Long-term Care Decisions Research Articles

INDECISIVENESS ABOUT LONG-TERM CARE AMONG OLDER ADULTS

Abstract As cognition and function worsen, older adults often make decisions about living in long term care (LTC) or accepting support in the home. We are longitudinally studying LTC decision-making among a cohort of older adults (65+), who have viewed PlanYourLifespan.org (PYL), a proven-effective LTC planning tool. Subjects were surveyed at baseline (BL), administered PYL, then followed with surveys every 6 months. Participants were asked about LTC decisions in the event of worsening cognition and to describe those decisions. Responses were analyzed using a mixed-methods approach with open-ended responses coded using constant comparative analysis. Of the 293 subjects, mean age was 73 years, 72.7% (213) female, 40.4% (118) under-represented minority. Between baseline-18 months, 66.5% of subjects changed their LTC plans (28.7% one change, 24.23% two changes, 9.2% three changes) At 1 and 6 mos., the proportion of respondents who changed their decision from their prior timepoint was 44%. By 12 mos., this proportion has declined to 39%, and by 18 mos., the proportion further decreased to 34%. Higher indecision (Yes-No-Yes-No) was seen with changes in family caregivers, timing around COVID-19, and personal health. Decision permanence increased at 12-and 18-month time points. LTC decision-making fluctuates; however, over time, the decision-making progresses from circling to more permanence. Understanding LTC decision making is longitudinally important to understand and should be revisited every 6-12 months in clinical practice.

Caregiving across generations: Do older adults with more grandchildren get another bite at the “sandwich” generation?

Understanding the influence of grandchildren on long-term care use is a growing issue. Indeed, many countries, middle-aged adults provide unpaid care for aging family members, often their parents, at home. Although the influence of adult children's availability on their aging parents' caregiving decisions has been widely studied, the influence of grandchildren remains largely unstudied. Parental time allocated to childcare may compete with elder care, necessitating paid home care or transfer to a nursing home. Alternatively, grandparents may provide childcare, increasing incentives to keep grandparents at home. Using data from the Survey of Health, Ageing and Retirement in Europe (75,296 observations from 11 countries covering years 2004–2018), we exploit an instrumental variable strategy to study the effect of grandchildren on grandparents' long-term care decisions, specifically, use of paid home care or transfer to a nursing home. We use the generosity of maternity leave policies in time and across countries as an instrumental variable to identify the effect of the number of grandchildren. We find that the presence of grandchildren significantly increases the likelihood of having grandparents live at home: the probability of paid home care significantly increases while the probability of nursing home admission falls significantly. In conclusion, policies influencing the number of grandchildren in families have an indirect impact on long-term care use trajectories, confirming that family policies and long-term care policies are strongly imbricated and should not be considered separately.

The Canadian Long-Term Care Sector Collapse from COVID-19: Innovations to Support People in the Workforce.

The COVID-19 pandemic rattled Canada's long-term care (LTC) sector by exacerbating the ingrained systemic and structural issues, resulting in tragic consequences for the residents, family members and LTC staff. At the core of LTC's challenges is chronic under-staffing, leading to lower quality of care for residents and higher degrees of moral distress among staff. A rejuvenation of the LTC sector to support its workforce is overdue. A group of diverse and renowned researchers from across Canada set out to implement innovative evidence-informed solutions in various LTC homes. Their findings call for immediate action from policy makers and LTC decision makers.

The Long-Term Survival of Intracranial Hemorrhage Patients Successfully Weaned from Prolonged Mechanical Ventilation.

