Dementia is a stigmatizing condition requiring enhanced awareness and understanding. Churches are a trusted source of support for African Americans, a demographic disproportionately affected by dementia. However, many African American churches are not equipped with the knowledge and means to provide safe environments, resources, and spiritual and social support for their parishioners living with dementia and their families. This protocol is written to detail the design and implementation of a nurse-led, dementia-friendly congregation program, Alter. The Alter program was developed to increase dementia awareness, develop a supportive, faith-based dementia-friendly infrastructure, and create a community supporting the well-being of African Americans living with dementia and their families. Engagement in this program aims to improve brain health status of older adults, improve physical and mental health outcomes, reduce dementia stigma, and enhance personal agency. Improved outcomes for persons living with dementia translate into lower use of acute and emergency services due to more stability in community care. It is expected that the churches participating in this program will be recognized by their community as a great resource for dementia information and support. The long-term goal of the Alter program is to be widely adapted in various health systems to reduce health disparities associated with dementia in the African American community.
Stress has become a significant factor, directly affecting human health. Due to the numerous sources of stress that are inevitable in daily life, effective management of stress is essential to maintain a healthy life. Recent advancements in wearable devices allow monitoring stress levels via the detection of galvanic skin response on the skin. Some of these devices show the capability of assessing stress relief methods. However, prior works have been limited in a controlled laboratory setting with a short period assessment (<1 h) of stress intervention. The existing systems' main issues include motion artifacts and discomfort caused by rigid and bulky electronics and mandatory device connection on active fingers. Here, we introduce soft, wireless, skin-like electronics (SKINTRONICS) that offers continuous, portable daily stress and management practice monitoring. The ultrathin, lightweight, all-in-one device captures the change of a subject's stress over six continuous hours during everyday activities, including desk work, cleaning, and resting. At the same time, the SKINTRONICS proves that typical stress alleviation methods (mindfulness and meditation) can reduce stress levels, even in the middle of the day, which is supported by statistical analysis. The low-profile, wireless, gel-free device shows enhanced breathability and minimized motion artifacts compared to a commercial stress monitor. Collectively, this study shows the first demonstration of soft, nanomembrane bioelectronics for long-term, continuous assessment of stress and intervention effectiveness throughout daily life.
Background/Objectives: Studies of interpersonal trust within nursing homes (NHs) is limited. This study aimed to describe the perspectives of interpersonal trust in NH staff among family caregivers of residents with advanced dementia. Additionally, comparisons of Black and White caregivers' perspectives were also explored. Design: We used data generated from a parent study, Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) to examine the experience of trust from the family caregivers’ perspectives. Participants: Data generated from interviews with 44 family caregivers of residents with advanced dementia (Black n = 19 and White n = 25) were analyzed using thematic analysis. Results/Conclusions: While both Black and White family caregivers experienced trust and mistrust, Black caregivers more often experienced differential mistrust. As differential mistrust is a new concept relative to trust, additional research is required to elucidate its meaning. Design: We used data generated from a parent study, Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) to examine the experience of trust from the family caregivers’ perspectives. Participants: Data generated from interviews with 44 family caregivers of residents with advanced dementia (Black n = 19 and White n = 25) were analyzed using thematic analysis. Results/Conclusions: While both Black and White family caregivers experienced trust and mistrust, Black caregivers more often experienced differential mistrust, trust for certain staff members and mistrust of others. As differential mistrust is a new concept relative to trust, additional research is required to elucidate its meaning.
Dementia caregivers are responsible for the daily care and management of individuals who are among the most vulnerable to the serious consequences of COVID-19. This qualitative study explores the experience of Black dementia caregivers during the COVID-19 pandemic in the United States. Nineteen Black dementia caregivers were recruited to participate in semi-structured focus groups held in April 2021. Four overarching themes were constructed during analysis: social isolation, decreased well-being, the good and bad of telehealth, and challenges fulfilling health care needs. The results indicate the experience of Black dementia caregivers overlaps with existing literature on the experiences of dementia caregivers of other races during COVID-19. These results can assist in addressing the specific needs and improving the experiences of dementia caregivers in current and future public health crises.
