Training Neurodegenerative Disease Support Group Leaders: A New Support Group Functioning Scale

Support group leaders play pivotal roles in maintaining healthy community support groups; however, these leaders also have personal support needs and typically lack formal training in managing complex behaviors of neurodegenerative disorders. A support group well-being questionnaire, assessing support group functioning, was developed and piloted among participants of an educational training program designed for support group leaders of various neurodegenerative disorder-specific support groups. An exploratory factor analysis evaluated the questionnaire’s psychometric properties and identified a reliable single factor five-item solution, which was titled the Support Group Functioning Scale (SGFS). Preliminary interpretation guidelines were proposed. Development of this scale is a first step in identifying support group leaders’ needs as they provide frontline assistance to caregivers and individuals with neurodegenerative illnesses. This tool shows promise as an efficient way to identify support groups in need of assistance and to assess the impact of trainings on support group functioning. Further validation of the scale is needed

Randomized controlled expressive writing pilot in individuals with Parkinson’s disease and their caregivers

Background Individuals with Parkinson’s disease (PD) and their caregivers are at risk for emotional distress and hypercortisolism. Expressive writing is an effective complementary intervention to ameliorate the psychological and physiological effects of chronic illness. This pilot study aimed to evaluate feasibility and preliminary effectiveness of an expressive writing intervention for individuals with PD and their caregivers. Methods Individuals with PD (N = 27) and their caregivers (N = 14) were randomly assigned to expressive (N = 15 patients, eight caregivers) or neutral (N = 12 patients, six caregivers) writing conditions. Cortisol awakening response (CAR), non-motor functioning, quality of life, and performance on tests of cognitive functioning were assessed at baseline, immediate post, 4-month, and 10-month post intervention. Results Attrition was a challenge as eight patients (29.62 %) and four caregivers (28.57 %) chose to discontinue before beginning the intervention or were lost to follow up prior to completing the intervention or the first follow up visit. Significant reduction in anxiety, marginally significant improvement in depression and caregiver burden, and significant improvements in performance on tests of learning and memory were observed, but these changes did not differ by writing condition. CAR significantly differed over time between patients and caregivers and writing conditions. Conclusions Some evidence for the feasibility and effectiveness of writing to alleviate hypercortisolism was demonstrated in a small sample of PD patients; however, relatively high attrition rates and the lack of difference between expressive and neutral writing conditions on emotional and neurocognitive outcomes suggests expressive writing procedure modifications may be needed to obtain optimal results for this population. Trial registration ClinicalTrials.gov, NCT02217735, Study Start Date: August 30, 2011. Electronic supplementary material The online version of this article (doi:10.1186/s40359-015-0101-4) contains supplementary material, which is available to authorized users. Keywords: Expressive writing, Salivary cortisol, Parkinson’s disease, Quality of life, Caregive

Patient-Reported Needs, Non-Motor Symptoms, and Quality of Life in Essential Tremor and Parkinson’s Disease

Background: Non‐motor symptoms, quality of life, service needs, and barriers to care of individuals with movement disorders are not well explored. This study assessed these domains within a sample of individuals with essential tremor (ET) and Parkinson's disease (PD). Methods: A survey exploring symptoms, needs, and barriers to care was disseminated to a convenience sample (N = 96) of individuals with a primary diagnosis of ET (N = 19) or PD (N = 77). Results: Similarities in overall quality of life and impact on daily functioning were found across individuals with ET and PD. Noteworthy differences included endorsement of different types of service needs and utilization patterns and fewer non‐motor symptoms reported among those with ET (M = 6.1, SD = 2.4) than those with PD (M = 10.4, SD = 3.4). Non‐motor symptoms significantly impacted movement disorder‐related quality of life for both diagnostic groups, but this relationship was stronger for individuals with ET, t(12) = 3.69, p = 0.003, β = 0.73 than with PD, t(56) = 4.00, p less than 0.001, β = 0.47. Individuals with ET also reported higher rates of stigma (31.6% vs. 7.8%) and greater impact of non‐motor symptoms on emotional well‐being, R2 = 0.37, F(1, 13) = 7.17, p = 0.020. Discussion: This is the first study to describe and compare the needs, barriers to care, and impact on quality of life of two distinct movement disorder groups. Our results support the recent efforts of the field to identify interventions to address the non‐motor symptoms of movement disorders and indicate need for greater appreciation of the specific differences in symptoms and quality of life experienced across movement disorder diagnoses

Training Neurodegenerative Disease Support Group Leaders: A New Support Group Functioning Scale

