When dementia makes a man aggressive and irritable, should he be treated like a naughty child? If a woman can no longer dress herself or hold a conversation, is she any less valuable to society? And if a person forgets their own name and life story, are they any less human?
These are the questions Australia needs to consider, as we deal with an increasing need for aged care, says Professor John Swinton.
Professor Swinton, a theologian from the UK and a world authority on pastoral care of the elderly, is currently in the country to speak to influencers in the aged care sector.
He wants to challenge the aged care system in the way it views and treats elderly people and those with dementia. He’s especially passionate about making sure that elderly people receive proper “spiritual care”.
What Are The Spiritual Needs Of Those With Dementia?
In an interview with Hope 103.2’s Emma Mullings, Prof Swinton described spiritual care as “looking after the story of the person properly”.
“As you get older, your body begins to deteriorate, and as you move into dementia, your brain begins to deteriorate,” he said, “and sometimes that story of biological deterioration takes over what you are. So people are always looking at you in terms of you’ve broken this, or you’re losing that.
“Spiritual care remembers that there’s a person behind that—that has a sense of meaning and purpose.
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“And for some people, such as a person who’s deeply involved with religious traditions and who may have a deep relationship with God, spirituality begins to ask questions around that story.”
Does Dementia Bring Out The ‘Inner Child’?
It’s often said that dementia brings out a person’s “inner child”, but Professor Swinton believes it’s important not to draw stereotypes, because dementia affects each person differently.
“Dementia is brain damage,” he said, “so you’ll have different experiences depending what your damage to your brain is.
“Sometimes, when you no longer have certain memories that may trouble you or bring you anxiety, then you can have a kind of release and become gentler. But sometimes it can “free your inner child” and then you can discover things about the person that you never knew before and don’t particularly want to know.
“It can be a process of revelation, in which good things and negative things can emerge. Your identity begins to shift and change. You want to be who you were before, but you’re not. So there are periods of transition within which it can be really difficult.”
Be Careful How You Label People Living With Dementia
Prof Swinton said it is important to be careful not to label people living with dementia in negative ways. For example, when someone with dementia experiences a lot of frustration and anger, they are not necessarily “being difficult”.
“There’s probably a good reason why he feels grief,” he said, “because there’s a process of grieving to go through as you begin to recognise that you’re losing things, you’re forgetting things, you can’t do the things that you could do before.”
A Case Of Mistaken Identity
While chatting to Professor Swinton, Emma Mullings shared her own experience of caring for her grandparents when they had dementia.
“I remember with my grandfather, he thought I was my mother, and my presence brought him so much joy,” she recalled. “Initially I would tell him, it’s Emma, your granddaughter. But then I realised it just brought him so much joy and peace to think that he’s spending time with his daughter so I just let it go.”
Professor Swinton said this was a good approach.
“For some people it would be important that you persuade this person that you’re not her,” he said. “But on the other hand you think, “well if this is bringing him peace and comfort and enabling him to dwell well in memories that he has, then it’s probably a good thing.
“In reality there were good things happening.”
People With Dementia Still Have Something To Offer
As a former Registered Nurse, Professor Swinton spent many years working with people living with mental illness and dementia, and also spent time as a chaplain.
This experience helped him to form a very accepting, all-embracing worldview.
“Hanging around with people with advanced dementia, you do learn a lot about what it means to be human, and what it means not to be human,” he said.
“I always remember the way people in dementia wards were wheeled out, put in front of a television set, would sit there all day and then get wheeled back again in the evening,” he said. “There’s something not right with that”.
“Particularly when you go into that place, start to sing songs and doing the sacraments [religious ceremonies], and people are really engaged. So clearly, there’s much more going on than we’re giving people credit for.”
Pastoral Care In The World Of Medicine
Slowly but surely, the medical world is paying more attention to the importance of spirituality in the area of aged care, said Professor Swinton.
“I think there is a general recognition that spirituality is significant for people who are ageing and people with dementia,” he said.
“But people very often don’t have time to focus on that, because the immediate tasks seem much more important than existential reflection. But in reality, if we’re serious about holistic, person-centred care, then these things are central. Because everybody has a story to tell, and everybody has a need for a sense of meaning and purpose and hope and value.”
Dementia Doesn’t Mean We Lose Our Purpose
In his book, Living In The Memories Of God, John Swinton challenges the notion that losing our memory equates to losing our value.
“Surveys show that people would much rather have something like cancer than dementia,” he said. “Why is that? It’s because we seem to understand our personal identity, according to the story that we tell about ourselves.
“So as long as I can tell my story, I’m OK. But as soon as I start to forget my history, or forget where I am, then I can’t be the person that I am, so therefore I lose myself. It’s as if the only thing that matters about you is your history.”
This attitude shows up in phrases like, “he’s not the person he used to be”, and “she’s not herself”.
Even If You Lose Your Memory, God Won’t Lose You
Prof Swinton believes we can take a more positive approach, in which a person is “still themselves”, despite their loss of memory.
It’s an approach that’s based on a belief in a loving God, and it can lead carers to view those with dementia as significant people—with a positive future.
“When you bring theology into the mix, you begin to see that are who we are, because God remembers us as we are,” Prof Swinton said.
“It’s not because we remember, or because of anything we’ve done. We simply are, because God wants us to be. I think that’s the beginning point of my theological reflection. And that’s quite a counter-cultural story.
“The cultural story says, “you’re losing yourself”. The theological story says “no, that’s impossible; God won’t lose you”.
Putting Theology To Work In Aged Care
In the days when Jesus walked the earth, people were only considered to have value because of what they could do. As a result, disabled children and elderly people were at times left out in the cold to die.
It’s a worldview that Jesus challenged with the theology that all humans have equal value, because of God’s love.
Professor Swinton wants to challenge Western society with this same belief.
“People with dementia are highly stigmatised, as broken people who are rejected by society,” he said. “We say, “you can’t contribute to the economy, so therefore why would we waste our time with people like these”.
“Into that context, you have the church speaking exactly the same words as the early church: “people have intrinsic value”. We recognise the humanness of people, irrespective of what culture says, and irrespective of their ability to contribute at this moment in time.”
Professor Swinton believes the Western view of identity, based on individuality and autonomy, comes undone when ageing and dementia steal our independence.
That’s where God comes in, he says.
“I’m challenging that presupposition that identity is something you do by yourself, and realising actually, in the body of Christ, identity is what we do together,” he said.
By working closely with ageing and dementia care organisations like Hammond Care, Prof Swinton’s views are making a real difference to the lives of the elderly and those with dementia.