Older adults with overlapping caregiving responsibilities and care needs in a U.S. national community-based sample.

BACKGROUND: Community-dwelling older adults often serve as caregivers despite having their own health concerns and disabilities, yet little is known about their care needs. METHODS: Cross-sectional analysis including community-dwelling U.S. adults over age 60 years who self-identified as caregivers in the National Social Life, Health, and Aging Project in 2015-2016. Caregiving was defined by self-reported assistance of another adult with day-to-day activities due to age or disability; overlapping care-receiving was defined by simultaneous receipt of help for at least one activity of daily living (ADL) or independent ADL (IADL). Multivariable logistic regression models examined attributes associated with overlapping care-receiving among older caregivers, adjusted for caregiver characteristics (age, gender, spousal caregiving, self-reported physical and mental health, cognitive function, and household assets). RESULTS: Among the 444 caregivers, the mean age was 67.8 (SD 0.29) years, 55.8% were women, 78.1% were non-Hispanic White, 54.7% self-identified as primary caregivers, and 30.7% were caring for a spouse. Thirty-two percent of older caregivers were caregiving while themselves receiving assistance with at least one ADL or IADL. Thirty-four percent of caregivers reported <$50,000 in household assets and 10% did not answer the question. Given prior research that supports that most nonrespondents fall into the low-income group, subjects were combined. Analyses with and without nonrespondents did not substantially change the results. Compared to caregivers who were not simultaneously receiving care, caregivers reporting overlapping care-receiving had greater odds of being older (AOR 1.30, 95% confidence interval [CI] [1.14, 1.48] per each 5-year age increase), caregiving for a spouse (AOR 1.93, 95% CI [1.20, 3.13]), having limited household assets (AOR 2.10, 95% CI [1.17, 3.80], for <$50,000 compared to ≥$50,000), and having poor or fair self-reported physical health (AOR 2.94, 95% CI [1.43, 6.02]). CONCLUSIONS: Over 30% of older adult caregivers report simultaneously receiving care for their own daily activities. Older caregivers who receive care are more likely to be older, spousal caregivers, and have limited assets and worse physical health. Targeted strategies are needed to support older caregivers who are uniquely vulnerable due to their overlapping care needs.

NegotiAge: Development and pilot testing of an artificial intelligence-based family caregiver negotiation program.

BACKGROUND: Family caregivers of people with Alzheimer's disease experience conflicts as they navigate health care but lack training to resolve these disputes. We sought to develop and pilot test an artificial-intelligence negotiation training program, NegotiAge, for family caregivers. METHODS: We convened negotiation experts, a geriatrician, a social worker, and community-based family caregivers. Content matter experts created short videos to teach negotiation skills. Caregivers generated dialogue surrounding conflicts. Computer scientists utilized the dialogue with the Interactive Arbitration Guide Online (IAGO) platform to develop avatar-based agents (e.g., sibling, older adult, physician) for caregivers to practice negotiating. Pilot testing was conducted with family caregivers to assess usability (USE) and satisfaction (open-ended questions with thematic analysis). RESULTS: Development: With NegotiAge, caregivers progress through didactic material, then receive scenarios to negotiate (e.g., physician recommends gastric tube, sibling disagrees with home support, older adult refusing support). Caregivers negotiate in real-time with avatars who are designed to act like humans, including emotional tactics and irrational behaviors. Caregivers send/receive offers, using tactics until either mutual agreement or time expires. Immediate feedback is generated for the user to improve skills training. Pilot testing: Family caregivers (n = 12) completed the program and survey. USE questionnaire (Likert scale 1-7) subset scores revealed: (1) Useful-Mean 5.69 (SD 0.76); (2) Ease-Mean 5.24 (SD 0.96); (3) Learn-Mean 5.69 (SD 0.74); (4) Satisfy-Mean 5.62 (SD 1.10). Items that received over 80% agreements were: It helps me be more effective; It helps me be more productive; It is useful; It gives me more control over the activities in my life; It makes the things I want to accomplish easier to get done. Participants were highly satisfied and found NegotiAge fun to use (91.7%), with 100% who would recommend it to a friend. CONCLUSION: NegotiAge is an Artificial-Intelligent Caregiver Negotiation Program, that is usable and feasible for family caregivers to become familiar with negotiating conflicts commonly seen in health care.

Having a Say Matters: The Association Between Home Health Aides' Voice and Job Satisfaction.

