Engaging Stakeholders in a Pragmatic Trial of Home-Delivered Meals for Persons with Dementia

Gathering stakeholder feedback is essential to designing and implementing relevant and actionable research. Additionally, stakeholders, particularly those directly impacted by an intervention, bring unique insights and experiences. This paper presents the process and findings of a research endeavor to co-design a pragmatic clinical trial with a Stakeholder Advisory Panel (SAP) in an effort to understand facilitators and barriers to conducting the research and implementing study findings. The proposed trial compares the impact of frozen, drop-shipped meals versus daily home-delivered meals provided by Meals on Wheels (MOW) programs on the ability of individuals living with dementia to age in place. We recruited nine SAP members, who were compensated for their time. The SAP is composed of a) MOW clients with dementia, b) family members of MOW clients with dementia, c) paid or volunteer MOW drivers, and d) MOW staff. A research team member facilitated two 90-minute meetings with the SAP members via Zoom. The topics of the meetings included potential benefits and challenges with each mode of meal delivery, the importance of the primary outcome (time to nursing home placement), topics of interest to include in interviews with clients and caregivers, and how participants would explain the study to a friend. Audio of the Zoom meetings was transcribed, and meeting summaries were shared with the SAP. Benefits of forming and engaging a SAP, as well as key lessons learned from SAP members and how recommendations were reflected in changes to the study protocol will be discussed.

Social Isolation and Healthcare Utilization Among Older Adults Living in Subsidized Housing

Older adults living in subsidized housing are often at high risk for having multiple chronic conditions and nursing home placement. Previous studies in this population have not examined the relationship between social isolation and healthcare utilization. We examine this using Lubben Social Network Scale-6 and self-reported healthcare utilization. Utilizing data from a multi-state non-profit subsidized housing provider, we performed descriptive and multivariate analyses on a sample of older adults (N=3,822). Overall, 95 % reported having a checkup within the last 12 months and an average of less than one emergency room visits (mean= 0.58) or hospitalizations (mean= 0.34). In adjusted models, Socially isolated older adults had lower levels of routine checkup (OR=0.50, CI 0.36,0.70) and higher levels of hospitalizations (IRR=1.30, CI 1.10,1.54) compared to older adults who were not socially isolated. Efforts to address healthcare utilization should identify social isolation and explore strategies to promote social connectedness to improve health.

Caring for a Relative with Dementia: Determinants and Gender Differences of Caregiver Burden in the Rural Setting

Dementia is a progressive disease that puts substantial strain on caregivers. Many persons with dementia (PwDs) receive care from a relative. Since male and female caregivers experience different issues related to stress, it is important to meet their different needs to prevent the early nursing home placement of PwDs. This study investigated the multifactorial aspects of caregiver burden and explored gender differences in caregiver burden in a rural setting. This was a cross sectional study that administered anonymous questionnaires to family caregivers of PwDs. Caregiver burden was assessed using the Burden Scale for Family Caregivers—short version. A path model was used to determine the multivariate associations between the variables. To reflect the multifaceted aspects of caregiver burden, we used Pearlin’s model with its four dimensions. A total of 113 family caregivers responded to our survey. The overall burden of caregivers was moderate. According to the path model, gender differences were predictors of caregiver burden. The behaviour of the person with dementia and cohabitation had direct effects on caregiver burden. Our results suggest that the experiences of men and women caring for a PwD are different and highlight the need for tailored support in dementia care.

Substernal goitre presenting with upper and lower extremity oedema

Substernal goitre is characterised by compressive symptoms of the airway and oesophagus. Chronic, progressive symptoms usually result in surgical removal. We report a rare presentation of substernal goitre in a male in his early 70s who suffered from severe bilateral lower extremity (LE) lymphoedema, resulting in immobility and nursing home placement, and left upper extremity lymphoedema. Our initial assessment led to a filariasis work-up, which was negative, due to the patient’s prior 2-year residence in India and service overseas. Chest CT scan revealed an incidental substernal goitre extending posterior to the left innominate vein and aortic arch to the level of the left mainstem bronchus. The patient underwent a left hemithyroidectomy via cervical excision and sternotomy and had an uneventful recovery with resolution of lymphoedema and mobility. Despite extensive literature regarding clinical presentations of substernal goitre, severe lymphoedema of the LE is not a well-established association.

