TABLE 1 Alzheimer's Association dementia care practice recommendation domains 7 and example care and “well-being” measures Domain Example measure of care Example measure of well-being outcome ...Detection and diagnosis Make information available to older adults and family members Accept diagnosis Assessment and care planning Perform regular, comprehensive, person-centered assessments Be satisfied with care choices Medical management Create and implement a person-centered plan for possible medical and social crises Feel comfort regarding advance care planning Information, education, and support Use technology to reach more families in need of education, information, and support Experience support from persons similar to oneself Behavioral expressions Implement nonpharmacological practices that are person-centered, evidence-based, and feasible in the care setting Enjoy music during previous times of stress Activities of daily living When providing support for dressing, attend to dignity, respect, and choice; the dressing process; and the dressing environment Achieve independence in toileting Staffing/workforce Provide a thorough orientation and training program for new staff Have satisfactory relationships Supportive and therapeutic environment Create a sense of community within the care environment Experience more feelings of choice Transitions and coordination of services Ensure complete and timely communication of information between, across, and within settings Be more prepared for death In recognition of the need for improved measurement, the National Institute on Aging funded the Alzheimer's Association's LINC-AD – Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living with Alzheimer's and Dementia (LINC-AD). In both types of measures, person-centeredness is key; care provision and outcome must be relevant and important to, and desired by, persons living with dementia and their caregivers. 14,15 Measurement must reflect a strengths-based focus, moving away from the concept of dementia as a negative medicalized experience to one that reflects ongoing abilities to engage, learn, contribute, and have efficacy and quality to life. 10 Measures must capture diversity not only in terms of race, ethnicity, and sexual orientation, but also in terms of systems of care, such as for persons with no care partners, with multiple care partners, and who reside in residential care settings. In so doing, it is advisable that efforts across countries be better harmonized, including among LINC-AD, INTERDEM (Early detection and timely INTERvention in DEMentia, composed of European researchers), JPND (a global research initiative focused on neurodegenerative disease), and the US-based IMPACT Collaboratory, which aims to transform dementia care across health care systems and has its own core that focuses on pragmatic measurement related to person/patient and caregiver relevant outcomes. 16 Within the US, both LINC-AD and IMPACT welcome individuals and organizations from across the globe to access the resources on their websites and participate in their educational and networking opportunities; see https://alz.org/linc-ad/overview.asp and https://impactcollaboratory.org/.
Objectives
To develop and test the Function‐Focused Care in Assisted Living (FFC‐AL) intervention so as to alter the decline that older adults in AL experience.
Design
Cluster‐randomized controlled ...trial using repeated measures to test the effect of FFC‐AL.
Setting
Four AL facilities with at least 100 beds.
Participants
One hundred seventy‐one residents and 96 direct care workers (DCWs) were recruited. Ninety‐five of the DCWs were female (99%), and 59 were black (62%), with a mean age of 41.7 ± 13.8. The residents were mostly female (80%), white (93%), and widowed (80%), with a mean age of 87.7 ± 5.7.
Intervention
FFC‐AL included four components implemented by a research‐supported function focused‐care nurse (FFCN) and a site‐identified champion over a 12‐month period. Control sites were exposed to FFC education only.
Measurements
Outcomes for residents included psychosocial domains (mood, resilience, self‐efficacy, and outcome expectations for function and physical activity), function, gait and balance, and actigraphy. Outcomes for DCWs included knowledge, performance, and beliefs associated with FFC.
Results
DCWs in treatment sites provided more FFC by 12 months than those in control sites. Residents in treatment sites demonstrated less decline in function, a greater percentage returned to ambulatory status, and there were positive trends demonstrating more time in moderate‐level physical activity at 4 months and more overall counts of activity at 12 months than for residents in control sites.
Conclusion
Using a function‐focused approach in AL may help prevent some of the functional decline commonly noted in these settings.
