By Professor John Swinton

The conversation around dementia and personhood is rich, deep and ongoing. It is also significantly influenced by cultural assumptions about what it is about human beings that is important. Dementia challenges our cultural perceptions of what it means to be a human being in quite profound ways. In hypercognitive Western societies it is very easy to judge and devalue people on the basis of loss of memory and intellectual and cognitive ability. When people lose their memory it is often assumed that they somehow lose themselves: “She is not the person she used to be.” “I prefer to remember her the way that she was.” The problem with this way of thinking is that if someone is “not the person they used, to be,” then who exactly are they? More importantly, if they are not who they previously were, or how “we” remember them, then why would we love them? When we begin to think in such ways it can become quite dangerous for people with dementia, something that becomes apparent when we note that having dementia in some countries is an adequate criterion for euthanasia. Having dementia can be a risky business!

Personhood

It is because of the cultural riskiness of dementia that people have felt the need to develop models of personhood and understandings of humanness which protect people from the dangers of being misjudged, forgotten or downgraded. Models of personhood emphasise the communal, psychological and spiritual nature of dementia and point us to the ways in which living life to the full is not inequitable with living with dementia. For example, Tom Kitwood has produced a definition of personhoood that has stood the test of time. Personhood, Kitwood suggests is: “A standing or status that is bestowed upon one human being by others, in the context of relationship and social being. It implies recognition, respect and trust.” This is a helpful understanding of personhood that emphasises the fact that while people do lose certain things during their dementia journey, given the right relational conditions and opportunities, they can still live lives that are filled with value, meaning and purpose. Value is not something we engender on our own through our own capacities. Value is always a gift that is given to us by others. Kitwood’s definition captures this dimension of gift nicely. The problem with his approach is of course that if people cease to give you value then you do in fact lose your personhood. Personhood and community are so deeply intertwined that a loss of community inevitably leads to a loss of personhood. That is why, as I have argued elsewhere[1], we need a theological dimension wherein our value is maintained by God rather than within the vicissitudes of human beings. However, as well as having a theological dimension, for Kitwood’s model to come to fruition, we also require a political dimension to our understanding of persons. People do not naturally gravitate towards the vulnerable. We need laws and social structures that will help us do the right thing by one another.

From personhood to citizenship

Some have argued that models of personhood like Kitwood’s do not do the work necessary to help people live well with dementia[2]. Discussions around personhood tend to be subjective, focusing on relationships, philosophy, ethics, theology or spirituality. These things are not unhelpful, but without a political dimension they can very easily become caught up in arguments that make little real-life difference to people living with dementia and their families. The suggestion here is that we need to move from personhood to citizenship. Discussions about citizenship are focused on issues of power, politics and social organisation. Citizenship is a standing or status that is bestowed upon those who are full members of a community. Importantly, this standing or status is not supported solely by particular personal choices, but by laws and rights. Both personhood and citizenship are given to others, but citizenship has more of a focus on politics, social action and importantly, the agency of the person with dementia. Here the person with dementia is not simply at the whim of others, but is an active agent who intentionally interacts with society to bring about the particular goals that he or she desires. The primary question here then is not simply “how do we help maintain the personhood of this individual (although of course this question remains important).” Rather the primary question that is raised via a focus on citizenship is: How can we enable all of the citizens of our town/city/country to live justly and well, including those living with dementia. Thinking about dementia in terms of citizenship allows us to think about community, the nature of solidarity and the centrality of organised communal relationships. In this perspective we are all people living with dementia. The individual, her community, her borough, her town, her country are all enmeshed in a way that means that we all in different ways, are people who live with dementia. The language of citizenship brings with it a mode of language that assumes the equality of people with dementia and refuses to define them primarily by their condition. Citizens recognise each other as fellow citizens.

Citizenship and rights

There are three dimensions to citizenship that need to be borne in mind:

Freedom – the person has the freedom to make fundamental choices about the way in which they live their lives: what they want, where they want to be and to go, what the shape of their future should look like. This requires access to and active participation in the political process.
Rights – Freedom is protected by statutory rights that ensure that the freedoms of the individual are secured, enabled and enforced. The linchpin for these rights is a focus on justice, equality, inclusion and access. Personal rights include autonomy, dignity, freedom, agency and self-representation. Legislation requires to be designed in ways that ensure both general and personal rights for everyone within society.
Duties – Duties relate to the responsibilities of individuals to think and behave in ways that respect and ensure the freedom and rights of others. A proper understanding of rights requires a matching understanding of duties.