BackgroundNinety-one intracranial hemorrhage prolonged mechanical ventilation patients were successfully weaned from the ventilator. No article had discussed the factors related to 1-year survival in successfully weaned prolonged mechanical ventilation patients with intracranial hemorrhage. This study aimed to evaluate the factors influencing the one-year survival of successfully weaned intracranial hemorrhage prolonged mechanical ventilation patients. The identification of patients with a poor long-term prognosis could guide long-term care decisions after discharge in such patients.Patients and MethodsWe performed this retrospective study on the respiratory care center of Dalin Tzu Chi hospital and enrolled all successfully weaned intracranial hemorrhage prolonged mechanical ventilation patients between 1 January 2012 and 31 December 2017. We analyzed data including age, gender, comorbidities, intracranial hemorrhage type, spontaneous or traumatic intracranial hemorrhage, location of intracerebral hemorrhage, presence or not of an intraventricular hemorrhage, Glasgow Coma Scale, receipt or not of intracranial hemorrhage surgery, receipt or not of tracheostomy, long-term survival, and end-of-life decisions.ResultsWe had long-term follow-up data on 69 of these successfully weaned intracranial hemorrhage prolonged mechanical ventilation patients. The 1-year survival rate of successfully weaned patients was 43.5%. The factors unrelated to the 1-year survival rate were comorbidities, intracranial hemorrhage type, spontaneous or traumatic intracranial hemorrhage, location of the intracerebral hemorrhage, presence or not of an intraventricular hemorrhage, intracranial hemorrhage surgery, and tracheostomy. Four factors were independently associated with the 1-year survival rate of these patients: Glasgow Coma Scale score at discharge from the respiratory care center, age ≥ 65 years, signed do-not-resuscitate and do-not-intubate orders, and the absence of comorbidity.ConclusionThis study emphasizes an important key factor in terms of the survival of successfully weaned intracranial hemorrhage prolonged mechanical ventilation patients. The patient’s Glasgow Coma Scale score at discharge from the respiratory care center is an important predictor of outcomes. These results can help physician better plan the clinical course for intracranial hemorrhage prolonged mechanical ventilation patients.

The prognostic value of resting-state EEG in acute post-traumatic unresponsive states.

Accurate early prognostication is vital for appropriate long-term care decisions after traumatic brain injury. While measures of resting-state EEG oscillations and their network properties, derived from graph theory, have been shown to provide clinically useful information regarding diagnosis and recovery in patients with chronic disorders of consciousness, little is known about the value of these network measures when calculated from a standard clinical low-density EEG in the acute phase post-injury. To investigate this link, we first validated a set of measures of oscillatory network features between high-density and low-density resting-state EEG in healthy individuals, thus ensuring accurate estimation of underlying cortical function in clinical recordings from patients. Next, we investigated the relationship between these features and the clinical picture and outcome of a group of 18 patients in acute post-traumatic unresponsive states who were not following commands 2 days+ after sedation hold. While the complexity of the alpha network, as indexed by the standard deviation of the participation coefficients, was significantly related to the patients’ clinical picture at the time of EEG, no network features were significantly related to outcome at 3 or 6 months post-injury. Rather, mean relative alpha power across all electrodes improved the accuracy of outcome prediction at 3 months relative to clinical features alone. These results highlight the link between the alpha rhythm and clinical signs of consciousness and suggest the potential for simple measures of resting-state EEG band power to provide a coarse snapshot of brain health for stratification of patients for rehabilitation, therapy and assessments of both covert and overt cognition.

Housing, Affordability, and Community-Based Aging

The house acts as both an environment of care and a vehicle to financially potentiate long-term community-based support. While housing can empower a diverse set of options for a person-centered aging process, inadequate housing can also impede healthy aging in the community. This symposium teases out the nodes where housing acts to benefit or limit safe community-based aging. The first paper in this symposium, Homeownership Among Older Adults, describes typologies of older adult homeownership and sensitively highlights trends, disparities and important considerations of homeownership in later life. The next two papers take these older adults and explores situations where their housing acts as an asset or as a burden. Identifying Cost Burdened Older Adults acknowledges that housing cost burdens look different for older adults than younger cohorts. A more precise definition of older adult housing cost burden is proposed to help researchers and policymakers better synthesize the complex relationships between older adult housing and their long-term care decisions. The Long-Term Care Financing Challenge then explores the role of home equity in expanding the community-based long-term care choice set for older adults. This paper demonstrates benefits (both realized and unrealized) in home equity and suggests policy implications moving forward. Finally, Cardiometabolic Risk Among Older Renters and Homeowners disentangles the relationship between housing and health by demonstrating health disparities that are associated with housing tenure, conditions and affordability. Taken together, this symposium explores the complex and multidirectional relationships between housing, long-term care and older adult health.

