Goal setting among older adults starting mobile health cardiac rehabilitation in the RESILIENT trial.

BACKGROUND: There is growing recognition that healthcare should align with individuals' health priorities; however, these priorities remain undefined, especially among older adults. The Rehabilitation Using Mobile Health for Older Adults with Ischemic Heart Disease in the Home Setting (RESILIENT) trial, designed to test the efficacy of mobile health cardiac rehabilitation (mHealth-CR) in an older cohort, also measures the attainment of participant-defined health outcome goals as a prespecified secondary endpoint. This study aimed to characterize the health priorities of older adults with ischemic heart disease (IHD) using goal attainment scaling-a technique for measuring individualized goal achievement-in a sample of 100 RESILIENT participants. METHODS: The ongoing RESILIENT trial randomizes patients aged ≥65 years with IHD (defined as hospitalization for acute coronary syndrome and/or coronary revascularization), to receive mHealth-CR or usual care. For the current study, we qualitatively coded baseline goal attainment scales from randomly selected batches of 20 participants to identify participants' cardiac rehabilitation outcome goals and their perceptions of barriers and action plans for goal attainment. We used a deductive framework (i.e., 4 value categories from Patient Priorities Care) and inductive approaches to code and analyze interviews until thematic saturation. RESULTS: This sample of 100 older adults set diverse health outcome goals. Most (54.6%) prioritized physical activity, fewer (17.1%) identified symptom management, fewer still (13.7%) prioritized health metrics, mostly comprised of weight loss goals (10.3%), and the fewest (<4%) were related to clinical metrics such as reducing cholesterol or preventing hospital readmission. Participants anticipated extrinsic (access to places to exercise, time) and intrinsic (non-cardiac pain, motivation) barriers. Action plans detailed strategies for exercise, motivation, accountability, and overcoming time constraints. CONCLUSIONS: Using goal attainment scaling, we elicited specific and measurable goals among older adults with IHD beginning cardiac rehabilitation. Priorities were predominantly functional, diverging from clinical metrics emphasized by clinicians and healthcare systems.

An age-friendly approach to primary care in an academic health system.

BACKGROUND: Age-friendly care, addressing what matters most, medications, mentation, and mobility, is a successful model for improving older adult care. We describe the initial outcomes of age-friendly care implementation in five primary care clinics in an academic health system. METHODS: In partnership with a regional quality improvement (QI) organization, we used practice facilitation to implement age-friendly care from July 2020 to June 2023. Clinic workflows and electronic health record (EHR) templates were modified to capture six QI measures for patients ≥65 years: Documenting what matters most to patients Advance care planning (ACP) Annual cognitive screening Caregiver referral to dementia community resources Fall-risk screening Co-prescription of opioid and sedative-hypnotic drugs Providers were alerted if patients had positive screens and given support tools for clinical decision-making. QI measures from January-June 2023 were compared to the year prior to implementation. Providers and staff were interviewed about implementation barriers and facilitators. RESULTS: All six measures improved in Geriatrics and and other clinics showed improvement in ACP and cognitive screening. All clinics had high fall-risk screening rates (≥85%). The least improved measure was co-prescription of opioids and sedative-hypnotics with co-prescription rates ranging from 7% to 39%. Implementation hinged on leadership prioritization, practice facilitator guidance, clinical team buy-in, EHR functionality, and clinical performance review. Three clinics received Age-Friendly Health System recognition. CONCLUSIONS: A QI approach using practice facilitation and EHR templates improved some but not all age-friendly care measures. Future interventions will focus on training in high-risk medication tapering and elicitation of health goals.

Relationship of POLST to Hospitalization and ICU Care Among Nursing Home Residents in California.

