Predictors of Custodial Grandparents’ Perceived Barriers to the Use of Services

Getting timely access to help, information, and a variety of services is paramount among the challenges of raising a grandchild, and grandparents face a variety of internal and external barriers in getting such help. The present pilot exploratory study focused on caregiving-related and personal resource variables best predicting grandparent caregivers’ perceptions of barriers to receiving services. Fifty-two grandparents (M age = 59.1) raising their grandchildren completed measures assessing caregiver strain, social support, resilience, self-care, psychosocial adequacy, health, depression, and grandchild relationship quality. They also completed measures of the extent to which they faced personal and caregiving-related difficulties giving rise to the need for services (e.g. health, grandchild well-being, support from others) as well as the extent to which they had experienced barriers to service (health/financial limitations, isolation, transportation, respite care, lack of knowledge of services) in the past 3 months. Correlations (p < .05) suggested that psychosocial adequacy (r = -.32), depression (r = .27), caregiver strain (r = .42) and difficulties (r = .48) were all related to greater perceived barriers. Regression analyses (F7, 40 = 2.81, p < .02) indicated that caregiver strain (Beta = .33, p < .05) and difficulties giving rise to the need for services (Beta = .32, p < .04) emerged as most salient in predicting barriers. These findings underscore the fact that personal, caregiving-related, and interpersonal factors exacerbate the barriers associated with grandparents’ accessing needed services and reinforce such factors’ impact on grandparents as targets for overcoming impediments to accessing services among them.

Share the Care: Study Design, Implementation, and Baseline Participant Characteristics of a Peer Mentoring Program to Improve Outcomes for Informal Caregivers of Homebound Individuals with Advanced Parkinson’s Disease (Preprint)

BACKGROUND Homebound individuals with advanced Parkinson’s Disease (PD) require intensive caregiving, the majority of which is provided by informal, family caregivers. PD caregiver strain is an independent risk factor for institutionalization. There are currently no effective interventions to support advanced PD caregivers. Studies in other neurologic disorders, however, have demonstrated the potential for peer mentoring interventions to improve caregiver outcomes. In the context of an ongoing trial of interdisciplinary home visits, we designed and piloted a nested trial of caregiver peer mentoring for informal caregivers of individuals with advanced PD. OBJECTIVE To test the feasibility of peer mentoring for caregivers of homebound individuals with advanced PD and to evaluate its effects on anxiety, depression, and caregiver strain. METHODS Single-center pilot study of 16 weeks of caregiver peer mentoring nested within a yearlong controlled trial of interdisciplinary home visits. We recruited 34 experienced former or current family caregivers who completed structured mentor training. Caregivers enrolled in the larger interdisciplinary home visit trial consented to receive 16 weeks of weekly, one-to-one peer mentoring calls with a trained peer mentor. Weekly calls were guided by a curriculum on advanced PD management and caregiver support. Fidelity to and satisfaction with the intervention were gathered via biweekly study diaries. Anxiety, depression, and caregiver strain were measured pre- and post-mentoring intervention at Home Visits 2 and 3. RESULTS Enrollment and peer mentor training began in 2018, and 65 caregivers enrolled in the overarching trial. The majority of mentors and mentees were white, female spouses or partners of individuals with PD, and mentors had a mean of 8.7 years of caregiving experience (SD 6.4). Thirty-three mentors were matched with at least one mentee. Mentoring concluded in late 2020, with data analysis underway. CONCLUSIONS This is the first study of caregiver peer mentoring in PD and may establish an adaptable and sustainable model for disease-specific caregiver interventions in PD and other neurodegenerative diseases. CLINICALTRIAL ClinicalTrials.gov NCT03189459; http://clinicaltrials.gov/ct2/show/ NCT03189459.

