Factors associated with reduced sleep among spouses and caregivers of older adults with varying levels of cognitive decline.

BACKGROUND: Caregivers of persons with cognitive decline (PWCD) are at increased risk of poor sleep quantity and quality. It is unclear whether this is due to factors in the caregiver versus in the PWCD. METHODS: This secondary data analysis using Aging, Demographics, and Memory Study data from the Health Retirement Study examined factors contributing to reduced sleep/rest among spouses and caregivers of older adults with varying levels of cognitive decline (cognitively normal (CN), cognitive impairment but not dementia (CIND), or dementia). RESULTS: In our preliminary analysis, among N = 218 spouses (not necessarily caregivers) (mean age (SD) = 73.77 (7.30); 70.64% female) of older adults with varying levels of cognitive decline, regression revealed that frequency of sleep complaints was lowest among spouses with CN partners, second highest with CIND partners, and highest with dementia-partners, X2 = 26.810, P = 0.002. PRIMARY AIM: among n = 136 caregivers of PWCD (mean age (SD) = 59.27 (13.97); 74.26% female; 22.79% spouses), we analyzed whether caregiver reduced sleep/rest was predicted by PWCD factors (i.e., frequent nighttime waking, dementia severity) and/or caregiver factors (i.e., depression symptoms, caregiver role overload). Regression revealed that caregiver depression symptoms (d = 0.62) and role overload (d = 0.88), but not PWCD factors, were associated with reduced caregiver sleep/rest after adjusting for demographic factors, caregiving frequency, and shared-dwelling status (overall model: X2 = 31.876, P = 0.002). Exploratory analyses revealed that a caregiver was 7.901 times more likely (95% CI: 0.99-63.15) to endorse experiencing reduced sleep/rest if back-up care was not available (P = 0.023). CONCLUSION: Findings highlight that the frequency of reported sleep problems among spouses increases in a stepwise fashion when partners have dementia versus CIND versus CN. The results also emphasise that caregiver mental health and burden are strongly associated with caregiver sleep disturbances and thus may be targets of intervention for caregiver sleep problems.

An Exploratory Pilot Study of Neuropsychological Performance in Two Huntington Disease Centers of Excellence Clinics.

OBJECTIVES: To describe the characteristics of patients receiving a clinical referral for neuropsychological evaluation in two Huntington's Disease Society of America Centers of Excellence (HDSA COE). In this exploratory pilot study, we used an empirically supported clinical neuropsychological battery to assess differences in cognitive performance between premanifest and manifest HD patient groups (compared with each other and normative expectations). METHOD: Clinical data from 76 adult genetically confirmed patients referred for neuropsychological evaluations was retrospectively collected from two HDSA COEs. ANOVA and Chi-square tests were used to compare variables between pre-manifest (n = 14) and manifest (n = 62) groups for demographic, cognitive, neuropsychiatric, and disease severity variables. RESULTS: Our clinics serviced a disproportionate number of motor manifest patients. Six measures were excluded from analyses due to infrequent administration. The full WAIS-IV Digit Span was disproportionately administered to the manifest group. The premanifest group showed stronger cognitive performance with effect sizes in the large range on subtests of the WAIS-IV Digit Span, HVLT-R, SDMT, and verbal fluency. CONCLUSIONS: This is the first study to assess an empirically supported neuropsychological research battery in a clinical setting with a relatively large sample size given the rarity of HD. The battery adequately captured areas of impairment across the disease spectrum. Application of the current battery with larger premanifest samples is warranted.

Huntington Study Group's Neuropsychology Working Group: Implementing Non-Motor Diagnostic Criteria.

Background: The clinical diagnosis of manifest Huntington's disease (HD) relies on a high level of clinical confidence (99% confidence) of HD-consistent motor signs. Longitudinal data have reliably identified cognitive and behavioral dysfunction predating clinical motor diagnosis by up to 15 years. Reliance on motor signs to establish a diagnosis of HD increases risk of early misdiagnosis or delayed diagnosis. Clinical neuropsychologists are uniquely positioned to advise on the clinical application of the Movement Disorder Society Task Force's recently proposed non-motor diagnostic criteria for HD. Objectives: To provide (1) a recommended clinical approach toward non-motor diagnostic criteria in persons with HD and facilitation of accurate diagnosis; (2) recommended practices for medical treatment providers to screen and longitudinally monitor non-motor signs of HD. Methods: The Huntington Study Group re-established the Neuropsychology Working Group, then recruited a multi-disciplinary group of neuropsychologists, neurologists, and psychiatrists to conduct an unstructured literature review and discuss expert opinions on practice, to facilitate an informal consensus opinion to accomplish the objectives. Results: The opinion and an example protocol for medical treatment providers to screen, monitor, and triage non-motor signs and symptoms of Huntington's disease is provided. Conclusions: Clinical diagnosis of non-motor HD is empirically justified and clinically important. Screening and triage by non-neuropsychologist clinicians can aid in detecting and monitoring non-motor Huntington's disease manifestation. The Neuropsychology Working Group consensus advances good clinical practice, clinical research, and quality of life. A companion position paper presenting the details of our consensus opinion regarding evidence-based guidelines for neuropsychological practice is forthcoming.

Huntington study group's neuropsychology working group position on best practice recommendations for the clinical neuropsychological evaluation of patients with Huntington disease.

Objective: Neuropsychological evaluation is critical to detection and management of cognitive and neuropsychiatric changes associated with Huntington disease (HD). Accurate assessment of non-motor complications of HD is critical given the prominent impact on functional disability, frequently commensurate with or exceeding that of motor symptoms. The increasing emphasis on developing disease-modifying therapies targeting cognitive decline in HD requires consensus on clinical neuropsychological assessment methods. The Neuropsychology Working Group (NPWG) of the Huntington Study Group (HSG) sought to provide evidence and consensus-based, practical guidelines for the evaluation of cognitive and neuropsychiatric symptoms associated with HD. Method: The NPWG recruited a multi-disciplinary group of neuropsychologists, neurologists, and psychiatrists to inform best practices in assessing, diagnosing, and treating the non-motor symptoms in HD. A review was circulated among the NPWG, and in an iterative process informed by reviewed literature, best practices in neuropsychological evaluation of patients with HD were identified. Results: A brief review of the available literature and rational for a clinical consensus battery is offered. Conclusion: Clinical neuropsychologists are uniquely positioned to both detect and characterize the non-motor symptoms in HD, and further, provide neurologists and allied health professions with clinically meaningful information that impacts functional outcomes and quality of life. The NPWG provides guidance on best practices to clinical neuropsychologists in this statement. A companion paper operationalizing clinical application of previous research-based non-motor diagnostic criteria for HD is forthcoming, which also advises on non-motor symptom screening methods for the non-neuropsychologist working with HD.