BACKGROUND: Physician Orders for Life Sustaining Treatment (POLST) document instructions for intensity of care based upon patient care preferences. POLST forms generally reflect patients' wishes and dictate subsequent medical care, but it is not known how POLST use and content among nursing home residents is associated with inpatient utilization across a large population. OBJECTIVE: Evaluate the relationship between POLST use and content with hospital utilization among nursing home residents in California. DESIGN: Retrospective cohort study using the Minimum Data Set linked to California Section S (POLST documentation), the Medicare Beneficiary Summary File, and Medicare line item claims. PATIENTS: California nursing home residents with Medicare fee-for-service insurance, 2011-2016. MAIN MEASURES: Hospitalization, days in the hospital, and days in the intensive care unit (ICU) after adjustment for resident and nursing home characteristics. KEY RESULTS: The 1,112,834 residents had a completed and signed (valid) POLST containing orders for CPR with Full treatment 29.6% of resident-time (in person-years) and a DNR order with Selective treatment or Comfort care 27.1% of resident-time. Unsigned POLSTs accounted for 11.3% of resident-time. Residents experienced 14 hospitalizations and a mean of 120 hospital days and 37 ICU days per 100 person-years. Residents with a POLST indicating CPR Full treatment had utilization nearly identical to residents without a POLST. A gradient of decreased utilization was related to lower intensity of care orders. Compared to residents without a POLST, residents with a POLST indicating DNR Comfort care spent 56 fewer days in the hospital and 22 fewer days in the ICU per 100 person-years. Unsigned POLST had a weaker and less consistent relationship with hospital utilization. CONCLUSIONS: Among California NH residents, there is a direct relationship between intensity of care preferences in POLST and hospital utilization. These findings emphasize the importance of a valid POLST capturing informed preferences for nursing home residents.

Changes over time in POLST use and content by race and ethnicity among California nursing home residents.

BACKGROUND: Physician Orders for Life-Sustaining Treatment (POLST) are commonly used for nursing home (NH) residents. Treatment orders differ across race and ethnicity, presumably related to cultural and socioeconomic variation and levels of access to care and trust. Because national efforts focus on addressing the underpinnings of racial and ethnic differences in treatment (i.e., access to care and trust), we describe POLST use and content by race and ethnicity. METHODS: California requires NHs to document POLST completion and content in the Minimum Data Set. We describe POLST completion and content for all California NH residents from 2011 to 2016 (N = 1,120,376). Adjusting for resident characteristics, we compared changes in completion rate and differences by race and ethnicity in POLST content-orders for cardiopulmonary resuscitation (CPR), do not resuscitate (DNR), CPR with full treatment, DNR with selective treatment or comfort orders, and if unsigned. RESULTS: POLST completion increased across all racial and ethnic groups from 2011 to 2016; by 2016, NH residents had a POLST two-thirds or more of the time. In 2011, Black residents had a POLST with a CPR order 30.4% of the time, Hispanic residents 25.6%, and White residents 19.7%. By 2016, this grew to 42.5%, 38.2%, and 28.1%, respectively, with Black and Hispanic residents demonstrating larger increases than White residents (p < 0.001). Increases over time in POLST with CPR and full treatment were greater for Black and Hispanic residents compared to White residents. The increase in POLST with DNR and DNR with Selective treatment and Comfort orders was greater for White compared to Black patients (p < 0.001). Unsigned POLST with CPR and DNR orders decreased across all racial and ethnic groups. CONCLUSIONS: Racial and ethnic differences in POLST intensity of care orders increased between 2011 and 2016 suggesting that efforts to mitigate factors underlying differences were ineffective. Studies of newer POLST data are imperative.

Training Community Health Workers to Address Disparities in Dementia Care: A Case Study From Oklahoma With National Implications.

The projected increase of dementia in the diverse aging US population calls for a well-prepared public health workforce. Community health workers (CHWs) can address dementia in culturally appropriate ways. Collaborating with stakeholders, we developed a train-the-trainer curriculum for CHWs and used a virtual training platform to test its feasibility with 77 CHWs. Pre-/post-evaluation data demonstrated modestly increased dementia knowledge scores. Training participants valued the resources shared and interacting with peers. Disseminating this training could contribute to closing gaps in dementia care in diverse communities, along with policies supporting CHWs as a workforce that reduces age-related disparities and promotes health equity.

Chronic disease management: why dementia care is different.

