Dementia as Social Experience

Valuing Life and Care

Gaynor Macdonald, Jane Mears, Gaynor Macdonald, Jane Mears

• Publisher: Routledge
• Year: 2018
• ISBN:
  9781351241793
• Edition: 1
• Topic: Scienze sociali
• Subtopic: Studi sullo sviluppo globale

A diagnosis of dementia changes the ways people engage with each other – for those living with dementia, as well their families, caregivers, friends, health professionals, neighbours, shopkeepers and the community. Medical understandings, necessary as they are, provide no insights into how we may all live good lives with dementia.

This innovative volume brings together an interdisciplinary group of researchers and practitioners to focus on dementia as lived experience. It foregrounds dementia's social, moral, political and economic dimensions, investigating the challenges of reframing the dementia experience for all involved. Part I critiques the stigmas, the negativity, language and fears often associated with a dementia diagnosis, challenging debilitating representations and examining ways to tackle these. Part II examines proactive practices that can support better long-term outcomes for those living with dementia. Part III looks at the relational aspects of dementia care, acknowledging and going beyond the notion of person-centred care. Collectively, these contributions highlight the social and relational change required to enhance life for those with dementia and those who care for them.

Engaging in a critical conversation around personhood and social value, this book examines the wider social contexts within which dementia care takes place. It calls for social change, and looks for inspiration to the growing movement for relational care and the caring society. Dementia as Social Experience is important reading for all those people who, in various ways, are living with dementia, as well as for those working in this area as clinicians, researcher and carers.

1 Reframing dementia

The social imperative

Gaynor Macdonald, Jane Mears and Ailin Naderbagi

Dementia as social experience

What we hope to achieve in this book is represented in its title, Dementia as Social Experience: Valuing Life and Care. We challenge the idea that we should fear dementia or that, once diagnosed, ‘life’ has virtually come to an end. This interdisciplinary collection examines how different knowledges and practices interact, such that they diminish or enhance the lives of those who have been diagnosed with dementia, as well as those who share their lives. It offers a critique of taken-for-granted ideas and understandings which are found in wider society, as well as in care practices, while envisioning what it takes to create a society in which vulnerability is a legitimate, well-supported life experience, and care is valued as central to all life.

We are not alone in our efforts to reframe dementia. This book draws and builds on the work of many researchers, activists and policy makers who have been and are working from a similar perspective. The shifts we are looking for are not happening fast enough. The medical model and the care industry itself are major impediments: these are expressions of powerful vested interests. We seek to reframe dementia: to move an understanding of dementia as a social experience to centre stage, to be given equal priority to biomedical concerns. And we seek to dislodge the cultural and medical idea that we are ‘individuals’, so as to move towards an appreciation of all human beings as fundamentally relational beings. More of an impediment to the change that is required, however, is the lack of a vision for a caring society. To imagine a liveable life with dementia is, by implication, to imagine a more liveable society, a more caring society for all citizens. Instead of starting with dementia as a cruel, feared and vilified disease, let us start with a revaluing of vulnerability and care as intrinsic to all life.

Dementia is now a well-recognised umbrella term for diseases which produce cognitive decline. The majority are cases of Alzheimer’s disease (70 per cent) and affect people over the age of 65 years. About 7 per cent are forms of younger onset dementia. There is readily-available information on the websites of national dementia organisations about its different forms, typical progressions and the fact that all forms are, at present, incurable. There are quite regular announcements of research breakthroughs, as well as lifestyle advice (nutrition and exercise) to help avoid its onset. These chapters do not concern themselves with defining forms of dementia, nor on adding to this wealth of information about the disease and its trajectories. Little of this information assists people live with dementia. The brain has no pain receptors and dementia, as a disease of the brain, is quiet and painless: many people go undiagnosed for years. The real impacts – and the need for diagnosis – are felt in relationship. The experience of dementia is social – these brain changes affect a person’s behaviour as the capacity for independent social interaction is impaired.

There is a great need to enhance our capacity to live with dementia. We need to give equal value to acquiring the knowledge, skills and attitudes that will improve and enhance this social experience as we give to brain research. Dementia is experienced in interpersonal relationships, by both the person undergoing cognitive decline as well as all those around them: in the small changes that take place over time in a person’s capacity to live independently or think clearly, in their need for support, care and empathy or in the requirement on the part of others to understand and to care. As long ago as 1992, Sabat and Harré showed that a social constructionist approach revealed that the self of personal identity persisted into the end stages of Alzheimer’s and that the primary cause of its loss is the ways in which others treat that person. These social understandings need to come to the fore.

