These results confirm previous correlational research on caregiver burden. Furthermore, due to the use of multiple regression analysis the findings also show factors that are clear predictors of caregiver burden and we offer possible suggestions from these findings on future clinical practice interventions on caregiver burden.

Routine assessment of caregiver stress in clinical care may facilitate timely intervention and potentially improve both patient and caregiver outcomes.

The National Alzheimer's Plan calls for improving health care for people living with dementia and supporting their caregivers as capable health care partners. Clinically useful measurement tools are needed to monitor caregivers' knowledge and skills for managing patients' often complex health care needs as well as their own self-care. We created and validated a comprehensive, caregiver-centered measure, Managing Your Loved One's Health (MYLOH), based on a core set of health care management domains endorsed by both providers and caregivers. In this article, we describe its development and preliminary cultural tailoring. MYLOH is a questionnaire containing 29 items, grouped into six domains, which requires <20 min to complete. MYLOH can be used to guide conversations between clinicians and caregivers around health care management of people with dementia, as the basis for targeted health care coaching, and as an outcome measure in comprehensive dementia care management interventions.

BackgroundCurrent UK health research policy aims to increase the number of participants entering clinical trials. With the emphasis upon increasing participation, there is a danger that the relatively small numbers of patients with Huntington's disease (HD), a neurodegenerative disease, are repeatedly requested to take part in research.AimThe aim of this study was to investigate the attitudes and perceptions of research among people with HD and their carers. The objectives were to explore their understanding of research and their experiences during participation.MethodsTwelve participants with HD (ranging from pre-symptomatic to moderately severe HD) and ten carers were recruited to the study. All participants had participated in a clinical study and/or were part of the Euro-HD Registry study. A qualitative approach and interpretative phenomenological analysis was used for the study.ResultsThe main theme to emerge from the data was the substantial role that carers play in studies. Carers described not only a domestic impact but also an increased pressure due to their information-processing and decision-making role in studies. Conversely, service users appeared to play a more passive role in the research process. Nevertheless, both service users and carers reported a high level of motivation for participation in studies.ConclusionBoth service users and carers were very committed and enthusiastic about research but the increased burden on carers suggested by the study, needs to be addressed in order to maximise patient recruitment and retention to studies.

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