Family Involvement in the Care of Nursing Home Residents With Dementia: A Scoping Review.

Family members are involved in the lives of older adults with dementia in complex ways. This scoping review synthesizes existing research on family involvement in the care of nursing home residents with advanced dementia. Using the Arksey and O'Malley scoping review framework, electronic searches of PubMed, EBSCO's CINAHL Complete, and APA PsychInfo on the Ovid platform were conducted. Twenty-eight studies met inclusion criteria. Emergent themes and definitions of involvement were obtained through thematic analysis, including: (1) contact (through visitation, calling, or writing letters); (2) engagement in care activities (instrumental/activities of daily living); (3) planning and monitoring care (being aware of health and treatment changes, partnership with care staff, ensuring adequate care, and decision-making); and (4) supporting the resident (advocacy, socioemotional support, and financial support). Moreover, limited psychometrically sound instruments exist to measure family involvement. These limitations stall the progression of research targeting family involvement.

Staff and Proxy Views of Multiple Family Member Involvement in Decision Making for Nursing Home Residents With Advanced Dementia.

Decision making for nursing home (NH) residents with Alzheimer disease and related dementias often involves input from multiple family members and NH staff to address goals of care at the end of life. Using data from the Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life research study, a secondary analysis of qualitative data was conducted involving interviews of 144 NH staff and 44 proxies in 14 NHs to examine the perspectives of NH staff and proxies for NH residents with Alzheimer disease and related dementias on the involvement of multiple family members in decision making about end-of-life care decisions. Interviews took place between 2018 and 2021. Nursing home staff and proxies had differing perspectives of the involvement of multiple family members in decision making, with NH staff primarily viewing families as a source of conflict, whereas proxies viewed families as a source of support. Nursing home staff also had differing opinions of their role with families; some attempted to ameliorate conflict, and some did not get involved. Some NH staff felt that Black families had more conflict than White families, indicating unacceptable bias and stereotyping of Black families by NH staff. These findings suggest training and education is needed for NH staff to facilitate better communication with families and to support proxies in end-of-life decision making to address goals of care for NH residents with Alzheimer disease and related dementias.

Black and white proxy experiences and perceptions that influence advanced dementia care in nursing homes: The ADVANCE study.

BACKGROUND: Regional, facility, and racial variability in intensity of care provided to nursing home (NH) residents with advanced dementia is poorly understood. MATERIALS AND METHODS: Assessment of Disparities and Variation for Alzheimer's disease NH Care at End of life (ADVANCE) is a multisite qualitative study of 14 NHs from four hospital referral regions providing varied intensity of advanced dementia care based on tube-feeding and hospital transfer rates. This report explored the perceptions and experiences of Black and White proxies (N = 44) of residents with advanced dementia to elucidate factors driving these variations. Framework analyses revealed themes and subthemes within the following a priori domains: understanding of advanced dementia and care decisions, preferences related to end-of-life care, advance care planning, decision-making about managing feeding problems and acute illness, communication and trust in NH providers, support, and spirituality in decision-making. Matrix analyses explored similarities/differences by proxy race. Data were collected from June 1, 2018 to July 31, 2021. RESULTS: Among 44 proxies interviewed, 19 (43.1%) were Black, 36 (81.8%) were female, and 26 (59.0%) were adult children of residents. In facilities with the lowest intensity of care, Black and White proxies consistently reported having had previous conversations with residents about wishes for end-of-life care and generally better communication with providers. Black proxies held numerous misconceptions about the clinical course of advanced dementia and effectiveness of treatment options, notably tube-feeding and cardiopulmonary resuscitation. Black and White proxies described mistrust of NH staff but did so towards different staffing roles. Religious and spiritual beliefs commonly thought to underlie preferences for more intense care among Black residents, were rarely, but equally mentioned by race. CONCLUSIONS: This report refuted commonly held assumptions about religiosity and spirituality as drivers of racial variations in advanced dementia care and revealed several actionable facility-level factors, which may help reduce these variations.

Systematic Review Revisited, 2010-2020: The Effect on Surrogates of Making Treatment Decisions for Others.

