A mediating role of self-care difficulty in the association between caregiver strain and the impact of caregiving on health: A cross-sectional secondary analysis.

Caregivers of people living with dementia face strain, reduced self-care, and poorer health status. However, research examining the links among those outcomes is limited. We explored the association between caregiver strain and the impact of caregiving on health status and identified the mediating role of self-care difficulty in this association. In the national caregiving dataset "Caregiving in the U.S. 2020," we included 312 caregivers in this study. Demographics, caregiving characteristics, a composite scale for caregiver strain, and single-item questions for the impact of caregiving on health status and self-care difficulty were used. Descriptive statistics and mediation analysis were conducted. Results revealed that higher caregiver strain was associated with higher self-care difficulty (OR 2.054, p < .001) and negative health changes due to caregiving (OR 2.719, p < .001). Self-care difficulty partially mediated this association. These results indicated the need to explore interventions or resources to offer caregivers to encourage their self-care awareness and activities.

Use of Digital Health Resources by Sexual and Gender Minority Caregivers of Older Adults: Findings From the 2020 Caregiving in the U.S. Survey.

We applied Andersen's Behavioral Model of Health Services Use to investigate the health needs and use of digital health resources among sexual and/or gender minority (SGM) caregivers. Data were from the Caregiving in the U.S. 2020 survey. Regression analyses were used to describe associations between predisposing, enabling, and need factors and usage of digital health resources. SGM caregivers provided more hours of care per week, reported higher levels of care intensity, and reported higher physical, emotional, and financial strain compared with non-SGM caregivers. Regression analyses indicated SGM status was a significant predictor of overall use of digital health resources. Younger caregivers, racial minority caregivers, those providing higher levels of care, and those reporting a poorer health status were more likely to use digital health resources. Digital health resources may be useful tools for SGM caregivers of older adults. More research is needed to investigate the reasons SGM caregivers use these resources.

Dyadic Hair Cortisol Self-Collection Procedure.

BACKGROUND: At-home self-collection of specimens has become more commonplace because of measures taken in response to the coronavirus pandemic. Self-collection of hair cortisol is important because chronic stress is present in many populations, such as older adults living with Alzheimer's disease and their family caregivers. For the evaluation of chronic stress, scalp hair can be used as a predictive biomarker because it examines the cumulative, retrospective stress from previous months. OBJECTIVES: The aim of the paper is to provide a study procedure for at-home, scalp hair self-collection for cortisol concentration analysis from dyads consisting of a person living with Alzheimer's disease and their family caregiver. METHODS: After informed electronic consent is obtained, a package containing the necessary tools for self-collection of hair samples from the dyad is mailed to the participant's home. Participants are provided detailed print and video multimedia guides outlining how to obtain the hair samples. Ideally, the hair samples are obtained during the virtual data collection meeting with research personnel. Participants mail back the hair sample in a prepaid package to the biomedical laboratory for analysis. DISCUSSION: At-home, self-collection of hair provides potential advantages such as reduced participant burden, especially for vulnerable populations where transportation and different environments are challenging. At-home sample collection options may increase research participation and can be applied to multiple research foci. Research considerations for dyads, such as people living with Alzheimer's disease and their caregivers, are discussed.

Nurse scholars of the Robert Wood Johnson Foundation Harold Amos Medical Faculty Development Program.

BACKGROUND: The challenge to increase the diversity, inclusivity, and equity of nurse scientists is a critical issue to enhance nursing knowledge development, health care, health equity, and health outcomes in the United States. PURPOSE: The purpose of this paper is to highlight the current nurse scholars in the Robert Wood Johnson Foundation (RWJF) Harold Amos Medical Faculty Development Program (AMFDP). DISCUSSION: Profiles and the programs of research and scholarship of the current AMFDP nurse scholars are described and discussed. Scholars share lessons learned, and how the AMFDP program has influenced their thinking and commitments to future action in service of nursing science, diversity efforts, legacy leadership, issues of health equity. CONCLUSION: RWJF has a history of supporting the development of nursing scholars. AMFDP is an example of legacy leadership program that contributes to a culture of health and the development of next-generation nursing science scholars.

Sexual minorities are at elevated risk of cardiovascular disease from a younger age than heterosexuals.

