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.

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.

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.].

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.

A Comparative Analysis of Family Quality of Life Between Heterosexual and Sexual Minority Caregivers of People with Dementia.

Providing care for someone with Alzheimer's disease or related dementias (ADRD) is associated with significant physical and mental strain affecting quality of life among caregivers. However, little attention has been given to sexual minority (SM; lesbian, gay, bisexual, queer) people caring for those with ADRD. In this cross-sectional study, we used psychosocial measures to describe the characteristics and family quality of life of SM and heterosexual caregivers for people with ADRD. SM caregivers were significantly younger and more frequently reported full or part-time employment compared with their heterosexual counterparts. Lesbian and bisexual caregivers reported more difficulty in paying for everyday basics. After controlling for demographic covariates, SM caregivers had significantly higher family quality of life scores compared with heterosexual caregivers. This study is among the first to compare family quality of life between SM and heterosexual caregivers. Findings can guide development of targeted interventions for SM caregivers.

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.

Co-created health education intervention among older African American women living with hypertension.

INTRODUCTION: African Americans over the age of 60 years face disproportionate risk of developing hypertension, which can be mitigated with lifestyle changes. This study examines the acceptability and cost of a patient-centered, co-created health education intervention with older African Americans living with hypertension. METHODS: Twenty women participated in this study that included four weekly, two-hour group sessions centered on hypertension knowledge and calibration of home blood pressure monitors, stress and interpersonal relationship management, sleep and pain management, and healthy eating. The study took place in the Midwest United States. RESULTS: Descriptive statistics were used to analyze acceptability data that included attendance and a brief investigator-generated questionnaire. Twenty women were enrolled. Sixteen participants attended all four sessions, all reported they intended to continue using the intervention and felt it fit within their culture, routine, and self-care practices. The estimated cost of conducting the intervention was $227.00 (U.S. dollars) per participant. CONCLUSIONS: The co-created health education intervention was acceptable. Given the dire need for cost-effective interventions to improve the adoption of health promoting self-care management behavior, to reduce the prevalence of hypertension in African Americans, the results of this study have implications for future research and practice.

A personalized approach empowering successful aging: Patient perspective on fall prevention education.

BACKGROUND: Falls are the leading cause of fatal injury, and the most common cause of nonfatal trauma, among older adults. However, patient perspectives on preferences for obtaining fall education are not well reported. OBJECTIVE: To identify components of successful fall prevention education. DESIGN: Prospective qualitative study. SETTING: Tertiary care center; institutional. PARTICIPANTS: Adults aged 65 years or older with a history of falls who received services from inpatient trauma or outpatient geriatric services. INTERVENTIONS: One-hour face-to-face semistructured interview. MAIN OUTCOME MEASURE: Semistructured interviews sought to determine participants' history of fall education and perceived strengths and weaknesses of various formats of fall education. RESULTS: Nearly all participants (9/10) indicated they had not received fall prevention education of any kind. Many participants (6/10) reported that, despite not receiving any formal education about falls, they had either given or received information about falls from other older adults in their communities. Participants indicated that framing fall education as a part of healthy aging would be more desirable and mentioned involving participants' families as part of the education. The majority of participants (7/10) suggested fall education be delivered through in-person discussion with providers, and most (9/10) indicated this would provide a personalized approach with opportunity for questions. Participants specified fall education should consist of both environmental modifications (5/10) and awareness of one's surroundings (4/10). CONCLUSIONS: Despite histories of falls, nearly all participants reported they had not received formal fall education. However, many indicated they received fall information informally through their communities. Participants agreed successful fall prevention education would be delivered in an empowering way by a trusted member of the care team.

Characteristics of Sexual and Gender Minority Caregivers of People With Dementia.

Objectives: Given what little is known about the experiences of sexual and gender minority (SGM) caregivers of people with Alzheimer's disease and related dementias (ADRD), the aim of the current study was to describe psychosocial measures among these caregivers. Methods: We used an online survey and social media recruitment strategies. Results: Of 286 caregivers, the majority were gay men. Most respondents were white, with a third identifying as Latino American. The plurality of caregivers identified as a spouse/partner and were providing care for someone who identified as a sexual minority; one-fifth cared for someone transgender. Sexual orientation, perceived stress, caregiver stigma, and microaggressions were psychosocial factors associated with family quality of life and depressive symptoms in the caregivers. Discussion: This study is the first to provide a focused description of the characteristics and psychosocial needs of SGM caregivers of someone with ADRD, supporting development of targeted interventions for this population.

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).

Race-Related Differences Between and Within Sex to Experimental Thermal Pain in Middle and Older Adulthood: An Exploratory Pilot Analysis.

This brief report details a pilot analysis conducted to explore racial differences in pain sensitivity and unpleasantness between cognitively healthy Black and White adults, stratified by sex. A total of 24 cognitively healthy adults (12 Black and 12 White) from two completed studies were matched by age and sex, and divided into two groups based on race. Stratified analyses by sex demonstrated that Black females reported experiencing pain intensity ratings of all three intensity sensations at lower temperatures than White females. These findings will inform future research studies to determine if these results hold true in a fully-powered sample and should include mixed methodologies, incorporating neuroimaging data to further assess this phenomenon. Improving pain assessment and management across racial/ethnic groups will help healthcare providers such as nurses and physicians to ensure optimal quality of life for all.

