1,721,016 research outputs found
Measuring younger onset dementia: a comprehensive literature search of the quantitative psychosocial research
No full textBackground: Research is beginning to demonstrate the unique psychosocial effects of young onset dementia. Theorising remains at an early stage and there has been little discussion about measurement and methodological issues. Our aim was to conduct a comprehensive literature search of the young onset dementia psychosocial research, and to identify the domains of experience measured with patients and caregivers.Method: We conducted a search of five electronic databases (Medline, CINAHL, PsycINFO, Embase, the Cochrane Library) using equivalent database controlled vocabulary terms. We supplemented this search by using free text searches within electronic databases, searching reference sections of salient papers, and using online search engines. We defined psychosocial as referring to patient and caregiver psychological, behavioural, and social functioning in the context of living with young onset dementia.Results: We identified 72 published articles, 49 quantitative and 23 qualitative. The quantitative articles form the focus of the present review. We identified 10 domains of patient experience measured and 14 domains of caregiver experience. The patient domains measured most often were behaviour, cognition, functioning, and severity, and reflected a focus on symptoms and clinical features. Quality of Life (QoL) was the patient domain measured least often. The caregiver domains measured most often were mental health and burden, and reflected a focus on psychological well-being and coping.Conclusion: The scope of measurement is broader in caregivers than patients. QoL although under-researched may be a useful domain to measure in future research. Risk factors, measurement and methodological issues are discussed
Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers
No full textBackground: The qualitative research on young onset dementia is providing insights about the
‘lived experience’ of patients and caregivers. However, findings from these studies have seldom
been integrated into descriptive overviews. Our aim was to search the qualitative research, to
integrate the qualitative findings, and offer an account of the lived experience for patients and
caregivers.Method: The search of the qualitative research formed part of a broader comprehensive
literature search investigating salient measurement issues in the young onset dementia
psychosocial research. Five electronic databases were searched (Medline, CINAHL, PsycINFO,
Embase, the Cochrane Library) plus supplementary searching of reference sections and use of
online search engines. We identified 23 qualitative articles.Results: In the pre-diagnostic period, patients experience changes in cognition and functioning
but may be uncertain about changes and their significance. Caregivers may observe changes, think
of explanations, and are important in instigating medical intervention. Obtaining a diagnosis may
be a demanding process and the possibility of dementia may not be anticipated. In the postdiagnostic
period, patients and caregivers use several strategies to cope and adjust. Patients can
withdraw from established responsibilities while caregivers assume compensatory roles/duties.
Patients perceive changes in their identity while caregivers perceive changes in the caregiver–
patient relationship. Both can experience grief, isolation, and stigma
UK neurology response to the COVID-19 crisis
No full textCOVID-19 has led to seismic changes in neurological practice in a matter of weeks. The Association of British Neurologists has supported neurology specialists and patients during this rapid reorganisation and its attendant challenges. We have written guidance on structured service transformation, considering the need to sustain long term care while responding to acute developments; we have recognised that staff experience differs and that this, as well as individual risk factors should be considered when redeployment occurs. Appreciating that there may be understandable anxiety when facing a working routine outside normal practice, we have signposted ethical and psychological support for individuals. We have also focused on our patients: we have facilitated a national alert system to register all neurological COVID cases, coordinating research efforts on this new disease; finally we have defined how to identify the most vulnerable patients under our care. When this initial wave of the pandemic subsides, we will have planned for return to the new 'norm', ready to embrace innovation where appropriate, aiming to minimise fall-out in our chronic disease population, and potentially having enhanced and modernised our services.</p
Theory of mind in frontotemporal dementia
No full textPatients with frontotemporal dementia (FTD) exhibit marked changes in social and emotional functioning including lack of empathy, disinhibition, altered emotional reactivity, apathy and lack of insight. These changes are believed to be dependent on progressive frontal and temporal lobe degeneration. In this review, we discuss the nature of defective theory of mind and empathy in this group and relate it to regional dysfunction in the orbitofrontal and medial prefrontal cortex, based on evidence from several recent studies. The role of executive ability and co-existing emotional deficits are also considered
Clinical nurse specialist's role in young-onset dementia care
No full textPost-diagnostic care in young-onset dementia (YoD) varies, from something that is occasionally structured, to improvised, to frequently non-existent depending on geographic region. In a few regions in England, a nurse designated to helping families may exist. This study aimed to describe this seldom-observed nursing role and its content. It used an investigative qualitative case study design based on the analysis of two YoD clinical nurse specialists (CNSs) describing the work they did in providing post-diagnostic care to YoD service users. The CNSs address various areas affected by mid-life dementia, including patients' mental health, caregiver stress and families' psycho-social problems. They use various approaches in delivering care, including making home visits, acting as a personal contact for service users and liaising with other health and social care services. Desirable attributes of a CNS service include service users having access to the same CNS throughout their care, receiving timely care and experiencing longer-term support and reassurance. In the post-diagnostic period, service user needs are often more psycho-social than medical, and the CNS role can complement and add value to clinical appointments. The role allows service users to be managed in the community, to receive information, guidance and advice and can prevent and de-escalate problems.</p