Abstract Context Three important causes of death in the U.S. (cancer, congestive heart failure, and chronic obstructive pulmonary disease) are preceded by long periods of declining health; often, ...family members provide most care for individuals who are living with serious illnesses and are at risk for impaired well-being. Objectives To expand understanding of caregiver burden and psychosocial-spiritual outcomes among understudied groups of caregivers—cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers—by including differences by disease in a diverse population. Methods The present study included 139 caregiver/patient dyads. Independent variables included patient diagnosis and function; and caregiver demographics, and social and coping resources. Cross-sectional analyses examined distributions of these independent variables between diagnoses, and logistic regression examined correlates of caregiver burden, anxiety, depressive symptoms, and spiritual well-being. Results There were significant differences in patient functioning and caregiver demographics and socioeconomic status between diagnosis groups but few differences in caregiver burden or psychosocial-spiritual outcomes by diagnosis. The most robust social resources indicator of caregiver burden was desire for more help from friends and family. Anxious preoccupation coping style was robustly associated with caregiver psychosocial-spiritual outcomes. Conclusion Caregiver resources, not patient diagnosis or illness severity, are the primary correlates associated with caregiver burden. Additionally, caregiver burden is not disease specific to those examined here, but it is rather a relatively universal experience that may be buffered by social resources and successful coping styles.
Background/Objectives
Certified nursing assistants (CNAs) who work in nursing homes (NHs) face significant work and personal stress. Self‐compassion training has been shown to decrease stress ...postintervention in previous studies among healthcare providers and those in helping professions. This study examines the feasibility, acceptability, and preliminary outcomes of self‐compassion training to address CNA stress and well‐being.
Design
Pre–post intervention.
Setting
Three mid‐size, nonprofit NHs in North Carolina.
Participants
Thirty CNAs, with a mean age of 49, 96% of whom were female, and 83% black/African American.
Intervention
In one NH, participants received an 8‐week, 2.5‐h/session (20 h total) group intervention. At the time of recruitment for NHs 2 and 3, a briefer format (6‐week, 1‐h/session; 6 h total) became available and was preferred by CNAs, thus both NHs 2 and 3 participants received a 6‐h group intervention. All interventions occurred in meeting rooms within participating NHs during shift changes.
Measurements
Intervention attendance, retention, and acceptability; self‐compassion, stress, burnout, depression, and attitudes toward residents with dementia, and job satisfaction pre‐, post‐, 3‐month post‐, and 6‐month postintervention were assessed.
Results
Attendance and program satisfaction were high, and attrition was low for both training formats. Self‐compassion was significantly improved at all time periods (p < 0.001), and stress and depression improved significantly through 3 months (p < 0.05), but not 6 months. No statistically significant change in job satisfaction was noted.
Conclusion
Self‐compassion interventions are feasible and acceptable for CNAs working in NHs and show promise for managing stress and improving well‐being and compassion toward residents. The briefer 6‐h format may maximize participation, while still providing benefits.
Objectives
To determine whether antibiotic prescribing can be reduced in nursing homes using a quality improvement (QI) program that involves providers, staff, residents, and families.
Design
A ...9‐month quasi‐experimental trial of a QI program in 12 nursing homes (6 comparison, 6 intervention) conducted from March to November 2011.
Setting
Nursing homes in two regions of North Carolina, roughly half of whose residents received care from a single practice of long‐term care providers.
Participants
All residents, including 1,497 who were prescribed antibiotics.
Intervention
In the intervention sites, providers in the single practice and nursing home nurses received training related to prescribing guidelines, including situations for which antibiotics are generally not indicated, and nursing home residents and their families were sensitized to matters related to antibiotic prescribing. Feedback on prescribing was shared with providers and nursing home staff monthly.
Measurements
Rates of antibiotic prescribing for presumed urinary tract, skin and soft tissue, and respiratory infections.
Results
The QI program reduced the number of prescriptions ordered between baseline and follow‐up more in intervention than in comparison nursing homes (adjusted incidence rate ratio = 0.86, 95% confidence interval = 0.79–0.95). Based on baseline prescribing rates of 12.95 prescriptions per 1,000 resident‐days, this estimated adjusted incidence rate ratio implies 1.8 prescriptions avoided per 1,000 resident‐days.
Conclusion
This magnitude of effect is unusual in efforts to reduce antibiotic use in nursing homes. Outcomes could be attributed to the commitment of the providers; outreach to providers and staff; and a focus on common clinical situations in which antibiotics are generally not indicated; and suggest that similar results can be achieved on a wider scale if similar commitment is obtained and education provided.
