Quality of Life measures for dementia

Over the past 10 years, several instruments developed specifically for the assessment of Quality of Life (QOL) in dementia have been introduced. The goal of the current review is to present, compare, and critique existing QOL measures for dementia populations to assist investigators and clinicians in selecting the optimal inventory for their specific needs. Nine measures are reviewed with a focus on conceptualizations of QOL, psychometric data, targeted patient population, and administration and scoring procedures. Critical discussion and comparison of the instruments is presented after the scales are described individually. Differences in definitions of QOL, assessment procedures, and methods that were used to establish the validity of instruments are highlighted. An important direction for future research on QOL scales for dementia is to establish their responsiveness to change over time. It will also be important to identify factors that affect reports of QOL, determine the how perceived QOL affects decisions regarding the care of dementia patients, and evaluate interventions to increase patient QOL

Better Memory for a Negative Event Associated with Better Emotion Regulation

Cognitive resources in older adults may promote psychological well-being. Our data add a novel dimension to this work by demonstrating that superior memory for negative mood induction stimuli is associated with better emotion recovery over time. Older (n = 11) and younger (n = 14) participants were shown film clips depicting themes of loss to induce negative emotions and reduce positive emotions. Self-report emotions were assessed prior to the videos, immediately after the videos, and after 10-minutes of emotion recovery. Results indicated that Positive Affect, Joviality, and Attentiveness significantly (ps \u3c .05) decreased and Negative Affect, Sadness, and Hostility significantly (ps \u3c .05) increased from pre- to post-video. Changes in Guilt were significantly (p \u3c .05) different by age group; scores for younger adults decreased whereas scores for older adults increased. Free recall and recognition memory for the film stimuli were tested. There was a trend for younger adults to have better recognition memory for the negative film stimuli than older adults (p \u3c 0.10). Poorer recognition memory was associated with less efficient emotion recovery for several negative emotions. Specifically, poorer recognition memory was associated with less efficient recovery as a trend for Fear (r = -.35, p \u3c .10) and Sadness (r = -.36, p \u3c .10) and significantly for Guilt (r = -.66, p \u3c .05). Better memory for an event that causes negative emotions may facilitate emotion regulation and emotion recovery. Implications for emotion dysregulation in memory disorders are discussed

Quality of Life in Prodromal HD: Qualitative Analyses of Discourse from Participants and Companions

Persons who are at risk for Huntington's Disease (HD) can be tested for the HD gene expansion before symptom onset. People with the gene expansion, but no clinical diagnosis, are in the prodromal phase of HD. This study explored quality of life (QOL) in prodromal HD. Interviews about QOL, conducted with 9 prodromal HD participants and 6 companions, were transcribed. Discourse was coded for emotional valence, content (e.g., coping, spirituality, interpersonal relationships, HD in others, and employment), and time frame (e.g., current, past, and future). Respondents were more positive than negative about the present, which was their major focus. The most common statements were about positive attitudes. Positive statements were made about spirituality, and negative statements were made about HD in other people. Relationships, employment, and coping with HD reflected both positivity and negativity. Participants and companions spoke of the future with different concerns. Applicability of findings to the clinical management of HD are discussed

HDQLIFE and neuro‐QoL physical function measures: Responsiveness in persons with huntington’s disease

BackgroundHuntington’s disease (HD) is a neurological disorder that causes severe motor symptoms that adversely impact health‐related quality of life. Patient‐reported physical function outcome measures in HD have shown cross‐sectional evidence of validity, but responsiveness has not yet been assessed.ObjectivesThis study evaluates the responsiveness of the Huntington Disease Health‐Related Quality of Life (HDQLIFE) and the Quality of Life in Neurological Disorders (Neuro‐QoL) physical function measures in persons with HD.MethodsA total of 347 participants completed baseline and at least 1 follow‐up (12‐month and 24‐month) measure (HDQLIFE Chorea, HDQLIFE Swallowing Difficulties, HDQLIFE Speech Difficulties, Neuro‐QoL Upper Extremity Function, and/or Neuro‐QoL Lower Extremity Function). Of the participants that completed the baseline assessment, 338 (90.9%) completed the 12‐month assessment, and 293 (78.8%) completed the 24‐month assessment. Standardized response means and general linear models evaluated whether the physical function measures were responsive to self‐reported and clinician‐rated change over time.ResultsSmall to moderate effect sizes for the standardized response means supported 12‐month and 24‐month responsiveness of the HDQLIFE and Neuro‐QoL measures for those with either self‐reported or clinician‐rated declines in function. General linear models supported 12‐month and 24‐month responsiveness for all HRQOL measures relative to self‐reported declines in health, but generally only 24‐month responsiveness was supported relative to clinician‐rated declines in function.ConclusionsLongitudinal analyses indicate that the HDQLIFE and the Neuro‐QoL physical function measures are sensitive to change over time in individuals with HD. Thus, these scales exhibit evidence of responsiveness and may be useful outcome measures in future clinical trials. © 2019 International Parkinson and Movement Disorder SocietyPeer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/154235/1/mds27908_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/154235/2/mds27908.pd

Relationships Among Apathy, Health-Related Quality of Life, and Function in Huntington\u27s Disease.