Purpose: Despite a rapidly growing need for home health aides (HHAs), turnover rates are high. While this is driven in large part by the demanding nature of their work and low wages, another factor may be that HHAs are often not considered part of the medical team which can leave them feeling unheard by other healthcare professionals. We sought to determine whether this concept, or HHAs' perceived voice, was associated with job satisfaction. Methods and Design: This cross-sectional survey of English- and Spanish-speaking HHAs caring for adults with heart failure (HF) was conducted from June 2020 to July 2021 in New York, NY in partnership with a labor management fund of a large healthcare union that provides benefits and training to HHAs. Voice was assessed with a validated 5-item scale (total score range 5 to 25). Job Satisfaction was assessed with the 5-item Work Domain Satisfaction Scale (total score range 5 to 35). Multivariable linear regression analysis was used to examine the association between voice and job satisfaction. Results: A total of 413 HHAs employed by 56 unique home care agencies completed the survey; they had a mean age of 48 years, 97.6% were female, 60.2% were Hispanic, and they worked as HHAs for a median of 10 years (IQR, 5, 17). They had a median Voice score of 18 (IQR 15-20) and mean job satisfaction score of 26.4 (SD 5.6). Higher levels of voice (1.75 [0.46-3.04]) were associated with greater job satisfaction (p=0.008). When adjusting for Race/Ethnicity, HF training, and HF knowledge, the association between Voice and job satisfaction remained significant ((1.77 [0.40-3.13]). Conclusion: HHAs with a voice in the care of their patients experienced greater job satisfaction. Voice may be an important target for interventions aiming to improve HHAs' retention in the field.

Caregiver support, burden, and long-term planning among caregivers of individuals with intellectual and developmental disabilities: A cross-sectional study.

BACKGROUND: Long-term care planning (LTCP) is critical for individuals with intellectual/developmental disabilities. Objectives of this study were to investigate progression through LTCP, and associations between social support and: (1) LTCP and (2) burden among family caregivers. METHODS: A cross-sectional survey was distributed to caregivers of individuals with intellectual/developmental disabilities in NY, OH, PA, and TX, exploring demographics, supports, burden, and LTCP behaviours. Bivariate and linear multiple regression analyses were used to investigate study objectives. RESULTS: Caregivers (n = 405) were predominantly parents, female, non-Hispanic, and in the 'learning to plan' stage of LTCP. Caregiver-identified social support was associated with further progression in LTCP (p = .020) and lower caregiver burden (p < .001). CONCLUSION: Social support was associated with further progression in LTCP, and associated with less burden, however fewer than 40% of caregivers reported having social support. Ongoing exploration of emotional/social needs of caregivers is necessary to better support these families.

Transforming a Negotiation Framework to Resolve Conflicts among Older Adults and Family Caregivers.

BACKGROUND: Family caregivers of older people with Alzheimer's dementia (PWD) often need to advocate and resolve health-related conflicts (e.g., determining treatment necessity, billing errors, and home health extensions). As they deal with these health system conflicts, family caregivers experience unnecessary frustration, anxiety, and stress. The goal of this research was to apply a negotiation framework to resolve real-world family caregiver-older adult conflicts. METHODS: We convened an interdisciplinary team of national community-based family caregivers, social workers, geriatricians, and negotiation experts (n = 9; Illinois, Florida, New York, and California) to examine the applicability of negotiation and conflict management frameworks to three older adult-caregiver conflicts (i.e., caregiver-older adult, caregiver-provider, and caregiver-caregiver). The panel of caregivers provided scenarios and dialogue describing conflicts they experienced in these three settings. A qualitative analysis was then performed grouping the responses into a framework matrix. RESULTS: Upon presenting the three conflicts to the caregivers, 96 responses (caregiver-senior), 75 responses (caregiver-caregiver), and 80 responses (caregiver-provider) were generated. A thematic analysis showed that the statements and responses fit the interest-rights-power (IRP) negotiation framework. DISCUSSION: The interests-rights-power (IRP) framework, used in business negotiations, provided insight into how caregivers experienced conflict with older adults, providers, and other caregivers. Future research is needed to examine applying the IRP framework in the training of caregivers of older people with Alzheimer's dementia.

Dissemination of a long-term care planning tool, PlanYourLifespan.org, through community-based stakeholder leaders.

BACKGROUND: Geriatrics research generally cumulates in academic journal publications, with variable diffusion to patients and communities. PlanYourLifespan.org is a free, evidence-based tool that assists older adults, and their loved ones, to better understand and plan for their long-term support needs. There is a need to effectively disseminate geriatrics research, such as PlanYourLifespan.org, to communities that may directly benefit from this research. OBJECTIVE: To leverage community-based stakeholder leaders, utilizing a train-the-trainer program, to disseminate PlanYourLifespan.org and evaluate the extent of the dissemination. METHODS: Using a train-the-trainer strategy, community stakeholder leaders from the original study paired up with newly recruited community stakeholder leaders. New community stakeholder leaders were trained on dissemination, using a "how-to-disseminate" web-based toolkit-developed as part of this project. Newly trained community stakeholder leaders subsequently trained additional community stakeholder leaders who conducted and tracked dissemination activities in their communities. Google Analytics tracked newly created PlanYourLifespan.org accounts, login sessions, and daily website visitors. RESULTS: Five newly trained community stakeholder leaders disseminated PlanYourLifespan.org over a three-month period. Cumulatively, on the day of the dissemination activity, there were 11,361 PlanYourLifespan.org log-ins (average: 378.7 log-ins/activity day), 89,068 log-ins (average: 2969 log-ins/activity week) one-week after the activity, and 319,154 log-ins (average: 10,638 log-ins/activity month) one month after the dissemination activity. Approximately 9.4 new PlanYourLifespan.org accounts were created one-week post dissemination activity and over 1100 new accounts in the one-month period thereafter. CONCLUSIONS: Wide dissemination of PlanYourLifespan.org occurred by leveraging a train-the-trainer approach with community stakeholder leaders. Researchers should consider collaborating early on with community stakeholders to meaningfully disseminate results.