Cardiovascular disease is the leading cause of death worldwide. In this study, we assessed factors related to cardiovascular disease risk and outcomes among sexual minorities (SM). Data from multiple waves of the PATH study were used in this analysis. Multivariable regression models were used to assess the association between sexual identity and: tobacco or e-cigarette use, adverse cardiovascular events, and age at first diagnosis of adverse cardiovascular disease events. In our sample (N = 23,205), 1,660 (7.15%) participants identified as SM. SM men, relative to heterosexual men, are more likely to be diagnosed with high blood pressure (aRR = 1.27; 95% CI 1.10, 1.47), high cholesterol (aRR = 1.32; 95% CI: 1.12, 1.55), congestive heart failure (aRR = 2.29; 95% CI 1.13, 4.65), stroke (aRR = 2.39; 95% CI: 1.14, 5.04), heart attack (aRR = 2.40; 95% CI 1.42, 4.04), and other heart conditions (aRR = 1.52; 95% CI: 1.06, 2.18). Although no simple differences were observed among SM women compared to heterosexual women, SM women were more likely to be diagnosed at a younger age for high blood pressure (aRR = -0.69; 95% CI - 1.08, - 0.29), high cholesterol (aRR = -0.77; 95% CI - 1.15, - 0.38), stroke (aRR = - 1.04; 95% CI - 1.94, - 0.13), and heart attack (aRR = - 1.26; 95% CI - 2.42, - 0.10). SM men were only diagnosed at a younger age for stroke (aRR = - 1.18; 95% CI - 2.06, - 0.30). Compared to heterosexuals, sexual minorities are at higher risk for cardiovascular disease, more likely to develop cardiovascular disease at an earlier age, and more likely to use tobacco products. Future research should focus on decreasing cardiovascular risk among sexual minorities including reducing tobacco use and stress. Screening recommendations for sexual minority populations should also be reviewed in light of a growing body of literature suggesting elevated risk from a young age.

Inclusive Care Practices and Policies Among Sexual and Gender Minority Older Adults.

As the health care and well-being of sexual and gender minority (SGM; i.e., lesbian, gay, bisexual, and/or transgender or gender non-binary) people in the United States receive federal and local-level attention, SGM older adults and caregivers continue to be left out of important health policy and care conversations. The current article describes policy issues and affirmative strategies related to inclusive care practices among SGM older adults and caregivers. In addition to the broader policies considered related to health and well-being, we include a discussion of local-level policy strategies to mitigate discrimination and promote inclusive care for SGM older adults and caregivers. [Journal of Gerontological Nursing, 48(12), 6-15.].

Smarthealth technology study protocol to improve relationships between older adults with dementia and family caregivers.

AIM: The aim of this study is to develop a Smarthealth system of monitoring, modelling, and interactive recommendation solutions (for caregivers) for in-home dementia patient care that focuses on caregiver-patient relationships. DESIGN: This descriptive study employs a single-group, non-randomized trial to examine functionality, effectiveness, feasibility, and acceptability of the novel Smarthealth system. METHODS: Thirty persons with Alzheimer's Disease or related dementia and their family caregivers (N = 30 dyads) will receive and install Smarthealth technology in their home. There will be a 1-month observation phase for collecting baseline mood states and a 2-month implementation phase when caregivers will receive stress management techniques for each detected, negative mood state. Caregivers will report technique implementation and usefulness, sent via Ecological Momentary Assessment system to the study-provided smartphone. Caregivers will provide daily, self-reported mood and health ratings. Instruments measuring caregiver assessment of disruptive behaviours and their effect on caregivers; caregiver depressive symptoms, anxiety and stress; caregiver strain; and family functioning will be completed at baseline and 3 months. The study received funding in 2018 and ethics board approval in 2019. DISCUSSION: This study will develop and test novel in-home technology to improve family caregiving relationships. Results from this study will help develop and improve the Smarthealth recommendation system and determine its usefulness, feasibility, and acceptability for persons with dementia and their family caregiver. IMPACT: The Smarthealth technology discussed will provide in-home stress reduction resources at a time when older adults may be experiencing increasingly high rates of isolation and anxiety and caregiver dyads may be experiencing high levels of relationship strain. TRIAL REGISTRATION: This study was registered with Clinical Trials.gov (Identifier NCT04536701).

"It's just part of life": African American daughters caring for parents with dementia.

The purpose of this study was to gain a greater understanding of the experiences of African American daughters caring for parents with Alzheimer's disease or a related dementia (ADRD). In this secondary analysis of a subset (N = 12) of the sample from a previous study, daughters averaged 54 years of age and were caring for parents with moderate to severe ADRD. Results revealed two main categories: Caregiver Concerns and Caregiver Coping. Subcategories included challenging behaviors, social aspects, integration, and family culture and values. Findings offer insight into cultural factors relevant to practice along with research recommendations.

