Themes describing social isolation in family caregivers of people living with dementia: A scoping review.

INTRODUCTION: The number of people with dementia has been increasing. Evidence shows that over 16 million family caregivers provide unpaid care for people with dementia. However, family caregivers experience several challenges throughout their caregiving role, including that of social isolation. Although social isolation in people with dementia has been well documented, social isolation in their family caregivers has not received as much scholarly attention. This scoping review sought to address this dearth of research through the following research question: "What are themes, concepts, or constructs that describe social isolation of family caregivers for people living with dementia?". METHOD: An electronic search was conducted in PubMed, PsycInfo, and Scopus, using the following Boolean search phrase: dementia AND "social isolation" AND (caregiver OR carers). Content analysis was conducted to identify relevant themes. FINDINGS: The initial search yielded 301 studies. Through screening processes, 13 studies were eligible for review. Based on a synthesis of evidence, five themes emerged from the data: disease progression, psychological state, social networks, social supports, and technology. DISCUSSION: This review demonstrates that caregiving is related to social isolation in family caregivers of people living with dementia. The experience of social isolation was related to the progression of dementia, psychological states, and lack of supports. In contrast, social supports, social networks, and using technology may reduce social isolation. Identifying themes provides policy and practice implications, such as using information and communication technology to create and redefine social networks.

A conceptual framework for understanding financial burden during serious illness.

Life-threatening illness is associated with financial burden among families. During this time, care-related expenses often increase. The concept of financial burden has not fully been explored nor conceptually described in the literature. Our study coalesces the empirical literature on financial burden into a more comprehensive multidimensional theoretical framework to understand financial burden among patients and families dealing with serious illness. Using Jabareen's phased approach for building conceptual frameworks, we synthesized the existing scientific literature (including existing measures of financial burden) to construct an empirically derived model. Definitions of financial burden are overlapping with similarities, but also inconsistencies. Many studies have focused more on objective and operational definitions, than subjective and conceptual aspects. Regarding measures for financial burden, many studies have only used a few items. The financial burden is dependent on the illness trajectories and duration. By considering multidimensionality, we illustrate potential financial burden factors (objective, coping, and subjective). Although anticipation and expectations about future financial issues are important, patients and caregivers generally experience objective aspects of burden, followed by subjective impressions of burden. Coping skills likely reduce subjective burden. Based on the results, we redefine the financial burden among patients with life-threatening illness and caregivers.

Measures of financial burden for families dealing with serious illness: A systematic review and analysis.

BACKGROUND: Many families coping with serious illness report experiencing financial burden, which negatively impacts coping and quality of life. Financial burden, however, is a complex construct that has been inconsistently operationalized in the literature. AIM: To review the available literature to identify, and describe the properties of, measurement tools or scales used to assess financial burden, including financial stress and strain, for families dealing with serious illness. DESIGN: A systematic review. DATA SOURCES: Six databases were searched for articles published between 2006 and 2020. The review included studies in English, that reported empirical data, and used at least one measure of financial burden. To obtain a full copy of measures, an environmental scan was conducted. RESULTS: A total of 31 measures were included. Only five of the total were designed for patient self-report, 23 of the total were designed for caregiver report. Whereas 11 measures relied on a single-item, 17 were multi-item. The remaining measures provided no information about target population and items. The most popular measures-based on Google Scholar citations-tended to only include one financial burden item. Given the complexity of financial burden, and its subjective and objective aspects, the utility of these single item measures remains questionable. Also, although patients may experience financial burden, there is a lack of patient-reported measures. CONCLUSION: To measure financial burden, we identified a need to develop and test multi-item measures, measures appropriate for patient populations and greater attention to the temporal aspects of self-report assessments.

Hospice Utilization in the United States: A Prospective Cohort Study Comparing Cancer and Noncancer Deaths.

