The association of religion with advance care planning.

Personal preferences influence end-of-life (EOL) decision-making and are commonly associated with engagement in the advance care planning process. Completing an advance directive (AD) allows individuals to formally document and legally report their EOL care preferences. This study explored how two aspects of religion-personal religious beliefs and formal religion practices-may be associated with advance care planning. A national sample of healthy adults in the United States aged 50 years and older (n = 514; 74% cisgender women) completed surveys detailing their EOL preferences, advance care planning, personal religious beliefs, and formal religion practices. Using Ordinary Least Squares (OLS), we find that a higher belief in God's role at EOL was associated with a higher preference for life-prolonging measures. Using logistic regression, those with a higher belief in God's role at EOL had lower odds of AD completion. Multiple dimensions of religion should be considered when studying health care preferences and decision-making.

Advance Care Planning in the Context of Dementia: Defining Concordance.

BACKGROUND AND OBJECTIVES: Individuals with dementia may require a surrogate decision maker as their disease progresses. To prepare for this potential role, dementia care partners need to develop a thorough understanding of their care recipient's end-of-life values and preferences, or care dyad advance care planning (ACP) concordance. As part of our pilot study implementing the LEAD intervention with dementia care dyads, we conducted a multimethod investigation to define care dyad ACP concordance. RESEARCH DESIGN AND METHODS: We conducted a scoping review of peer-reviewed studies published after 1991 in English focusing on care dyad ACP concordance in dementia care and included 34 articles. Concurrently, we used descriptive qualitative analysis to analyze 7 dyadic ACP conversations from a pilot study about dyadic dementia ACP. RESULTS: The scoping review demonstrated (a) no definition of care dyad ACP concordance was reported; (b) surrogate accuracy in end-of-life decisions varies widely; and (c) best practices for ACP in dementia may aid in achieving ACP concordance, but do not prioritize it as an outcome. Qualitative analysis identified 7 elements for achieving concordance: Respect/Regard; use of Clarifying Processes; Conveying Health Care Scenarios; Affirmation of Understanding; Recognizing Uncertainty; Expression of Positive Emotions; and Trust. DISCUSSION AND IMPLICATIONS: Care dyad ACP concordance occurs when care recipients and care partners both understand a care recipient's end-of-life values, understand the end-of-life preferences informed by those values, and the care partner expresses a willingness to accomplish the care recipient's wishes to the best of their ability. ACP concordance can be further operationalized for research and clinical care.

Family caregiver experiences and needs across health conditions, relationships, and the lifespan: a Qualitative analysis.

PURPOSE: The purpose of this study was to understand the lived experiences of family caregivers who provide care to individuals across a broad range of ages, caregiving relationships, and health conditions and/or disabilities. Family caregiver research is typically siloed by health condition or by caregiving relationship, leaving gaps in understanding similarities and differences among caregivers. METHODS: We hosted three virtual focus groups with diverse family caregivers (n = 26) caring for an individual with a long-term disability and/or health condition(s). We conducted a qualitative thematic analysis using an iterative, inductive process. RESULTS: Participants primarily expressed shared experiences, despite having unique caregiving situations. We identified themes among a) caregiver experiences: Trying to Do It All, Balancing Complex Emotions, Managing Expectations, and Adjusting to Changes Over Time and b) caregiver needs: Longing for Breaks and Self-Care; Lacking Help, Support and Resources; and Desiring Understanding and Recognition. CONCLUSIONS: These findings emphasize that many elements of the caregiving experience transcend care recipient age, condition, and relationship and are applicable to clinicians, researchers, and policy makers. The evidence of shared caregiver experiences can guide efficiencies in policy and practice (e.g., pooling of existing resources, expansion of interventions) to meet the needs of a broader population of caregivers.

Promoting Advance Care Planning for Persons with Dementia: Study Protocol for the LEAD (Life-Planning in Early Alzheimer's and Other Dementias) Clinical Trial.

