The sociology of dementia has been a relatively neglected topic in studies of health and illness despite dementia becoming of increasing significance to most âageing societiesâ. For this reason alone an overview of developments and directions in the sociology of dementia seems both necessary and apposite. Worldwide, it has been estimated that there will be over 80 million people living with dementia by 2040 (Prince and Jackson 2013). The significance of this condition, we would argue, goes much further than its epidemiological significance. The effects of this âmajor neurocognitive disorderâ as it is described in the latest edition of the Diagnostic and Statistical Manual (DSM-5; Sachdev et al. 2014) are not confined simply to the numbers affected by the condition. It must also include the considerable impact that the condition has on the lives of patients and carers as well as the consequences for the health and social care professionals involved in providing support and care. Dementia is responsible for over half of all admissions to residential long-term care; it impacts more heavily upon families and carers than nearly all other medical conditions and it represents one of, if not the most feared aspects of growing older (Cantegreil-Kallen and Pin 2012, Luppa et al. 2010, Torti et al. 2004). Equally, the costs associated with providing care are constantly projected to grow with Alzheimer's Disease International (ADI) estimating that the worldwide combined cost of dementia care in 2015 was US$818 billion and that this figure is likely to rise to over US$ 1 Trillion by 2030 (Martin 2015). Alongside this has to be considered that the bio-medical project to find a âcureâ for dementia which could potentially alleviate these costs has foundered (Lock 2013). While the latter decades of the twentieth century were marked by the concerted effort from the pharmaceutical industry to develop and market effective âanti-dementiaâ drugs, since the beginning of the twenty-first century such efforts seem to have fallen by the wayside. Attention is turning toward âpre-clinicalâ risk profiling and the public health implementation of âdementia preventionâ strategies (Imtiaz et al. 2014). All of this has complicated and extended the significance of dementia to researchers in the sociology of health and illness.
Dementia consequently has become identified as being at the heart of the âproblemâ of ageing societies as many of the above features are rolled into the idea of âapocalyptic demographyâ first advanced by Ann Robertson in 1990 and still going strong in many different contexts (Lundgren and Ljuslinder 2011, Martin et al. 2009). Furthermore, the increasing frequency of dementia as a topical news item in the media has meant that it has a growing influence on the social representations of old age as the messages about its effects spread more widely among the general population (Hunter and Doyle 2014). Such media exposure generates fears relating to the anticipated progressive loss of capacity of individuals who develop dementia. This fear of losing one's mind, and losing one's place in the adult world, has led to dementia being framed as a form of âsocial deathâ (Sweeting and Gilhooly 1997). Despite the efforts of advocacy groups representing families facing the challenges of dementia and the articulation of the sufferer's voice in personal accounts of dementia, such fears have not diminished and may have prompted calls and means for voluntary euthanasia (Draper et al. 2010, Volicer 2016). This process appears to have occurred in parallel with what has been described as the âAlzheimerisation of ageingâ (Adelman 1995, Gilleard and Higgs 2000). Reinforced by media reports of âinstitutional abuseâ in nursing homes (Lloyd et al. 2014), the intensified search for âa cureâ, and dire predictions of demographic apocalypse, the Alzheimerisation of ageing seems to contribute to the propagation of an associated and potentially negative âneuro-cultureâ spread across the whole of society (Williams et al. 2012). In so doing the various contexts of dementia are re-setting the coordinates of what ageing and old age mean in contemporary societies. The increases in life expectancy and the improvement of health at later ages has shifted our understanding of what constitutes normal ageing (Jones and Higgs 2010) as well as creating a much more âdensifiedâ and frail âfourth ageâ (Gilleard and Higgs 2011). This transformation has been much discussed and debated within social gerontology but has not had as much attention within medical sociology (Higgs 2013).
