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.].

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.

Developing an Age-Friendly University (AFU) audit: A pilot study.

The University of Massachusetts Boston endorsed the Age Friendly University (AFU) principles in 2017, becoming the second campus in the Commonwealth to join the AFU movement. In order to demonstrate what it means to become an AFU, a research team worked to audit the University's level of age-friendliness. A workgroup of 12 volunteers from across campus departments and constituencies was convened in 2018 to operationalize the 10 principles with the goal of designing an audit tool and then piloting the tool. Nineteen key informants were interviewed representing a wide range of campus life including administration, career counseling, advising, communications, student life, campus services, distance education, and health and wellness services. Major themes emerged related to educational programming, accessibility and inclusivity. The importance of conducting an audit was demonstrated in the opportunities it presented to increase awareness among diverse stakeholders who comprise a campus community about making the vision of age-friendliness a reality.

Care Plan Standardization for Older Adults: Opportunities for Nursing Leadership.

Care plans guide and document achievement of short- and long-term goals. However, most care plans are discipline oriented, document medical problems, and lack person-centered information such as care preferences. The current authors' goal was to explore the status of comprehensive care plans and the future application of sharing data among health care providers and settings. Semi-structured interviews were conducted among a variety of professionals in six geographically diverse settings to learn the status and performance of care plans. Various biases, regular and irregular omissions, and lack of long-term perspectives in the care plan generation processes were found. These deficits support the need for developing comprehensive standardized care plans to improve access, coordination, and quality of care for older adults. Nurses are in an ideal position to lead local, state, and national initiatives to drive policies for comprehensive care plans that will improve access to and quality of care delivery to older adults. [Journal of Gerontological Nursing, 44(12), 11-16.].

Implementing the MOLST (medical orders for life-sustaining treatments): Challenges faced by nursing home staff.

This study examined how the Medical Orders for Life-sustaining Treatment (MOLST) is implemented in two nursing homes in Massachusetts; one had primarily long-term care residents and high hospice utilization, the other had low hospice utilization and a high proportion of post-acute care residents. Qualitative in-person interviews with 21 staff members who had a role implementing the MOLST explored their experiences using the form in their daily work routines. Staff at both nursing homes described benefits of the MOLST such as providing guidance for staff and family. Yet, they also gave detailed accounts of challenges they face in implementing the form. They reported problems with the form itself such as confusing language and conflicting categories as well as a set of procedural challenges that undermined the timely completion of the form. The nursing home with more post-acute care residents faced more challenges with transferability of the MOLST to and from hospitals.

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.

Facility Characteristics Associated With Intensity of Care of Nursing Homes and Hospital Referral Regions.

OBJECTIVES: Intensity of care, such as hospital transfers and tube feeding of residents with advanced dementia varies by nursing home (NH) within and across regions. Little work has been done to understand how these 2 levels of influence relate. This study's objectives are to identify facility factors associated with NHs providing high-intensity care to residents with advanced dementia and determine whether these factors differ within and across hospital referral regions (HRRs). DESIGN: Cross-sectional analysis. SETTING AND PARTICIPANTS: 1449 NHs. METHODS: Nationwide 2016-2017 Minimum Data Set was used to categorize NHs and HRRs into 4 levels of care intensity based on rates of hospital transfers and tube feeding among residents with advanced dementia: low-intensity NH in a low-intensity HRR, high-intensity NH in a low-intensity HRR, low-intensity NH in a high-intensity HRR, and a high-intensity NH in a high-intensity HRR. RESULTS: In high-intensity HRRs, high-vs low-intensity NHs were more likely to be urban, lack a dementia unit, have a nurse practitioner or physician (NP or PA) on staff, and have a higher proportion of residents who were male, aged <65 years, Black, had pressure ulcers, and shorter hospice stays. In low-intensity HRRs, higher proportion of Black residents was the only characteristic associated with being a high-intensity NH. CONCLUSIONS AND IMPLICATIONS: These findings suggest that within high-intensity HRRs, there are potentially modifiable factors that could be targeted to reduce burdensome care in advanced dementia, including having a dementia unit, palliative care training for NPs and PAs, and increased use of hospice care.

Provider adherence to training components from the Trial to Reduce Antimicrobial use In Nursing home residents with Alzheimer's disease and other Dementias (TRAIN-AD) intervention.

