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This paper reports on a study which examined the notions of authenticity and citizenship for people living with cognitive impairment or dementia in a care home in the North-East of England. We demonstrated that both notions were present and were encouraged by engagement with an artist, where this involved audio and visual recordings and the creation of a film. The artist's interactions were observed by a non-participant observer using ethnographic techniques, including interviews with the residents, their families and the staff of the care home. The data were analysed using grounded theory and the constant comparative method of qualitative analysis. Our findings suggest that participatory art might help to maintain and encourage authenticity and citizenship in people living with dementia in a care home. Certainly, authenticity and citizenship are notions worth pursuing in the context of dementia generally, but especially in care homes.
My first connection with the Royal College of Psychiatrists was when, whilst still a general practice (GP) trainee, I became an inceptor. Inceptorships are now a thing of the past. It’s what you could become before you had membership. Now you would be an ‘associate member’. But I like the notion of being an inceptor. It’s an old-fashioned word. The Shorter Oxford English Dictionary says an inceptor is a person ‘who incepts or is about to incept at a university’; and to ‘incept’ means to ‘undertake, begin, enter upon’, but its use is rare. Still, beginnings are usually exciting and I like the idea of entering upon one’s career.
Residence capacity can be defined as the capacity someone requires to decide where to live. Its assessment is important in a variety of mental disorders. In this chapter we shall mainly focus on dementia, but the nature and requirements for assessment would largely be similar across all conditions. We shall also focus on the relevant law as it pertains to England and Wales, that is, the Mental Capacity Act (MCA), although, again, the nature of residence capacity and the principles for its assessment remain similar across jurisdictions.
Intimations of death often cause symptoms or syndromes of mental or emotional disorder, of which anxiety and depression are the most common. It is entirely appropriate, therefore, for mental health services to be involved with those who care for the dying in whatever setting. Old age psychiatrists have recognized their more direct role in caring for dying patients for many years., And some years ago a particular impetus emerged behind the notion of palliative care in dementia., This followed the early research by Ladislav Volicer and his colleagues in the dementia special care unit (DSCU) as part of the Geriatrics Research Education and Clinical Center at the E.N. Rogers Memorial Veterans Hospital in Bedford, Massachusetts. Since then there has been a burgeoning both in the field and in the literature. Gradually, different sorts of ways to provide palliative care for people with dementia have also emerged.
Epidemiology is the study of disease and its determinants in populations. Epidemiological studies investigate what the patterns of diseases are and why they develop in particular populations. Epidemiology is important in improving our understanding of what causes disease. Similarly, understanding epidemiology and how to interpret observational data is crucial to avoid inaccurate causal inferences. Unfortunately, critically evaluating all of the data on mental health problems in old age was outside the scope of this chapter, but we try to highlight some important limitations and gaps in the literature. There are exciting developments in epidemiology that will guide our knowledge about the determinants of psychiatric disease. For example, genome-wide association studies (GWAS) are increasing our understanding of genetic associations with psychiatric diseases.
More than 47 million people are living with dementia worldwide, and this number is predicted to increase to 131 million by 2050. Not only can dementia be a devastating condition, it carries a large economic burden with a worldwide cost estimated at US$818 billion. With no cure and an ageing population, the increasing prevalence is a worry.
Biomarkers are naturally occurring markers of the underlying pathological process of a particular disease. Numerous biomarkers to detect Alzheimer’s disease (AD) have been developed over the past decade. These have helped to develop the theory that AD is a continuum, which starts with the accumulation of Alzheimer’s pathology years before the emergence of clinical symptoms. The continuum begins with a preclinical phase (Box 12.1), in which there are pathological changes of AD (which can be detected by biomarkers), but no symptoms of dementia. This stage may pre-date AD by decades. It is suggested that this progresses to a prodromal phase of mild symptoms that do not affect daily living. The final stage is established Alzheimer’s dementia. Moving through these stages is not inevitable, and biomarkers have been developed to help predict who will show progression along the continuum.
This chapter considers the notion of personhood and shows how it offers a robust conceptual underpinning to person-centred care. We use a fictitious case vignette to clarify the nature of personhood. Although the vignette is fictional, it is based on an amalgam of real and made-up cases. We believe it would seem a familiar story to most people who know or care for people with dementia. We contend that we need a broad view of personhood, which we feel is best captured by regarding the person as a situated embodied agent (SEA), which will be explained. Using this characterization, we aim to demonstrate how it can underpin the notion of person-centred care and show the practical implications of this in connection with our fictitious case. The broad view supports a specific approach to people with dementia, but also shows the challenges that face the implementation of good-quality dementia care.