User views

This report reviews the support available to informal carers of people with dementia, with specific attention being given to carers’ assessments (or “check ins”) and the provision of short breaks for carers.

This report shows the that majority of unpaid carers are unable to take sufficient breaks and also highlights an unfair and unequal provision of carers’ breaks services across England. The report is based on the results of a survey of over 1,000 carers in the UK and a freedom of information request to local authorities and clinical commissioning groups across England. Only 8 per cent of carers responding to the survey felt they had been able to take sufficient breaks.

Context: The US Congress in 2010 established the Program of Comprehensive Assistance for Family Caregivers (PCAFC) in the Department of Veterans Affairs’ (VA) healthcare system, expanding services for family caregivers of eligible veterans with injuries sustained or aggravated in the line of duty on or after 11 September 2001. The program includes a Caregiver Support Coordinator, stipends for caregivers, education/training, and additional services.

Based on the findings from research, this report makes recommendations provide better support for carers. The 12 policy recommendations cover five key themes of financial assistance, employment, identification and support, support networks and technology. Together, the policies together form a covenant for carers. The research looked at who informal carers are and the amount of care they provide, explored the experience of informal carers through two focus groups, and looked at the support available for carers internationally.

The authors explains how a growing UK-wide network, tide-together in dementia everyday, is ensuring that the expertise of carers influence dementia policy, research and practice. The network, created by carers for carers, does not provide direct support to services to people affected by dementia, so it's members are able to give completely impartial and independent feedback based soley on their lived experiences as carers. (Edited publisher abstract)

The experience of being a carer of a person with dementia at the end of life is expressed in these 12 accounts. This is a synthesis of the concerns and challenges for carers at the end of life. These accounts are often insightful and provide several views of carers’ and professionals’ experience. Having a close relationship as a carer gives a unique and poignant view. What emerges from this review is a range of perspectives that provide contrasting views of the heterogeneity of carers and professionals.

Reports on findings from the carer component of the Gwynedd Dementia Study. It is based on carer interviews, using quantitative and qualitative data. It describes the carers, their perceptions of their dependents' problems, the common challenges they face, their experiences of formal and informal support and, with reference to the literature, identifies implications for policy and practice. Levels of formal service inputs were low, but most of the carers appeared to receive the services they needed.

The author, from the organisation Rethink, gives his personal views on the current state of the mental health services; what users and carers would like their experience of mental health services to be; and the key areas to tackle in order to improve services.

Part 1 of a video by Viviana Fain-Binda for carers of people with dementia.  One carer talks about how she coped when her partner was diagnosed with dementia and how using a day care centre was able to support her.

Background: The concerns of older carers of an adult with disabilities have been well documented. The sudden incapacity or death of the carer can result in a crisis response rather than a planned transition to a chosen sustainable alternative care arrangement for the person with disability. Building on previous ‘Futures Planning’ projects, the aim of this project was to enrich the lives of people with disabilities and their carers whilst ensuring that their wishes for the future are documented to provide security.