Support group leaders play pivotal roles in maintaining healthy community support groups; however, these leaders also have personal support needs and typically lack formal training in managing complex behaviors of neurodegenerative disorders. A support group well-being questionnaire, assessing support group functioning, was developed and piloted among participants of an educational training program designed for support group leaders of various neurodegenerative disorder-specific support groups. An exploratory factor analysis evaluated the questionnaire’s psychometric properties and identified a reliable single factor five-item solution, which was titled the Support Group Functioning Scale (SGFS). Preliminary interpretation guidelines were proposed. Development of this scale is a first step in identifying support group leaders’ needs as they provide frontline assistance to caregivers and individuals with neurodegenerative illnesses. This tool shows promise as an efficient way to identify support groups in need of assistance and to assess the impact of trainings on support group functioning. Further validation of the scale is needed

Parkinson’s Symptoms and Caregiver Burden and Mental Health: A Cross-Cultural Mediational Model

Informal caregivers are critical in the care of individuals with Parkinson’s disease (PD) and spend substantial time providing care, which may be associated with negative caregiver outcomes such as burden and mental health issues. Although research in the United States and Europe has generally supported these relations, there is very limited research on PD caregiving in Latin America. The current study examined the following connections in a sample of PD caregivers from the United States (N=105) and Mexico (N=148): (a) PD-related impairments (motor and nonmotor symptoms) and caregiver burden, (b) caregiver burden and caregiver mental health, and (c) PD-related impairments and mental health through caregiver burden. Study results uncovered significant relations among PD-related impairments, caregiver burden, and caregiver mental health. Further, caregiver burden fully mediated the relation between PD-related impairments and caregiver mental health at both study sites. Findings highlight a number of important intervention targets for caregivers and families, including caregiver burden and mental health

Low-Dose Whole Brain Radiation Therapy for Alzheimer\u27s Dementia: Results From a Pilot Trial in Humans

PURPOSE: We report neurocognitive, imaging, ophthalmologic, and safety outcomes following low-dose whole brain radiation therapy (LD-WBRT) for patients with early Alzheimer dementia (eAD) treated in a pilot trial. METHODS AND MATERIALS: Trial-enrolled patients were at least 55 years of age, had eAD meeting NINCDS-ADRDA (National Institute of Neurological and Communicative Disorders and Stroke-Alzheimer\u27s Disease and Related Disorders Association) Alzheimer\u27s Criteria with confirmatory fluorodeoxyglucose and florbetapir positron emission tomography findings; had the capacity to complete neurocognitive function, psychological function, and quality-of-life assessments; had a Rosen modified Hachinski score ≤4; and had estimated survival \u3e12 months. RESULTS: Five patients were treated with LD-WBRT (2 Gy × 5 over 1 week; 3 female; mean age, 73.2 years [range, 69-77]). Four of 5 patients had improved (n = 3) or stable (n = 1) Mini-Mental State Examination (second edition) T-scores at 1 year. The posttreatment scores of all 3 patients who improved increased to the average range. There were additional findings of stability of naming and other cognitive skills as well as stability to possible improvement in imaging findings. No safety issues were encountered. The only side effect was temporary epilation with satisfactory hair regrowth. CONCLUSIONS: Our results from 5 patients with eAD treated with LD-WBRT (10 Gy in 5 fractions) demonstrate a positive safety profile and provide preliminary, hypothesis-generating data to suggest that this treatment stabilizes or improves cognition. These findings will require further evaluation in larger, definitive, randomized trials

Structural Equation Modeling of Parkinson’s Caregiver Social Support, Resilience, and Mental Health: A Strength-Based Perspective

Only scant literature has focused on social support in Parkinson’s disease (PD) caregivers, and no studies to date have examined resilience in this population, despite both variables having been shown to be important in other caregiving populations. As a result, the purpose of the current study was to construct and validate a theoretical structural equation model whereby social support is associated with higher levels of resilience in PD caregivers and increased resilience is related to decreased mental health symptoms. Two hundred fifty three PD caregivers from two clinics in the United States and Mexico completed self-report measures of these constructs. Results suggested that the hypothesized pattern was robustly supported with the structural equation model showing generally good fit indices. Higher levels of social support were associated with increased resilience, which in turn was associated with reduced mental health symptoms. Resilience partially mediated social support’s effect on mitigating mental health symptoms. The model explained 11% of the variance in resilience and 35% in mental health symptoms. These findings have implications for future research on the development and tailoring of interventions to improve social support, resilience, and mental health in PD caregivers