Changing the way we talk about dementia

Earlier this year, Professor John Swinton was keynote speaker on disability and dementia at a Uniting, Wesley Mission and UTC pastoral strength conference in Sydney. Chair in Divinity and Religious Studies at Scotland’s University of Aberdeen, Swinton has a background in mental health nursing and healthcare chaplaincy. He has published extensively in the areas of ageing, dementia, mental health and illness, as well as the theology of spirituality of disability. Having her own personal story of dementia within her family, Lisa Sampson spoke with Swinton about how more can be done pastorally for people living with dementia.

Australians are living longer and with that comes the very real possibility of having dementia in the latter years of life. Three in ten people over the age of 85, and almost one in ten people over 65, have dementia (Australian Institute of Health and Welfare, “Dementia in Australia,” 2015). About 413,106 Australians are living with dementia and 291,163 people providing care, either in the community or in cared accommodation. The economic cost of dementia in Australia this year is expected to be $14.67 billion (Alzheimer’s Australia, “Economic Cost of Dementia, 2016–2056,” 2017).

The toll of dementia upon our society is hard to exaggerate, especially upon those living with it or caring for someone who is. While the financial costs related to dementia are huge, even more so are the personal. My father had dementia and died 10 years ago. I have reflected a lot about what he experienced and how it impacted my family. For some time, one of the things I have wondered about is whether it is possible to live well with dementia.

Swinton says it is possible. But to be able to live well with dementia, all of us need to change the way we think and talk about it. “We must challenge the prevailing assumptions about dementia including the suggestion that dementia is a purely neurological problem affecting the brain.” There are spiritual and emotional dimensions to dementia, according to Swinton, beyond memory loss, behavioural change and diminished ability to perform everyday tasks.

Changing the way we think and talk about dementia would require a dramatic shift in the dominant narrative about dementia. As Swinton explains, dementia tends to be presented or considered mainly from a negative perspective.

“Even not-for-profit organisations [which are] ‘pro dementia’ feel that they must tell a fear-based story in order to have their message heard and attract funding. The statistics paint an overly negative picture of dementia.”

Swinton feels there is a need to present dementia differently, more humanely and in more of a spiritual context. “We can change the narrative from one of loss and sadness to one of trust, hope and love,” he says. One result of such a shift would be bringing greater hope and spirituality to our entire communities, according to Swinton.

Beyond a clinical approach

When relating to people with dementia, Swinton points out that most emphasis is usually placed on the loss of their memory. This focus soon extends to loss of their personal identity.

This was certainly the case for me when my father died at age 94 from Alzheimer’s (the most common form of dementia). The focus was on the man he once was. During his final years, the long-held fear for him was what the future may hold. Readily available information on the subject was largely clinical, based on neurology. I found those resources “dehumanising,” as Swinton calls them.

The doctor attending my father wrote on his death certificate as the cause of death, “Alzheimer’s.” It was not until that moment, despite the worrying statistics, that I completely accepted that dementia is a cause of death. In fact, dementia is second to heart disease as the leading cause of death in Australia and there no cure yet has been found. (Australian Bureau of Statistics, “Causes of Death,” 2015).

My father’s dementia was often discussed in a clinical way, as though he was not part of the conversation. “He doesn’t remember,” would be the impersonal justification. Family members would even remind him that he couldn’t remember which, in hindsight, was particularly unhelpful. Or nurses would say, “He’s not himself today.” What self? Where had it gone? Who took it? It was as if a grand larceny had occurred with no hope of retrieval.

I don’t recall the day my father’s “self” disappeared. The time arrived however when not only didn’t he remember that he didn’t remember, he simply couldn’t remember.

A story remembered

Dementia is a highly stigmatised condition and Swinton observes that someone’s diagnosis with it becomes the filter for their story. For the person with dementia, their universe is reduced to the “size of the disease.” In a sense, the person with dementia ends up “losing themselves” (loss of identity).

I certainly experienced this with my father. I recall it was about the time my father stopped body surfing when he was first diagnosed with dementia, around the age of 84. Friends remained in the dark because of the stigma involved. The gradual loss of his ability to perform everyday activities including catching the bus to the swimming pool, reading the newspaper and following conversations meant an ever diminishing circle of activity (although he still had the fitness levels of a 65 year old).

He became a “dementia sufferer” and all the implications that went along with that. Swinton says we need to open up a different understanding of dementia, to a “human response.”

“Holding onto their own story and having people around them who can sustain that story is fundamentally important,” says Swinton, highlighting that those with dementia must rely upon others to tell their story.

My father lost his short term memory and could no longer tell his own story — in his case, a WWII Sunderland pilot, father, husband, business man, Rotarian, etc.

Swinton points out that people with dementia often also experience a shrinking community; they forget — and are forgotten. However, our memories live on in many places, says Swinton, with family, or computers with photos. “The question is: ‘Who is going to remember your story?’”

Swinton believes we tend to “dehumanise” the person by defining their story in terms of what has been lost, how they used to be or, worse, that we’d rather remember the way they were. I recall a nurse who, meaning well, said to me, “I glimpsed the man your father was.”

It has stuck in my mind all these years later, as it compounded my unequivocal feelings of loss at the time.

How can we become more dementia friendly?

An ordained minister in the Church of Scotland, Swinton believes that Christian leaders can take the lead in trying to reshape how we think, discuss and feel about dementia. He says it is important for those leading churches to “first learn what dementia is and learn what it isn’t — and preach that.” He upholds the potent role played by ministers in helping us challenge and change our attitudes to dementia. “People need knowledge from the pulpit. If you don’t get the knowledge, you can’t create genuinely dementia-friendly communities.”

Swinton also encourages finding ways to proclaim the gospel for those who no longer have symbols and words, “in a way that provides spiritual security for them and their family.”

The importance of spiritual care

Spirituality is an area of life not usually acknowledged in people with dementia. Swinton believes it is a grave error to ignore it, considering how intimate and important it is to all of us — including someone with dementia. “If you think of spirituality as a way of trying to answer the big questions — Who am I? Where do I come from? Where am I going to? Why? — then it becomes clear that spirituality is also central to the experience of dementia.”

Swinton emphasises the spiritual role in dementia care as “thinking towards the future, learning to live well in the present. It is the present and the future [not the past] that we tend to care about in the context of memory loss.” Even in the case of advanced dementia, studies have shown that our bodies still contain memories. In light of that, Swinton says it is still possible for a person with dementia to grasp concepts of worship and take sacraments.

“Eucharist, hymns and prayer continue to be important in their spiritual life,” reveals Swinton. “While they may not be able to cognate as they may have once, our bodies are formed by the way of our spiritual practices over time. And our practise is always intentional and about something, our relationship with God.”

A positive paradigm

Swinton’s vision for the future is that dementia has a “personality change or that, at least, people begin to perceive it in different ways. It will always have an element of tragedy but it doesn’t have to have the kind of negative image it has now.”

“Beginning to think how to draw dementia into positive paradigm is important, part of that is how you create new stories for people.”

He encourages heart-to-heart engagement in the spiritual care of people with dementia, as well as doing so gently. “Jesus says ‘I am gentle,’” reminds Swinton, referencing Matthew 11:29 (“… I am gentle and humble in heart…”)

Swinton sees dementia as not just “a place of loss and a place of sadness,” but also a meaningful human experience. These are real people who have real hopes, expectations, new possibilities and spiritual desires for the future. “It is a new set of stories that can be told well. Dementia changes your narrative and challenges the assumptions that you are defined by memory.”

Lisa Sampson

Information about dementia can be found at Alzheimer’s Australia dementia.org.au