Development and Validation of the Family Quality of Life in Dementia Scale.

BACKGROUND AND OBJECTIVES: People with Alzheimer's disease and related dementias (ADRD) exhibit losses in daily function, as well as behavioral and psychological symptoms, that place a great deal of burden on family caregivers and exert a major influence on the quality of life of these individuals and their families. Despite years of intervention research in the field, there are few studies related to the impact of providing care for a person with ADRD on the family as the unit of analysis. While numerous findings have reported the effects of the chronic stress of caregiving for an individual, analysis of family quality of life is a concept that has been generally overlooked in the ADRD field. The purpose of the present study was to develop and test the Family Quality of Life in Dementia (FQOL-D) scale. RESEARCH DESIGN AND METHODS: Face validity was obtained via a Delphi survey of a multidisciplinary team of dementia providers and researchers; initial psychometric evaluation of the instrument was obtained via family respondents (N = 244). RESULTS: Internal consistency and reliability were established for the instrument. The FQOL-D scale exhibited excellent factorability and concurrent validity with existing scales assessing family psychosocial measures. DISCUSSION AND IMPLICATIONS: The initial psychometric testing of the FQOL-D instrument is favorable. Additional use of the FQOL-D instrument in health care settings is warranted to evaluate further the clinical utility of the instrument.

Mindfulness in Motion and Dietary Approaches to Stop Hypertension (DASH) in Hypertensive African Americans.

OBJECTIVES: Hypertension increases the risk of developing Alzheimer's disease or related dementias. This pilot study's purpose was to examine the feasibility and acceptability of a novel intervention, Mindfulness in Motion (MIM) and Dietary Approaches to Stop Hypertension DASH (MIM DASH), to improve diet, mindfulness, stress, and systolic blood pressure (BP) in older African Americans with mild cognitive impairment (MCI) and hypertension. DESIGN: Cluster randomized controlled trial. SETTING: Intergenerational community center in a large metropolitan area. PARTICIPANTS: African Americans with MCI and hypertension. Participants were divided into six groups randomized 1:1:1 to the MIM DASH group, attention only (non-hypertensive education) group, or true control group. The MIM DASH and attention only interventions were delivered in 8-weekly 2 hour group sessions. MIM included mindful movements from chair/standing, breathing exercises, and guided meditation. The DASH component used a critical thinking approach of problem solving, goal setting, reflection, and self-efficacy. The true control group received a DASH pamphlet at the end. MEASUREMENTS: Feasibility was tracked through enrollment and attendance records; acceptability was assessed through interviews. Blood pressure was measured using the Omron HEM-907XL Monitor. Dietary intake was measured by DASH-Q. Mindfulness was measured by the Cognitive and Affective Mindfulness Scale. Stress was measured by the Perceived Stress Scale. MCI was determined using the Self-Administered Gerocognitive Examination. Data were collected at baseline and 3-months. RESULTS: Median session attendance was six for the MIM DASH group and six for the attention only group. There were no changes in diet, mindfulness, or stress. There was a clinically significant reduction in systolic BP in the MIM DASH group (-7.2 mmHg) relative to the attention only group (-.7), and no change between the MIM DASH and true control groups. CONCLUSION: Results indicate that the MIM DASH intervention was feasible and culturally acceptable in African Americans with hypertension and MCI.

The Rose-Colored Glasses of Geriatric Fall Patients: Inconsistencies Between Knowledge of Risk Factors for and Actual Causes of Falls.

BACKGROUND: Falls are the leading cause of fatal injury, and most common cause of non-fatal trauma, among older adults. We sought to elicit older patient's perspectives on fall risks for the general population as well as contributions to any personal falls to identify opportunities to improve fall education. METHODS: Ten patients with a history of falls from inpatient trauma and outpatient geriatric services were interviewed. Transcripts were analyzed independently by five individuals using triangulation and constant comparison (NVivo11, QSR International) to compare fall risks to fall causes. RESULTS: All patients reported that either they (9/10 participants) or someone they knew (8/10) had fallen. Despite this, only two personally worried about falling. Patient perceptions of fall risks fell into seven major themes: physiologic decline (8/10); underestimating limitations (7/10); environmental hazards (7/10), lack of awareness/rushing (4/10), misuse/lack of walking aids (3/10); positional transitions (2/10), and improper footwear (1/10). In contrast, the most commonly reported causes of personal falls were lack of awareness/rushing (7/10), environmental hazards (3/10), misuse/lack of walking aids (2/10), improper footwear (2/10), physiologic decline (2/10), underestimating limitations (1/10) and positional transitions (1/10). In general tended to attribute their own falls to their surroundings and were less likely to attribute physical or psychological limitations. CONCLUSION: Despite participants identifying falls as a serious problem, they were unlikely to worry about falling themselves. Participants were able to identify common fall risks. However, when speaking about personal experience, they were more likely to blame environmental hazards or rushing, and minimized the role of physiologic decline and personal limitations.

"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.