Background: Carers play an important role in providing practical and emotional support to people with dementia. There is a need to ensure carers are supported in this role to maximise their ability to provide care while maintaining their own wellbeing. This study aimed to develop a psychometrically rigorous self-report instrument to assess the unmet needs of carers of people with dementia.
Methods: The Unmet Needs Instrument for Carers of People with Dementia (UNI-C) was developed using a multi-methods approach including a comprehensive literature review, in-depth interviews and focus groups, expert opinion, cognitive interviews and pilot testing. A cross-sectional survey of 169 carers was used to examine the psychometric characteristics of the instrument. Specifically, internal reliability, and structural and convergent validity were assessed and the number of items reduced.
Results: The original 80 item instrument was reduced to 46 items across four domains based on prevalence, item-total and pairwise correlations, factor loadings and clinical relevance. The resulting instrument, named the UNI-C46, showed acceptable evidence of structural and convergent validity, and good internal reliability (α = 0.94) and acceptability. The four domains measure 'Your own wellbeing' (16 items), 'Finding information' (12 items), 'Managing practical needs' (10 items), and 'Managing dementia symptoms' (8 items).
Conclusions: This study provides the first demonstration of reliability and validity of the UNI-C46. Further testing of these properties with a larger and more representative sample of carers is recommended.
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http://dx.doi.org/10.1186/s41687-025-00856-7 | DOI Listing |
JMIR Form Res
March 2025
Program in Digital Medicine, Department of Medicine, University of Massachusetts Chan Medical School, Worcester, MA, United States.
Background: Screening for cognitive impairment in primary care is important, yet primary care physicians (PCPs) report conducting routine cognitive assessments for less than half of patients older than 60 years of age. Linus Health's Core Cognitive Evaluation (CCE), a tablet-based digital cognitive assessment, has been used for the detection of cognitive impairment, but its application in primary care is not yet studied.
Objective: This study aimed to explore the integration of CCE implementation in a primary care setting.
J Neurol
March 2025
Department of Clinical Research in Neurology, Center for Neurodegenerative Diseases and the Aging Brain, University of Bari 'Aldo Moro', "Pia Fondazione Cardinale G. Panico", Via San Pio X, 73039, Tricase, Lecce, Italy.
Background: Fatigue is a common non-motor symptom (NMS) in Parkinson's disease (PD), affecting up to 50% of patients. It is suggested that PD-related fatigue may contribute to the burden perceived by caregivers.
Objective: This study aims to evaluate the impact of PD-related fatigue on caregiver burden.
Health Expect
April 2025
Department of General Practice, Université Clermont Auvergne, UFR Medicine, Clermont-Ferrand, France.
Introduction: Health restrictions resulting from COVID-19 made it more difficult for families to mourn. The death announcement is a significant moment for families. The aim of this study was to explore the experiences, perceptions and expectations of families who were informed of the death of a close relative in the hospital, at home or in a care home for dependent elderly people (EHPAD) during the COVID-19 pandemic.
View Article and Find Full Text PDFHealth Expect
April 2025
Department of Psychology, University of Limerick, Limerick, Ireland.
Background: Experience-Based Co-Design (EBCD) is a popular collaborative process where service users and healthcare providers share their experiences of using and delivering services to identify ways to adapt services to enhance those experiences.
Objective: This study aimed to identify enablers and barriers to the successful implementation of EBCD as part of Ireland's recently adopted Enhanced Community Care (ECC) programme.
Design: Service users and staff at two sites (N = 17) participated in an accelerated EBCD process designed to enhance service provision for older people and those living with chronic conditions.
J Appl Res Intellect Disabil
March 2025
American Institutes on Research, Arlington, Virginia, USA.
Background: Many parents are the primary caregivers for their adult children with intellectual and/or developmental disabilities. While there can be many benefits of caregiving, there can also be negative consequences for the parent caregiver and, in turn, for their adult child with intellectual and/or developmental disabilities. Given the critical care that parents provide to their adult children with intellectual and/or developmental disabilities, we aimed to understand the supports parents need to be effective caregivers.
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