Individuals with early-onset Alzheimer's disease (EOAD, age-of-onset < 65 years old) are likely to experience unique challenges with financial, legal, and social decision-making following their diagnosis. Yet, there are limited data characterizing the types of decisions patients and families make after a diagnosis or potential barriers to decision-making. Semi-structured interviews with caregivers (n=13) of patients with EOAD enrolled in a longitudinal observational study. Interview guides assessed financial, legal, and social decision-making within 30 days following the patient's EOAD diagnosis. Data analysis implemented data immersion, theme identification, indexing, charting and interpretation. Of the 13 caregivers interviewed, 11 were spouses and 2 were siblings of EOAD patients (See Table 1. Demographics). Caregivers described experiences with patients in seeking a diagnosis, including multiple visits to different physicians and misdiagnosis. Caregivers who were shown the patient's amyloid and/or tau PET scans as part of the larger longitudinal study (7/13) reported that these images helped them better understand and accept the diagnosis. Participants reported that the EOAD symptoms or the diagnosis interfered with the patient's continued employment (10/13), affected financial decision-making (12/13), and led to a shift in the role of primary decision maker within the family (8/13). Referencing the financial consequences of his wife's early retirement due to EOAD, one participant reports: “Everything was going to be paid off. We were going to have a good income coming in. [. . .] And it just kind of blew up when she got Alzheimer's.” Seven participants described changes in housing, including decisions to sell homes or move closer to family. Additionally, caregivers (6/12) reported challenges in accessing resources that would help prepare for future long-term care needs due to EOAD, including difficulties in accessing disability pay. While caregivers endorsed an understanding that long-term care services may be necessary in the future, only five had initiated plans.
Family caregivers seek information online to help them learn about dementia, problem solve challenges they face, and access resources and support to help them cope. The quality, relevance, and usability of online information for caregivers varies across websites and little is known about how frequently these sites are viewed. The UCSF Memory and Aging Center (MAC) maintains a website with educational content on dementia (memory.ucsf.edu). New content developed specifically to support family caregivers was developed by a multidisciplinary team of clinicians with expertise in dementia. The MAC's Family Advisory Council (FAC) of dementia caregivers reviewed the material for relevance and appeal to caregivers, and participated in user testing to help make the website easy to navigate. The new website content was released in September 2017. We used Google Analytics to measure the number of pageviews per month for each MAC webpage from January 2018—January 2019. The number of page views per month for each webpage was derived using Google Analytics. Our results are shown in the attached line graph. From January 2018 to January 2019 there were a total of: 30,193 pageviews for memory.ucsf.edu/behavior-personality-changes; 22,215 pageviews for memory.ucsf.edu/medications-dementia; 2,554 pageviews for memory.ucsf.edu/caregiving-support; 3,373 pageviews for memory.ucsf.edu/tips-daily-life; 1,386 pageviews for memory.ucsf.edu/caregiver-well-being.
Abstract In acute care settings hearing loss (HL) is associated with impaired patient-provider communication, increased length of stay, and increased mortality. COVID-19 has exacerbated this problem with the widespread use of masks and eye shields which muffle speech and prevent lip reading. Our 800-bed tertiary care medical center lacked a standardized approach to identify patients with HL and address communication barriers. Three first year medical students spearheaded the initiative as part of a health systems improvement curriculum with support from a faculty coach and a faculty researcher. From September 2020 to October 2021, the students met with stakeholders, leadership and champions and unit staff, identified the current state and completed a gap analysis through interviews, surveys, and direct observation. The pilot in May 2021 included two week-long PDSA cycles on one hospital unit to: 1) screen patients aged 65 and older using the validated 10-item HHIE-S questionnaire, 2) implement an education and awareness campaign with bedside signage, posters, and conferences and 3) provide a personal amplifier (purchased in bulk by the medical center) with verbal and written instructions. A total of 29 patients screened positive and were given personal amplifiers. Post-pilot interviews reported increased provider awareness and knowledge around best communication practices. Patients and staff reported limited amplifier use due to poor sound quality, small dials, poorly fitting ear buds and a short battery life. Based on these results the team recommended discontinuing the personal amplifiers and identifying other communication tools including higher quality personal amplifiers and speech to text applications.
Broadly accessible curriculum that equips Advanced Practice Nurses (APNs) with knowledge and skills to apply genomics in practice in the era of precision health is needed. Increased accessibility of genomics courses and updated curriculum will prepare APNs to be leaders in the precision health initiative. Courses on genomics were redesigned using contemporary pedagogical approaches to online teaching. Content was based on the Essential Genetic and Genomic Competencies for Nurses with Graduate Degrees. The number of students enrolled (n = 10) was comparable to previous years with greater breadth of representation across nursing practice specialty areas (53% vs. 20%). Prior to the first course, students reported agreement with meeting 8% (3/38) of the competencies. By completion of the 3rd course, students reported 100% (38/38) agreement with meeting the competencies. Content on genomics sufficient to obtain self-perceived attainment of genomics competencies can be successfully delivered using contemporary pedagogical teaching approaches.
