'Head to Heart' resource for families living through dementia

Published: 30th January 2023

Sarah Thorpe's commitment to her role as the Diocese of Lichfield's Dementia-Friendly Churches Enabler has deep roots in her own family experience. Here, she describes a new resource that draws fully on a decade of familiarity:

This resource is born of personal experience – my own family’s lived experience of dementia. My dad died in 2018 and he was diagnosed with dementia ten years earlier. He’d been a solicitor in Birmingham and spent his working life making incisive, head-level connections. The journey of the last decade of his life was a journey from head to heart. As a family (after a long, covid-delayed gestation!), we are sharing a video resource reflecting on our own experiences and the things that helped us, our family and friends and the expanding team of carers, as my father’s dementia advanced. It’s called 'Head to Heart: Shared family reflections on living through dementia'.

Across our dementia-friendly churches network, we’re keen to share the lived experience of dementia, so I’m glad to share this within our network and beyond.  It’s part of our commitment to stay in step with, support and learn both from people with a diagnosis of dementia and also from 'carer' partners and families and friends, as patterns change through advancing dementia. 

Endorsement from John Swinton

Revd Professor John Swinton is a registered mental health nurse and Professor in Practical Theology and Pastoral Care at the University of Aberdeen. He is the author of Dementia: Living in the Memories of God. With the following endorsement, he sets Head to Heart in context, affirming that it’s not about one family’s journey, but about journeying together and sharing experience – honest journeying, with space for hope:

 “Living with dementia is not easy. It is a mixture of happiness and joy, sadness and grief, impossibility and new possibilities. It’s difficult, but there is always hope. Perhaps the idea of dementia as a journey might be close to the reality of people’s lives. As one person with dementia I spoke to put it: “It’s more of a journey than a clear path. Journeys are a bit messier than pathways!” Indeed they are!

"A journey is something one embarks upon willingly or otherwise as one moves from one place to another. Journeys are unpredictable, unique, person centred and always open to surprises. Along the way we meet people and encounter situations, some of which are helpful others of which are not. Each encounter, every step, changes the direction and the feel of your journey. Some encounters can even change the meaning of our journey. Sometimes the destination, like the road before us, can be pretty unclear. Sometimes the journey of people living with dementia and their supporters is closer to the winter journey of a displaced refugee than an organised summer hike!

"Nevertheless, the key thing about a journey is that you are always heading towards somewhere and something; not nowhere and nothing. Destination matters. Thinking of dementia as a journey keeps our eyes on the necessity to have in mind precisely what kind of destination we might desire. Sometimes we think that the endpoint of the journey of dementia is simply death. But that is a mistake. The endpoint of the journey of dementia is to live well now and in the future.

"Living well with dementia can be difficult. We need guides for our journey and people around us who will help us to live well in difficult circumstances.

"These video materials provide us with some tools for the journey. In a straightforward, honest and compassionate way the stories that are told and the wisdom that is shared can help all of us together, overcome our fear of dementia, and journey together into a hopeful future that is certainly marked by suffering, but refuses to be defined by it. There is always a space for hope.”

Rev. Professor John Swinton FBA, FRSE, FISSR, RMN, RNMD
Professor in Practical Theology and Pastoral Care
University of Aberdeen

Head to Heart - the movie

There’s a choice of either viewing the whole video, which is about half an hour long, or viewing an individual free-standing section, perhaps a 3-minute clip. One short section may be enough to open a discussion. The same link gives access both ways.

NOTE: Someone has commented that the whole film is like a box of chocolates: rather than eating the whole box at one sitting, it may be enough to try one or two chocolates/sections at a time! Particularly if you are affected by dementia yourself, give some thought to whether/when/how you chose to use this resource. You may want to watch it with someone you trust, giving space to notice your own reaction/response to any given section, as you go. And if something touches you deeply, make sure you discuss this with someone you trust: it will be important.

Ways to use “Head to Heart”

  • St Mary’s Church in Ellesmere is planning a Saturday morning dementia awareness event, showing Head to Heart – and providing tea, coffee and biscuits.
  • Rev David Warbrick has used Head to Heart in a service at All Saints Church, Kings Heath, Birmingham.  He explains, “we shared three portions at our evening service with reflection on memory loss and dementia. Here is the order of service we used.  We make a large Venn diagram onto which people could place a circle of card, written on if they wished, representing anyone they were thinking about.” The three overlapping circles of the Venn diagram showed people living with dementia, people caring for someone with dementia and the churches or communities around them.    
  • What about using Head to Heart to open up conversations in Dementia Action Week this year, which runs from 15 – 21 May?  You could gather people together in your church or community, either for a service which includes sections from Head to Heart or simply to look at some or all of Head to Heart together or over a cuppa.
  • Rev Alan Combes, Methodist Minister and Superintendent in the Vale of Stour Circuit, is using Head to Heart with his team.  He says, “Head to Heart is a truly excellent short series of resources that have really helped me in very practical ways better to understand how to approach people living with dementia, how to speak and act in ways that guide the conversation to avoid unnecessary stress for all involved and offer a path to shared moments finding positives amongst the challenges. The movement from head to heart, focussing on our shared feelings, rather than questions that seek facts which may be difficult to recall, can fundamentally change our interactions and engagement with those we love and those we serve. I am seeking to share this resource with my team to improve our worship and ministry. Thank you for helping me to find the glass half full…”

If you’d like to discuss anything from this blog post, now or at any stage, you are welcome to get in touch with me, Sarah Thorpe, on 0798 224 8949 or sarah.thorpe@lichfield.anglican.org

Page last updated: Thursday 2nd February 2023 7:53 AM
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