Citizenship and personhood are of course deeply entwined. When they work well together, the personhood of the individual is protected in concrete as well as theoretical ways.

The problem with citizenship

There is however a problem with the citizenship-based approach in relation to dementia. That problem is twofold. Firstly, legislation that ensures rights can create a context where injustice and oppression are illegal. It cannot however force people to value one another. So, if you have a culture that generally devalues people with dementia because of its focus on the importance of memory, intellect and cognition, then you will more than probably find that general assumption and attitudes implicitly or explicitly contain the same devaluing assumptions. Whilst it is true that a person’s value doesn’t decrease based on other people’s inability to see their worth, rights alone will not change people’s perspectives or help them to love one another.

Secondly, dementia is a degenerative condition. The general trajectory of dementia is a movement away from the very things that the citizenship approach values: autonomy, dignity, freedom, agency and self-representation. If we reject the personhood model and simply go with the idea of citizenship, there will come a time in our dementia journey when we will not longer benefit from the basic ideas of citizenship. Indeed, it could act significantly against our best interests. True, we may be cared for within a value-based social context that protects our rights. However, if it is the case that there is an inbuilt bias against cognitive challenges, then we should not be surprised if and when legislation changes in ways that are not necessarily in our favour. Legislation takes its lead from societal values.

Social citizenship

So, what might be a way of dealing with the blessings and the challenges of these two ways of thinking about people with dementia? I would suggest that one way of thinking about the situation and working through the tensions, is through reimagining personhood in terms of social citizenship. Social citizenship (as it differs from political citizenship), is:

A relationship, practice or status, in which a person with dementia is entitled to experience freedom from discrimination, and to have the opportunity to grow and participate in life to the fullest extent possible. It involves justice, recognition of social positions and the upholding of personhood, rights and a fluid degree of responsibility for shaping events at a personal and societal level[3].

Whilst political citizenship focuses on voting, rights and duties, social citizenship takes these things seriously, but expands our understanding by drawing attention to the importance of relational personhood and a particular form of community. It therefore holds on to the intimacy and person-centredness of models of personhood, whilst at the same time giving voice to the importance of the political, even if active political participation towards the end of our dementia journey slips away from us.

Importantly, social citizenship opens up the way for a politically informed spirituality. Within such a spirituality, we discover the need for inclusion and the political pathways that are necessary to take us to a place where all people are included within our communities. However, a politically informed spirituality adds the dimension of spirituality and belonging to the concept of citizenship. The spiritual dimension focuses our attention on the intimate needs for all people to find meaning, purpose, hope, value, love and for some, God. It therefore scrutinises policies, attitudes and approaches with a holistic lens that views the political and the personal as inextricably interlinked.

The idea of belonging emerges from a more theological perspective which resonates with the doctrine of creation, wherein God creates the world and gifts it to human beings. We belong because God has gifted us both life and a place to live that life out in all of its fullness. To belong we need to be included in our communities in a way that reveals that people care and value us. Belonging requires and demands forms of relationship that engage with people at a personal level and work through precisely how value is bestowed and maintained in a way that makes the individual central to the idea of society. Rights are necessary for belonging, but on their own, rights cannot bring about belonging. Whilst inclusion emphasises the importance of rights, belonging takes seriously the importance of duties. Within a standard model of citizenship, duties are expected but not necessarily enforced. I may have a duty to look after people with dementia in the end stages of their dementia journey, but I am not obligated to do so. The only thing I am obligated to do is to ensure that my freedom does not impinge upon their freedom. Social citizenship underpinned by a politically informed spirituality expands our obligations to include the deeply personal; the spiritual dimension of living in the world.

Conclusion

It is not possible here to draw out all of the implications of a spiritually informed social citizenship. I present it as a way of thinking to be placed alongside of others as we move towards better ways of conceptualising and practising dementia and dementia care. I nevertheless hope however that I have offered enough to get people thinking about the deep and vital connection between citizenship, rights and spirituality, and how the experience of dementia helps us to think through aspects of each that we might miss out on if we are looking in different directions. Being a person is complex!

[1] John Swinton (2012) Dementia: Living in the memories of Gods. Grand Rapids: Eerdmans.

[2] Ruth Bartlett and Deborah O’Connor “From personhood to citizenship: Broadening the lens for dementia practice and research.” Journey of Aging. Volume 21, Issue 2, April 2007, Pages 107-118.

[3] Ruth Bartlett and Deborah O’Connor. “From personhood to citizenship: Broadening the lens for dementia practice and research.”