The impact of wearable cardioverter-defibrillator use on long-term decision for implantation of a cardioverter-defibrillator in a semirural acute care hospital

PurposeLarge-scale multi-center studies have reported on efficacy of the wearable cardioverter-defibrillator (WCD). However, outcomes focused on WCD patients treated at community-based acute care centers are lacking.MethodsPatients with cardiomyopathy were included when left ventricular ejection fraction (LVEF) at baseline was ≤ 35%. There were 120 patients meeting the criteria who also had LVEF measured at baseline and after 90 days of WCD use.ResultsAfter 90 days of WCD use, there were 44 (37%) patients in whom LVEF improved to > 35%. Comparison of patients, by whether LVEF improved or not, indicated that median days of WCD wear and hours of daily use were similar as well as characteristics, such as gender, age, and starting LVEF; and diagnoses leading to WCD prescription were similar between groups as were symptom-based prescription of medications. At the end of WCD use, improved LVEF > 35% correlated with fewer implantable cardioverter-defibrillator (ICD) implants. There were 4 (3%) episodes of new atrial fibrillation detected during WCD use. The WCD appropriately delivered a shock to 3 (2.5%) patients with VT/VF being terminated by the first shock. All shocked patients survived for at least 24 h post-shock.ConclusionsDuring WCD use, ischemic and non-ischemic cardiomyopathy patients manifest improved LVEF by 90 days. Long-term care decisions, such as implantation of an ICD, were influenced by LVEF improvement and occurrence of spontaneous VT/VF. The WCD protected patients from sudden cardiac death (SCD) until patient response to guideline-directed medical therapy could be determined.

Development and Field Testing of a Long-Term Care Decision Aid Website for Older Adults: Engaging Patients and Caregivers in User-Centered Design.

Decisions about long-term care and financing can be difficult to comprehend, consider, and communicate. In a previous needs assessment, families in rural areas requested a patient-facing website; however, questions arose about the acceptability of an online tool for older adults. This study engaged older adults and family caregivers in (a) designing and refining an interactive, tailored decision aid website, and (b) field testing its utility, feasibility, and acceptability. Based on formative work, the research team engaged families in designing and iteratively revising paper drafts, then programmed a tailored website. The field test used the ThinkAloud approach and pre-/postquestionnaires to assess participants' knowledge, decisional conflict, usage, and acceptability ratings. Forty-five older adults, family members, and stakeholders codesigned and tested the decision aid, yielding four decision-making steps: Get the Facts, What Matters Most, Consider Your Resources, and Make an Action Plan. User-based design and iterative storyboarding enhanced the content, personal decision-making activities, and user-generated resources. Field-testing participants scored 83.3% correct on knowledge items and reported moderate/low decisional conflict. All (100%) were able to use the website, spent an average of 26.3 min, and provided an average 87.5% acceptability rating. A decision aid website can educate and support older adults and their family members in beginning a long-term care plan. Codesign and in-depth interviews improved usability, and lessons learned may guide the development of other aging decision aid websites.