Caregiver Burden in a Culturally Diverse Memory Clinic Population: The Caregiver Strain Index-Expanded

<b><i>Introduction:</i></b> Although qualitative studies have highlighted substantial barriers to dementia diagnosis and care in culturally diverse populations in Europe, quantitative studies examining the level of caregiver burden in these populations have been lacking thus far and are urgently needed. <b><i>Methods:</i></b> We compared the caregiver burden levels on the Caregiver Strain Index (CSI)-Expanded of 63 culturally diverse patient-caregiver dyads from a multicultural memory clinic with 30 native Dutch patient-caregiver dyads and examined the association between caregiver burden and determinants of burden. <b><i>Results:</i></b> Informal caregivers in the multicultural memory clinic cohort experienced a high level of caregiver burden (mean CSI-score multicultural cohort: 6.1 [SD: 3.3]; mean CSI-score native Dutch cohort: 4.8 [SD: 3.2]). Burden was significantly associated with impairment on proxy-rated and objective measures of cognitive functioning, such as the Informant Questionnaire on Cognitive Decline and the Rowland Universal Dementia Assessment Scale, and with instrumental activities of daily living. Burden was the highest in spousal caregivers. The positive subscale of the CSI-Expanded provided limited additional information. <b><i>Conclusion:</i></b> Caregivers of culturally diverse patients experience a high level of caregiver burden, in particular at more advanced disease stages. This study highlights the need to screen culturally diverse caregivers in European memory clinics on caregiver burden to identify those in need of caregiver support.

Caregiver strain among North American parents of children from the Autism Treatment Network Registry Call-Back Study

Elevated caregiver strain is common and linked to poor health in parents of children with autism. Yet, little research has examined caregiver strain longitudinally and in geographically diverse samples of parents whose children have autism. This study aimed to (1) examine change in caregiver strain and (2) determine correlates of improved caregiver strain in North American parents of children with autism. This was a secondary analysis of data from the Autism Treatment Network Registry Call-Back Study, conducted from 2015 to 2017 on a random sample of children with autism spectrum disorder at 12 clinical sites in the United States or Canada. Child assessments and parent-reported questionnaires were completed at two time points 1 year apart. Caregiver strain was assessed with the Caregiver Strain Questionnaire. In total, 368 children had caregiver strain data at both times. Mean caregiver strain in parents did not significantly change between Times 1 and 2 (mean difference = 0.05, t(360) = 0.1, p = 0.92). Improved caregiver strain between Times 1 and 2 was associated with improved child adaptive functioning and externalizing problem behaviors. Caregiver strain was persistent and multi-factorial. Parent training to manage challenging child behaviors and adaptively cope may benefit this vulnerable parent population. Lay abstract Caregiver strain is the adverse impact that parents of children with emotional and behavioral issues including autism often experience (e.g. negative consequences of caregiving such as financial strain and social isolation; negative feelings that are internal to the caregiver such as worry and guilt; and negative feelings directed toward the child such as anger or resentment). This study showed that on average caregiver strain did not significantly change in North American parents of children with autism during a 2-year period. Improved caregiver strain was linked to improved child functioning and behavior. Routine assessment of caregiver strain and referral to evidence-based programming and supports may help alleviate some of the burden that families of children with autism commonly experience.

OS09.6.A Cognition and health-related quality of life in long time survivors of high-grade glioma

