Here with Us: A Parish Guide to Serving People with Dementia

Q+A with award-winning writer and photographer Michael Swan

Faith and faith communities can remain an important anchor in the lives of people living with dementia  and equally, in the lives of their care partners. Religious services provide meaningful activity, soothing routines, and opportunities to socialize that improve quality of life for people living with dementia.  Supporting the ongoing inclusion of people with dementia in parish life is crucial to decreasing stigma about the condition. In the book Here With Us, Michael Swan pushes past the shared cultural assumptions regarding dementia in the church. Swan eloquently presents extensive research and practical, faith-based strategies for parishes to better support their community members living with dementia and their caregivers. 

Fear paralyzes, so if there's a goal in the book in general it's to push us out of paralysis, the goal is to actually give people some sense that they can do something.

– Michael Swan, author Here with Us: A Parish Guide to Serving People with Dementia

Can you tell me about the moment it occurred to you that publishing this book is important?  

I wrote an article about Janet Somerville and her dementia...well her mild cognitive impairment...It came to the notice of the Novalis  publishing company, and they had been thinking of a book on dementia for parishes for some time. So, they came to me, and I, quite possibly should have said to them, that I am neither a neurologist, nor a doctor. I don't even play one on TV.  I'm not a priest and I've never run a parish. So I am entirely unqualified but that’s not what writers tend to highlight when a proposal comes along, we tend to highlight, “oh yeah I can do that.” … It's not that any of it is of surprise or a revelation, but, certainly, the statistical enormity of problems society faces over the next 30 years with the rising numbers of people living with dementia is something that, Yes, as I wrote became clear to me that this is something we need to pay much more attention to not just parishes, but as a society.  

From your extensive research, what are the primary barriers that prevent church communities from implementing measures to ensure the comfort of parishioners living with dementia?

We're scared...! Not just the parishes, as a society we're absolutely frightened. Individually, we're frightened of our own futures as we get older. We don't understand who we become If we lose our command of language and If we can't remember the people in our lives. I mean it is an absolutely frightening disease. I think it is much more frightening  in a way than cancer, heart disease and the other big killers because  we understand our bodies as these machines...but the things that dementia affects, they’re constituents of our identity and we don't want to face it.   

In the book, you discuss, briefly, the importance of understanding the general science of dementia. Why is scientific education regarding dementia crucial for the caregivers of people living with dementia?

As a journalist, I am somewhat dismayed at people's inability to deal with facts. I think it cripples us…, but Jesus declares, I am the truth, the way and the life. God is truth and if you're seeking God, you better be seeking the truth. To say, ‘all that science is too complicated for me,’  It leaves you with nothing...One of the things that Jesus says the most often in the Gospels is, ‘Be not afraid.’ Fear paralyzes, so if there's a goal in that section of the book or the book in general  it's to push us out of that paralysis, it’s to actually give people some sense that they can do something.

Can you briefly explain what Christian meditation is and how this disciplined and spiritual practice can be helpful for individuals living with dementia?

This is an area of  science that is still developing, we don't know whether meditation really will improve your brain health. But I have talked to doctors and read doctors who say, ‘I meditate.’ They're convinced that this is a practice that's good for your brain. Whether it will prevent Alzheimer's or not, it's good for your brain, Now! So I certainly encourage people to meditate... I think there's often this fear and feeling that it’s some deep secret and it must be very difficult and people who meditate must all be incredible, spiritual masters. But no, I don't think so. It's a pretty straightforward practice of calming your mind, focusing on something and paying attention to your body, and your mind. The World Community for Christian Meditation is a good place to go to for some tips on this. Meditation is a practice in daily life and you will only notice its results over a long period of time.

What are some tips you have for parishes to better accommodate people living with dementia?

Most of the people living with dementia are not at church. They're in long term care homes and in hospitals, they're institutionalized or they're living at home. But their caregivers, they’re coming. So, doing what you can with the building that you’ve got is great, but it’s important to actually know who's caring for somebody with dementia. Talk to them, find out what they need and what they want from their parish. I think that, as a first step, it’s doable, and extremely important. Get up on Sunday morning and ask who's caring for somebody? This may not be limited to dementia, but as the numbers show; there’s half a million people living with dementia right now. So, schedule a meeting, bring them in, pray with them and ask them what the community can do for you.

In the chapter Real Dying, you write about what it means to be a Christian in a world where assisted suicide is legalized. What advice do you have for caregivers or parish leaders who are faced with this tough decision?

Any Christian community is going to have great doubts about a ‘consumerist notion’ of freedom. But at the same time, nobody can pretend that this is easy. Knowing that assisted suicide is an option, and is supported by the state... I think it's almost impossible not to make that choice. But the job of the Christian community has to be to say to people, to caregivers that; their life is valuable, that they mean something. Not maybe in a way that they once held meaning in their lives, but they mean something to us… and that they are loved for who they are, not just who they once were. It's a difficult decision, but all I can say is that no one should face it alone.

If readers of your book could only take one important tip or call to action from it, what would you want it to be? 

Certainly the first step is to overcome fear and with overcoming fear that should free you to actually act. I think very often, there's a kind of paralysis about taking on any action, or trying to do anything. Nobody's idea of Heaven is being part of a committee, but being part of a committee is not the worst thing in the world. The worst thing in the world is to live with this disease, and try to pretend it's not there. That's the worst thing. So, I talk in the book about somehow gathering a community of capable, sensible, motivated people. However you figure out how to do that, whether you ask for nominations and do it that way or whether the parish priest just designates people. Begin to break this problem down in some kind of organized way. Ask yourself the question about what it means to live with dementia and how we as a parish live with dementia. What more can we do?

Here with Us: a Parish Guide to Serving People with Dementia is published by Novalis 

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