Dementia and learning to attend upon the Lord

I AM sitting within the pew, waiting for the service of holy communion to begin. I feel alone, and yet I’m not lonely, surrounded by other church members. I do my best to make conversation with the person sitting next to me, within 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 stuffed with murky water. The words I hear and want to say are floating out and in of view. There is a breakdown, although temporary, in my connecting with the world outside my body.

I even have vascular dementia and other age-related health issues, including muscle depletion. But, while my dementia is increasingly taking up my physical and mental activities, I’m growing spiritually stronger. This is despite my long-held scepticism that the Church as an establishment has any part to play in our post-modern world, and that God now resides “outside the box” of organised religion. Yet it’s in my darkest moments that I even have discovered a spirituality that has rekindled my awareness of God and enabled me to see past my negative view of “church”.

ALTHOUGH, in some ways, my view stays “outside the box”, I’m clinging by my fingertips to the Church I even have loved since my confirmation. In God Outside the Box: Why spiritual people object to Christianity (SPCK, 2003), Richard Harries has gone a great distance in reaching out to those of us who’ve felt outside the institution, especially as our dementia and physical demise worsened.

I used to be diagnosed as having early stage dementia in 2019. As dementia began to take over more of my day by day existence, I felt there was little purpose in living. I had a deep fear of losing control, even of having the ability to accomplish easy day by day tasks without getting confused. Having spent twenty years as chief executive of a charity supporting older people on their release from prison, I got here to the conclusion that there was nothing left but to shut the charity.

MY EXPERIENCE of dementia and the way I manage it, is, in fact, personal to me. Church members could have different experiences of dementia. It is just not a single disease but a term used for a variety of symptoms, brought on by underlying diseases, corresponding to Alzheimer’s and vascular dementia. Recently, there have been documentaries (corresponding to Channel 5’s Will You Get Dementia?), and an increasing variety of articles and publications on the topic. I also got here across a book by Peter Kevern, by which he applies his Roman Catholic theological understanding of an individual living with dementia: Touching God: Dementia and the bodies of Christ (Books, 21 November 2025).

I face a day by day struggle to seek out the patience that can enable me to “wait upon the Lord” after I can see no way forward. It is as if there were a battle happening inside my head to just accept that I can now not achieve all I would really like to do. This is very true when my brain momentarily blocks my reference to God and others. It is here that I even have found solace from Rowan Williams, and his insights on those Anglicans who “of their other ways [are] apologists for a theologically informed and spiritually sustained patience”. He writes: “They take it without any consideration that the believer is at all times learning, moving out and in 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 used to be fortunate to have had as my external examiner Professor John Swinton, the writer of Resurrecting the Person: Friendship and the care of individuals with mental health problems (Abingdon Press, 2000). In the section on dementia and the importance of an individual’s spirituality, Swinton argues that this implies: “People are usually not wholly on the mercy of either their brains or their genes.”

PROFESSOR SWINTON continues to influence my pondering now that I’m myself facing dementia, and his work is more applicable than ever in my journey of religion, hope, and spiritual well-being. But I do know that this is just not a journey I’m taking by myself. We are the numerous 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 throughout the religious community. This emphasises God’s relationship with community. My spiritual journey is just not in any way dependent by myself ego; my relationship with God and my spiritual growth are depending on my relationship with God’s community. This runs counter to post-modern secular concepts of spirituality. So, I’m searching for to develop a theology and praxis, throughout 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 even have found that I can slow it down and manage my decline day by day. This wouldn’t be possible without the intervention of the Holy Spirit in my life. So my spiritual journey is now one in every 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 even have struggled to grab the words swirling around within the fog that engulfs my brain. I even have learned to be patient as I attempt to connect brain to hands, and it sometimes seems as if my head is a concrete block after I feel and see nothing. This emptiness leaves me exhausted and discouraged. Yet, I even have now learned to attend — sometimes for several hours and even days — until the words start flowing again.

It is thru theologians corresponding to Williams, Harries, and Swinton that my lived experience now enables me to re-engage with the Anglican Church and revel in fellowship with my congregation. I find that this activity has additional advantages that enhance my spiritual well-being. The more I interact with others, the more my brain is stimulated.

In my seek for meaning in my declining years, my spirituality is especially enhanced as I kneel with my brothers and sisters in Christ through the eucharist. As we move from the pew to the sanctuary, we encounter God’s relationship with community within the here and now, and it’s at times like this that my faith in Jesus Christ because the risen Lord is strengthened.

Stuart Ware is writing a book, Dementia: Ageing, faith, and spiritual well-being. He could be glad to listen to from others with relevant experiences. Email stuartware@btinternet.com