Due to the insidious progression of Alzheimer's disease and related dementias (ADRD), surrogate decision-makers typically make medical and long-term-care decisions for a care recipient, most often a family care partner. Unfortunately, many care recipient/care partner dyads have failed to engage in advance care planning or have lost the opportunity to do so due to the cognitive decline of the care recipient. To address this need, our team created a validated dementia-focused advance care planning tool known as the LEAD Guide (Life-Planning in Early Alzheimer's and Other Dementias). With funding from the National Alzheimer's Association and in consultation with our community advisory board, we developed a preliminary web-based intervention. This intervention integrates the LEAD Guide with self-paced educational modules that lead dyads through conversations and dementia-focused advance care planning processes. In this concept paper, we describe the aims of our funded R01 clinical trial (National Institute on Aging), where we aim to refine our preliminary web-based platform for use in a 5-month mixed-method NIH Stage-1 behavioral intervention. Using a sample of diverse community-based ADRD dyads (n = 60), we aim to: 1) describe the acceptability, usability, and feasibility of the intervention, 2) assess the initial efficacy of the intervention on the primary outcome (decision-making self-efficacy), and secondary outcomes (relationship quality, subjective well-being, anxiety) as perceived by both the care recipient and the care partner, and 3) examine advance care planning congruence as a mechanism of action. The LEAD clinical trial addresses public health challenges by guiding and supporting families through challenging advance care planning conversations, facilitating the transfer of knowledge regarding care preferences and values from the care recipient to the care partner, with the ultimate goal of improving the quality of life for both individuals with ADRD and their care partners.

"I worry about this patient EVERY day": Geriatrics Clinicians' Challenges in Caring for Unrepresented Older Adults.

Unrepresented older adults are at risk for adverse outcomes, and clinicians who care for them may face ethical dilemmas and unique challenges when making person-centered care recommendations. However, little is known about their perspectives on clinical challenges in caring for this population. An online survey was used to assess issues around providing care for unrepresented patients. Ninety-two American Geriatrics Society members working with older adults in inpatient and/or outpatient settings completed the survey. Descriptive qualitative analysis of narrative survey responses identified five broad themes: (a) health risk characteristics of patients, (b) care decisions facing the team, (c) psychosocial considerations by the team, (d) patient outcomes, and (e) burden of the provider and/or health system. These findings demonstrate that geriatrics clinicians face challenges in working with unrepresented adults in both inpatient and outpatient settings. We interpret these results in light of existing literature and propose collaborative approaches that may improve outcomes.

A Limited Opportunity: COVID-19 and Promotion of Advance Care Planning.

Background: Little is known about how COVID-19 has influenced the role of family caregivers in advance care planning (ACP). Objectives: To explore the experiences of family caregivers and ACP in the United States during the COVID-19 pandemic. Design: Exploratory sequential mixed-methods design of caregiver characteristics and pandemic response to ACP. Settings/Subjects: Family caregivers of care recipients with varied caregiving needs (dementia, mental illness, etc.). Measurements: Quantitative survey was done of fixed-choice questions of 82 caregivers. Semistructured qualitative telephone interviews were performed of a subsample of participants (n = 28). Results: Some (19%) of family caregivers revisited or updated advance directives of care recipients and/or had some type of contingency plan (33%) if they were to become ill. We identified three barriers caregivers faced during the pandemic that may have limited their engagement with ACP. Conclusions: Family caregivers need education regarding ACP and specific resources that can guide and support them through the process of ACP, for both themselves and care recipients.

"You Feel Very Isolated": Effects of COVID-19 Pandemic on Caregiver Social Connections.

One in five individuals in the United States provides care and support to ill, disabled, and aging family members in the home, leading to feelings of burden, stress, and poor health and well-being. Social support represents an important buffer for family caregivers that allows them to feel less isolated and more positive about their caregiving role. This sequential mixed-methods study aimed to examine the effect of the COVID-19 pandemic on family caregivers' social connections. Eighty-two caregivers completed a web-based survey which comprised of fixed-choice and open-ended questions. Survey data showed that the majority of caregivers (83%) reported an increase in stress and feeling lonely (77%) during the pandemic. Qualitative interviews with a subsample of caregivers (n=27) further explored social connections during the pandemic. Three themes echoed the quantitative findings and centered around defining boundaries, intentionality in social interactions, and loss of social resources. Although caregivers were often strained by new or increased caregiving demands, many experienced positive changes such as feeling a deeper connection with the care-recipient. Findings from this study highlight the need for further consideration of the impact of social isolation on the well-being of caregivers.

Exploring Beliefs about Aging and Faith: Development of the Judeo-Christian Religious Beliefs and Aging Scale.