Objectives: This study mapped research evidence spanning the last 10 years to identify the effect of being a surrogate decision maker for an incapacitated adult. Methods: A scoping review strategy was employed to allow for a focus on the breadth of the effect of surrogate decision making and to identify gaps in the existing research literature. Results: Surrogate decision making created emotional distress and burden for the majority of the SDMs. We found the negative effects on SDMs were linked to variety of stressors: fear of not knowing what the patient would want or being unable to fulfill the patient's actual or perceived wishes, feeling unprepared to assume the role of a SDM, and watching a loved one's health deteriorate over time. Discussion: Additional research is needed to elucidate the emotional burden of culturally diverse SDMs to determine their differences when compared to various groups.

ADVANCE-C: A Qualitative Study of Experiences Caring for Nursing Home Residents with Advanced Dementia During the COVID-19 Pandemic.

OBJECTIVES: Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) is a multisite qualitative study of regionally diverse Nursing homes (NHs; N = 14) providing varied intensity of advanced dementia care. ADVANCE-C explored the experiences of NH staff and proxies during the COVID-19 pandemic. METHODS: Data collection occurred in five of the ADVANCE facilities located in Georgia (N = 3) and New York (N = 2). Semistructured qualitative interviews with NH staff (N = 38) and proxies of advanced dementia residents (N = 7) were conducted. Framework analyses explored five staff domains: care processes, decision making, organizational resources, vaccinations, and personal experience, and five proxy domains: connecting with residents, NH response, communicating with NH, decision making, and personal impact of the pandemic. RESULTS: Staff mentioned difficulties implementing infection control policies specifically for advanced dementia residents. Staff reported trust between the facility and proxies as critical in making decisions during the pandemic. All staff participants spoke about "coming together" to address persistent staffing shortages. Proxies described their role as an "emotional rollercoaster," emphasizing how hard it was being separate from their loved ones. The accommodations made for NH residents were not beneficial for those with advanced dementia. The majority of proxies felt NH staff were doing their best and expressed deep appreciation for their care. DISCUSSION: Caring for advanced dementia residents during the COVID-19 pandemic had unique challenges for both staff and proxies. Strategies for similar future crises should strive to balance best practices to contain the virus while maintaining family connections and person-centered care.

Nursing Home Staff Perceptions of End-of-Life Care for Residents With Advanced Dementia: A Multisite Qualitative Study.

Nursing homes (NHs) are an important site of death for residents with advanced dementia. Few studies have explored the experiences of NH staff about providing end-of-life care for residents with advanced dementia. This study aimed to describe NH staff perceptions on where end-of-life care should be delivered, the role of Medicare hospice care, and their experiences providing end-of-life care to residents with advanced dementia. Data from the Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life study were used to explore the study objectives. Semistructured interviews with 158 NH staff working in 13 NHs across the United States were analyzed. Most NH staff endorsed the NH as a better site of death for residents with advanced dementia compared with a hospital. They expressed mixed perceptions about hospice care. However, regardless of their role, the staff expressed experiencing difficult emotions while providing end-of-life care to residents with dementia because of the close attachments they had formed with them and bearing witness to their decline. The findings show that most NH staff have strong emotional attachments to their dying residents with dementia and prefer to care for them at the NH rather than transfer them to the hospital.

Guilt as an Influencer in End-of-Life Care Decisions for Nursing Home Residents With Advanced Dementia.

The concept of guilt has been studied in the context of caregivers of older adults with advanced dementia, usually describing the feelings a person has of placing a loved one in a long-term care facility; however, little research has been done to understand how nursing home staff and proxies for older adults with dementia describe guilt as a decision-influencer in end-of-life care. For the current study, private, semi-structured interviews were conducted with 158 nursing home staff and 44 proxies in 13 nursing homes across four demographic regions in the United States. Interviews were reviewed and analyzed for how the concept of guilt was perceived as a decision-influencer. Nursing home staff described guilt as an important influencer in why proxies make decisions about end-of-life care. Staff noted that proxies who felt guilty about their relationship with their loved one or lack of time spent at end-of-life tended to be more aggressive in care decisions, whereas no proxies mentioned guilt as an influencer in care decisions. Rather, proxies used language of obligation and commitment to describe why they make decisions. Findings highlight the disconnect between nursing home staff and proxies in what motivates proxies to make end-of-life decisions for loved ones. Nursing home staff should be aware of misconceptions about proxies and work to understand proxies' true rationale and motivations for making care decisions. [Journal of Gerontological Nursing, 48(1), 22-27.].

Association of Nursing Home Organizational Culture and Staff Perspectives With Variability in Advanced Dementia Care: The ADVANCE Study.

