Jour

Huntington's disease is a genetic, neurological disorder characterized by mid-life onset, involuntary movements, cognitive decline, behavioral disturbance, and inexorable progression. The impact of Huntington's disease is devastating for individuals and their families as it is a disease with a long trajectory; many young people are aware that they may develop the illness for years before there are obvious symptoms. There is therefore ample opportunity to plan and choreograph the care and supportive services for people with Huntington's disease and their families.

Informal carers are enormously involved in giving care to their disabled or needy relatives or acquaintances. To care can go along with positive private and health effects. Nevertheless it is proven that informal carers are under a greater risk to suffer from health problems, social isolation and restrictions in professional life. The primary care team can take on a key role by providing support to informal carers. To identify those carers and their burden is essential.

Aim.  This paper is a report of a study conducted to uncover the strategies that women caregivers of relatives with advanced dementia use to rest from care-giving.

Background.  Respite consists of activities and situations that briefly take caregivers away from their care-giving responsibilities. Qualitative studies are focusing on respite as an outcome and are deepening our knowledge about the experience of caregivers’ rest. The strategies that caregivers use to relieve the burden, however, are not fully known.

Objectives: A substantial number of children are involved in informal caregiving and make a significant contribution to health care delivery. While this places high levels of demand on their coping resources, there is some evidence that these children find benefit in their caring role. The Young Carers Perceived Stress Scale (YCPSS) (Early et al., 2006, J. Child Fam. Stud., 15, 169) identified a positive dimension of caring, which appears to have potential in terms of measuring benefit finding in this group.

The diagnosis of a chronic progressive condition such as multiple sclerosis (MS) can impact on many aspects of daily life. Living with, and caring for, an individual with such a condition is likely to have emotional and psychological consequences. We carried out semi‐structured interviews with nine partners and analysed the interview transcripts using grounded theory (Strauss & Corbin, 1998), the phase presented in this article formed part of a larger overall study that explored the impact of living with MS for partners and a family.

Objective: Alzheimer's disease (AD) burdens not only the person, but also the person's caregiver(s). This burden has been linked to negative health effects for caregivers. To that end, a survey of Canadian caregivers of persons with AD/other dementias was conducted to investigate the social, physical, psychological and financial impact of AD and/or dementia-related conditions on caregivers' quality of life.

GPs regularly encounter informal carers who, despite their legal rights to support, find it difficult to access the help available to them and receive little or no assistance. Increasing attention is being given to ‘hidden’ carers, who seem particularly unlikely to access support.

The aim of this review was to identify the most frequently encountered longer-term problems experienced by stroke patients and their informal carers. Systematically identified qualitative studies describing self-reported experiences of stroke-related long-term problems were independently reviewed and the findings analysed using a clustering technique. Twenty-three qualitative studies, which included approximately 500 patients and 180 carers, were identified by the search methods.

Objective: We reviewed evidence on the cost-effectiveness of prevention, care and treatment strategies in relation to dementia.

Methods: We performed a systematic review of available literature on economic evaluations of dementia care, searching key databases and websites in medicine, social care and economics. Literature reviews were privileged, and other study designs were included only to fill gaps in the evidence base. Narrative analysis was used to synthesise the results.