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Commentary on the paper 'Dementia diagnosis and white lies: a necessary evil for carers of dementia patients?'

‘Thou shalt not lie’; ‘the truth, the whole truth, and nothing but the truth’. Both morality and the law contain clear statements about the importance of veracity. Yet, as Ginny Russell so eloquently describes, based upon personal experience with her mother in the UK, truth telling in dementia is fraught with problems. The problems are not only ethical, but can also be practical and emotional. They can arise on a daily basis for the family and friends of people with dementia, as well as for care staff and professionals.

Thu, 05/23/2019 - 14:45

Practitioners' understanding of barriers to accessing specialist support by family carers of people with dementia in distress

Distressing symptoms in dementia are hard to manage for many family carers. This article explores practitioners' perceptions of the barriers to accessing skilled behaviour management support encountered by carers. A survey of cases referred to the English National Health Service (<i>n</i> = 5,360) was followed by in-depth group discussions and practitioner interviews. Data revealed that practitioners focused on care home residents or older people with mental health problems other than dementia, rather than community-dwelling people with dementia and families.

Thu, 05/23/2019 - 14:30

Mental capacity legislation in the UK: systematic review of the experiences of adults lacking capacity and their carers

AIMS AND METHOD: Capacity legislation in the UK allows substitute decision-making for adults lacking capacity. Research has explored the experiences of such adults and their carers in relation to the Adults with Incapacity (Scotland) Act 2000, and the Mental Capacity Act 2005 in England and Wales. A systematic review of the relevant research was performed using a framework method. RESULTS: The legislation provided mechanisms for substitute decision-making which were seen as useful, but there were negative experiences.

Wed, 05/15/2019 - 10:29

Updated meta-review of evidence on support for carers

BACKGROUND: Policy and research interest in carers continues to grow. A previous meta-review, published in 2010, by Parker et al. (Parker G, Arksey H, Harden M. 'Meta-review of international evidence on interventions to support carers.' York: Social Policy Research Unit, University of York; 2010) found little compelling evidence of effectiveness about specific interventions and costs. OBJECTIVE: To update what is known about effective interventions to support carers of ill, disabled or older adults. DESIGN: Rapid meta-review.

Wed, 05/15/2019 - 10:03

Prisoner peer caregiving: a literature review

AIM: To explore the role of prisoner caregivers in providing peer social care to older prisoners and to identify methodological information and challenges to conducting research in prisons, to inform future research in this setting. METHOD: The literature review was conducted in two stages. In the first stage, a systematic literature review was undertaken to retrieve articles related to prisoner caregiving. The main themes from these articles were identified.

Wed, 05/15/2019 - 09:50

Volunteer peer support and befriending for carers of people living with dementia: an exploration of volunteers' experiences

With ageing populations and greater reliance on the voluntary sector, the number of volunteer-led peer support and befriending services for carers of people with dementia in England is set to increase. However, little is known about the experiences of the volunteers who deliver these interventions, many of whom are former carers.

Wed, 05/15/2019 - 09:34

When and how should relatives be paid through a direct payment?

Family members are delivering unpaid care to loved-ones because direct payments are insufficient to hire staff, writes Belinda Schwehr. 

Tue, 05/14/2019 - 20:06

Understanding the informational needs of patients with IPF and their caregivers : ‘you get diagnosed, and you ask this question right away, what does this mean?’

BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable lung disease whose intrusive symptoms rob patients of their quality of life. Patients with IPF rely on their caregivers for support and assistance in amounts that vary according to patients' individual circumstances and disease severity. Knowledgeable and well-informed patients and caregivers are best suited to deal with life-altering conditions like IPF.

Tue, 05/14/2019 - 19:29

Information-sharing with respite care services for older adults: a qualitative exploration of carers' experiences

Respite services play an important role in supporting older adults and their carers. When an older person is unable to fully represent themselves, provision of respite care relies on effective information-sharing between carers and respite staff. This study aimed to explore, from carers' perspectives, the scope, quality and fit of information-sharing between carers, older people and respite services.

Tue, 05/14/2019 - 15:46

Survivorship burden for individuals, households and society : estimates and methodology

With more and more individuals surviving cancer it is important to estimate the economic burden survivorship places on these individuals, and also on their friends, family, carers and the wider society. This paper provides a review of current estimates of the cost of living with and surviving cancer. Few studies have provided an all-encompassing estimate of the burden. A range of methodologies to estimate the direct health care costs, direct non-health care costs, productivity loss and informal care costs of surviving cancer are described.

Tue, 05/14/2019 - 15:16

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