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Accessible summary We wanted to know what people with learning disabilities know about dementia. We asked service users what the word meant to them, if they knew anyone with dementia, and what it was like to share a house with someone who has dementia. We learnt that: • Service users can know a lot about dementia. • Living with someone with dementia can be really hard – and staff do not always have enough time for everyone else. • Services should think more about how dementia affects everyone – not just the person who has the dementia. This paper reports on research that illuminates how people with a learning disability understand dementia and indicates the implications of these understandings for developing appropriate models of care. As this new policy and practice area struggles to provide appropriate and effective models of care for people with a learning disability and dementia, an awareness of service users’ understandings of dementia leads to a number of important insights. The wider research programme from which this paper is drawn aims to identify best practice in supporting people with learning disabilities to stay in their own homes as they grow older and develop dementia. A combination of focus groups, ethnography and individual interviews were conducted at eight sites across England. Participants were people with a learning disability who had dementia, and those who have lived with someone with dementia. The findings have the potential to improve support to this population as they grow older. [ABSTRACT FROM AUTHOR]

Accessible summary • This paper is about a workshop held by researchers from the University of Leeds. • The researchers looked at one area to see if people were doing things about health that the Government said they should in Valuing People. • The research found out that there is still a lot of work to do in the area to meet these targets. People came to a workshop to talk about this. They thought that: • Learning disability services should lead the way and draw up a plan about what needs to happen. • People who run health services should make sure they set targets for GPs and hospitals that fit in with the plan. • Government should make sure that the targets they set for GPs also fit in with Valuing People targets. • This research is important because it can show what helps health services improve for people with learning disabilities and what gets in the way. Research at the University of Leeds has evaluated how well changes to healthcare proposed in the Government White Paper Valuing People ( Department of Health 2001 ) were being implemented in one locality and their impact on people with learning disabilities. The project had a developmental aspect and incorporated two workshops over the course of the study to disseminate preliminary findings. These were used to help key stakeholders evaluate progress and to inform discussions about what should happen next in the fieldwork area. This paper discusses recommendations from the first research workshop at which preliminary findings from the study were presented. The workshop involved health and social care providers and managers, people with learning disabilities, voluntary and community organizations. It gives an overview of local issues relevant to the White Paper health targets and highlights those that need to be resolved before these targets can be achieved. These issues are likely to be replicated in other areas of England and Wales and have implications for leadership, strategy, the allocation of resources and structures of accountability in health and social care agencies. [ABSTRACT FROM AUTHOR]

This paper explores access to palliative care services by people with learning disabilities. It is based on a study of specialist palliative care professionals in London, involving 32 semi-structured interviews and 543 postal questionnaires. We focus on one aspect of the findings, related to the current use of specialist palliative care services by people with learning disabilities. The results indicate that such services are under-used by this group. We discuss possible reasons for low referral rates, including late diagnosis and lack of understanding among both learning disability services and palliative care services about each other's roles. We highlight the importance of collaboration, and the need for further staff training. [ABSTRACT FROM AUTHOR]

The England and Wales National Health Service (NHS) Executive's guidance on the discharge of mentally disordered people, including those with learning disabilities, requires that risk assessment is a component part of the Care Programme Approach (CPA). The guidance indicates that whenever possible, risk assessments should be carried out systematically using a standardised approach. For a number of reasons, practitioners are resistant to moving away from reliance on clinical judgements when making their assessments. This paper explores the issues underlying this tension. A solution is offered to the difficulty clinicians often experience in incorporating risk assessment tools into their clinical practice. A case example is given to illustrate how clinical assessments of offenders with learning disabilities can be utilised to estimate the risks presented. By demonstrating this procedure, a protocol for reaching clinically defensible decisions about the risks presented by clients is described, which also allows for the targeting of priority therapeutic and management interventions. [ABSTRACT FROM AUTHOR]