Managing Shame: A Grounded Theory of How Stigma Manifests in Families Living With Dementia.

BACKGROUND: Alzheimer's disease and related dementias are irreversible, progressive brain disorders that slowly destroy memory, language, problem solving, and cognition. In the United States, dementia is the fifth leading cause of death for people age 65 years and older. Early diagnosis could have important benefits stigma related to dementia remains a significant impediment to diagnosis, treatment, and accessing services. While a growing body of research documents the existence and negative outcomes of stigma, less is known about how dementia-related stigma produces ill effects. AIMS: The purpose of this study was to use qualitative methods to explore how stigma manifests within families from the perspective of family caregivers of people with dementia. METHOD: Using a grounded theory approach, we interviewed 13 family caregivers of people with dementia. RESULTS: Shame emerged as the central theme experienced by family caregivers of people with dementia. Attempting to manage shame, produced three categories of responses: (1) silencing and not calling attention to the symptoms, (2) concealing the diagnosis, and (3) shunning and avoiding contact. CONCLUSIONS: Shame may be an underlying mechanism by which stigma is enacted and perpetuated, resulting in caregivers' isolation and delay in access to diagnostic and supportive services. Efforts to dispel the misconception that dementia is a shameful disease may be one way to diminish stigma.

Nonpharmacological Strategies Used By Family Caregivers of Persons With Alzheimer's Disease and Related Dementias as Presented in Blogs.

Individuals with Alzheimer's disease and related dementias (ADRD) may exhibit behavioral and psychological symptoms of dementia that can increase the strain experienced by their family caregivers. This strain correlates with increased stress and reduced quality of life for the family caregiver and individual with ADRD. More information is needed regarding the ways in which caregivers manage the caregiving experience in their efforts to reduce strain and maintain or improve quality of life. Many individuals, including dementia caregivers, use web blogs as online journals to share their lived experiences. The current study used blogs written by family caregivers of persons with ADRD to explore strategies used to support their care recipients. Using a qualitative thematic analysis, six themes related to the strategies used by caregivers were identified: Modifying the Physical and Personal Environment; Engaging the Person With ADRD; Seeking Outside Assistance; Using Complementary Therapies; Planning and Organization; and Reminiscing and Traditions. The current findings extend our understanding of strategies for caregiving that are used by and acceptable to family caregivers of persons with ADRD. This information can be used to develop or modify nursing-related interventions and services aimed at improving caregiver strain and quality of life. [Journal of Gerontological Nursing, 45(7), 25-35.].

"A Fine Line That We Walk Every Day": Self-Care Approaches Used by Family Caregivers of Persons with Dementia.

Individuals living with Alzheimer's disease and related dementias (ADRD) often exhibit behavioral and psychological symptoms of distress that can contribute to the strain experienced by their family caregivers. This strain can increase levels of stress for family caregivers and reduce quality of life, which can have a negative impact on physical health and wellbeing for both the caregiver and the person with ADRD. This study used blogs written by family caregivers of persons with ADRD to explore self-care strategies practiced by these caregivers. Using a qualitative thematic analysis, seven themes related to self-care approaches used by caregivers of persons with ADRD were identified: (1) health and wellness; (2) altruism and activism; (3) reminiscing and legacy building; (4) social support; (5) information exchange; (6) organization and planning; and (7) spirituality. By understanding the ways in which caregivers for someone with ADRD practice self-care, interventions and services can be developed in an effort to improve caregiver quality of life.

Understanding End-of-Life Decision-Making Terminology Among African American Older Adults.

The purpose of the current study was to examine understanding of end-of-life (EOL) decision-making terminology among family caregivers of African American older adults with dementia. This qualitative descriptive study was part of a larger mixed-methods study from which a subset of caregivers (n = 18) completed interviews. Data were analyzed using descriptive statistics and content analyses guided by methods of qualitative analysis. Caregiver interpretation of EOL decision-making terminology varied between associations before and/or after death. EOL decision making was most often a family decision, based on past experiences, and included reliance on resources such as faith or spirituality and health care providers. Patients and families attach meaning to health care terms that should be aligned with health care providers' understanding of those terms. Results provide insight to improve EOL decision making in this population via tailored interventions for patients, families, and health care providers. [Journal of Gerontological Nursing, 44(2), 33-40.].

Use of Body Sensors to Examine Nocturnal Agitation, Sleep, and Urinary Incontinence in Individuals With Alzheimer's Disease.