With the rise in the population of older adults, the number of individuals living with chronic diseases that need management will increase dramatically. Successful programs have been developed for chronic conditions (eg, heart failure, diabetes, asthma, chronic obstructive pulmonary disease) that use principles of self-management, monitoring, and care coordination. However, because of the effects of dementia on the mind including behavioral complications, the progressive loss of capacity for affected individuals to participate in care or decision-making, the devastating effects on care partners, and the scope of disease management beyond medical issues, the management of dementia is different and demands different approaches. The success of dementia management will depend upon how well the care provided is able to maximize the function, independence, and dignity of the individual living with dementia while minimizing care partner strain and burnout.

Dissemination of a successful dementia care program: Lessons to facilitate spread of innovations.

BACKGROUND: Despite the effectiveness of innovations to improve the care of persons with dementia, there has been limited diffusion of these into widespread clinical practice. We aimed to identify common barriers and address them directly in the initial phase of dissemination of a successful dementia care program. METHODS: Description of and early experience with a dissemination strategy of the UCLA Alzheimer's and Dementia Care Program to health care systems nationwide. We measured site-identified goals for the program and indicators of success, number of adopting sites, and participants in their programs. RESULTS: From January 2019 to December 2021, 80 sites expressed interest in adopting the program, 14 (18%) sites adopted it, and 10 of these sites have begun caring for patients. Another 4 sites have implemented the program as part of a randomized clinical trial. To date, over 1690 persons living with dementia and their caregivers have received Alzheimer's and Dementia Care (ADC) care at 14 adopting sites. Key lessons from the early dissemination efforts include the importance of identifying a strong product champion at the adopting site, creating a business case for adoption, training of clinical staff and adapting the model to fit local cultures and workflow, as well as recognizing the likely long length of time needed for the decision to adopt and implementation process. CONCLUSIONS: Despite many obstacles to dissemination, with local champions and technical assistance, successful innovations in dementia care can be implemented in diverse health systems. The ability to adopt sites to bring the program to full scale and achieve comparable outcomes to the original program remains to be determined.

Dissemination of a successful dementia care program: Lessons from early adopters.

BACKGROUND: Evidence-based models for providing effective and comprehensive care for Alzheimer's disease and related dementias exist but have yet to be successfully implemented at scale. The Alzheimer's and Dementia Care Program (ADC Program) is an effective comprehensive dementia care model that is being disseminated across the United States. This qualitative study examines barriers and facilitators to implementing the model among early adopting sites. METHODS: This study included semi-structured interviews with a total of 21 clinical site leaders and Dementia Care Specialists from a total of 11 sites across the US. Interviews were audio recorded, transcribed, and coded using Dedoose qualitative analysis software. Coding scheme development and data interpretation were informed by Rogers' Diffusion of Innovations framework. RESULTS: Key themes are organized in line with Rogers' framework. These include: the innovation-decision process, implementation and characteristics of the innovation, and sustainability. CONCLUSIONS: Across the three overarching themes presented in this manuscript, the importance of engagement from site leaders, the multifaceted nature of the dementia care specialist role, and the value of technical assistance from qualified experts are apparent. However, for this work to continue to be successful, there needs to be more appropriate payment to cover needed services and a mechanism for supporting comprehensive dementia care over time.

Patient and provider perspectives on using goal attainment scaling in care planning for older adults with complex needs.

BACKGROUND: Assess the feasibility of using goal attainment scaling (GAS) in care planning for older adults with complex needs. GAS is an individualized approach to goal setting and follow up using a quantified scale. To date, little is known about the feasibility of GAS among this population. METHODS: We conducted a qualitative study with a sample of 28 older adults and 23 providers from diverse settings to evaluate the value and challenges of this approach. We conducted semi-structured interviews and iteratively coded and analyzed interview transcripts for themes related to value, challenges, and implementation. RESULTS: Most older adults and providers reported that the GAS approach added value to the care encounter. GAS supported collaboration and patient accountability for their goals, though it could be demotivating to some patients. Some older adults and providers noted that GAS could be confusing and that it was uncomfortable to talk about negative outcomes (i.e., the - 2 and - 1 boxes of the scale). Factors that facilitated implementation included using visual copies of the GAS forms, having an established patient-provider relationship, practicing the approach, and having previous goal-related clinical training. CONCLUSIONS: GAS was feasible to implement across diverse settings, and, despite challenges, both older adults and providers reported that it added value to care planning encounters with the potential to improve delivery of person-centered care. Further efforts to demonstrate the applicability and benefit of this method for older adults are warranted, particularly to address implementation of the approach.

