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Support to family carers of patients with frontotemporal dementia

OBJECTIVES: To examine the provision of support to patients with frontotemporal dementia (FTD) and their family carers compared with patients with early onset Alzheimer's dementia (AD) and their carers, and the carers' satisfaction with the support. METHOD: Data came from 60 dyads of patients with dementia and their principal family carers, 23 subjects with frontotemporal dementia and their 23 carers, and 37 subjects with early onset Alzheimer's disease and their 37 carers. RESULTS: Patients with a frontotemporal dementia diagnosis were significantly more frequently offered stays in nursing

Thu, 07/20/2017 - 15:18

Huntington disease: families' experiences of healthcare services

Aim.  This paper is a report of a study of the perceptions of family caregivers regarding the availability and adequacy of health and social care services for their family member with Huntington disease, and to compare findings from these reports in United Kingdom and United States of America samples.

Background.  Huntington disease is an inherited neurodegenerative condition. Family members often take responsibility for care of relatives with long-term conditions. Studies have demonstrated there are both positive and negative outcomes for carers.

Thu, 07/20/2017 - 15:18

Family voices: life for family carers of people with intellectual disabilities in Ireland

Background: Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers.

Materials and Method: This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis.

Thu, 07/20/2017 - 15:18

System-wide information about family carers of adults with intellectual/developmental disabilities: scoping review of the literature

Family carers play an important role supporting individuals with intellectual and developmental disabilities (I/DD) into adulthood. Funders of services often desire this ongoing involvement by family members yet they rarely collect data about family carers. As policy makers and planners are increasingly recognizing the need for information related to indicators of system performance, a scoping review was conducted to identify system-wide information needed about family carers of adults with I/DD that would help improve the quality of service provided.

Thu, 07/20/2017 - 15:17

Views and experiences of people with intellectual disabilities and their families: (1) the user perspective

The present paper presents a descriptive summary of the views and experiences of people with intellectual disabilities (IDs) as they have been represented in research and other literature. The authors develop further the DoH Research Initiative on Learning Disability: Proposal for a Research Review on the Views and Experiences of Users and Carers, a review report commissioned by the Department of Health on the views and experiences of users and family carers focusing on the ways in which research might contribute to policy and practice.

Thu, 07/20/2017 - 15:17

An investigation of carers' burden: before and after a total hip replacement

Osteoarthritis in the hip joint is a chronic degenerative condition, causing pain and disability. As the disease progresses, the individual's health deteriorates. This often results in one of the family members having to assume a carer role to assist the care receiver in personal and domestic activities of daily living. The purpose of this study was to investigate whether carers experienced stress from looking after individuals with osteoarthritis who were waiting for a total hip replacement.

Thu, 07/20/2017 - 15:17

Informal care in farming families in Northern Ireland: some considerations for social work

This paper is the result of a study of the dynamics of care-giving within farming families in Northern Ireland. It is argued that whilst much is known about informal care, existing knowledge is largely urban based and quantitative, and therefore limited. Following in-depth interviews with 'farm wives' it is concluded that for these women care-giving patterns are dependent on a particular set of cultural expectations and norms. Within farming families there is much resistance to becoming involved with formal social services.

Thu, 07/20/2017 - 15:17

Turn your life around: person centred planning and families

A short film aimed at carers which presents the story of two families and their experiences of person centred planning. The DVD also contains background information about person centred planning and contacts for further information.

Thu, 07/20/2017 - 15:17

Determinants of the caregiver's appraisal in the context of caregiving

This article seeks to examine the factors affecting the caregiver's appraisal of caring for a mentally ill relative. Two hundred and ten caregivers attending to a family member with chronic mental illness in India were interviewed for the study. the results of path analysis indicate burden experienced in the context of caregiving, patient's illness characteristics, and kinship support to be the most significant factors contributing to the caregiver's appraisal of the caregiving experience. The implications of the findings are summarised.

Thu, 07/20/2017 - 15:17

Reaching out or missing out : approaches to outreach with family carers in social care organisations

Outreach is advocated as a way of improving the uptake of services among underserved populations and of filling the gaps between mainstream services and the populations they are intended to support. Despite the policy emphasis on providing better help for family carers, research consistently shows that many of those providing unpaid care to a family member or friend report difficulties in finding out about the assistance to which they are entitled.

Thu, 07/20/2017 - 15:17

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