This collection brings together researchers and practitioners who are committed to changing public perceptions, to reframing dementia in ways that challenge the stigma it engenders, so as to provide the conditions for viable enriched lives for all those living with dementia. We use the phrase, ‘living with dementia’, to refer not only to those who live with a diagnosis of dementia, but to all whose lives are entangled with each diagnosed person: family, friends, colleagues, medical and health professionals, neighbours. Each person living with dementia will experience this entanglement in different ways: each will encounter the stigmas, fears and isolation, and need to deal with the increasing demands for care and consideration that the diagnosed person will require.

Unsettling the dominance of biomedical models, by reframing dementia, does not imply being critical of the enormous energy and commitment going into understanding the neurology of various dementias to find preventive measures, treatments and cures. Rather, it is to say that this is not enough. Until and unless dementia can be prevented and/or cured, we need to learn to live with it. The side-lining of a social model contributes to fear and stigma; these are exacerbated when the medical model is foregrounded. Each diagnosis of dementia impacts on many people. As the disease progresses so, too, do the social demands. We live in societies ill-equipped to deal with these demands, whether for the person with the diagnosis, or those who will care for them as they become progressively dependent, whether at home or in residential care. We need to challenge people who hear a diagnosis of dementia and say, ‘how tragic’, and encourage them to say, ‘how can I support this person and her carers?’.

Reframing living with dementia means to move it from a personal medical tragedy to a social issue, one that affects whole families, neighbourhoods and society at large. These chapters, in different ways, affirm the need for a counter narrative to the cognition-centred biomedical framing of dementia. They do not speak with one voice. They take different, sometimes contradictory approaches and, as editors, we believe this is necessary to the debates we must have about how to move forward, whether as a society or in our own interpersonal relationships. We need new ways of thinking and speaking about dementia beyond deficit-based medical framing; a social rather than medical model of dementia, and dementia care must be our starting point if we are to change public perceptions and enhance care giving. More positive models will honour the dignity, experience and wellbeing of the person diagnosed and, by extension, counter narratives will have profound effects for carers and others impacted by the diagnosis.

There are two fronts in this movement for change reflected in these chapters: the need to confront and change social attitudes, which also inform policy and economic decisions; and improvements in the understandings and practices brought to the experience of living with dementia. McDonald (Chapter 2) tackles the first, arguing that it is time for a groundswell of resistance to the negativity surrounding dementia. People in the early stages of dementia, and particularly those diagnosed with early onset dementia, have become more vocal in recent years; they are powerful advocates but they must not be the only voices for change, especially as the change required presents a formidable challenge.

Discussing the need for changes in social attitudes and practices, two recurring themes emerge across these chapters. The first is the negative impact of deep-seated cultural ideas. Authors look critically at the need to reframe social attitudes to address persistent negativity and fear. These social dimensions are complex: they include a history of stigma, fear and misinformation; discrimination linked to ageing; social inequalities; and cultural attitudes about cognition and rationality (McDonald, Mears, Hutchinson et al., Biggs et al. and Jarrad, in Chapters 2, 3, 4, 5 and 6, respectively). Understanding the social, historical and ideational contexts of pejorative attitudes assists in challenging them, enabling us to improve the quality of care, which is the second aspect of reframing dementia discussed.

Among these are the notions that, as human beings, we are only of social worth as fully-competent individuals with a certain level of cognitive capacity, which enables us to live what is considered a ‘normal’ life. Jarrad (Chapter 6) show how reframing dementia can lead to acceptance of different types of ‘normality’, and to the recognition of experience as an important part of one’s quality of life, including the experience of living with dementia. The high bar set for cognitive ability is not, in fact, the reality for many people, at any time in their lives, and some people’s greatest strengths are sensual, emotional and relational.

A second theme is the impact of competing economic interests that allocate value according to discriminatory social ideas (especially McDonald and Mears, Chapters 2 and 3, respectively). The reframing required to make life liveable for people with dementia is not only of perceptions and practices specific to the dementia experience; it is needed by us all if we are to live once again in socially-aware and caring societies. The change needed to reframe dementia is going to be tough and it will take time. In the face of what might seem impossible odds, these chapters also examine very practical, often small but meaningful, steps which will work towards achieving this vision of significant social change. Authors examine how to change thinking about practices, attitudes and legislative requirements which impact on the quality of interpersonal relationships (Hutchinson et al., Jarrad, Sinclair et al., Yapp et al., Carr and Biggs and Macdonald, in Chapters 4, 6, 7, 8, 10 and 11, respectively). These discussions seek to better maintain the autonomy and dignity of people with dementia as well as improve approaches to care. The underlying theme is that the changes required to live a good life with dementia are an essential social investment.

