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'It's a huge maze, the system, it's a terrible maze': dementia carers' constructions of navigating health and social care services

Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked 'Duties to Care' and 'Dementia Talking' projects, in this article we focus on British carers' talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis.

Thu, 07/20/2017 - 15:16

Young carers as social actors: coping strategies of children caring for ailing or ageing guardians in Western Kenya

There is a vast body of research on the impact of HIV/AIDS on children, but little which acknowledges the role of children in providing care and support for ailing parents or ageing guardians. There has been a tendency to downplay the active role and agency of young carers, with young carers often represented as victims of damaging circumstances that compromise their psychosocial well-being.

Thu, 07/20/2017 - 15:15

'Your friends don't understand': invisibility and unmet need in the lives of 'young carers'

This paper is based on a study of the experiences of people identified as 'young carers', commissioned by the National Assembly for Wales as part of a wider review of carers' needs and services. Following a brief review of some of the previous research in this area, the paper reports key findings of the research, using the words of children and young people as much as possible.

Thu, 07/20/2017 - 15:15

Informal carers of mentally infirm elderly in Lancashire

Objectives: To investigate the determinants of satisfaction in caregiving and to compare satisfaction in care-giving amongst carers of demented and non-demented mentally infirm elders; and, assess carer attitudes and concerns, and their implications on care in the community.; Design: Cross-sectional study of informal carers of the elderly referred to a psychogeriatric service, using a questionnaire investigating carer satisfaction (CASI), care-recipient dependency needs, carer burden (CADI), carer concerns and attitudes in relation to caregiving, and the 28

Thu, 07/20/2017 - 15:15

Stroke: the increasing complexity of carer needs

In Australia, more than 346,000 individuals who experience a stroke return to living in their homes with varying degrees of disability. They rely on emotional and physical support from informal carers, typically family members. Informal carers have an indispensable role in patient care poststroke, and the ability of carers to manage this role effectively is crucial for stroke survivors to be able to return home.

Thu, 07/20/2017 - 15:15

Family caregiver strategies to encourage older relatives with dementia to use social services

Aim: To elicit the strategies used by Japanese family caregivers in the community to encourage older relatives with dementia to use adult daycare and respite stays.

Background: Older adults with dementia often require adult daycare and respite stays for their family caregivers to gain respite from care-giving. However, persons with dementia often face difficulty in new environments and timely access to sufficient services may be difficult to achieve. Few studies have examined how family caregivers encourage their service use.

Design: A qualitative method.

Thu, 07/20/2017 - 15:15

Non-motor symptoms of Parkinson's disease: diagnosis and management

Non-motor symptoms (NMS) of Parkinson's disease (PD) are a key determinant of health, quality of life (QoL) and societal cost of PD. They are often less appreciated than motor symptoms but are important sources of disability for manyPDpatients. Literature search was performed using the reference databases Medline, Science Citation Index and EMBASE. The keywords used were 'non-motor symptoms', Parkinson's disease, olfaction and constipation. Papers discovered by this search were reviewed, as were references cited therein.

Thu, 07/20/2017 - 15:15

The COPE index -- a first stage assessment of negative impact, positive value and quality of support of caregiving in informal carers of older people

Data was collected in five countries from informal carers of older people ( n = 577) via a common protocol. Carers completed: (1) a 17-item version of the Carers of Older People in Europe (COPE) Index, an assessment of carers' perceptions of their role : (2) a questionnaire on demographic and caregiving circumstances : and (3) three instruments included for the criterion validation of the COPE Index (the General Health Questionnaire, the Hospital Anxiety and Depression Scale, and the World Health Organization Quality of Life-BREF).

Thu, 07/20/2017 - 15:15

Loss of autonomy, control and independence when caring: a qualitative study of informal carers of stroke survivors in the first three months after discharge

Purpose. Stroke has far reaching effects on both stroke survivors and their informal carers. Research has highlighted changes in autonomy of stroke survivors, but insufficient focus has been put on the associated reduced control and independence of their informal carers. This study investigates the experiences of informal carers of stroke survivors from discharge to 3 months later.

Thu, 07/20/2017 - 15:15

User evaluation of the DEMentia-specific Digital Interactive Social Chart (DEM-DISC). A pilot study among informal carers on its impact, user friendliness and, usefulness

Objective: The need for information about the disease and coping with the consequences, as well as on available care and welfare services, is frequently unmet in people with dementia and their carers. To provide carers of community-dwelling people with dementia with tailored information, the DEMentia-specific dynamic interactive social chart (DEM-DISC) was developed. The impact on the daily life of people with dementia and their carers, the user friendliness and usefulness of a first prototype of DEM-DISC was evaluated.

Thu, 07/20/2017 - 15:15

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