Abstract Context Concerns about pain medications are major barriers to pain management in hospice, but few studies have focused on systematic methods to address these concerns. Objectives The ...objective of this study was to test the preliminary efficacy of the Effective Management of Pain: Overcoming Worries to Enable Relief (EMPOWER) intervention, which included hospice staff education, staff screening of barriers to pain management at admission, and discussion about misunderstandings regarding pain management with family caregivers and patients. Methods We conducted a pilot, cluster randomized, controlled trial with four hospices. One hundred twenty-six family caregivers (55 interventions and 71 controls) were interviewed at two weeks after admission. If patients survived three months after admission, caregivers were reinterviewed. Results At two weeks, caregivers in the intervention group reported better knowledge about pain management ( P = 0.001), fewer concerns about pain and pain medications ( P = 0.008), and lower patient pain over the past week ( P = 0.014) and trended toward improvement in most other areas under study. Exploratory analyses suggest that EMPOWER had a greater effect for black subjects (vs. whites) on reducing concern about stigma. At three months, the intervention group trended better on most study outcomes. Conclusion EMPOWER is a promising model to reduce barriers to pain management in hospice.
Little is known about the trajectory of post-traumatic stress disorder (PTSD) symptoms in cancer survivors, despite the fact that such knowledge can guide treatment. Therefore, this study examined ...changes in PTSD symptoms among long-term survivors of non-Hodgkin's lymphoma (NHL) and identified demographic, clinical, and psychosocial predictors and correlates of PTSD symptomatology.
Surveys were mailed to 682 NHL survivors who participated in an earlier survey and now were at least 7 years postdiagnosis. Information was obtained regarding PTSD symptoms, positive and negative perceptions of the cancer experience (ie, impact of cancer), and other potential correlates of PTSD.
A total of 566 individuals participated (83% response rate) with a median of 12.9 years since diagnosis; respondents were 52% female and 87% white. Although half (51%) of the respondents reported no PTSD symptoms and 12% reported a resolution of symptoms, more than one-third (37%) reported persistence or worsening of symptoms over 5 years. Survivors who reported a low income, stage ≥ 2 at diagnosis, aggressive lymphoma, having received chemotherapy, and greater impact of cancer (both positive and negative) at the initial survey had more PTSD symptoms at follow-up. In multivariable analysis, income and negative impacts of cancer were independent predictors of PTSD symptoms.
More than one-third of long-term NHL survivors experience persisting or worsening PTSD symptoms. Providers should be aware of enduring risk; early identification of those at prolonged risk with standardized measures and treatments that target perceptions of the cancer experience might improve long-term outcomes.
Little is known about change in quality of life (QOL) among long-term cancer survivors. We examined change over time in QOL among long-term survivors of non-Hodgkin lymphoma and identified ...demographic, clinical, and psychosocial risk factors for poor outcomes.
Surveys were mailed to 682 lymphoma survivors who participated in a study 5 years earlier, when on average they were 10.4 years postdiagnosis. Standardized measures of QOL, perceptions of the impact of cancer, symptoms, medical history, and demographic variables were reported at both time points and examined using linear regression modeling to identify predictors of QOL over time.
A total of 566 individuals participated (83% response rate) who were a mean of 15.3 years postdiagnosis; 52% were women, and 87% were white. One third of participants (32%) reported persistently high or improved QOL, yet a notable proportion (42%) reported persistently low or worsening QOL since the earlier survey. Participants who received only biologic systemic therapy reported improvement in physical health despite the passage of time. Older age, more comorbidity, and more or increasing negative and decreasing positive perceptions of cancer's impact were independent predictors of poor QOL. Lymphoma symptom burden, less social support, and having received a transplantation were related to negative perceptions of cancer's impact.
Moderate to severe symptom burden, limited social support, or having received a transplantation should alert the clinician to potential need for supportive services. Perceptions of cancer's impact are associated with QOL cross-sectionally and longitudinally; modifying these perceptions may thus provide a strategy for improving QOL.
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