IMPORTANCE: Regional, facility, and racial and ethnic variability in intensity of care provided to nursing home residents with advanced dementia is well documented but poorly understood. OBJECTIVE: To assess the factors associated with facility and regional variation in the intensity of care for nursing home residents with advanced dementia. DESIGN, SETTING, AND PARTICIPANTS: In the ADVANCE (Assessment of Disparities and Variation for Alzheimer Disease Nursing Home Care at End of Life) qualitative study, conducted from June 1, 2018, to July 31, 2021, nationwide 2016-2017 Medicare Minimum Data Set information identified 4 hospital referral regions (HRRs) with high (n = 2) and low (n = 2) intensity of care for patients with advanced dementia based on hospital transfer and tube-feeding rates. Within those HRRs, 14 facilities providing relatively high-intensity and low-intensity care were recruited. A total of 169 nursing home staff members were interviewed, including administrators, directors of nursing, nurses, certified nursing assistants, social workers, occupational therapists, speech-language pathologists, dieticians, medical clinicians, and chaplains. MAIN OUTCOMES AND MEASURES: Data included 275 hours of observation, 169 staff interviews, and abstraction of public nursing home material (eg, websites). Framework analyses explored organizational factors and staff perceptions across HRRs and nursing homes in the following 4 domains: physical environment, care processes, decision-making processes, and implicit and explicit values. RESULTS: Among 169 staff members interviewed, 153 (90.5%) were women, the mean (SD) age was 47.6 (4.7) years, and 54 (32.0%) were Black. Tube-feeding rates ranged from 0% in 5 low-intensity facilities to 44.3% in 1 high-intensity facility, and hospital transfer rates ranged from 0 transfers per resident-year in 2 low-intensity facilities to 1.6 transfers per resident-year in 1 high-intensity facility. The proportion of Black residents in facilities ranged from 2.9% in 1 low-intensity facility to 71.6% in 1 high-intensity facility, and the proportion of Medicaid recipients ranged from 45.3% in 1 low-intensity facility to 81.3% in 1 high-intensity facility. Factors distinguishing facilities providing the lowest-intensity care from those providing the highest-intensity care facilities included more pleasant physical environment (eg, good repair and nonmalodorous), standardized advance care planning, greater staff engagement in shared decision-making, and staff implicit values unfavorable to tube feeding. Many staff perceptions were ubiquitous (eg, adequate staffing needs), with no distinct pattern across nursing homes or HRRs. Staff in all nursing homes expressed assumptions that proxies for Black residents were reluctant to engage in advance care planning and favored more aggressive care. Except in nursing homes providing the lowest-intensity care, many staff believed that feeding tubes prolonged life and had other clinical benefits. CONCLUSIONS AND RELEVANCE: This study found that variability in the care of patients with advanced dementia may be reduced by addressing modifiable nursing home factors, including enhancing support for low-resource facilities, standardizing advance care planning, and educating staff about evidence-based care and shared decision-making. Given pervasive staff biases toward proxies of Black residents, achieving health equity for nursing home residents with advanced dementia must be the goal behind all efforts aimed at reducing disparities in their care.

Trust of Nursing Home Staff Caring for Residents with Advanced Dementia: A Qualitative Descriptive Study of Family Caregivers' Perspectives.

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.

Psychometric Properties of the Chinese Version of the Surrogate Decision-Making Self-Efficacy Scale.

Surrogate decision making for patients in the intensive care unit (ICU) can have negative physical and emotional health consequences for the decision-maker. Improving confidence and self-efficacy may reduce these consequences, but a valid instrument is necessary for reliable measurement. Using a cross-sectional design, the current study aimed to translate the Surrogate Decision-Making Self-Efficacy Scale (SDM-SES) into Chinese and evaluate its psychometric properties for surrogate decision-makers (SDMs) of patients in the ICU. The English version of the SDM-SES was translated into Chinese according to Brislin's translation guidelines and tested in 107 Chinese SDMs of patients in the ICU. Cronbach's alpha coefficient was 0.86, and a confirmatory factor analysis yielded acceptably high goodness-of-fit. Scores of the Chinese version of the SDM-SES were positively correlated with General Self-Efficacy Scale scores and 10-item Connor-Davidson Resilience Scale scores. This study indicates that the Chinese version of the SDM-SES has sufficient psychometric properties for assessing self-efficacy of SDMs for patients in the ICU. [Research in Gerontological Nursing, 14(1), 17-23.].