THE ROLE OF POLICY CONTEXT IN INDIVIDUAL LONG-TERM CARE DECISIONS IN OECD COUNTRIES

While family caregiving of the elderly has long been part of the cultural life of most OECD countries, longer life expectancy combined with low fertility rates has increased the share of the population dependent on current workers and minimized the available population of informal caregivers. The demand for expanded public provision of long-term care (LTC) resulting from this demographic shift prompted reforms in many OECD countries in the 1990s and 2000s. Differences in these reforms provide an opportunity to examine how individual choices between formal and informal care types are shaped by the policy context. I use longitudinal data on elders in three OECD countries, Sweden, Germany, and Japan, to examine LTC decisions under three varied approaches to population aging. The direction of LTC reforms in each country has been shaped by the existing model of care provision and financial constraints. In response to cost pressures, Sweden introduced need-based provision, financial devolution, and market-based approaches to its universal care model. Germany and Japan, in contrast, widely expanded restricted LTC coverage through public LTC insurance models. I use three multinomial logistic models of the LTC decision to test how differing policy schemes influence choices between formal and informal care. Using longitudinal Global Gateway to Aging data for each country, I model the LTC decision in each country as a factor of demographic and need characteristics of the elder experiencing limitations, characteristics of their family, and eligibility for publicly-provided LTC.

Bi-level heterogeneity modeling of functional performance degradation for the aging population

ABSTRACTAs the majority of service recipients of the U.S. long-term care system, the elderly with disabilities experience heterogeneous functional limitation and performance degradation. Successful modeling of heterogeneous degradation becomes of great importance for long-term care decision making. Existing heterogeneity modeling approaches are mainly restricted to single-level modeling of functional performance degradation for older adults. This article proposes a novel bi-level heterogeneity modeling and quantification framework to systematically investigate heterogeneous performance degradation at both sub-population and individual levels. Specifically, a Bayesian non-parametric modeling and inference framework is first proposed to characterize sub-population-level degradation heterogeneity. It relaxes the conventional assumption of pre-specifying a fixed number of sub-populations and allows joint model estimation and selection. Functional data analysis techniques are further considered to quantify individual heterogeneity nested within sub-populations. Based on the extracted temporal variation signatures of degradation profiles, post-analysis is performed to identify relevant risk/protective factors in explaining individual heterogeneity. To illustrate the proposed work and demonstrate its validity, the heterogeneous cognitive degradation quantification of a sample of community-dwelling older adults from the Health and Retirement Study is provided.

Attitudes of Muslims Living in the United States Toward Long-Term Care Decisions and Diagnosis Disclosure for Elderly Family Members.

This study explored the attitudes of Muslims living in the United States toward long-term care decisions and diagnostic disclosure. Members of six mosques in New Jersey aged 40 and older agreed to participate in a telephone interview. Respondents were read medical scenarios and asked to indicate their preferences from a list of responses. Scenarios were: if they or a family member were disabled, who would they prefer to care for them; would they use a Muslim nursing home for themselves or loved one; who should be informed first if an individual had cancer or would die very soon (the individual or the individual's family); and whether these diagnoses should be disclosed to the individual's family without the individual's consent. If disabled, 62% (n = 103) of participants would prefer care at home, and 65.7% (n = 108) would prefer care at home for a disabled loved one. If there were a Muslim nursing home, 78.3% (n = 103) of participants would consider this facility for themselves and 76% (n = 127) would consider it for a loved one. Fifty-six percent (n = 93) of participants believed the individual should be informed first of a cancer diagnosis, and 54.6% (n = 89) believed the individual should be informed first if their death was imminent. Disclosing an individual's cancer diagnosis to family members without the individual's consent was acceptable to 49.7% (n = 83) and disclosing his or her imminent death was acceptable to 55.1% (n = 92). Participants were from 21 countries. Participants from Western countries were most likely to believe individuals should be informed first about their cancer diagnosis or imminent death.

Does home care for dependent elderly people improve their mental health?

While theoretical models on long-term care decisions assume that the health production function of dependent elderly depends positively on the care received, it has not received much attention in the empirical literature. We estimate the effects of both informal and formal home care on the mental health of elderly individuals in France needing help with daily activities. We adjust for the endogeneity of care with instrumental variables, using characteristics of adult children and geographical disparities in access to public long-term care coverage. The results show that informal care reduces the risk of depression of dependent elderly and that formal care increases their general mental health.