Nighttime agitation, sleep disturbances, and urinary incontinence (UI) occur frequently in individuals with dementia and can add additional burden to family caregivers, although the co-occurrence of these symptoms is not well understood. The purpose of the current study was to determine the feasibility and acceptability of using passive body sensors in community-dwelling individuals with Alzheimer's disease (AD) by family caregivers and the correlates among these distressing symptoms. A single-group, descriptive design with convenience sampling of participants with AD and their family caregivers was undertaken to address the study aims. Results showed that using body sensors was feasible and acceptable and that patterns of nocturnal agitation, sleep, and UI could be determined and were correlated in study participants. Using data from body sensors may be useful to develop and implement targeted, individualized interventions to lessen these distressing symptoms and decrease caregiver burden. Further study in this field is warranted. [Journal of Gerontological Nursing, 44(8), 19-26.].

Concept analysis of family homeostasis.

AIM: To report a concept analysis of family homeostasis. BACKGROUND: As family members are a majority of informal caregivers, negative consequences from caregiving duty create a vicious cycle in the family unit resulting in ongoing health crises and care challenges. DESIGN: Concept analysis. DATA SOURCES: Forty empirical studies published from 1956-2012 were selected by searching five electronic bibliographical databases and by a manual search conducted from 2012-2013. Search terms included 'family homeostasis', 'homeostasis in family', 'homeostatic care' and 'family equilibrium'. Clinical experiences in nursing practice were used for constructing cases and clinical implications. METHODS: Walker and Avant's method guided this analysis. RESULTS: Family homeostasis is defined as the capacity and mechanisms by which equilibrium is re-established in the family after a change occurs. Five critical attributes are identified: (1) predetermined setpoint; (2) self-appraised antecedents; (3) interdependence; (4) tendency to stability; and (5) feedback mechanisms. Antecedents include any type of causative change beyond the tolerable limit, while consequences encompass intermediate and long-term outcomes as well as equilibrium itself. CONCLUSION: Family homeostasis provides a conceptual rationale of family caregiving. While care recipients remain the primary beneficiaries of healthcare provision, homeostatic mechanisms are required to support the family caregiver's valuable contribution in the caring process to enhance family well-being. Further study should expand the definition and settings of family to reflect healthcare needs of diverse types of families and from the perspectives of different healthcare providers.

Empowering Dementia Caregivers: Incorporating Caregiving Training Resources Into Current Procedural Technology Codes.

PURPOSE/OBJECTIVES: We aim to explore Current Procedural Terminology (CPT) codes for caregiving training services and their potential impacts on caregivers of people living with dementia. DESCRIPTION OF THE PROJECT/PROGRAM: In response to the growing need for support for caregivers of people living with physical and mental health issues, CPT codes for caregiving training services will be activated for the calendar year 2024. These codes cover (1) family group behavior management and modification training services and (2) caregiver training for techniques to help patients maintain their quality of life. Caregivers will access such training support through the CPT codes provided by treating practitioners. The duration of training will vary by code. OUTCOME: Implementing CPT codes for caregiver training services highlights the vital role of caregivers in patient care. This support may improve their skills and communication with healthcare providers. However, timing and accessibility in care delivery need clarification, especially for caregivers of people living with dementia. Regular skill assessment and culturally competent care are essential. Before providing the service, provider training may also promote person-centered care, benefiting patients and their caregivers. CONCLUSION: Activating CPT codes for caregiving training services may enhance caregivers' support and skills, including dementia care.

The effects of self-guided interventions on stress, burden, and mental health in caregivers of people living with dementia: A systematic review.

Background: The number of people living with dementia continues to grow, increasing the demands on unpaid caregivers of people living with dementia. Caregiving can be emotionally and mentally distressing. In response, numerous interventions have been developed and tested to improve mental health in caregivers of people living with dementia. However, the effects of self-guided interventions on mental health in this population have remained understudied. Objective: We systematically examined the effects of self-guided interventions on stress, burden, and mental health of unpaid caregivers of people living with dementia. Design and Data Sources: A systematic review method following PRISMA guideline was used. PubMed, CINAHL, PsycINFO, Scopus, and Embase databases were searched using relevant search terms for the study aims from September to November 2022. The search was limited to peer-reviewed articles written in English. This review included articles that examined 1) unpaid caregivers of people living with dementia; 2) a self-guided, self-directed, or self-facilitated intervention; and 3) intervention to improve psychological or mental health as an outcome of interest. The exclusion criteria were: 1) secondary data analysis research based on an intervention study, 2) systematic reviews or meta-analyses, or 3) articles that evaluated only the acceptability or feasibility of a program. The collected data were synthesized using descriptive analysis with tabular summaries. The quality of each paper included was assessed by using JBI Quality Assessment tools. Results: A total of 16 articles and 1,182 unpaid caregivers of people living with dementia were included in this review. Stress, burden, depressive symptoms, anxiety, quality of life, self-efficacy, positive aspects of caregiving, social support, and personal relationship were measured in at least three articles. Depressive symptoms and burden were the most frequently measured outcomes. Stress was generally reduced after the interventions. However, the results of burden and mental health from each intervention were mixed and inconsistent. Interestingly, interventions that lasted less than 3 months were more likely to have better efficacy. Conclusions: Although the results of self-guided interventions are mixed, this is a potentially useful tool in improving emotional well-being for unpaid caregivers of people living with dementia due to low time burden, ease-to-access, and affordability. Future direction in intervention development should include identifying the optimal length and components of self-guided interventions and collaboration with clinicians for wider distribution to unpaid caregivers of people living with dementia. Registration: This review was not registered at the PROSPERO, and a review protocol was not prepared.