Dementia as burden

In English-speaking nations, people with dementia are often thought of as tragic, having been robbed of life and cast into a slow and traumatising process of losing their personhood. Cancer has been Australia’s most feared disease but there are signs dementia is taking over (Fujita et al. 2015; SAGA 2016). Efforts have been made by advocacy groups since the 1970s to get Alzheimer’s recognised as a medical condition, one that requires proper treatment (Lock 2013: 13). Anthropologist, Margaret Lock (2013: 13) cites neurogeneticist Peter St George-Hyslop’s quip, ‘Alzheimer’s is not that sexy’, it is not ‘hot like breast cancer or HIV’ and, unlike both of these diseases, lobbying efforts fall short when ‘affected people cannot speak for themselves’. She notes that, in the United Kingdom, expenditure on dementia is less than 10 per cent of that invested in cancer research. This neglect has been, in large part, because of the stigma associated with the condition. But there are signs of change: ‘the concerted efforts of medical professionals, AD societies, and the media to make Alzheimer’s more publicly visible as a condition that demands immediate attention for economic, social, and humanitarian reasons are beginning to pay off’ (Lock 2013: 13). Money is now being poured into medical research designed to find cures or at least treatments to hold symptoms at bay.

Kevern (2017) maintains that the search for a cure or effective treatment acts as a means of reducing the sense of social fear around the condition, yet arguably it also has the reverse effect, heightening fears because it is a long-term project with uncertain outcomes. While the medical search continues, what needs to be addressed are the fears that can cause those living with dementia to become isolated, relegated to a kind of social death (see Macdonald, Chapter 11). Whether it is the fact that we are living longer, or that lifestyle changes are increasing the incidence, it is how we value the lives of our fellow human beings – from cradle to grave – that must be a primary consideration.

It is not simply the disease, but the way in which people with the disease are treated, that is a fear factor. Dementia is seen as a burden on society. In fact, the societal burden arguably receives more concerned attention than the burden these very attitudes place on those who are at the forefront of the experience of living with dementia. This burden is generally represented as economic, and feeds into ageism. Citizens are divided, into those who ‘contribute’ (economically) and those who drain the contributions of others, pointing to cultural ideas and values that do not encompass and care for all people. In one Australian survey, 44 per cent of people believed that people with dementia are discriminated against or treated unfairly and, perhaps more disturbingly, 22 per cent indicated that they would feel uncomfortable spending time with someone who had dementia (Phillipson et al. 2012: 5). Those who become carers report their own shame and embarrassment about the person they care for: they, too, experience the impact of stigma and public lack of understanding (Phillipson et al. 2012: 5). Overcoming stigma, fear, shame, ignorance and denial with regards to dementia are tasks equal in importance and urgency to medical research. We need the knowledge and the tools to equip our societies to live with dementia, to better support those with the dementia diagnosis and those who support them.

In Australia, about 70 per cent of people living with dementia live in their own homes. That is the overwhelming desire for most aged people. But that also means there is no potential for profit as there is in the retirement and residential care sector. The home care workforce is declining, and at the time of writing, early in 2018, there are 100,000 people on the 18-month waiting list for government-funded home care packages (Hermant 2018). At the same time, government funding to residential services, where there are (huge) profits to be made, has increased. Political choices are social choices. By way of example, in 2014, the Australian Federal government (Liberal-National Coalition) implemented ‘the most unfair Australian budget in living memory’ (Sheil 2014). Spies-Butcher (2014) described it at the time as an attempt to ‘fundamentally reshape the social contract. … It is difficult to see the budget as anything other than an attempt to tear up the social contract and to redistribute income from households and public services to corporations and private business’. It would do so by undermining the reliability and fairness of social security; by undermining institutions designed to promote alternative ideas or enable weaker groups to be heard; and by dismantling public provision to allow greater reliance on private, for-profit businesses.

One justification was the ageing population, yet, as Spies-Butcher (2014) pointed out,

Australia’s pension costs are one of the lowest in the developed world, and will remain one of the cheapest schemes in the future. That’s partly because Australia’s population is relatively young, and will age relatively slowly. It’s also because our pension system is very efficient, targeting those on the lowest incomes.

The ‘profound change’ actually meant that a social commitment ‘to provide equity and security’ was being replaced with ‘debt and discipline from cradle to grave’ (Spies-Butcher 2014). Although public opposition to this budget was intense, that it could be presented at all signals the shift away from social values that is evident in the neoliberal global economy. This makes it imperative that any movement to reinstate social values must start at the grass roots because governments are controlled by high finance rather than social morality. Cutback to social services have been savage, in one country after another. The employment and working conditions of disability and aged care workers are abysmal. Policy looks good but most practice is hideous.

Older people – the ‘graying of society’ – are now represented as a ‘risk’ in that they pose an economic challenge (McDonald, Chapter 2). Lock (2013: 13) illustrates how narratives skew attitudes in critiquing reports of dementia. For example, an ‘estimated 35.6 million people were living worldwide with dementia in 2010 … estimated to nearly double every 20 years to 65.7 million in 2030 and 115.4 million in 2050’. Such statistics ...