P.078 Clinical Milestones in PSP and MSA may be Appropriate Triggers for Palliative Care Intervention

Background: Progressive supranuclear palsy (PSP) and multiple system atrophy (MSA) are progressive neurodegenerative disorders with complex symptom burden and unpredictable disease trajectories. The ideal timing of palliative care interventions is uncertain given the variable natural history of both diseases. Methods: A systematic review was conducted to identify publications investigating predictors of survival in PSP and MSA. A medical librarian assisted to ensure comprehensive search strategy. Relevant literature on palliative care in PSP and MSA was also reviewed. Results from both searches were qualitatively combined in order to suggest triggers for targeted palliative care throughout the disease trajectory. Results: ‘Milestones’ are well documented and clinically relevant disease points that prompt further care. Important milestones include: frequent falls, cognitive impairment, unintelligible speech, severe dysphagia, wheelchair dependence, urinary catheterisation, and nursing home placement. PSP-Richardson syndrome accumulates milestones earlier than PSP-Parkinsonism or MSA. Many PSP patients already have falls and cognitive impairment at the time of diagnosis. Time from milestone to death is variable. Conclusions: Milestones can be used to trace disease progression and help predict survival. Clinical milestones are likely to be important triggers for targeted palliative care interventions including the early incorporation of a palliative approach to care or referral to specialised palliative care services.

Cerebrospinal Fluid Biomarker Levels as Markers for Nursing Home Placement and Survival Time in Alzheimer’s Disease

Background: Cerebrospinal fluid (CSF) biomarkers are associated with conversion from mild cognitive impairment to Alzheimer’s disease (AD), but their predictive value for later end-points has been less evaluated with inconsistent results. Objective: We investigated potential relationships between CSF amyloid-β1-42 (Aβ42), phosphorylat- ed tau (P-tau), and total tau (T-tau) with time to nursing home placement (NHP) and life expectan- cy after diagnosis. Methods: This prospective observational study included 129 outpatients clinically diagnosed with mild-to-moderate AD who underwent a lumbar puncture. The CSF biomarkers were analysed with xMAP technology. Dates of institutionalisation and death were recorded. Results : After 20 years of follow-up, 123 patients (95%) were deceased. The participants with ab- normal P-tau and T-tau (A+ T+ (N)+) died earlier than those with normal P-tau/abnormal T-tau (A+ T- (N)+) (mean, 80.5 vs. 85.4 years). Linear associations were demonstrated between lower Aβ42 and shorter time to NHP (p = 0.017), and higher P-tau and younger age at death (p = 0.016). No correlations were detected between survival after AD diagnosis and CSF biomarkers. In sex- and-age-adjusted Cox regression models, higher P-tau and T-tau were independent predictors of shorter lifespan after diagnosis. In multivariate Cox models, older age and lower baseline cognitive status, but not elevated tau, significantly precipitated both institutionalisation and death. Conclusion: These findings suggest that CSF biomarker levels plateau in the dementia phase of AD, which may limit their possible relationships with clinical end-points, such as NHP and survi- val time. However, the biomarkers reflect the central pathophysiologies of AD. In particular, patho- logic tau is associated with more advanced disease, younger age at onset, and earlier death.

Impact of Safe@Home on Placement and Permanency Outcomes: Results of a quasi-experimental study

The purpose of this study was to rigorously test the effectiveness of Safe@Home, an in-home parent skill-based intervention implemented in Clark County, Nevada. Safe@Home is designed to prevent out-of-home placement for children at imminent risk of placement (Placement Prevention population) and minimize time in out-of-home care for children already in foster care (Reunification population). This paper presents a retrospective, longitudinal, quasi-experimental study that examined placement and permanency outcomes of Safe@Home. Using Coarsened Exact Matching (CEM), children who received Safe@Home were matched to a historical comparison group of children served before Safe@Home was available in their community. All children in the study were determined by Clark County Department of Family Services to be unsafe and in need of immediate intervention. Children were matched based on age, race/ethnicity, previous in-home or out-of-home child welfare case, and safety threats Matched study samples demonstrated strong baseline equivalence. Children who received Safe@Home experienced a significantly lower rate of out-of-home placements, substantially higher rate of permanency with a parent, fewer days in out-of-home care, and shorter time to case closure. There was no effect of Safe@Home on post-permanency outcomes of maltreatment after case closure and re-entry. Large favorable placement prevention effects were sustained for 12 months after the end of Safe@Home.

HCBS Service Spending and Nursing Home Placement for Patients With Alzheimer’s Disease and Related Dementias: Does Race Matter?

Objectives: We examined the extent to which home and community-based services (HCBS) spending affected the likelihood of nursing home (NH) placement among black and white HCBS users with Alzheimer’s disease and related dementias (ADRD). Methods: The study population included new HCBS users with ADRD between 2010 and 2013 ( N = 1,046,200). Results: We found that a one hundred dollar increase in monthly HCBS spending was associated with a 0.3 percentage points decrease in the NH placement rate among Whites, but a 0.3 percentage points increase in the NH placement rate among Blacks. The overall NH placement rate was 68.2% and 56.7% for Whites and Blacks, respectively. Discussion: A higher HCBS spending was associated with a decreased likelihood of NH placements for Whites but not for Blacks. It is important to understand how states’ HCBS expansion efforts influence Blacks and Whites with ADRD so that resources can be tailored to communities with different race-mix.