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Acceptability to patients, carers and clinicians of an mHealth platform for the management of Parkinson's disease (PD_Manager): study protocol for a pilot randomised controlled trial

Background: Parkinson's disease is a degenerative neurological condition causing multiple motor and non-motor symptoms that have a serious adverse effect on quality of life. Management is problematic due to the variable and fluctuating nature of symptoms, often hourly and daily. The PD_Manager mHealth platform aims to provide a continuous feed of data on symptoms to improve clinical understanding of the status of any individual patient and inform care planning.

Thu, 05/23/2019 - 11:52

Dignity in people with frontotemporal dementia and similar disorders - a qualitative study of the perspective of family caregivers

Background Frontotemporal dementia (FTD) constitutes on average 10-15% of dementia in younger persons (≤65 years old), but can also affect older people. These patients demonstrate a decline in social conduct, and/or language aphasias, apathy, and loss of insight that is gradual and progressive. Preservation of dignity seems to be highly relevant both before and after admission to different types of institutionalized care, but the research is scant.

Fri, 04/12/2019 - 15:17

The start of caring for an elderly dependent family member: a qualitative metasynthesis

Background: The family often takes care of an elderly person who suddenly becomes dependent. This greatly affects different aspects of the caregivers’ lives. The aim of this study is to explore the initial experiences, during the first year of care, of persons who suddenly become caregivers for elderly dependent relatives. Methods: A search in CINAHL, PsycINFO, WOS, Medline, and Scopus and a metasynthesis of qualitative research were conducted including 19 articles.

Wed, 04/03/2019 - 13:54

Attachment, mentalisation and expressed emotion in carers of people with long-term mental health difficulties

Background: Expressed emotion (EE) is a global index of familial emotional climate, which is comprised of emotional over-involvement (EOI) and critical comments (CC)/hostility. Although EE is an established predictor of negative outcomes for both people with long-term mental health difficulties and their family carers, its psychological underpinnings remain relatively poorly understood. This paper examined associations between attachment, mentalisation ability and aspects of EE.

Sun, 03/31/2019 - 17:27

Development and validation of a screener based on interRAI assessments to measure informal caregiver wellbeing in the community

Background :Informal caregivers are invaluable partners of the health care system. However, their caring responsibilities often affect their psychological wellbeing and ability to continue in their role. It is of paramount importance to easily identify caregivers that would benefit from immediate assistance. Methods: In this nonexperimental cohort study, a cross-sectional analysis was conducted among 362 informal caregivers (mean age 64.1 years, SD ± 13.1) caring for persons with high care needs (mean age 78.6 years, SD ± 15.0).

Fri, 03/29/2019 - 12:19

"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study

Background: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support.

Fri, 03/29/2019 - 11:49

A qualitative study of carers' experiences of dementia cafes: a place to feel supported and be yourself

Background: Unpaid, informal carers or caregivers play an important role in supporting people living with dementia but the role can be challenging and carers themselves may benefit from support. Alzheimer’s, dementia or memory cafés are one such form of support . These cafés are usually provided in the voluntary sector and are a place where people with dementia and those supporting them, usually family carers, can meet with others in similar situations.

Mon, 03/25/2019 - 12:56

Computer and telephone delivered interventions to support caregivers of people with dementia: a systematic review of research output and quality

Background: To assess the scope, volume and quality of research on the acceptability, utilisation and effectiveness of telephone- and computer-delivered interventions for caregivers of people living with dementia. Methods: Medline, EMBASE, CINAHL and Cochrane databases were searched (Jan 1990 – Dec 2016). Eligible papers were classified as data-based descriptive, measurement or intervention studies. Intervention studies were first categorised according to mode of delivery (e.g.

Fri, 03/22/2019 - 15:07

Care-related Quality of Life of informal caregivers of the elderly after a hip fracture

Background: Reforms in the Dutch healthcare system in combination with the aging of the population will lead to a strong increase in the demand for informal care in the Netherlands. A hip fracture is one of the most important causes of hospital admissions among frail elderly and informal caregivers experience stress that may have significantly negative impact on the caregivers’ Quality of Life.

Fri, 03/22/2019 - 13:10

“Ensure that you are well aware of the risks you are taking…”: actions and activities medical tourists’ informal caregivers can undertake to protect their health and safety

Background When seeking care at international hospitals and clinics, medical tourists are often accompanied by family members, friends, or other caregivers. Such caregiver-companions assume a variety of roles and responsibilities and typically offer physical assistance, provide emotional support, and aid in decision-making and record keeping as medical tourists navigate unfamiliar environments.

Fri, 03/22/2019 - 13:01

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