Aspects of cognition that impact aging-in-place and long-term care planning.

BACKGROUND: Older adults frequently defer decisions about their aging-in-place/long-term care (AIP-LTC) needs. As a result, when older adults experience worsening Alzheimer's disease, family members/friends become surrogate decision makers. We sought to understand what aspects of cognition impact older adult AIP-LTC planning. METHODS: As part of the PlanYourLifespan (PYL)-LitCog study, we longitudinally examined AIP-LTC decision-making among a cohort (LitCog) of community-based older adults (65 years and older) recruited from hospital-associated primary care clinics in Chicago, Illinois, with extensive cognitive testing. PlanYourLifespan.org (PYL) is an evidence-based online intervention that facilitates AIP-LTC planning. Subjects underwent baseline testing, received the PYL online intervention, and then were surveyed at 1, 6, and 12 months about AIP-LTC decision-making. Cross-sectional logistic regression analysis was conducted examining cognitive variables that impacted AIP-LTC decision-making. RESULTS: Of the 293 older adults interviewed (mean age 73.0 years, 40.4% non-White), subjects were more likely to have made AIP-LTC decisions if they had adequate inductive reasoning (ETS letter sets total-OR = 1.14 (95% CI = 1.03-1.27; p < 0.05)) and adequate working memory (size judgment span total-OR = 1.76 (95% CI = 1.13-2.73; p < 0.05)). There were no differences in decision-making observed in verbal abilities, long-term memory, or processing speed. All analyses were adjusted for participant gender, race, age, and decision-making response at baseline. CONCLUSION: Inductive reasoning and working memory are critical to AIP-LTC decision-making. Screening routinely for these specific cognitive domains is important in targeting and helping older adults prepare in time for their future AIP-LTC needs.

Optimizing voice-controlled intelligent personal assistants for use by home-bound older adults.

INTRODUCTION: Social isolation is a major public health concern, as isolated individuals are at increased risk of poor overall health, as well as at increased risk of unhealthy behaviors. During the COVID-19 pandemic, social distancing strategies have led to increased rates of loneliness and social isolation. There is a clear need for strategies to mitigate the effects of social isolation and loneliness on the mental and physical health of older adults. In this study, we sought to better understand how voice-controlled intelligent personal assistants (VIPAs) could be leveraged to reduce loneliness and social isolation among home-bound older adults. METHODS: Patients and geriatric experts were recruited to use VIPA devices (Google Home) in their homes for 4 weeks and then provide feedback. No prior training was provided. Geriatric experts were recruited via email solicitation from the Northwestern Medicine Geriatrics Clinic, and patients were solicited directly from geriatric primary care physicians. The investigators used qualitative analysis to identify codes and overarching themes. RESULTS: A total of 288 comments were received from 16 participants. Eight major themes were identified: Administrative, Companionship, Home Control, Education, Emergencies, Entertainment, Health and Well-Being, and Reminders. DISCUSSION: Results demonstrate that VIPAs can be useful across multiple domains and potentially play a role in providing physical, social, and cognitive stimulation to home-bound older adults. VIPAs have a wide range of functionality, many of which could be implemented to focus on common geriatric syndromes and may ultimately be a tool to help mitigate social isolation and the consequential loneliness.

Development and evaluation of a simulation-based mastery learning maintenance of certification course.

