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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 We gave a questionnaire to self-advocates who were attending a conference. The questionnaire asked them how they felt about the information they get with their medicine., Fifty-eight people completed the questionnaire. Many of them said they did not get enough information about their medicine. Most people wanted easy-read leaflets and pictures., There are many different places to find easy-read information on the internet. We think they should be collected and checked. We also think that doctors and chemists need to spend more time with people to explain about medicines., Abstract Background Previous research has found that people with learning disabilities are not given prescription information that is tailored to their needs. We wanted to find out people's information requirements. Materials and Methods A questionnaire was co-produced by the authors and consultants with learning disabilities. It asked what information people received from their GP and pharmacist about medications. The questionnaire was circulated at a self-advocacy conference in the North of England. Fifty-eight self-advocates completed the questionnaire. Results Information from GPs and pharmacists was mainly instructional, referring to when and how to take the medicine and dosage. Most respondents struggled to read the leaflets and remember verbal information. Many wanted the information in easy-read format, and some wanted pictures or diagrams as well. A key theme was that health professionals often talked only to carers or support workers rather than involving the patient directly, and some respondents disclosed that they were not informed about side effects or alternative medications. Conclusions Health professionals should take time to discuss health issues and medication with the individual rather than only with carers. This could be facilitated by providing information in an accessible format. [ABSTRACT FROM AUTHOR]