Background:People with Down syndrome (DS) are an ultra-high risk population for Alzheimer’s disease (AD). Understanding the factors associated with age of onset and survival in this population could highlight factors associated with modulation of the amyloid cascade.Objective:This study aimed to establish the typical age at diagnosis and survival associated with AD in DS and the risk factors associated with these.Methods:Data was obtained from the Aging with Down Syndrome and Intellectual Disabilities (ADSID) research database, consisting of data extracted from clinical records of patients seen by Community Intellectual Disability Services (CIDS) in England. Survival times when considering different risk factors were calculated.Results:The mean age of diagnosis was 55.80 years, SD 6.29. Median survival time after diagnosis was 3.78 years, and median age at death was approximately 60 years. Survival time was associated with age of diagnosis, severity of intellectual disability, living status, anti-dementia medication status, and history of epilepsy. Age at diagnosis and treatment status remained predictive of survival time following adjustment.Conclusion:This study provides the best estimate of survival in dementia within the DS population to date, and is in keeping with previous estimates from smaller studies in the DS population. This study provides important estimates and insights into possible predictors of survival and age of diagnosis of AD in adults with DS, which will inform selection of participants for treatment trials in the future.

Accessible summarySometimes older people get confused and forget things and need lots of help: this is called dementia. People with Down’s syndrome are more likely to develop dementia than other people with learning disabilities. When people have dementia, they need extra help from their families or from their care staff.Psychologists talked to families and care staff about what they knew about dementia, and what they found difficult about caring for somebody with Down’s syndrome and dementia. They were asked about what help they got from services and what help they would like in the future.It was found that: Most people found it hard looking after someone with Down’s syndrome and dementia. Review meetings were very important to them. They asked to be there for assessments and meetings. Most people wanted to know more about Down’s syndrome and dementia. They asked for a booklet about it and for someone to explain it to them. Some people worried a lot about the future. SummaryIt is well established that people with Down’s syndrome are more likely to develop dementia than other people and that onset of dementia is likely to occur earlier at an earlier age. The article reports on a specialist service for people with Down’s syndrome and dementia. The service has offered dementia screening and assessment to people with Down’s syndrome for over 10 years and has also developed to offer support and training for carers. Semi‐structured interviews were conducted with family carers, relatives and staff about the impact on them of caring for someone with Down’s syndrome and how the dementia service supports them in this role. The resulting data were analysed using interpretative phenomenological analysis. The responses provide rich insights into the areas of ‘knowledge and information’, ‘coping and support’ and ‘concerns about the future’. Interviewees also identified services they wanted for the future. As a result of this evaluation, a number of changes have been proposed and begun to be implemented within the service. The results have important implications for other health, social care and voluntary organisations.

There is a current emphasis from Department of Health publications on the need for people to take responsibility for monitoring and improving their own health. This includes people with a learning disability (PLD). This paper presents the findings of a pilot study which investigated whether people with learning disabilities can understand and communicate more effectively symptoms of illness. Assessments for GPs, clients and carers were designed in order to ascertain the nature of consultations currently taking place, and the level of awareness that clients had of their body and being ill.From the assessment information gathered and reviews of the literature on primary health care access for PLD and children's experiences of pain, an appropriate teaching package was designed and a twice weekly group held for ten weeks. This aimed to teach body awareness and necessary skills for communicating with primary health care teams; and included the design, and implementation of a communication aid pack. Repeat assessments following the end of the group and after six months indicated that it is possible to teach people with learning disabilities to understand how their bodies function, to use pictures of pain to describe symptoms of illness and to understand more about the process of going to the doctors. This was facilitated by the use of communication aid resource which both doctors and clients evaluated as useful. For the information to be efficiently retained by the clients it is suggested that a greater degree of follow-up work is undertaken on completion of the teaching group with participants, carers and GPs.

Accessible summary• People with learning disabilities describe pain in terms of feelings or emotions.• Staff and doctors do not use pain recognition tools or communication aids.• People with learning disabilities often do not tell staff or family carers that they are in pain. If they do, they are unlikely to be given pain medication, and more likely to be taken to the doctors. • People with learning disabilities mostly know who is their doctor and understand what the doctor does. The majority of people said that the doctor explained what was wrong with them, what the medication was for and how often they needed to take it. • This research matters to people with learning disabilities. It is important that staff and carers recognise and manage pain well. Since this audit a pain training pack for staff and carers has been developed and is being used and booklets for both people with learning disabilities and staff and carers have been developed and given out. SummaryAn audit was conducted across Surrey to investigate pain recognition and management with people with learning disabilities. This section of the audit looked at what people with learning disabilities understood and experienced when they had pain compared to good practice from the literature. The results show that people with learning disabilities struggle to discuss pain effectively, and that little use is made of additional communication aids. People with learning disabilities rely on others to deal with their pain, but may not tell people that they are in pain. The most common response to having pain is to go to the doctors, and many people were not offered pain medication by staff. It was also reported that other alternative strategies were not used to manage pain. Although most people did not make the decision as to whether they needed to see their doctor, most people knew who their doctor was and reported good experiences in terms of information sharing once at the appointment. Further work has since been undertaken in Surrey to address the concerns raised in this audit through the development of information booklets on pain recognition and management for people with ª The Official Journal of the British Institute of Learning Disabilities learning disabilities and for staff and family carers, together with the development and roll out of pain training.

Accessible summary People with learning disabilities might have their children taken from their care. If they do, what then happens to the parents? I talked to nine mums who had their children taken away from their care. They told me about what this was like and how they felt. This research gives advice to people (particularly professional people) about how to work better with mums who have had their children removed. It also shows that sometimes it is difficult for people with learning disabilities to know their rights and say what they think. AbstractThere is a recognised risk of parents with learning disabilities having their children removed. Little research has investigated the impact of this on these parents. This article looks at the perceptions of nine mothers with mild learning disabilities and their experiences having had their children removed. Interview data were analysed using Interpretative Phenomenological Analysis (IPA). Findings reveal the struggles mothers with learning disabilities faced being ‘suitable mother’ – including presumed incompetence and scrutiny of parenting. Participants' responses to having had their children removed are looked at and support reviewed. Finally issues of power were highlighted throughout Participants' accounts and the impact of this is discussed. Clinical implications indicate areas for service improvement.