‘Would you please give me the arrangement for this thing?’ said the middle-aged American man to me many years ago when I was working in a psychiatric hospital in England. We were standing by the entrance to a locked ward in the early 1970s and he was asking me to unlock the door for him so he could get out and return to his wife. I was not in position to unlock the door—however, I did tell him that the word he was searching for was ‘key’ and that I didn’t have one. He was not impressed and subsequently became quite distressed at being locked in a place from which there was not only no escape, but also in which it seemed he could not collect his thoughts to the point where he could name the word key.
I felt so sorry that this clever man [he had had a position in academia in the USA] was reduced to being unable to formulate such a simple concept. Well, the years have passed and now some names have been placed on what was then simply ‘dementia’. Much is understood about the condition—about how it impacts on the person and their sense of who they are. The manifestation of dementia for people with intellectual disability is something that has increasingly been studied over the past few years, most particularly because the population of people with intellectual disability in Ireland (and in the West in general) is increasingly an aging population and as a result more people are being diagnosed with the condition. Along with the demographic changes, the high incidence of Alzheimer’s dementia that occurs in people with Down Syndrome means that service providers in Ireland will have to plan new services that are specially tailored to the needs of this client group.
This special edition of Frontline is largely dedicated to presenting several facets of dementia and Alzheimer’s disease. The aim of this edition is twofold. Firstly to issue a wake-up call to service providers and, by implication, to government to start planning and resourcing services for this client group, because the prevalence of dementia in people with ID in this country is increasing. Secondly, and more importantly this edition offers hope to people who are suffering from AD and their relatives in that particular approaches to caring are suggested that may help in making the world more intelligible to those with dementia.
As well as articles on the assessment and treatment of dementia that are of interest to clinicians, there are articles on how to communicate most effectively with people who have AD. McCallion and McCarron’s article on how to make the environment more friendly to the person with AD offers a very practical approach to the design of accommodation. Equally, Nickle and McCallion’s article on the restructuring of day programmes and Reilly’s article on care planning indicate that much can be done to make services adaptable to this client group. Furthermore, many of the suggestions in these articles do not require massive amounts of money—in many cases they simply require some thought to redirect how people work and where people live.
This edition tries to offer multiple perspectives on the subject of dementia and how it may impact on people with intellectual disability, I hope that there is something here for the clinician, the frontline worker and the families of people who have dementia. I also hope that the kaleidoscopic approach means that most aspects of the topic are discussed.
Ultimately a major element of Frontline’s brief is to inform so that people can then demand and receive the highest standard of care in the future. As Mary McCarron says: ‘When it comes to dementia and ID, the future is now.’