BACKGROUND Although prognosis is poor in high-grade glioma (HGG) patients, some become a long-term survivor (LTS). Health-related quality of life (HRQOL) and cognition are seen as indicators for quality of survival in HGG but data in LTS and their caregivers are scarce. We aim to investigate cognition and HRQOL in LTS with evaluation by their proxies. MATERIAL AND METHODS We included LTS with initial HGG-diagnosis between 1999–2014. Cognition was assessed with: Boston Naming Test, shortened Token Test, verbal (Category and Letter) Fluency, Diagnostic Instrument of Mild Aphasia, Hopkins Verbal Learning Test and Trail Making Test (A, B, B/A) and HRQOL with: EORTC Quality of Life Questionnaire (C30) and Brain Cancer Module (BN20). 15 Proxies evaluated patients’ HRQOL with: C30, BN20 and they filled in a burden scale: Caregiver Strain Index (CSI). RESULTS 21 patients with grade III or IV glioma and 7 years (range 5–20 years) median survival after diagnosis participated. Compared to normative data patients deviated significantly on HVLT (direct recall, delayed recall, recognition true positives), TMT (A, B and B/A), BNT and CF (p&lt;0.05) which was not affected by hemispheric localization (left/right) or tumor grade (III/IV). HVLT delayed recall was significantly worse in patients with &gt;12 years survival compared to patients with &lt;12 years survival. Average QoL rating in patients was 75%, proxy’s evaluation about patients’ QoL was similar. Moderate correlations (p&lt;0.05) were found between impaired scores on TMT and CF and C30 cognition subscale and between impaired scores on CF, HVLT delayed recall and BNT and BN20 language subscale. At individual level only one patient had intact scores on all administered tests. Other patients had mild impairments on 1–5 subtests and severe impairment on 1–8 subtests. Five out of 14 (36%) proxies reported a great level of caregiver strain on CSI. CONCLUSION Most LTS suffer from cognitive impairments. Despite worse prognosis and cognitive impairments, at group level patients report relatively intact QoL, which is supported by their proxies. However, at the individual level severity of impairments is variable and high caregiver strain is reported in one-third of the proxies. Objective cognitive functioning was only modestly associated with subjective experience in patients. A patient-tailored approach is recommended to investigate individual impairments and needs for rehabilitation and support for patients and also for their carers.

NGHIÊN CỨU GÁNH NẶNG CHĂM SÓC BỆNH NHÂN PARKINSON CÓ SA SÚT TRÍ TUỆ BẰNG CHỈ SỐ CĂNG THẲNG CHO NGƯỜI CHĂM SÓC CÓ SỬA ĐỔI

Mục tiêu: Đánh giá gánh nặng chăm sóc bệnh nhân Parkinson có sa sút trí tuệ bằng “Chỉ số căng thẳng cho người chăm sóc có sửa đổi” (MCSI – Modified Caregiver Strain Index). Đối tượng và phương pháp nghiên cứu: Nghiên cứu cắt ngang so sánh trên người chăm sóc chính của 100 bệnh nhân được chẩn đoán bệnh Parkinson theo tiêu chuẩn của Ngân hàng não hội Parkinson Vương quốc Anh (UKPDSBB/United Kingdom Parkinson’s Disease Society Brain Bank), nhóm bệnh nhân Parkinson có sa sút trí tuệ (SSTT) chẩn đoán theo tiêu chuẩn của Hiệp hội Tâm thần học Hoa Kỳ (DSM –V) tại Bệnh viện Lão khoa Trung Ương từ tháng 06 năm 2020 đến tháng 05 năm 2021. Kết quả: 50 người chăm sóc chính của bệnh nhân Parkinson không bị SSTT và 50 người chăm sóc chính bệnh nhân Parkinson có SSTT. Điểm MCSI của người chăm sóc trung bình là 9.73 ± 7.558. Điểm MCSI trung bình có sự khác biệt giữa 2 nhóm nghiên cứu, cao hơn ở nhóm người chăm sóc bệnh nhân có SSTT (p<0.05). Trong nhóm người chăm sóc chính của bệnh nhân có SSTT, mức độ rất căng thẳng là 32%, căng thẳng trung bình 48%, không căng thẳng 20%. Nhóm không có SSTT có điểm PDQ-carer trung bìnhcủa người chăm sóc chính là 30.42 ± 26.437, của nhóm có SSTT cao hơn là 74.44 ± 33.72, có sự khác biệt có ý nghĩa thống kê với giá trị p < 0.05. Kết luận: Gánh nặng chăm sóc cho bệnh nhân Parkinson tăng lên khi có sa sút trí tuệ đi kèm.