This monograph then comes at an important time to take stock of the societal impact of dementia and its relation to health. The papers in it address several themes that exist at the intersection of dementia with a number of important concerns within the sociology of age, health and illness. The selection exemplifies our concern to further develop a critical but constructive sociology of dementia; one that is both critical in highlighting the social processes involved in dementia and dementia care as well as taking full account of the cultural and social representations of dementia that are present in everyday life. We do so to facilitate constructive engagement in the formulation of a range of potential responses to this condition. When first proposing this monograph, we drew heavily on our own understanding of the role of dementia in positioning a âsocial imaginaryâ of the fourth age (Gilleard and Higgs 2010, Higgs and Gilleard 2015). We used the term social imaginary in order to project the idea that the fourth age has as much impact on those who are not enveloped by its corporeality as on those who by their dementia and frailty already are. We argued that using the term allows for a much greater recognition of the way in which social representations play a key role in understanding the dilemmas posed by dementia and how this may differ for those occupying the multiplicity of professional and social locations operating in this arena. This has led us to become interested in such key concepts as personhood, care work and the ethical and moral frameworks in which these practices are situated (Higgs and Gilleard 2016). These concerns are, we believe, brought out in this collection.
The volume covers four broad themes. While they are by no means exhaustive of the range of present and future possibilities for a sociology of dementia, they do serve as a sound basis from which to build one. The first theme concerns the importance of the construction of personhood in relation to dementia. This has been a key area for the development of social science thinking about what the condition of dementia means for those with the diagnosis as well as those dealing with it as both a family and a professional concern. A key point of departure has been the usefulness (or otherwise) of Kitwood's (1997) location of the âproblemâ of dementia as the product of a âmalignantâ social psychology. The tendency he observed for services to discount the concerns, feelings and interests of those with the condition led him to advocate a more âperson-centredâ form of care as a way of recognising and supporting the âpersonhoodâ of the individual concerned. For Kitwood, personhood was not âdependentâ on a Kantian assumption of individual rationality but on the relatedness of persons. This approach has been very influential and a number of the contributions to this volume explicitly discuss and defend that legacy. Kontos, Miller and Kontos in their paper âRelational citizenship: Supporting embodied selfhood and relationality in dementia careâ develop this line of thinking by explicitly arguing for a notion of âembodied selfhoodâ. However the debate on personhood as developed, cannot help but overlap with discussions of citizenship given that many commentators have seen the issues of personhood better understood not as ones of âpersonal capacityâ or even âpersonal relationshipsâ but as ones that speak to the denial of citizenship rights (Bartlett and O'Connor 2007). Here an often implicit connection is made to the activism of the disability rights movement. This is brought out in Birt et al.'s paper âShifting dementia discourses from deficit to active citizenshipâ which seeks to consider the advantages to be gained from adopting a disability perspective to this area of practice and research, while recognising how profound cognitive disability may pose particular difficulties for this perspective.
The second theme concerns the issue of care. This topic interrelates with issues of personhood as shown in Tolhurst et al.'s paper âNarrative collisions, sociocultural pressures and dementia: the relational basis of personhood reconsideredâ and in Scales et al.'s paper âPower, empowerment, and person-centred care: Using ethnography to examine the everyday practice of unregistered dementia careâ. What these papers illustrate is the complexity of the care relationship within dementia and, as Andrews's paper âInstitutionalising senile dementia in 19th-century Britainâ shows us, how these relations are historically contextualised within both medical discourses and institutional practices.
The third theme of the monograph addresses the social representations of dementia and in particular the way in which its presence has been inserted into contemporary culture. Work by Beard (2016), Beard and Neary (2013) and Lock (2013) has started to address this process. McParland et al.'s paper âDichotomising dementia: is there another way?â shows that as the title suggests, it would be a mistake to view living with dementia purely as a failure. They advocate accepting the condition as something more fluid and paradoxical in terms of the possibilities for continuing social inclusion. Brittan et al.'s paper âWhen walking becomes wandering: representing the fear of the fourth ageâ describes aspects of the social imaginary of the fourth age that many working in the field are aware of and which represent symbolic processes as much as practical concerns. In a similar fashion, Goldman's paper âRe-imagining dementia in the fourth age: the ironic actions of Alice Munroâ examines the fictional representation of dementia. It reminds us also that the social imaginary of the fourth age operates at many different levels of cultural practice not just in bio-medical, nursing and social care discourses.
The fourth theme addresses what we would term the social contextualisation of dementia. Jones's paper âSocial class, dementia and the fourth ageâ offers an overview of the social determinants of dementia and dementia care, both in terms of their âequalisingâ nature as well as those arenas where inequalities emerge. This is complemented by the paper by Grenier et al. entitled âPrecarity in late life: Rethinking dementia as a âfrailedâ old age' which sees the many issues surrounding the fourth age as being better unde...