How Can Adult Children Influence Parents' Long-Term Care Insurance Purchase Decisions?

Long-term care (LTC) poses a significant strain on public health insurance financing. In response, there is policy interest in bolstering the private long-term care insurance (LTCI) market. Although families are central to LTC provision, their role in LTCI demand remains unclear. The purpose of this study was to obtain in-depth information concerning: (a) How do older parents evaluate the need for LTCI, (b) what role do adult children play? and (c) How do families communicate about parents' LTC preferences and plans, including LTCI purchase? We conducted focus groups with older parents and adult children in diverse markets. Two groups were conducted with older parents who had purchased LTCI and two with parents who had not purchased LTCI. Four groups were conducted with adult children, mixed as to whether their parents had purchased LTCI. Probes were informed by published reasons for purchasing or not purchasing LTCI. We analyzed transcriptions using directed content analysis and constant comparative method. Older parents valued autonomy for themselves and their children. Older parent purchasers regarded LTCI as supporting this value while nonpurchasers perceived limitations. Adult children described unstated expectations that they would care for their parents. Though discussions between parents and children about LTCI were rare, successful influence occurred when children appealed to shared values, specifically avoiding burden and remaining home. Messages that emphasize autonomy over LTC decisions and interventions that start the LTC conversation among families, with attention to shared values, could increase private LTCI uptake.

Comparison of Long-term Care in Nursing Homes Versus Home Health: Costs and Outcomes in Alabama

To compare acute care outcomes and costs among nursing home residents with community-dwelling home health recipients. A matched retrospective cohort study of Alabamians aged more than or equal to 65 years admitted to a nursing home or home health between March 31, 2007 and December 31, 2008 (N = 1,291 pairs). Medicare claims were compared up to one year after admission into either setting. Death, emergency department and inpatient visits, inpatient length of stay, and acute care costs were compared using t tests. Medicaid long-term care costs were compared for a subset of matched beneficiaries. After one year, 77.7% of home health beneficiaries were alive compared with 76.2% of nursing home beneficiaries (p < .001). Home health beneficiaries averaged 0.2 hospital visits and 0.1 emergency department visits more than nursing home beneficiaries, differences that were statistically significant. Overall acute care costs were not statistically different; home health beneficiaries' costs averaged $31,423, nursing home beneficiaries' $32,239 (p = .5032). Among 426 dual-eligible pairs, Medicaid long-term care costs averaged $4,582 greater for nursing home residents (p < .001). Using data from Medicare claims, beneficiaries with similar functional status, medical diagnosis history, and demographics had similar acute care costs regardless of whether they were admitted to a nursing home or home health care. Additional research controlling for exogenous factors relating to long-term care decisions is needed.

Dynamic modelling of long-term care decisions

This paper describes and analyzes research on the dynamics of long-term care and the policy relevance of identifying the sources of persistence in caregiving arrangements (including the effect of dynamics on parameter estimates, implications for family welfare, parent welfare, child welfare, and cost of government programs). We discuss sources and causes of observed persistence in caregiving arrangements including inertia/state dependence (confounded by unobserved heterogeneity) and costs of changing caregivers. We comment on causes of dynamics including learning/human capital accumulation; burnout; and game-playing. We suggest how to deal with endogenous geography; dynamics in discrete and continuous choices; and equilibrium issues (multiple equilibria, dynamic equilibria). We also present an overview of commonly used longitudinal data sets and evaluate their relative advantages/disadvantages. We also discuss other data issues related to noisy measures of wealth and family structure. Finally, we suggest some methods to handle econometric problems such as endogeneous geography.