Background and Objectives: Family caregivers will grow in number as dementia prevalence increases, underscoring the continued importance of equipping these individuals for their new roles and ameliorating the adverse effects of caregiving. Research Design and Methods: A three-armed, waitlist, randomized trial design tested Tele-Savvy, an online adaptation of a successful in-person psychoeducation program, the Savvy Caregiver. Tele-Savvy is delivered over 43 days to groups of 6-8 caregivers in 7 weekly synchronous sessions accompanied by 36 brief asynchronous video lessons. We enrolled 23 cohorts of 15 eligible caregivers (N = 261), randomized 2:2:1 to active, attention control, and usual care arms. We assessed caregiver psychological well-being and caregiving mastery at baseline and 3, 6, 9, and 12 months. Multilevel linear models assessed outcomes over the 3 time points examined. The trial was slightly truncated, with Data and Safety Monitoring Board approval, because of the apparent confounding psychological effects of coronavirus disease 2019 restrictions. Results: Study findings indicate statistically and clinically significant benefits to Tele-Savvy arm caregivers (with moderate to large effect sizes) in the areas of depression, perceived stress, reaction to care recipients' behaviors, and enhancement of caregiver mastery. Expected benefits for caregiver burden and anxiety were not found. Discussion and Implications: Findings attest to program efficacy and the viability of employing distance means to improve family caregivers' emotional well-being and sense of mastery in the caregiving role over a 6-month period. Next steps entail finding alternate ways to deliver the program to those with connectivity and/or time constraint problems.
Alzheimer’s disease and related dementias (ADRDs) have a significant impact on families. Family nurses are in an ideal position to address the needs of families affected by ADRD. However, to be most effective, family nurses and researchers need culturally appropriate theories to guide practice and research. On November 17, 2018, five nurse researchers presented findings of their research with African American families at the Gerontological Society of America’s annual meeting. The results reported and the lively discussion that ensued suggested that the current paradigms framing research and practice with African American families affected by ADRD may not be adequate. There is a need to consider culturally congruent, family-centered theories to guide research and practice with this population of families.
The "Great Village," a cultural adaptation of a psychoeducation intervention the “Savvy Caregiver” for African American caregivers of persons living with dementia (PLwD), aims to develop caregivers’ skills and improve the quality of the lives of both the PLwD and their caregivers. The goal of this study was to determine the effectiveness of the Great Village on depressive symptoms, anxiety, burden, and mastery in African American caregivers (N = 142). A three-arm randomized control trial (Great Village, Great Village + exercise, and attention control) was conducted over a period of 6 months. Caregivers who received either Great Village or Great Village + exercise reported significant reduction in depressive symptoms and improvement in mastery. Caregivers who received only Great Village reported a reduction in anxiety. Receiving no intervention worsened caregiver burden. African American caregivers should receive culturally tailored interventions to support their health and well-being and improve their competence in caregiving.
by
Candance L Kemp;
Alexis Bender;
Joy Ciofi;
Jennifer Craft Morgan;
Elisabeth O Burgess;
Stephen Duong;
Fayron Epps;
Andrea Michelle Hill;
Pamela R Manley;
Jasmine Sease;
Molly Perkins
Meaningful engagement is an important dimension of quality of life and care for persons living with dementia, including the growing number who reside in assisted living communities. This report presents preliminary findings from an ongoing qualitative study aimed at identifying best care practices to create and maintain meaningful engagement among persons with dementia. Over a 1-year period, we conducted interviews, residents’ record review, and participant observations in four diverse care communities. Our analysis identified four approaches that successfully promote meaningful engagement: (a) knowing the person, (b) connecting with and meeting people where they are, (c) being in the moment, and (d) viewing all encounters as opportunity. Incorporation of these approaches in care routines and adoption by all care partners can promote meaningful engagement, including during crises such as COVID-19.
There is limited research exploring how daily and formal care decision making occurs within African American dementia dyads as well as how these dyads navigate decision making across the dementia trajectory. Through semi-structured interviews, five African American dementia dyads shared their decision-making processes. We used a multimethod approach to the analysis of data, including qualitative and quantitative content analysis and the creation of I Poems. This novel use of I Poems provided a uniquely personal account of the lived experiences of the African American persons living with dementia, while other analyses revealed that within dyads, daily care decision making was led by African American persons living with dementia, whereas formal care decision making varied between dyads. There was intra-dyad congruence regarding who the final decision maker was in daily and formal care. Clinicians and researchers may be able to tailor interventions based on the dyad's involvement in these decision-making processes.
Introduction: Alzheimer's disease and other dementia-related disorders are affecting the African-American community at alarming rates. African-American churches have traditionally been places of refuge where families go for support. However, many churches lack programs or resources to support families affected by dementia. In response, a nurse-led interdisciplinary collaborative partnered with churches to promote dementia awareness through education. Purpose: The purpose of this analysis was to (a) describe the demographics of those seeking dementia education in African-American faith communities; (b) identify prior knowledge of dementia community resources; and (c) determine the preliminary usefulness of the education provided. Methods: Over the course of 16 months, 202 individuals attended nine educational sessions hosted by five churches across metropolitan Atlanta. Quantitative surveys were used to collect demographics and evaluate the educational sessions. Results: The majority of attendees were African-American adults (91%), women (75%), and unaware of dementia resources (66%). Several attendees identified themselves as church leaders, community/church members, caregivers, and/or healthcare professionals. Attendees expressed the educational content was applicable to themselves or their families. Conclusion: Results help identify ways to alter and/or strengthen the educational content and serve as a guide for developing culturally relevant, faith-based community programs.