Care preferences in physician orders for life sustaining treatment in California nursing homes.

BACKGROUND: Physician Orders for Life-Sustaining Treatment (POLST) facilitates documentation and transition of patients' life-sustaining treatment orders across care settings. Little is known about patient and facility factors related to care preferences within POLST across a large, diverse nursing home population. We describe the orders within POLST among all nursing home (NH) residents in California from 2011 to 2016. METHODS: California requires NHs to document in the Minimum Data Set whether residents complete a POLST and orders within POLST. Using a serial cross-sectional design for each year, we describe POLST completion and orders for all California NH residents from 2011 to 2016 (N = 1,112,668). We used logistic mixed-effects regression models to estimate POLST completion and resuscitation orders to understand the relationship with resident and facility characteristics, including Centers for Medicare and Medicaid Services (CMS) Nursing Home Compare overall five-star quality rating. RESULTS: POLST completion significantly increased from 2011 to 2016 with most residents having a POLST in 2016 (short-stay:68%; long-stay:81%). Among those with a POLST in 2016, 54% of long-stay and 41% of short-stay residents had a DNR order. Among residents with DNR, >90% had orders for limited medical interventions or comfort measures. Few residents (<6%) had a POLST with contradictory orders. In regression analyses, POLST completion was greater among residents with more functional dependence, but was lower among those with more cognitive impairment. Greater functional and cognitive impairment were associated with DNR orders. Racial and ethnic minorities indicated more aggressive care preferences. Higher CMS five-star facility quality rating was associated with greater POLST completion. CONCLUSIONS: Six years after a state mandate to document POLST completion in NHs, most California NH residents have a POLST, and about half of long-stay residents have orders to limit life-sustaining treatment. Future work should focus on determining the quality of care preference decisions documented in POLST.

Rehabilitation Using Mobile Health for Older Adults With Ischemic Heart Disease in the Home Setting (RESILIENT): Protocol for a Randomized Controlled Trial.

BACKGROUND: Participation in ambulatory cardiac rehabilitation remains low, especially among older adults. Although mobile health cardiac rehabilitation (mHealth-CR) provides a novel opportunity to deliver care, age-specific impairments may limit older adults' uptake, and efficacy data are currently lacking. OBJECTIVE: This study aims to describe the design of the rehabilitation using mobile health for older adults with ischemic heart disease in the home setting (RESILIENT) trial. METHODS: RESILIENT is a multicenter randomized clinical trial that is enrolling patients aged ≥65 years with ischemic heart disease in a 3:1 ratio to either an intervention (mHealth-CR) or control (usual care) arm, with a target sample size of 400 participants. mHealth-CR consists of a commercially available mobile health software platform coupled with weekly exercise therapist sessions to review progress and set new activity goals. The primary outcome is a change in functional mobility (6-minute walk distance), which is measured at baseline and 3 months. Secondary outcomes are health status, goal attainment, hospital readmission, and mortality. Among intervention participants, engagement with the mHealth-CR platform will be analyzed to understand the characteristics that determine different patterns of use (eg, persistent high engagement and declining engagement). RESULTS: As of December 2021, the RESILIENT trial had enrolled 116 participants. Enrollment is projected to continue until October 2023. The trial results are expected to be reported in 2024. CONCLUSIONS: The RESILIENT trial will generate important evidence about the efficacy of mHealth-CR among older adults in multiple domains and characteristics that determine the sustained use of mHealth-CR. These findings will help design future precision medicine approaches to mobile health implementation in older adults. This knowledge is especially important in light of the COVID-19 pandemic that has shifted much of health care to a remote, internet-based setting. TRIAL REGISTRATION: ClinicalTrials.gov NCT03978130; https://clinicaltrials.gov/ct2/show/NCT03978130. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/32163.

