of Maryland that overlapped with a large number of known dementia dyad locations obtained via traditional recruitment efforts. Implications for these findings allow for more targeted recruitment efforts of difficult to recruit populations, and less utilization of resources for doing so.

Dementia Family Caregivers' Willingness to Pay for an In-home Program to Reduce Behavioral Symptoms and Caregiver Stress.

OBJECTIVES: Our objective was to determine whether family caregivers of people with dementia (PwD) are willing to pay for an in-home intervention that provides strategies to manage behavioral symptoms and caregiver stress and to identify predictors of willingness-to-pay (WTP). METHODS: During baseline interviews of a randomized trial and before treatment assignment, caregivers were asked how much they were willing to pay per session for an eight-session program over 3 months. We stratified the sample into those who refused to provide a WTP, those willing to pay $US0, and those willing to pay > $US0. We used a two-part model, controlling for demographic characteristics, to predict adjusted mean WTP and to examine associations between WTP, clinical features (cognition, function, behavioral symptoms), and time spent assisting PwD with daily activities. First, we used logistic regression to model the probability a caregiver was willing to pay > $US0. Second, we used a generalized linear model (log link and Gamma distribution) to estimate the amount caregivers were willing to pay conditional on WTP > $US0. RESULTS: Of 250 dyads enrolled, 226 (90%) had complete data and were included in our analyses. Of 226 dyads, 26 (11%) refused to provide a WTP value, 72 (32%) were willing to pay $US0, and 128 (57%) were willing to pay > $US0. In the combined model, mean adjusted WTP was $US36.00 (95% confidence interval [CI] 26.72-45.27) per session. Clinical features were not significantly associated with WTP. One additional hour providing PwD assistance was associated with a $US1.64 (95% CI 0.23-3.04) increase in WTP per session. CONCLUSION: As caregivers spend more time assisting with daily activities, they are willing to pay more for a supportive program. CLINICAL TRIAL REGISTRATION NUMBER: NCT01892579.

Determinants of behavioral and psychological symptoms of dementia: A scoping review of the evidence.

BACKGROUND: Behavioral and psychological symptoms of dementia (BPSD) are prevalent in people with neurodegenerative diseases. PURPOSE: In this scoping review the Kales, Gitlin and Lykestos framework is used to answer the question: What high quality evidence exists for the patient, caregiver and environmental determinants of five specific BPSD: aggression, agitation, apathy, depression and psychosis? METHOD: An a priori review protocol was developed; 692 of 6013 articles retrieved in the search were deemed eligible for review. Gough's Weight of Evidence Framework and the Cochrane Collaboration's tool for assessing risk of bias were used. The findings from 56 high quality/low bias articles are summarized. DISCUSSION: Each symptom had its own set of determinants, but many were common across several symptoms: neurodegeneration, type of dementia, severity of cognitive impairments, and declining functional abilities, and to a lesser extent, caregiver burden and communication. CONCLUSION: Research and policy implications are relevant to the National Plan to Address Alzheimer's Disease.

Marijuana Use Is Associated with Behavioral Approach and Depressive Symptoms in Adolescents and Emerging Adults.

BACKGROUND: Repeated CB1 binding due to THC results in downregulation of the endocannabinoid system in cortex and limbic regions, perhaps disrupting frontolimbic functioning. This is particularly a concern in young adults who are still undergoing neurodevelopment in frontal and limbic regions. Such disruptions may be linked to increased depressive symptoms, anxiety symptoms, and executive dysfunction, and decreased behavioral approach. OBJECTIVES: Here we examine the influence of young adult marijuana use on anxiety, depressive symptoms, behavioral approach, and executive dysfunction. The influence of alcohol and gender were also assessed. METHODS: 84 participants (42 MJ, 42 controls) aged 18-25 were balanced for gender (39 F). Exclusion criteria included: MRI contraindications, left handed, comorbid Axis-I disorders, major medical or neurologic disorders, prenatal issues, or prenatal alcohol/illicit drug exposure, or excessive other drug use. Participants completed the FrsBE, BIS/BAS, State-Trait Anxiety Inventory (State), and BDI-II. Multiple regressions were run to predict anxiety, depressive symptoms, behavioral approach, and executive dysfunction from MJ group status, past year alcohol use, gender, and MJ*gender interactions, controlling for cotinine and ecstasy. RESULTS: MJ group predicted increased depressive symptoms (p =.049). Decreased fun-seeking (p =.04), reward response (p =.01), and BAS total (p =.01) were predicted by MJ group. Gender predicted decreased reward responsiveness in females (p =.049) and decreased BIS in females (p =.03). Female marijuana users had increased anxiety symptoms (p =.04) and increased disinhibition (p =.04). Increased cotinine predicted increased drive (p =.046), reward responsiveness (p =.008) and BAS Total (p =.02). Apathy and Executive Dysfunction were not predicted by any measures. All results had small effect sizes. CONCLUSIONS/IMPORTANCE: Depressive symptoms were greater in MJ users, while behavioral approach was decreased. Cotinine levels predicted increased behavioral approach. Female MJ users also had greater anxiety and disinhibition. In sum, these findings suggest sub-clinical threshold deficits related to regular marijuana use that are indicative of a need to prevent marijuana use in adolescents and young adults.