Living positively with dementia
What does it mean to say dementia is a ‘social’ experience?
Dementia is the umbrella term given to diseases that impact our brains and affect the way we do things. Over time, dementia will gradually make us more dependent on support from others. A dementia diagnosis is life-changing not only for the person involved, but for everyone in their social network. Good care throughout the entire dementia experience is essential. Dementia is not just one individual’s experience of an illness, it is a multi-person diagnosis, involving lots of people. ‘Living with dementia’ includes the person diagnosed as well as the social constellation within which that person lives, and on whom he or she will increasingly come to depend: family members, caregivers, friends, health professionals, neighbours, shopkeepers and the wider community.
The Dementia Reframed project was launched in 2015. It is part of a growing global movement that seeks to broaden the understanding of 'living with dementia'. Our focus is on improving information available to whole communities about the realities of living with dementia, and supporting carers on their journeys. Dementia friend programs, and dementia-friendly communities are rapidly growing.
Through Dementia Reframed we examine different ways of thinking about dementia, beyond the medical focus on cause and treatment, and beyond the messages of doom and gloom. Biomedical diagnosis and treatment is necessary, but medical interventions are not designed to provide insights into how the experience of living with dementia can be managed, and improved, for all those touched by it. The day-to-day challenges of dementia are social, not medical. In the absence of cure, priority must be given to improving the quality of life for all those living with dementia.
Many people, across the world, are working hard to think more creatively about what it means to live with dementia. Dementia Reframed is part of that movement.
Our focus is on improving information and supports for carers.
Why do we need to ‘reframe’ dementia? People are often afraid of dementia, because they do not understand it, and because it creates changes in how we as a community live our lives together. It can be a demanding illness, involving disruption and emotional pain. However, the myths, fear and stigma that exist surrounding dementia, create further unnecessary challenges for the person and their networks. Learning to set aside fear, having an openness to increasing knowledge and understanding, and providing good quality care – can all improve the lives of all those who are touched by dementia.
We would love to see a cure. But we cannot just sit around waiting for it. In the meantime, there are two things all of us can do.
First, lead as healthy lives as we can. This will promote our own chances of not developing a form of dementia, but will also mean that, if we do get it, we will deal with it a bit more easily.
Second, we need to look after each other. We need to build a more aware and more caring society, a society in which caring for others is normal - not just when people are ill or vulnerable, but in workplaces, public spaces, everywhere! We need to know that, if we do get dementia, we will be well cared for.
We want to better understand the complex social and relational challenges of dementia.
We think dementia carers – those with the lived experience – are our greatest teachers.
To reframe dementia as a social experience rather than a medical illness means we can think about how to contribute to better understandings and attitudes, and to better care.
Working to identify, address and change the prevailing constructions of dementia as loss, tragedy or deficit. These create fear and stigma, and exclude and marginalise rather than enable families to live with dementia more effectively;
Developing and strengthening cultural values, understandings and practices that value, include, support, and care for and about those living with dementia;
Encouraging and supporting research and practice that focus on social support and more effective communication with people with dementia and their carers;
Reconceptualising 'care' as everyone’s social responsibility;
Exploring ways to create a more caring society.
The big picture: a caring society
What does it mean to envision a society where an ethics of care is everyone's concern, across all contexts of our lives? How do different knowledges and practices interact such that they diminish or enhance the lives of those experiencing dementia and those who live alongside them?
The caring society is one in which care is a taken-for-granted part of the social fabric, from cradle to grave; a society in which people who have short- or long- term disabilities are valued, and seen as normal. All human beings are inherently vulnerable: we all need care and support at some time during our lives.
The ways in which 'care' is being represented as a burden or a cost to the rest of society needs to be challenged because these representations distance and stigmatise those who require care.
Dementia is one manifestation of the various situations in which people come to depend on others more and more. This confronts us with the question of what is required to develop a more caring society where all are equally valued, and able to access supports needed. To imagine a liveable life with dementia is, by implication, to imagine a more liveable society, one in which there is awareness and sensitivity around what it means to relate to people who are, for whatever reason, different. Dementia is the challenge to change: if we get it right in the case of dementia, we will be on our path to building a caring society.
An alternative framework
Dementia is a challenging but inspirational starting point from which to reconceptualise our understanding of 'being in relationship', with care a central tenant to all social relationships. This is a core aim of the Dementia Reframed project. Many of us will experience dementia - a third of us who live beyond 80 years of age, as well many who are diagnosed much younger. Good care is not something that we can take for granted. Care that is for, and about, us throws up major social, moral, political and economic challenges.
The first dimension to reframing dementia includes recognition of discrimination linked to ageing, social inequalities, cultural attitudes about cognition and rationality, and social histories of stigma and misinformation. Understanding social, historical and ideational contexts assists in challenging them, in turn enabling us to improve quality of life and care. This is an essential social investment. We know this; the challenge is to get our leaders listening and acting.
A second dimension of an alternative social framework focuses on how to conceptualise, and reconceptualise where necessary, the relationships and social understandings required to live a good life with dementia. We know that those with dementia will progressively require more care and support. However, framing dementia as 'decline' negatively impacts on approaches that aim to enhance the lives of those living with dementia. Further, those experiencing dementia and their carers are often profoundly affected by the stigmas that stem from lack of education and training, and negative social attitudes, adding considerably to their stress.
Learning from people with dementia: research values
It is essential to learn from people who live with dementia about the information, support and insights they require. These discussions involve moral and legal concerns when certain capacities are diminishing, as well as what constitutes acceptable standards of care. Central to this is a critical conversation around personhood and social value. Our value as persons and the quality of our social relationships are influenced by philosophical, social, economic and medical ideas.
Media coverage of dementia focuses on new research towards prevention or cure, informing the public about its prevalence and symptoms, but even well-intentioned articles exacerbate fear and dismay. Those diagnosed with dementia are commonly depicted as suffering a loss or deficit of personhood, being lost to a world of relationships, and as a burden for carers.
Stories about community efforts to live well with dementia are harder to access. This leads us to ask: what are the taken-for-granted understandings of the good life, and of the abilities required of citizenship, which inform these limited understandings? Symptoms associated with dementia challenge dominant ideas in many societies about the significance of cognition (what we know and how we know it) in determining our value as people. But we have other capacities we can value: our senses, our emotions, our physical abilities, and so on. By challenging the ways in which we think about dementia, we rethink the understandings, practices and values that get in the way of the caring society. The changes required to ensure informed and compassionate attitudes, and better care for those with dementia, will ensure a better life for us all.