In 2021 my Uncle David (who also has Down Syndrome) was diagnosed with young-onset dementia and moved into a care home. Before long he could no longer recognise me or anyone else in his family. He was often confused and soon lost the ability to speak coherently. It felt as though the man I deeply loved was gone. I decided that I did not want to visit him. It was too painful to see him so shrunken.

Getting alongside someone who has dementia is one of the hardest possible callings. The day-to-day practicalities of helping with washing, dressing, eating and sleeping become incredibly frustrating. It is upsetting not to be able to chat as we once did, or to have to repeat the same conversation over and over. It is distressing to see them behave in a way they never would have before. They may even seem to have forgotten their faith.

How can we make sense of something that can feel so cruel and can change a person so much? What is God’s perspective on dementia? And how can we find the hope and energy to get alongside someone with dementia?

UK culture and dementia

As a nation, we are terrified of dementia. Half of UK adults say they fear developing dementia more than any other condition (Alzheimer's Research UK) and almost two-thirds of people (62%) felt a dementia diagnosis would mean their life was over (Alzheimer's Society).

We highly value the ability to think rationally and tell our own story. We like it when people talk about their family, their work and leisure life, and the funny things that have happened to them. We like organised thoughts and find rambling or repetition frustrating. We often consider the core centre of a person to be their brain, which means we can equate damage to someone’s brain with damage to their personhood.

When somebody we know loses the ability to remember and organise their thoughts, it can feel as though the person is disappearing. If they cannot tell us their story, then it is like they cease to fully exist as a person. People with dementia are often spoken about in the past tense, as if they have already died.

In Gail Young’s wonderful play about two sisters caring for their mother with dementia, one sister, Louise, cries out in prayer in a moment of wild desperation:

‘I hope I don't lose my marbles when I get old... I'd rather leave the party early than overstay my welcome… Dear God, when my time comes please, please, please let me die in my sleep in my own bed of a heart attack with all my faculties intact. Amen.’ (Gail Young, Bothered and Bewildered, 2015)

Louise would rather be dead than have dementia. I wonder how many of us have prayed a similar prayer – I know that I have.

The gospel and dementia

The Christian gospel is a beacon of hope in the midst of this dark fear.  

The Bible says that our identity, that our very lives, are ‘hidden with Christ in God’ (Colossians 3:3). Our identity is not found in our rationality or communication. Our identity is that we are children of God.

When a Christian gets dementia, their identity is unchanged. If their personality or behaviour completely alters, even if they shout or swear or curse God in a fog of anguish and confusion, their identity remains unchanged. They are still hidden with Christ in God, and nothing can separate them from his love (Romans 8:38-39).

Furthermore, God has secured a future renewal for every believer, as Revelation 21:4-5 promises us. The ‘Liturgy for Those Facing the Slow Loss of Memory’ beautifully illustrates this present-and-future hope:

‘When I no longer know the faces of my family,
Yet will you know me, O Lord. 
When I can no longer remember my own name, 
Yet will you remember me.

This will be my enduring hope,
until at last I wake from my long fog
into a bright morning of clarity
and see you face to face, 
remembering again all that I had forgotten, 
and knowing then even as I am known.’

(Douglas Kaine McKelvey, Every Moment Holy, Volume II: Death, Grief, & Hope)

When somebody forgets their stories and loved ones, these memories are not in fact gone; they are held by God himself. The secure anchor for our lives is not our own memory, but that we are seen, held and remembered by God Himself. We live securely in the memories of God, even if we forget who we are and who He is (for more on this, read Dementia: Living in the Memories of God by John Swinton).

Visiting Uncle David

After a couple of years of wanting to stay away, I decided to start visiting Uncle David again in his care home. During my visits I usually sing him Elvis songs (his favourite), read him some bits of Bible, tell him about the family news. I tell him his stories – about him travelling to Elvis’ house at Graceland, about us watching Christmas movies in his TV room, about the time he piloted and crashed a canal barge… Sometimes he smiles at me. Sometimes he sleeps through the whole visit!

A prayer I’ve started to pray as I drive to his care home is: ‘Lord, how do you want to use Uncle David to bless me today?’ Rather than me going purely to give to Uncle David, I want to be willing to receive from him as well. He always had a big heart and loved helping other people, so why would that change now?

I have found that I often drive to the care home feeling stressed, tired, anxious and scattered. But after an hour’s visit with Uncle David, I drive home feeling sad but also peaceful, more in touch with my emotions, grateful for the good things in my life, more centred on God and the reality of the coming new creation.

Uncle David blesses me in those times. He listens. He seems to enjoy my company, even though he often doesn’t say a word. He ministers the peace and presence of God. Even though it’s painful to see his body, mind and world shrinking, his soul is not diminished and his ability to be generous remains.

Uncle David has forgotten who I am and who he is. But we, his family and friends, have not forgotten who he is. And most importantly God remembers Uncle David and holds him securely, and God will carry him safely into the glorious renewal of all things.

Here’s a final thought to reflect on: Those of us who are getting alongside those with dementia also live in the memories of God. He remembers us and sees us. He sees our perseverance, struggles and frustrations, and He loves us. We also live securely in the memories of God.

Keen to read more?

Check out Jonny’s 5 ways to get alongside someone with dementia