REACT-HD online group: supporting people living with pre-symptomatic Huntington's disease
No full textBackground: people with pre-symptomatic Huntington's disease (PSHD) carry a mutant gene that causes a progressive brain disease, with their offspring at 50% risk of developing Huntington's disease (HD). People know they will develop the condition, but not when, and services are generally not designed to care for people in this anticipatory stage.Aims: to explore the support and educational needs of people in the PSHD stage and assess their experience of attending a virtual group.Methods: user-driven virtual sessions followed by anonymous surveys.Findings: four main themes were identified: 1) what to expect from HD in the future; 2) tips to keep healthy; 3) how HD is impacting your life and the life of others; and 4) research update – requested at every session. Attendees described the positive impact of the group.Conclusions: user-driven virtual group sessions show a positive impact on PSHD patients and can be a useful resource to support other people with complex diseases remotely
ADCOMS sensitivity versus baseline diagnosis and progression phenotypes
No full textBackground: the Alzheimer's Disease COMposite Score (ADCOMS) is more sensitive in clinical trials than conventional measures when assessing pre-dementia. This study compares ADCOMS trajectories using clustered progression characteristics to better understand different patterns of decline.Methods: post-baseline ADCOMS values were analyzed for sensitivity using mean-to-standard deviation ratio (MSDR), partitioned by baseline diagnosis, comparing with the original scales upon which ADCOMS is based. Because baseline diagnosis was not a particularly reliable predictor of progression, individuals were also grouped into similar ADCOMS progression trajectories using clustering methods and the MSDR compared for each progression group.Results: ADCOMS demonstrated increased sensitivity for clinically important progression groups. ADCOMS did not show statistically significant sensitivity or clinical relevance for the less-severe baseline diagnoses and marginal progression groups.Conclusions: this analysis complements and extends previous work validating the sensitivity of ADCOMS. The large data set permitted evaluation-in a novel approach-by the clustered progression group.</p
Activities of daily living in behavioral variant frontotemporal dementia: Differences in caregiver and performance-based assessments
No full textPatients with the behavioral variant of frontotemporal dementia have marked impairment in everyday life, yet little is known about factors underlying this impairment. Moreover, a recently identified subgroup with normal brain imaging has an excellent prognosis (phenocopy cases) and their performance on activities of daily living (ADL) tasks is unknown. Eighteen behavioral variant frontotemporal dementia patients were assessed on 2 ADL measures, the Disability Assessment for Dementia, a caregiver-based interview, and the Assessment of Motor and Process Skills, a performance-based instrument. Behavior change, global cognition, executive function, and magnetic resonance imaging brain atrophy were also evaluated. There was no association between the 2 ADL measures. A model combining the Addenbrooke's Cognitive Examination Revised (global cognition) and Frontal Systems Behavior Scale (frontal dysfunction) explained the variance on ADL performance. A qualitative rating distinguished between pathologic and phenocopy patients better than the performance-based assessment. Degree of frontal dysfunction and overall dementia determined the level of ADL impairment. The phenocopy patients were clearly distinguishable when evaluated using a performance-based, and even better with a qualitative rating assessment
Quality of life assessments in individuals with young-onset dementia and their caregivers
No full textBackground: quality of life (QoL) has seldom been investigated or explicitly measured in young-onset dementia (YoD). The aims of this study were (1) to investigate and compare QoL self- and proxy reports in a sample of YoD patients and caregivers using different conceptual assessments of QoL and (2) to examine the relationship between caregiver QoL and both burden and mental health.Methods: there were 52 participants (26 YoD patient-caregiver dyads). The design was cross-sectional and part of a larger longitudinal prospective cohort study of YoD patients and caregivers. Primary measures included generic QoL (World Health Organization Quality of Life-short version [WHOQOL-BREF]), dementia-specific QoL (Quality of Life in Alzheimer's Disease Scale [QoL-AD]), health-related QoL (EQ5D), and a single-item QoL measure. Secondary measures included caregiver burden (Zarit Burden Index), mental health (Hospital Anxiety and Depression Scale), and dementia severity (Clinical Dementia Rating).RESULTS: patient QoL self-reports were higher than caregiver proxy reports on the QoL-AD (P = .001). Patient QoL self-reports for the WHOQOL-BREF (P < .01) and single-item QoL (P < .05) measure were significantly higher than caregiver self-reports. Dementia severity had no relationship with QoL self-reports. Caregiver burden, anxiety, and depression were negatively correlated with QoL when measured using a generic and single-item measure, but not with the health-related measure.Discussion: patients and caregivers show a disparity in QoL reports, with patients tending to report higher QoL. Caregiver burden, anxiety, and depression should be areas targeted for interventions when supporting caregivers.</p
Variant Creutzfeldt-Jakob disease: neuropsychological profile in an extended series of cases.
No full textNeuropsychological data on an extended series of cases of variant Creutzfeldt-Jakob Disease (vCJD) are presented, complementing earlier findings from smaller sample studies of this condition. Distinct neuropsychological features in this extended series included relatively preserved verbal knowledge, immediate verbal memory span, and elementary visual processing. This sparing contrasted with ubiquitous impairment in every vCJD patient on timed tests of verbal fluency and digit-symbol substitution. There were also high rates of impairment on tests of memory, and of visuoperceptual and visuospatial reasoning. Our findings lend support to the view that distinctive neuropsychological features may be one of the diagnostic markers of the condition. (JINS, 2009, 15, 807–810.
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