This paper reports on the development of a novel 10-item scale that measures beliefs about aging as well as religious-based beliefs about aging. The Religious Beliefs and Aging Scale (RBAS) shows acceptable internal consistency (α = 0.74) and is bolstered by a strong correlation (r = 0.70) with the Brief Multidimensional Measure of Religiousness/Spirituality. Exploratory factor analysis elucidated two belief subscales: Afterlife (i.e., how age is experienced in the afterlife; α = 0.897) and Punishment (i.e., aging and dementia as a punishment for sin; α = 0.868). This scale can be used in research regarding end-of-life planning, ageism, and self-care practices.

Development of a Gerontology Graduate Certificate in Post-Acute and Long-Term Care.

Nurse practitioners (NPs) can provide safe, effective, quality care to older adults in post-acute and long-term care (PALTC) settings. However, there is a paucity of exposure to PALTC settings in most NP educational programs. Therefore, the current authors developed an elective graduate certificate in gerontology with an emphasis in PALTC for NP students. The graduate certificate curriculum was developed by faculty with expertise in nursing and gerontology education. The PALTC certificate comprises 15 credit hours of online didactic courses, 80 leadership hours, 200 clinical hours, and a scholarly project dedicated to PALTC. Completion of a graduate certificate in PALTC is a novel model for preparing NP students for practice in PALTC settings. The current article serves as a framework for other programs to reference as they develop individualized graduate certificate PALTC programs in their academic institutions. [Journal of Gerontological Nursing, 45(10), 47-52.].

Social Lives and Cliques Within Senior Housing Communities.

A better understanding of social environments will benefit facilitation of social cultures within senior housing communities. Social cliques naturally form among groups of people, particularly those living in close proximity. Research has shown that often older adults experience stigma based upon their health status and are excluded from social groups. This study examined residents' perceptions of life in senior housing, social stigma, and cliques. Forty-eight residents from two types of senior housing communities participated in the study. Qualitative thematic coding was used to analyze responses to open-ended interview questions. Overall, residents reported satisfaction with the community and their privacy and reported difficulties with distance from family, caregiving, and bereavement. The majority were able to identify cliques, defining them based upon common interests, health status, and shared histories. The most salient finding was that while social cliques existed they were not a source of dissatisfaction or stigma.

A Comparison of the Influence of Anticipated Death Trajectory and Personal Values on End-of-Life Care Preferences: A Qualitative Analysis.

OBJECTIVES: We examined anticipated preferences for end-of-life (EOL) care in healthy older adults in the context of various terminal disease scenarios to explore the relationship between personal values and diseases and conditions that would influence EOL care choices. METHODS: Qualitative Descriptive Analysis was used to derive themes and the relationship between EOL preference themes and personal value themes in 365 respondents in a national sample of healthy older adults who completed a survey on their anticipated preferences for end-of-life (EOL) care. RESULTS: Reluctance to burden close others was the most frequently voiced personal value across all conditions affecting EOL preferences, followed by the personal value of quality of life. Concern about whether one's wishes would be honored was more commonly voiced in the context of hypothetical, prospective terminal cancer than in neurological conditions. Respondents who voiced desire for autonomy in how they would die clearly attributed extreme pain as the primary influence on EOL preferences. CONCLUSIONS: Comprehensive assessment of patient personal values should include consideration of particular chronic disease scenarios and death trajectories to fully inform EoL preferences. CLINICAL IMPLICATIONS: Because personal values do influence EOL preferences, care should be taken to ascertain patient values when presenting diagnoses, prognoses, and treatment options. In particular, patients and families of patients with progressive neurological diseases will likely face a time when the patient cannot self-represent EOL wishes. Early discussion of values and preferences, particularly in the context of cognitive disease is vital to assure patient-directed care.

The Influence of Hypothetical Death Scenarios on Multidimensional End-of-Life Care Preferences.