Transitions in dementia care: theoretical support for nursing roles.

There are several predictable transitions in the course of dementia, and care is often provided by family members in the earlier stages. Later stages often include the move to one or more care settings. Important transitions for those with dementia and their families and/or caregivers include the initial diagnosis of dementia; advanced planning for financial concerns and healthcare considerations; driving cessation; managing behavioral symptoms; changes in settings; and preparing for end-of-life. Evidence has emerged to inform the important roles nurses may have in each of the transitions. In this article, we explore the concept of transitional care and how it relates to nursing care of older adults with Alzheimer's disease and other dementias. We begin by briefly describing a middle-range theory of transitions. Next, we describe the dementia trajectory and provide evidence for expanding nursing roles in transitions. Also included are recommendations for research in the area of roles and transitional care.

Hair Cortisol Concentration, Perceived Stress, Mental Well-Being, and Cardiovascular Health in African American Older Adults: A Pilot Study.

(1) Background: African Americans experience high rates of psychological stress and hypertension, which increases their risk of cardiovascular disease with age. Easy-to-collect psychological and biological stress data are valuable to investigations of this association. Hair cortisol concentration (HCC), as a proxy biomarker of chronic stress exposure, provides such advantages in contrast to collection of multiple daily samples of saliva. Objective: To examine the relationships among HCC, perceived stress, mental well-being, and cardiovascular health (systolic blood pressure (SBP), diastolic blood pressure (DBP), and mean arterial pressure (MAP)). (2) Methods: Cross-sectional secondary data (N = 25) were used from a mind-body intervention study in hypertensive African Americans ages 65 and older. Data included HCC, a four-item perceived stress scale, SF-36 mental components summary, and SBP/DBP. SBP + 2 (DBP)/3 was used to calculate MAP. (3) Results: The relationship between mental well-being and perceived stress (r = -0.497, p ≤ 0.01) and mental well-being and DBP (r = -0.458, p = 0.02) were significant. HCC change was not significant. In a regression model, every unit increase in well-being predicted a 0.42 decrease in DBP (ß = -0.42, 95% CI (-0.69-0.15)) and a 1.10 unit decrease in MAP (ß = -1.10, 95% CI (-1.99-0.20)). (4) Conclusions: This study contributes to the knowledge of physiologic data regarding the relationship between MAP and well-being. Findings from this study may aid in the development of interventions that address mental well-being and cardiovascular health in African American older adults with hypertension.

Using Twitter to understand perspectives and experiences of dementia and caregiving at the beginning of the COVID-19 pandemic.

The COVID-19 pandemic has placed a tremendous burden on all of society, particularly among vulnerable populations such as people living with dementia and their caregivers. Efforts to understand the impact of the COVID-19 pandemic on those living with dementia are crucial towards addressing needs during the pandemic and beyond. This qualitative descriptive study includes a thematic analysis of 6938 tweets from March 17-24, 2020, that included direct or indirect references to COVID-19 and at least one of the following terms/hashtags: Alzheimer, #Alzheimer, dementia, and #dementia. Five themes were identified: continuing care, finding support, preventing spread of COVID-19, maintaining human rights, and the impact of the pandemic on the daily lives of people living with dementia. People living with dementia and their families faced unique challenges related to caregiving, maintaining social connectedness while trying to follow public health guidelines, and navigating the convergence of COVID-19 and dementia-related stigma. Data from Twitter can be an effective means to understand the impacts of public health emergencies among those living with dementia and how to address their needs moving forward by highlighting gaps in practice, services, and research.