Overwhelmed: a Dementia Caregiver Vital Sign.

BACKGROUND: The emotional stress of caring for someone with Alzheimer's disease and related dementias is high and results in adverse effects on caregivers and the persons living with disease. In preliminary work, caregiver reports of regularly feeling "completely overwhelmed" were associated with lack of measurable clinical benefit from a comprehensive dementia care program. OBJECTIVE: To examine the sociodemographic and clinical characteristics of all caregivers who felt overwhelmed at entry into a comprehensive dementia care program, the trajectory of this symptom over 1 year, and its predictive value for 1-year caregiver outcomes. DESIGN: Longitudinal cohort study SETTING: Academic health center PARTICIPANTS: Caregivers of patients enrolled in a comprehensive dementia care program EXPOSURES: Caregiver report of feeling "completely overwhelmed" at baseline MAIN MEASURES: Caregiver report of feeling "completely overwhelmed" at baseline and 1 year, and validated scales of caregiver strain, distress, depressive symptoms, burden, mortality, and long-term nursing home placement KEY RESULTS: Compared to caregivers who were not overwhelmed, overwhelmed caregivers had more distress from behavioral symptoms of the person living with dementia, worse depression scores, and higher composite dementia burden scores at baseline. They also had worse depressive symptoms, strain, and composite burden scores at 1 year, after adjustment for baseline scores. Having an overwhelmed caregiver did not predict long-term nursing home placement or mortality among persons with dementia. CONCLUSIONS: A single question about whether a caregiver is overwhelmed might indicate caregivers who have considerable current and future symptom burden and who may benefit from increased support and resources.

The Association Between Adverse Childhood Experiences and Positive Dementia Screen in American Older Adults.

BACKGROUND: Adverse childhood experiences (ACEs) are linked to higher risk of common conditions driving mortality in adulthood, but little evidence exists on whether ACEs are associated with risk of dementia, a leading cause of death in the USA. OBJECTIVE: To estimate the relationship between US adults' reported ACE scores and a positive screen for dementia. DESIGN: Cross-sectional analysis of a longitudinal, national population-based survey of US older adults. PARTICIPANTS: Survey respondents aged ≥ 65 years with dementia screening data from the 2017 wave of the Panel Study of Income Dynamics (PSID) and ACE scores from the 2014 PSID Childhood Retrospective Circumstances Survey supplement (1,488 eligible participants unweighted). MAIN MEASURES: Dementia screening data was collected in the 2017 wave of the PSID using the 8-item informant interview to differentiate normal cognition and dementia (AD8). Mean change in AD8 score and probability of a positive dementia screen by ACE score were calculated using adjusted regression models with post-estimation. Analyses were stratified by age group. Measures were analyzed in 2020. RESULTS: Complete data were available for 1,223 (82%) participants, with a mean age of 73.4 years (SD 7.1, range 65 to 96 years). Adjusted estimated probability of a positive dementia screen increased with each additional adverse childhood experience reported. Older adults with ≥ 4 ACEs had higher rates of a positive dementia screen (AD8 score ≥ 2 points) compared to those with no ACEs (adjusted rate 26.6% versus 16.3%, p = 0.034). Compared to those with no ACE history, respondents with ≥ 4 ACEs had higher odds of a 1-point increase in AD8 score across all intervals of the AD8 scale (aOR 1.79, 95% CI 1.05-3.04). The ACE-positive dementia screen associations were strongest among those aged 65-75. CONCLUSIONS: Greater exposure to ACEs is independently associated with higher probability of a positive dementia screen in older adulthood.

Participation of persons with dementia and their caregivers in research.