Caregiver strain in progressive supranuclear palsy and corticobasal syndromes

Progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS) progress relentlessly and lead to a need for care. Caregiving is often burdensome. Little is known about the course of caregiver burden (CB) in PSP and CBS patients. Longitudinal analysis of CB in family members caring for PSP and CBS patients. Single-center longitudinal pilot study in 68 newly diagnosed patients with probable PSP and CBS (52 Richardson’s syndrome; 1 progressive gait freezing of PSP; 15 CBS). Demographic, educational, occupational parameters, family status, motor functions (UPDRSIII, Hoehn and Yahr Score, Tinetti) and neuropsychological performance (CERAD Plus, Frontal Assessment Battery) were assessed, as well as behavioral and neuropsychiatric impairments (Frontal Behavioral Inventory, Neuropsychiatric Inventory), activities of daily living (ADL) and caregiver burden using the Caregiver Strain Index (CSI), in most patients also the Zarit Burden Interview (ZBI). Patients were followed up every 6 months for up to 2 years. Caregivers reported mild to moderate CB at baseline, which increased by 25–30% in 2 years and was significantly greater in PSP than in CBS. Risk for mental health problems increased over time, especially in female caregivers (depression). Important patient-related factors were apathy, aspontaneity, depression, irritability, disorganization, poor judgment, impairment of language, impairments in ADL, a high educational level of the patient and close family relationship. Behavioral symptoms and impaired ADL are the main patient-related factors of CB in PSP and CBS. CB can be severe and needs to be assessed repeatedly from the time of diagnosis to provide comprehensive support.

Longitudinal, Interdisciplinary Home Visits vs. Usual Care for Homebound People with Advanced Parkinson’s Disease (IN-HOME-PD): Study protocol for a controlled trial (Preprint)

BACKGROUND Current understanding of advanced Parkinson’s disease (PD) and its treatment is largely based on data from outpatient visits. The most advanced and disabled individuals become disconnected from both care and research. A previous pilot study among older, multimorbid patients with advanced PD demonstrated the feasibility of interdisciplinary home visits to reach the target population, improve care quality, and potentially avoid institutionalization. OBJECTIVE The following protocol tests whether interdisciplinary home visits can 1) prevent decline in quality of life and 2) prevent worsening caregiver strain. Finally, the protocol explores whether program costs are offset by savings in healthcare use and institutionalization when compared with usual care. METHODS In this single-center, controlled trial, 65 patient-caregiver dyads affected by advanced PD (Hoehn & Yahr stages 3-5 and homebound) are recruited to receive quarterly interdisciplinary home visits over one year. The one-year intervention is delivered by a nurse and research coordinator who travel to the home supported by a movement disorders specialist and social worker (both present by video). Each dyad is compared with age-, sex-, and Hoehn and Yahr stage-matched control dyads drawn from US participants in the longitudinal Parkinson’s Outcome Project registry. The primary outcome measure is change in patient quality of life between baseline and one year. Secondary outcome measures include change in Hoehn & Yahr stage, caregiver strain, self-reported fall frequency, emergency room visits, hospital admissions, and time-to-institutionalization and/or death. Intervention costs and changes in healthcare utilization will be analyzed in a budget impact analysis exploring the potential for model adaptation and dissemination. RESULTS The protocol was funded in September 2017 and approved by the Rush Institutional Review Board in October 2017. Recruitment began in May 2018 and closed in November 2019 with 65 patient-caregiver dyads enrolled. All study visits have been completed and analysis is underway. CONCLUSIONS To our knowledge, this is the first controlled trial to investigate the effects of interdisciplinary home visits among homebound individuals with advanced Parkinson’s disease and their caregivers. This study also establishes a unique cohort of patients from whom we can study the natural course of advanced PD, its treatments, and unmet needs. CLINICALTRIAL Clinicaltrials.gov, NCT03189459.