Up to 90% of individuals with Huntington\u27s disease (HD)-a progressive, inherited neurodegenerative disorder-experience apathy. Apathy is particularly debilitating because it is marked by a reduction in goal-directed behaviors, including self-care, social interactions, and mobility. The objective of this study was to examine relationships between variables of apathy, functional status, physical function, cognitive function, behavioral status/emotional function, and health-related quality of life. Clinician-rated measures of physical, cognitive, and behavioral function, including one clinician-rated item on apathy, and self-reported measures of physical function, health-related quality of life, and emotional, cognitive, and social function were collected in a single session from 487 persons with the HD mutation (prodromal, N=193; early-stage manifest, N=186; late-stage manifest, N=108). Multiple linear regression models were used to examine which outcomes best predicted clinician-rated apathy after controlling for disease stage. Greater apathy related to less independence, increased motor impairment, and more clinician-rated behavioral problems (i.e., anger, irritability, depression). Similarly, poorer self-reported health-related quality of life; greater chorea; greater upper- and lower-extremity dysfunction; greater speech and swallowing dysfunction; worse anxiety, depression, and behavioral dyscontrol; worse cognitive function; and less satisfaction with social roles related to greater apathy. In conclusion, apathy related to physical, cognitive, and behavioral dysfunction across disease stages. Future work should explore whether clinical interventions targeting different functional domains may have the potential to reduce apathy in this patient population

Evaluating Cognition in Individuals with Huntington Disease: NeuroQoL Cognitive Functioning Measures

PURPOSE: Cognitive functioning impacts health-related quality of life (HRQOL) for individuals with Huntington disease (HD). The Neuro-QoL includes two patient-reported outcome (PRO) measures of cognition-Executive Function (EF) and General Concerns (GC). These measures have not previously been validated for use in HD. The purpose of this analysis is to evaluate the reliability and validity of the Neuro-QoL Cognitive Function measures for use in HD. METHODS: Five hundred ten individuals with prodromal or manifest HD completed the Neuro-QoL Cognition measures, two other PRO measures of HRQOL (WHODAS 2.0 and EQ5D), and a depression measure (PROMIS Depression). Measures of functioning The Total Functional Capacity and behavior (Problem Behaviors Assessment) were completed by clinician interview. Objective measures of cognition were obtained using clinician-administered Symbol Digit Modalities Test and the Stroop Test (Word, Color, and Interference). Self-rated, clinician-rated, and objective composite scores were developed. We examined the Neuro-QoL measures for reliability, convergent validity, discriminant validity, and known-groups validity. RESULTS: Excellent reliabilities (Cronbach\u27s alphas ≥ 0.94) were found. Convergent validity was supported, with strong relationships between self-reported measures of cognition. Discriminant validity was supported by less robust correlations between self-reported cognition and other constructs. Prodromal participants reported fewer cognitive problems than manifest groups, and early-stage HD participants reported fewer problems than late-stage HD participants. CONCLUSIONS: The Neuro-QoL Cognition measures provide reliable and valid assessments of self-reported cognitive functioning for individuals with HD. Findings support the utility of these measures for assessing self-reported cognition

Neuropsychological Studies in Geriatric Psychiatry

Abstract and Introduction Abstract Purpose of Review: This review is a comprehensive summary of recent work in the field of neuropsychology that is relevant to geriatric psychiatry. Recent Findings: Recent research identified neuropsychological predictors of functioning in geriatric samples, elucidated the neuropathology and neuropsychology of geriatric depression, further clarified the association between dementia and depression, contributed to advancements in the early detection and diagnosis of dementia, investigated emotion processing in aging, and adapted neuropsychological tests for severely impaired samples. There were encouraging trends indicating that neuropsychological investigations are becoming increasingly culturally diverse. Summary: Recent research in neuropsychology will facilitate both the prediction of important clinical outcomes in geriatric samples and accurate differential diagnosis of psychiatric patients