BACKGROUND: The National Institute on Aging, in conjunction with the Department of Health and Human Services as part of the National Alzheimer's Project Act, convened a 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers. This review article addresses research participation by persons living with dementia (PLWD) and their care partners in two different ways: as research participants with input on outcomes studied and as engaged research partners. RESULTS: This article summarizes each of the topics presented at this Summit session, followed by reflection from the session panelists. Lee Jennings examined collection of outcomes directly from PLWD and the potential for individualized outcomes to enhance measurement in intervention trials. Ron Petersen discussed the impact of nomenclature on research and clinical care, and how and why investigators should be mindful of the connection between dementia nomenclature and the conduct of dementia research. Tabassum Majid examined strategies for engagement in research, including specific examples of involving PLWD and their care partners (including staff in assisted living and skilled nursing facilities), and the potential for this research engagement to improve our understanding of interventions in dementia. CONCLUSIONS: Research participation by PLWD and their care partners is evolving. This review summarizes three areas of opportunity and steps for researchers to work with PLWD and their care partners to design and conduct research that enhances knowledge based on what we learn from PLWD and their care partners, and creates knowledge with them.

Utility of a short, telephone-administered version of the Montreal Cognitive Assessment.

BACKGROUND: Because of the COVID-19 pandemic, the ongoing D-CARE pragmatic trial of two models of dementia care management needed to transition to all data collection by telephone. METHODS: For the first 1069 D-CARE participants, we determined the feasibility of administering a short 3-item version of the Montreal Cognitive Assessment (MoCA) to persons with dementia by telephone and examined the correlation with the full 12-item version. RESULTS: The 3-item version could be administered by telephone in approximately 6 min and was highly correlated with the full MoCA (r = 0.78, p < 0.0001). CONCLUSIONS: This brief version of the MoCA was feasible to collect by telephone and could be used as an alternative to the full MoCA, particularly if the purpose of cognitive assessment is characterization of study participants.

Caregiver outcomes of a dementia care program.

The University of California, Los Angeles Alzheimer's and Dementia Care (ADC) program enrolls persons living with dementia (PLWD) and their family caregivers as dyads to work with nurse practitioner dementia care specialists to provide coordinated dementia care. At one year, despite disease progression, overall the PLWDs' behavioral and depressive symptoms improved. In addition, at one-year, overall caregiver depression, strain, and distress related to behavioral symptoms also improved. However, not all dyads enrolled in the ADC program showed improvement in these outcomes. We conducted a mixed qualitative-quantitative study to explore why some participants did not benefit and what could be changed in this and other similar dementia management programs to increase the percentage who benefit. Semi-structured interviews (N=12) or surveys (N=41) were completed with 53 caregivers by telephone, mail and online. Seven areas for potential program improvement were identified from the first 12 interviews. These included: recommendations that did not match caregivers' perceived care needs, barriers to accessing care and utilizing resources, differing care needs based on stage of dementia, needing services not offered by the ADC, needing more education or support, behavioral recommendations that the caregiver felt did not work, and poor rapport of the dementia expert with caregivers. Despite having been identified as having had no clinical benefit from participating in the program, most caregivers (85%) reported that the program was very beneficial or extremely beneficial. Respondents identified the close, longitudinal relationship and access to a dementia care expert as particularly beneficial. This dichotomy highlights that perceived benefit for most of the interviewed caregivers was not captured with the formal instruments used by the program.

Refining a Taxonomy of Goals for Older Adults With Functional Limitations and Their Caregivers to Inform Care Planning.

Purpose: The purpose of the study is to capture goals expressed by older adults with functional limitations and their caregivers. Methods: Through focus groups and interviews, 76 older adults with ≥1 activity of daily living limitation and 28 family/friend caregivers were asked about what mattered most to them and their goals for care. Transcripts were coded using an existing taxonomy. Goals that did not fit the taxonomy were assigned new codes. Results: We identified more than 50 goals in eight domains. Domains included (a) Medical Care; (b) Quality of Life: Physical; (c) Quality of Life: Social and Emotional; (d) Access to Services and Supports; (e) Caregiver Needs and Concerns; (f) End of Life; (g) Independence; and (h) Acceptable Housing. Conclusion: While there is overlap between identified goals and the existing taxonomy, new goals emerged. The goal domains identified could serve as a framework to improve and measure the quality of goal-oriented care for older adults with complex needs.