I AM sitting in the pew, waiting for the service of holy communion to start. I feel alone, and yet I am not lonely, surrounded by other church members. I do my best to make conversation with the person sitting next to me, in the hope that the words I say make sense. She smiles back, but her reply swirls around my brain, as if her words were trapped in a bowl full of murky water. The words I hear and wish to say are floating in and out of view. There is a breakdown, although temporary, in my connecting with the world outside my body.
I have vascular dementia and other age-related health issues, including muscle depletion. But, while my dementia is increasingly taking over my physical and mental activities, I am growing spiritually stronger. This is despite my long-held scepticism that the Church as an institution has any part to play in our post-modern world, and that God now resides “outside the box” of organised religion. Yet it is in my darkest moments that I have discovered a spirituality that has rekindled my awareness of God and enabled me to see past my negative view of “church”.
ALTHOUGH, in many ways, my view remains “outside the box”, I am clinging by my fingertips to the Church I have loved since my confirmation. In God Outside the Box: Why spiritual people object to Christianity (SPCK, 2003), Richard Harries has gone a long way in reaching out to those of us who have felt outside the institution, especially as our dementia and physical demise worsened.
I was diagnosed as having early stage dementia in 2019. As dementia began to take over more of my daily existence, I felt there was little purpose in living. I had a deep fear of losing control, even of being able to accomplish simple daily tasks without getting confused. Having spent two decades as chief executive of a charity supporting older people on their release from prison, I came to the conclusion that there was nothing left but to close the charity.
MY EXPERIENCE of dementia and how I manage it, is, of course, personal to me. Church members will have different experiences of dementia. It is not a single disease but a term used for a range of symptoms, caused by underlying diseases, such as Alzheimer’s and vascular dementia. Recently, there have been documentaries (such as Channel 5’s Will You Get Dementia?), and an increasing number of articles and publications on the subject. I also came across a book by Peter Kevern, in which he applies his Roman Catholic theological understanding of a person living with dementia: Touching God: Dementia and the bodies of Christ (Books, 21 November 2025).
I face a daily struggle to find the patience that will enable me to “wait upon the Lord” when I can see no way forward. It is as if there were a battle going on inside my head to accept that I can no longer achieve all I would like to do. This is especially true when my brain momentarily blocks my connection with God and others. It is here that I have found solace from Rowan Williams, and his insights on those Anglicans who “in their different ways [are] apologists for a theologically informed and spiritually sustained patience”. He writes: “They take it for granted that the believer is always learning, moving in and out of speech and silence in a continuous wonder and a continuous turning inside-out of mind and feeling” (Anglican Identities, DLT, 2004).
This has led me to revisit my Ph.D. thesis (“Theology of the Incarcerated: Views from the underside”, University of Sheffield, 2007). I was fortunate to have had as my external examiner Professor John Swinton, the author of Resurrecting the Person: Friendship and the care of people with mental health problems (Abingdon Press, 2000). In the section on dementia and the importance of a person’s spirituality, Swinton argues that this means: “People are not wholly at the mercy of either their brains or their genes.”
PROFESSOR SWINTON continues to influence my thinking now that I am myself facing dementia, and his work is more applicable than ever in my journey of faith, hope, and spiritual well-being. But I know that this is not a journey I am taking by myself. We are the many silent ones “hanging on by our fingertips” on the fringes of the Church — including those with a negative view of church authority.
My spirituality recognises the importance that relationships play within the religious community. This emphasises God’s relationship with community. My spiritual journey is not in any way dependent on my own ego; my relationship with God and my spiritual growth are dependent on my relationship with God’s community. This runs counter to post-modern secular concepts of spirituality. So, I am seeking to develop a theology and praxis, within the context of diminishing mental and physical health, for those of us who struggle with dementia.
I cannot halt the ageing process and its further impact on my diminishing life with dementia. But I have found that I can slow it down and manage my decline daily. This would not be possible without the intervention of the Holy Spirit in my life. So my spiritual journey is now one of an evolving relationship with God and with others, which give me meaning and purpose.
I HAVE not found it easy to write about my dementia journey for readers of the Church Times. There have been periods when my hands have frozen as I have struggled to grab the words swirling around in the fog that engulfs my brain. I have learned to be patient as I try to connect brain to hands, and it sometimes seems as though my head is a concrete block when I feel and see nothing. This emptiness leaves me exhausted and discouraged. Yet, I have now learned to wait — sometimes for several hours or even days — until the words start flowing again.
It is through theologians such as Williams, Harries, and Swinton that my lived experience now enables me to re-engage with the Anglican Church and enjoy fellowship with my congregation. I find that this activity has additional benefits that enhance my spiritual well-being. The more I interact with others, the more my brain is stimulated.
In my search for meaning in my declining years, my spirituality is particularly enhanced as I kneel with my brothers and sisters in Christ during the eucharist. As we move from the pew to the sanctuary, we encounter God’s relationship with community in the here and now, and it is at times like this that my faith in Jesus Christ as the risen Lord is strengthened.
Stuart Ware is writing a book, Dementia: Ageing, faith, and spiritual well-being. He would be glad to hear from others with relevant experiences. Email stuartware@btinternet.com