BACKGROUND/OBJECTIVES: To develop and evaluate a post-acute care simulation-based mastery learning (SBML) continuing medical education (CME)/maintenance of certification (MOC) procedure course. DESIGN: Pretest-posttest study of the SBML intervention. SETTING: A 2-day post-acute care procedures course. PARTICIPANTS: Sixteen practicing clinicians (5 physicians,11 advanced practice providers). Participants engaged in a skills pretest on knee aspiration/injection, gastrostomy tube removal/replacement, tracheostomy tube exchange, and basic suturing using a checklist created for each procedure. Participants received a didactic on each procedure followed by deliberate practice with feedback. Using the same checklists, participants completed a skills posttest and were required to meet a minimum passing standard (MPS) to obtain CME/MOC credit. MEASUREMENTS: The MPS for each skills checklist was determined by a multidisciplinary panel of 11 experts. Participants completed surveys on procedure self-confidence and a course evaluation. RESULTS: There was statistically significant improvement between pre- and posttests for all four procedures (p < .001). All participants were able to meet or exceed the MPS for each skill during the 2-day course. Participants' self-confidence regarding each procedure improved significantly (p < .001). CONCLUSION: An SBML training course granting CME/MOC credit for post-acute care providers significantly improves performance of knee aspiration/injection, gastrostomy tube removal/replacement, tracheostomy tube exchange, and basic suturing.

Effects of Improv Training on Older Adults in a Long Term Care Facility.

Adjusting to life in a long term care facility (LTCF) can be challenging for older adults. Improvisation (shortened to improv) is a unique activity that encourages creativity and adaptive cognitive stimulation, through performing short scenes with content suggestions. We sought to assess whether improv training, in the form of a course entitled Humor Doesn't Retire (HDR), could impact patient-centered outcomes in a LTCF. About 15 adults (mean age 83.6 years) living in a LTCF participated in the 8-week HDR course with pre and 1-month post mixed method surveys assessing validated Patient Reported Outcomes Measurement Information System (PROMIS) measures and qualitative open-ended responses. Participants experienced significant improvements in social isolation and perceived stress (p < .05), and trend improvements in positive affect, self-efficacy, and anxiety. Participants described themes of increased attentiveness, becoming more relaxed, increased cognitive stimulation, and improved communication skills. In conclusion, LTCFs may want to consider offering improv training to positively improve the lives of older adult residents.

Negotiation Training for Case Managers to Improve Older Adult Acceptance of Services.

PURPOSE OF STUDY: Older adults frequently choose not to accept recommended social support services (e.g., caregiver and home therapy). Social workers/case managers (SWs/CMs) are often caught in the conflict encouraging patients to accept services, but facing resistance. As a result, older adults may experience unsafe home scenarios and hospital discharges. This research sought to examine whether business school negotiation and dispute resolution (NDR) training could ease these conflicts and potentially improve outcomes for both older adults and SWs/CMs. PRACTICE SETTINGS: Urban health care system (pilot), national case management conference (implementation). METHODOLOGY AND SAMPLE: Researchers tailored the NDR training, offered at graduate business schools, for SWs/CMs. Researchers then pilot tested the NDR training at an urban hospital and implemented it with a national cohort of SWs/CMs at a national case management conference. Participants completed a survey that ascertained conflicts, utility of the NDR program, real-world applicability, and future directions. RESULTS: Eighty-five SW/CM participants, from 22 states, completed the NDR training and survey. Participants reported experiencing conflicts frequently in their workday. Post-NDR training, respondents were very positive about the knowledge gained from the course, specifically noting themes of learning the negotiation basics, tactics (e.g., framing), and integrative strategies (e.g., win-win/expanding to multi-issue discussions). All participants planned to use the NDR skills in the future. IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: The NDR training program can provide SWs/CMs with formal strategies to facilitate older adults' acceptance of social services while balancing patient autonomy. Learning negotiating techniques can be "win-win" for both older adults' home safety and case manager well-being.

Rationale and study design for decision making & implementation of aging-in-place/long term care plans among older adults.

BACKGROUND: Remaining in one's own home and community is a priority for many older adults as they age. Decision-making and planning is critical to ensure successful aging-in-place (AIP), especially when individuals experience age-related changes such as cognitive decline. Objectives: We are testing how decision-making and planning for AIP is impacted by changes in older adults' cognition and function, chronic conditions, social influences, environmental factors and identifying the mediating/moderating interactions between factors. We will also assess whether decision-making and planning for AIP translates into timely adoption of plans and goal concordance between older adults and their surrogate/caregiver decision makers. METHODS: We will conduct a longitudinal single-group interventional clinical trial of community-dwelling older adults who are enrolled in LitCog, (R01AG03611) and expose them to an online intervention, PlanYourLifespan.org, which facilitates decision-making and planning for AIP. Enrolled participants (n = 398) will complete interviews at baseline, one month, and every six months up to 42 months in conjunction with the LitCog study, where cognitive, social, functional, and health literacy data is collected. Additionally, we will collect data on decision-making, resource use, communication of plans, timing of plan implementation, and goal concordance. PROJECTED OUTCOMES: Findings from this study may generate evidence on how age-related changes in older adults may affect decision-making and implementation in relation to AIP as well as the impact of social relationships and support. Ultimately these findings may help shape the design of programs and practices that may improve the lives of older adults and the capacity of institutions to adapt to societal aging and AIP.