Background: The Trial to Reduce Antimicrobial use In Nursing home residents with Alzheimer's disease and other Dementias (TRAIN-AD) was a cluster randomized clinical trial evaluating a multicomponent program to improve infection management among residents with advanced dementia. This report examines facility and provider characteristics associated with greater adherence to training components of the TRAIN-AD intervention. Methods: Logistic regression was used to identify facility and provider characteristics associated with: 1. Training seminar attendance, 2. Online course completion, and 3. Overall adherence, defined as participation in neither seminar nor course, either seminar or course, or both seminar and course. Results: Among 380 participating providers (nurses, N = 298; prescribing providers, N = 82) almost all (93%) participated in at least one training activity. Being a nurse was associated with higher likelihood of any seminar attendance (adjusted odds ratio (AOR) 5.37; 95% confidence interval (CI), 2.80-10.90). Providers who were in facilities when implementation begun (AOR, 3.01; 95% CI, 1.34-6.78) and in facilities with better quality ratings (AOR, 2.70; 95% CI, 1.59-4.57) were more likely to complete the online course. Prevalent participation (AOR, 2.01; 95% CI, 1.02-3.96) and higher facility quality (AOR, 2.44; 95% CI, 1.27-4.66) were also significantly associated with greater adherence to either seminar or online course. Conclusion: TRAIN-AD demonstrates feasibility in achieving high participation among nursing home providers in intervention training activities. Findings also suggest opportunities to maximize adherence, such as enhancing training efforts in lower quality facilities and targeting of providers who join the facility after implementation start-up.

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.

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.

Factors Associated With Antimicrobial Use in Nursing Home Residents With Advanced Dementia.

OBJECTIVES: Widespread antimicrobial misuse among nursing home (NH) residents with advanced dementia raises concerns regarding the emergence of multidrug-resistant organisms and avoidable treatment burden in this vulnerable population. The objective of this report was to identify facility and resident level characteristics associated with receipt of antimicrobials in this population. DESIGN: Cross-sectional analysis of baseline data from the Trial to Reduce Antimicrobial use in Nursing home residents with Alzheimer's disease and other Dementias (TRAIN-AD). SETTING AND PARTICIPANTS: Twenty-eight Boston area NHs, 430 long stay NH residents with advanced dementia. MEASURES: The outcome was the proportion of residents who received any antimicrobials during the 2 months prior to the start of TRAIN-AD determined by chart review. Multivariable logistic regression was used to identify resident and facility characteristics associated with this outcome. RESULTS: A total of 13.7% of NH residents with advanced dementia received antimicrobials in the 2 months prior to the start of TRAIN-AD. Residents in facilities with the following characteristics were significantly more likely to receive antimicrobials: having a full time nurse practitioner/physician assistant on staff [adjusted odds ratio (aOR) 3.02; 95% confidence interval (CI), 1.54, 5.94], fewer existing infectious disease practices (eg, antimicrobial stewardship programs, established algorithms for infection management) (aOR, 2.35; 95% CI 1.14, 4.84), and having fewer residents with severely cognitively impaired residents (aOR 1.96; 95% CI 1.12, 3.40). No resident characteristics were independently associated with receipt of antimicrobials. CONCLUSIONS AND IMPLICATIONS: Facility-level characteristics are associated with the receipt of antimicrobials among residents with advanced dementia. Implementation of more intense infectious disease practices and targeting the prescribing practices of nurse practitioners/physician assistants may be critical targets for interventions aimed at reducing antimicrobial use in this population.

ADVANCE: Methodology of a qualitative study.

BACKGROUND/OBJECTIVES: Quantitative studies have documented persistent regional, facility, and racial differences in the intensity of care provided to nursing home (NH) residents with advanced dementia including, greater intensity in the Southeastern United States, among black residents, and wide variation among NHs in the same hospital referral region (HRR). The reasons for these differences are poorly understood, and the appropriate way to study them is poorly described. DESIGN: Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) is a large qualitative study to elucidate factors related to NH organizational culture and proxy perspectives contributing to differences in the intensity of advanced dementia care. Using nationwide 2016-2017 Minimum DataSet information, four HRRs were identified in which the relative intensity of advanced dementia care was high (N = 2 HRRs) and low (N = 2 HRRs) based on hospital transfer and tube-feeding rates among residents with this condition. Within those HRRs, we identified facilities providing high (N = 2 NHs) and low (N = 2 NHs) intensity care relative to all NHs in that HRR (N = 16 total facilities; 4 facilities/HRR). RESULTS/CONCLUSIONS: To date, the research team conducted 275 h of observation in 13 NHs and interviewed 158 NH providers from varied disciplines to assess physical environment, care processes, decision-making processes, and values. We interviewed 44 proxies (black, N = 19; white, N = 25) about their perceptions of advance care planning, decision-making, values, communication, support, trust, literacy, beliefs about death, and spirituality. This report describes ADVANCE study design and the facilitators and challenges of its implementation, providing a template for the successful application of large qualitative studies focused on quality care in NHs.