We created a concise nurse-driven delirium reduction workflow with the aim of reducing delirium rates and length of stay for hospitalized adults. Our nurse-driven workflow included five evidence-based daytime "sunrise" interventions (patient room lights on, blinds up, mobilization/out-of-bed, water within patient's reach and patient awake) and five nighttime "turndown" interventions (patient room lights off, blinds down, television off, noise reduction and pre-set bedtime). Interventions were also chosen because fidelity could be quickly monitored twice daily without patient interruption from outside the room. To evaluate the workflow, we used an interrupted time series study design between 06/01/17 and 05/30/22 to determine if the workflow significantly reduced the unit's delirium rate and average length of stay. Our workflow is feasible to implement and monitor and initially significantly reduced delirium rates but not length of stay. However, the reduction in delirium rates were not sustained following the emergence of the COVID-19 pandemic.
Author(s): Binford, Sasha Sage | Advisor(s): Leutwyler, Heather | Abstract: Family caregivers of persons with dementia are at increased risk for adverse health outcomes than their peers not in a caregiving role. Persistent heterogeneity in the literature focused on outcomes in this population complicates efforts at identifying who is at greatest risk and for what outcomes as well as avenues for personalizing their care. The purpose of this dissertation was to explore factors contributing to the experiences and health outcomes of family caregivers (FCG) of persons with dementia (PWD). The overarching goal of this dissertation was to move the science as well as clinical practice forward in providing individualized care to our family caregivers of persons with dementia. This dissertation sought to achieve this goal through triangulating data from both quantitative and qualitative sources. A systematic review of the literature was conducted with a meta-analysis of the included studies’ findings related to assessing personality traits (PT) as predictors of outcomes in the FCG of PWD. A quantitative secondary analysis was then conducted based on a self-report measure of PT in a sample of FCG of PWD. A novel approach using latent profile analysis was employed in this study for purposes of exploring how group membership into classes of PT profiles was associated with health outcomes in this population of FCG. The qualitative aspect explored theory development around a sub-group of FCG using a grounded theory approach to guide interviews and participant observations with 15 spouses of persons with an early-age of onset dementia (EOD) syndrome. The systematic review with meta-analysis evaluated the strength of the current evidence supporting the assessment of PT (as defined by the Five Factor Model of Personality) of the FCG of PWD as significant predictors of these caregivers’ health outcomes, explaining some of the persistent heterogeneity observed. Only the dimensions of Neuroticism and Extraversion showed the greatest utility as reliable predictors through this review process, however. The meta-analyses of these data from the systematic review revealed statistically significant associations between Neuroticism and burden (pooled-r = .304), Neuroticism and depression (pooled-r = .593), and Extraversion and burden (pooled-r = -.233).The quantitative study revealed a statistically significant difference between class membership and life satisfaction. Two classes (i.e., profiles) were identified through methods of latent class analysis that best fit the data. Membership in the “Higher Resilience” (HR) class was associated with higher self-reported measures of “global cognitive judgement” of personal satisfaction with life than membership in the “Lower Resilience” (LR) class. Membership in the HR class was also associated with higher self-reported measures of bodily pain and role limitation due to emotional problems as assessed by the SF-36 health-related quality of life (HRQoL) instrument. No significant differences between the HR and LR classes were identified in participant or patient characteristics or in the FCG outcomes of perceived burden, distress, depression, anxiety level, or the HRQoL subscales of physical role limitations. The qualitative data revealed an underlying psychosocial process of a step-wise progression in role identity in spouses of persons with an EOD syndrome. A shift was described in how the well-spouse self-identified in the situation from that of “spouse” to that of “caregiver”. These “step-downs” in the transition were interpreted as representing “moments of significance” in the PWEOD’s continuous decline that held special meaning to the respective well-spouse and challenged them to take action in order to resolve resulting incongruencies to what it meant to them to be a spouse. The conditions of the situation (i.e., changes in the marital partnership and the interpersonal relationship between the dyads) carried unique aspects for this sub-group of FCG primarily due to the relatively young life stage at which this has occurred and the repercussions on their family and social life as well as financially. Inter-individual factors (i.e., personality traits) as well as understandings of the unique situations of sub-groups of caregivers (i.e., spouses of PWEOD) are factors which contribute significantly to the experiences as well as to health outcomes of FCG of PWD. They are critical factors to consider in the development of tailored interventions aimed at improving the health outcomes of this population of FCG.
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