OBJECTIVES: Reliable national estimates of hospice use and underuse are needed. Additionally, drivers of hospice use in the United States are poorly understood, especially among noncancer populations. Thus the objectives of this study were to (1) provide reliable estimates of hospice use among adults in the United States; and (2) identify factors predicting use among decedents and within subsamples of cancer and noncancer deaths. DESIGN: We conducted a prospective cohort study using the Health and Retirement Study survey. Excluding sudden deaths, we used data from the 2012 survey wave to predict hospice use in general, and then separately for cancer and non-cancer deaths. SETTING: Study data were provided by a population-based sample of older adults from the U.S. PARTICIPANTS: We constructed a sample of 1,209 participants who died between the 2012 and 2014 survey waves. MEASUREMENTS: Hospice utilization was reported by proxy. Exposure variables included demographics, functionality (activities of daily living [ADLs]), health, depression, dementia, advance directives, nursing home residency, and cause of death. RESULTS: Hospice utilization rate was 52.4% for the sample with 70.8% for cancer deaths and 45.4% for noncancer deaths. Fully adjusted model results showed being older (odds ratio [OR] = 1.54), less healthy (OR = .79), having dementia (OR = 1.52), and having cancer (OR = 5.47) were linked to greater odds of receiving hospice. Among cancer deaths, being older (OR = 1.64) and female (OR = 2.54) were the only predictors of hospice use. Among noncancer deaths, increased age (OR = 1.58), more education (OR = 1.56), being widowed (OR = 1.55), needing help with ADLs (OR = 1.13), and poor health (OR = .77) were associated with hospice utilization. CONCLUSION: Findings suggest hospice remains underutilized, especially among individuals with noncancer illness. Extrapolating results to the US population, we estimate that annually nearly a million individuals who are likely eligible for hospice die without its services. Most (84%) of these decedents have a noncancer condition. Interventions are needed to increase appropriate hospice utilization, particularly in noncancer care settings. J Am Geriatr Soc 68:783-793, 2020.

Factors Associated With Opinions About Hospice Among Older Adults: Race, Familiarity With Hospice, and Attitudes Matter.

Attitudes and opinions about end-of-life care among older adults are understudied. Using survey data from the American Association of Retired Persons (AARP) membership in Florida (N = 2714), this study identified predictors of opinions about hospice (OAH) among older adults. Relationships between race/ethnicity and attitudes were also examined. Results showed race of the respondent was the strongest predictor of one's OAH. Predictors of positive opinions of hospice included being of Caucasian race, non-Hispanic ethnicity, better health, greater familiarity with hospice, a high importance of pain control, the importance of fulfilling personal goals, a desire to have health-care professionals involved in one's care, and having engaged in advance care planning. These findings suggest a need for greater attention to culture-based elements in future research and practice.

Validating the 11-Item Revised University of California Los Angeles Scale to Assess Loneliness Among Older Adults: An Evaluation of Factor Structure and Other Measurement Properties.

OBJECTIVE: To examine the measurement properties and factor structure of the short version of the Revised University of California Los Angeles (R-UCLA) loneliness scale from the Health and Retirement Study (HRS). METHODS: Based on data from 3,706 HRS participants aged 65 + who completed the 2012 wave of the HRS and its Psychosocial Supplement, the measurement properties and factorability of the R-UCLA were examined by conducting an exploratory factor analysis (EFA) and the confirmatory factor analysis (CFA) on randomly split halves. RESULTS: The average score for the 11-item loneliness scale was 16.4 (standard deviation: 4.5). An evaluation of the internal consistency produced a Cronbach's α of 0.87. Results from the EFA showed that two- and three-factor models were appropriate. However, based on the results of the CFA, only a two-factor model was determined to be suitable because there was a very high correlation between two factors identified in the three-factor model, available social connections and sense of belonging. CONCLUSION: This study provides important data on the properties of the 11-item R-UCLA scale by identifying a two-factor model of loneliness: feeling isolated and available social connections. Our findings suggest the 11-item R-UCLA has good factorability and internal reliability.

Psychosocial needs and interventions for heart failure patients and families receiving palliative care support: a systematic review.

Although diseases of the heart are the leading cause of death in the USA, palliative care research has largely focused on populations of cancer patients. However, a diagnosis of heart failure differs substantially than that of cancer. They differ in terms of signs and symptoms, disease trajectories, treatment options, stigma, and prognosis. Additionally, the populations affected by these differing illnesses are also unique in a number of fundamental ways. Based on these differences, it is reasonable to hypothesize that palliative care patients with heart failure, and their families, have a distinct set of psychosocial needs. The purpose of this review is to describe the psychosocial needs of palliative care heart failure patients, and their families, as well as the interventions that address those needs. Six electronic databases were searched in June 2016 resulting in 962 identified abstracts. After removal of 388 duplicates, 574 abstracts were screened based on the following criteria: (1) available in English, (2) peer-reviewed, (3) empirical data reported, (4) patient receiving palliative or hospice care, and (5) measured psychosocial needs of heart failure patients and/or their family caregivers. After screening 574 abstracts and conducting a full-text review of 150 articles, a total of 17 studies were identified in our review. Only three intervention studies were identified, two of which evaluated the impact of palliative care over usual care. The remaining study was a clinical trial of a psycho-educational support intervention, which failed to demonstrate beneficial outcomes. Heart failure patients and their family caregivers receiving palliative or hospice care have unique psychosocial needs that are largely unexamined by previous research. The need for further research is discussed.