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Children and Adolescents Providing Care to a Parent with Huntington's Disease: Disease Symptoms, Caregiving Tasks and Young Carer Well-Being

Background: Over 30,000 people in the U.S. have Huntington’s disease (HD), a disorder with numerous complicated, long-lasting and stigmatizing symptoms. Caregiving typically falls to the family, yet little is known about the caregiving experience of children and adolescents in the home.

Thu, 07/20/2017 - 15:20

Emotional and Tangible Reciprocity in Middle- and Older-Aged Carers of Adults With Intellectual Disabilities

Reciprocal benefits may exist in relationships between carers and their adult sons/daughters with intellectual disabilities, but the topic has not been widely studied. The present study investigated whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8).

Thu, 07/20/2017 - 15:18

Perceptions and management of change by people with dementia and their carers living at home

This article presents findings from a research study that examined, by observation and interview, the nature of care as a form of social organization in the homes of people with dementia whose care was at least partly provided by relatives or friends. Twenty situations were included in which the carers and people with dementia were interviewed. Each participating pair was observed for an average of nine hours. Change was perceived, on the whole, in negative terms for both caregiver and the person with dementia.

Thu, 07/20/2017 - 15:18

A qualitative analysis of changes in relationship dynamics and roles between people with cancer and their primary informal carer

It is widely accepted that cancer is an intersubjective experience that impacts upon the psychological well-being of people with cancer and informal carers, as well as on couple relationships. This qualitative study examined the nature and consequences of cancer on the relationship between informal carers and the person with cancer, from the perspective of Australian cancer carers. Sixty-two carers (42 women and 20 men), across a range of cancer types, stages and relationship dyads took part in semi-structured interviews.

Thu, 07/20/2017 - 15:17

A qualitative study of the experiences of long-term care for residents with dementia, their relatives and staff

Most older people living in 24-hour care settings have dementia. We employed qualitative interviews to explore positive and negative aspects of the experience of family carers, staff and people with dementia living in 10 homes in London and West Essex, selected to cover the full range of 24-hour long-term care settings. The interview used open semi-structured questions.

Thu, 07/20/2017 - 15:16

What to tell dementia caregivers: the rule of threes

Objectives: To determine and prioritise what information dementia caregivers wish to know at the time of diagnosis and later on in the illness, and in what form this information should be presented.

Method: 100 carers were recruited from community mental health teams (CMHT) and a memory clinic (MC). A semi-structured Carer Interview was administered covering possible symptoms and management.

Thu, 07/20/2017 - 15:15

‘The sooner you can change their life course the better’: the time-framing of risks in relationship to being a young carer

In this article, we compare accounts given by young carers and specialist support workers about the riskiness of becoming a carer relatively early in life. We argue that since the mid-1990s, the policy response has problematised the comparatively early adoption of a caring role as a risk factor for future personal development. This temporal issue has become societally organised around concern about NEETs (young adults not in education, employment or training).

Thu, 07/20/2017 - 15:15

The physical functioning and mental health of informal carers: evidence of care-giving impacts from an Australian population-based cohort

Informal carers represent a substantial proportion of the population in many countries and health is an important factor in their capacity to continue care-giving. This study investigated the impact of care-giving on the mental and physical health of informal carers, taking account of contextual factors, including family and work. We examined health changes from before care-giving commenced to 2 and 4 years after, using longitudinal data from the Household Income and Labour Dynamics in Australia survey. The sample comprised 424 carers and 424 propensity score-matched non-carers.

Thu, 07/20/2017 - 15:14

'Sustaining Place' - a grounded theory of how informal carers of people with dementia manage alterations to relationships within their social worlds

Aims and objectives: This paper presents a theory explaining the processes used by informal carers of people with dementia to mange alterations to their, and people with dementias' relationships with and places within their social worlds.

Thu, 07/20/2017 - 15:14

A multi-method evaluation of an independent dementia care service and its approach

Changes to approaches in dementia care and subsequent services over the last decade have meant that quality of care for people with dementia and their carers has undoubtedly improved. However, few in-depth dementia service evaluation studies are documented. Those that are tend to focus on traditional evaluation measures such as length of stay or functional improvement, or they concentrate on the perspectives of carers. This study used multiple methods within Fourth Generation Methodology to evaluate (SPECAL) Specialized Early Care of Alzheimer's, a dementia care service and approach.

Thu, 07/20/2017 - 15:13