The Value of Peer-Led Support Groups Among Caregivers of Persons With Parkinson's Disease

Many persons with Parkinson's disease are cared for by family members. The strain of caregiving can negatively affect the health of the caregiver and affect long-term care decisions, making caregiver support a priority. This study highlights the importance of peer-led support groups for family caregivers of persons with Parkinson's disease.

Health Care Professionals, Friends, Family, and God: Interactions Contributing to Caregivers’ Long-Term Care Decisions

During recent decades a significant body of research regarding nursing home placement of an elderly family member has been produced. While some risk factors for placement have been uncovered, such as health and well-being of the caregiver and care recipient, what is left unknown is the lived experience at the point of nursing home placement. The application of an interactionist perspective focuses attention on how nursing home placement decisions are affected by caregivers’ interpersonal interactions. This study examines the interactions that influenced long-term care placements among 18 caregivers using data from in-depth interviews. Findings show that significant interactions, ultimately leading to institutionalization, took place between the caregivers and their health care professionals, friends, family members, and God.

Discharge‐planning for long‐term care needs: the values and priorities of older people, their younger relatives and health professionals

Discharge-planning decisions about long-term care (LTC) can be difficult and distressing for older people, families and discharge-planning health professionals. Retrospective research suggests that despite good intentions and a shared focus on the best interests of the older person, stakeholders may hold very different values about good outcomes and how to decide them. We aimed to compare the opinions and values of frail elders living at home, younger relatives and health professionals experienced in discharge-planning, prospectively: before, not after, a LTC decision. We interviewed three types of stakeholders (10 older people, 8 relatives and 18 health professionals) using a hypothetical vignette about a frail elder leaving hospital. In a mixed methods design, we quantitatively compared the discharge plans and decision-makers that stakeholders suggested, and qualitatively analysed the 36 interview transcripts for participants' articulation of underlying values during these discussions. Older participants often suggested safe restrictive options (residential care, proxy decision-making) for the hypothetical frail elder, while advocating autonomy for themselves. Younger people generally endorsed autonomous decision-making and less restrictive discharge options especially if the elder was mentally competent, but reported difficult ethical tensions between safety and autonomy. Individual personality and preferences, mental capacity, and the importance of personal care in supporting autonomy were central themes consistent with the Ecological Theory of Aging. Accordingly, discharge planners can usefully articulate the balance of safety and autonomy, conceptualizing home care as maintaining independence rather than accepting dependence. Ethical training should incorporate sophisticated models of practice specifying both psychological and physical safety as components of beneficence. Few elders adopt a consumer approach to LTC: health professionals can encourage mid-life adults to consider later care needs when planning for retirement.

Couples Managing the Risk of Financing Long-Term Care

This study examined the complexity of financial long-term care (LTC) decision outcomes among married couples. Supporting the theory of planned behavior, couples reported a range of consensus patterns with their financial LTC intentions and behaviors. Five newly articulated typologies of couples emerged from consensus patterns revealing that couples reported a range of financial LTC intentions and behaviors. More couples reported consensus with their financial LTC behaviors compared to intentions; financial LTC decision outcomes reflected a dynamic and on-going process; and couples were not always in agreement on their financial LTC decision outcomes. Findings reinforce the importance of family practitioners going beyond working with individuals to understanding couple-level planning for financing LTC.

The Effects of State Medicaid Policies on the Dynamic Savings Patterns and Medicaid Enrollment of the Elderly

Medicaid policies that may affect long-term care decisions vary across states and time. Using data from the 1993, 1995, 1998, and 2000 waves of the Assets and Health Dynamics Among the Oldest Old Survey, we estimate a dynamic empirical model of health insurance coverage, long-term care arrangement, asset and gift behavior, and health transitions over time. Long-run simulations from the estimated model reveal that most Medicaid eligibility and generosity policy variables associated with nursing home services have no effect on Medicaid enrollment and asset behavior. Those policies related to home- and community-based services, however, have a significant but small influence.