BACKGROUND: Differences in end-of-life (EOL) care preferences (eg, location of death, use of life-sustaining treatments, openness to hastening death, etc) based on hypothetical death scenarios and associated physical and/or cognitive losses have yet to be investigated within the palliative care literature. AIM: The purpose of this study was to explore the multidimensional EOL care preferences in relation to 3 different hypothetical death scenarios: pancreatic cancer (acute death), Alzheimer disease (gradual death), and congestive heart failure (intermittent death). DESIGN: General linear mixed-effects regression models estimated whether multidimensional EOL preferences differed under each of the hypothetical death scenarios; all models controlled for personal experience and familiarity with the disease, presence of an advance directive, religiosity, health-related quality of life, and relevant demographic characteristics. SETTING/PARTICIPANTS: A national sample of healthy adults aged 50 years and older (N = 517) completed electronic surveys detailing their multidimensional preferences for EOL care for each hypothetical death scenario. RESULTS: The average age of the participants was 60.1 years (standard deviation = 7.6), 74.7% were female, and 66.1% had a college or postgraduate degree. Results revealed significant differences in multidimensional care preferences between hypothetical death scenarios related to preferences for location of death (ie, home vs medical facility) and preferences for life-prolonging treatment options. Significant covariates of participants' multidimensional EOL care preferences included age, sex, health-related quality of life, and religiosity. CONCLUSION: Our hypothesis that multidimensional EOL care preferences would differ based on hypothetical death scenarios was partially supported and suggests the need for disease-specific EOL care discussions.

Sex and post-menopause hormone therapy effects on hippocampal volume and verbal memory.

Many studies suggest sex differences in memory and hippocampal size, and that hormone therapy (HT) may positively affect these measures in women; however, the parameters of HT use that most likely confer benefits are debated. We evaluated the impact of sex and postmenopausal HT use on verbal learning and memory and hippocampal size in 94 cognitively intact women and 49 men. Using analysis of covariance that controlled for age and education, women had better total word learning and delayed verbal memory performance than men. HT analyses showed that non-HT users performed similarly to men, while HT users performed better than men in Delayed Memory regardless of whether use was current or in the past. Women had larger hippocampal volumes than men regardless of whether they were HT users. Using univariate linear models, we assessed group differences in the predictive value of hippocampal volumes for verbal learning and memory. Hippocampal size significantly predicted memory performance for men and non-HT users, but not for HT users. This lack of relationship between hippocampal size and verbal learning and memory performance in HT users suggests HT use may impact memory through extra-hippocampal neural systems.

Does Dementia Caregiving Accelerate Frailty? Findings From the Health and Retirement Study.

PURPOSE OF THE STUDY: Numerous studies have discovered negative health consequences associated with spousal caregiving at the end of life; however, little is known about how care-recipient cognitive status impacts caregiver health outcomes, specifically in the area of frailty, and whether health consequences remain over time. This study examines differences in frailty between spousal caregivers of persons with and without a dementia diagnosis. DESIGN AND METHODS: Using 7 biannual waves of the Health and Retirement Study data (1998-2010), we examined odds of becoming frailer among surviving spouses of individuals who died between 2000 and 2010 (N = 1,246) with and without dementia. To assess increased frailty, we used a Frailty Index, which assesses chronic diseases, mobility, functional status, depressive symptoms, and subjective health. Logistic regression was used to examine the relationship between care-recipient cognitive status and whether, compared with the wave prior to death of the care-recipient, spousal caregivers were frailer: (1) in the wave the death was reported and (2) 2 years after the death was reported. RESULTS: Dementia caregivers had 40.5% higher odds of experiencing increased frailty by the time the death was reported and 90% higher odds in the following wave compared with non-dementia caregivers. IMPLICATIONS: Given our findings, we discuss public health implications regarding the health and well-being of caregivers of persons with dementia. Given projected increases in dementia diagnoses as the population ages, we propose a need for interventions that provide enhanced support for dementia caregivers.

Assessment of patient and caregiver experiences of dementia-related symptoms: development of the Multidimensional Assessment of Neurodegenerative Symptoms questionnaire.

BACKGROUND: To provide preliminary validation data on a self- or informant-report multidimensional questionnaire of symptoms associated with neurodegenerative disorders. METHODS: Participants from 2 trials (n = 125), the Arizona APOE Cohort and the Arizona Alzheimer's Disease Center, completed the Multidimensional Assessment of Neurodegenerative Symptoms questionnaire (MANS) and other related measures. RESULTS: Measures of central tendency are provided for the sample as a whole and by cognitive status. Internal consistency of the MANS is excellent (alpha = 0.98). Factor analysis suggests 4 factors. Correlational analyses support the construct validity of the MANS with moderate to high (r = 0.54-0.87) correlations between the MANS and measures of mood, cognition and daily functioning. CONCLUSION: Results provide initial support for the MANS as a brief measure that is a reliable and valid indicator of cognitive, personality, functional and motor symptoms potentially related to neurodegenerative etiologies. Further research with the MANS is warranted.