Becoming Forgetful in Lent : Discipleship in Light of Dementia

“Discipleship in Light of Dementia” was an appropriate subtitle for Reverend Rob Merchant’s Lent Lecture to the Bank Churches Group at St Mary le Bow tonight. “Becoming Forgetful in Lent” focused not only on the discipleship of those suffering from dementia and their immediate families, but the response of the whole church community as part of the Body of Christ.


Reverend Rob, who had experience working in the health service before ordination, touched on the complexities of dementia and our understanding of the syndrome, which describes a range of symptoms and conditions (including Alzheimer’s Disease). He described dementia as a journey of estrangement and fragmentation, using the analogy of a ship setting sail towards the horizon. He suggested that “What is dementia?” could replace “What is dying?” in Bishop Charles Henry Brent’s poem “The Ship”:


What is [dementia]?

A ship sails and I stand watching

till she fades on the horizon,

and someone at my side

says, "She is gone".

Gone where? Gone from my sight,

that is all; she is just as

large as when I saw her...

the diminished size and total

loss of sight is in me, not in her,

and just at the moment

when someone at my side

says "she is gone", there are others

who are watching her coming,

and other voices take up the glad shout,

 "there she comes!" ...and that is [dementia].

Quoting statistics from the Alzheimer’s Society (1 in 6 people over 80 will suffer some form of dementia; 1 in 14 people for people between the age of 65 and 80) he warned the majority of us who will not suffer from the condition against colluding “with a world terrified of its own mortality” in our response as disciples of Christ.

He recalled the story of a man who approached him after a public lecture, whose father had been diagnosed with dementia; both father and son were devout believers. The man’s son was extremely distressed when his father could no longer recite the words of the Creed; he felt that all his life his father had tried to live as a good Christian and yet at the end he was in danger of forgetting Christ. Had it all been for nothing? Was he forsaking his faith just when he needed it most?

Reverend Rob challenged us all to guard against the effects of “individualism” on discipleship. He suggested that individualism can inoculate us from the suffering of others and estrange us from the Body of Christ. He asked us to remember that while those suffering from dementia and those who care for them may appear to lose sight of what we have known as that person’s “self,” God does not lose sight of them; the loss of sight is ours. He reminded us that dementia can never trump ‘Imago Dei’ - we are all made in the image of God and remain so. This shared connection lies at the heart of Reverend Rob’s advice as to how church communities can “re-member” those suffering from dementia.

As Reverend Rob addressed us, I remembered that “Church” means a gathering of people - and in that gathering lies strength. I thought about Abba Dorotheos of Gaza, one of the Desert Fathers, who developed the notion of a “Wheel of Love” - imagining us as spokes of a wheel with God at the centre - the closer we move towards each other the closer we are in awareness of our relationship with God.

Reverend Rob gave us four suggestions to challenge our response to dementia, as disciples or “Ambassadors” for Christ:


1. Be not afraid

We must work hard to be a community that is not afraid of dementia and does not let fear distance us from the Body of Christ. Whenever we hear ourselves speak of someone suffering with dementia using phrases such as “they are not really there any more,” we are letting the culture of individualism get in the way of our Christianity; putting ourselves in place of God. God loves us all and that perfect love can drive away fear.

2. Give space for lament 

Reverend Rob quoted part of Psalm 88;

O Lord, why do you cast me off?

    Why do you hide your face from me?

Wretched and close to death from my youth up,

    I suffer your terrors; I am desperate.

Your wrath has swept over me;

    your dread assaults destroy me.

They surround me like a flood all day long;

    from all sides they close in on me.

You have caused friend and neighbor to shun me;

    my companions are in darkness.

The narrative of exile - which can be found throughout many of the books of bible but especially in the Book of Psalms - is particularly relevant to the effects of dementia. Reverend Rob explained that the Psalms teach us to lament when in exile. He described lamenting as the simultaneous release of despair and the presence of promised hope.

He suggested that allowing time and space to lament was valuable for both sufferers of dementia and those closest to them. Rather than jumping in to offer suggestions on coping strategies and sources of advice when someone we know is diagnosed with dementia - filling space with good intentions - perhaps the best intention is to create time to sit, listen, be present and pray. Providing space for lament allows the outpouring of despair and the presence of promised hope.


3. Continually re-member

The greatest commandments at the heart of our faith draw us together by and through the love of God. At the Eucharist we not only “remember” the death and resurrection of Christ but we are also “re-membered” as part of one body. By continuing to share in this gift of “re-membering” we can help to counter the fragmentary effects of dementia. To not do so means we are dis-membering the Body of Christ.

4. Be a community of the now and the not yet

Finally, Reverend Rob called on us to remember that we are an “eschatological” community - reminding us that we are called by Christ to be people of both the now and the not yet. By thinking, praying and talking about the death and resurrection of Christ we can help transform a society which seems terrified of its own mortality.

I found Revered Rob’s words embarrassingly obvious and simply inspiring in equal measure! Being connected to - in communion with - one another - is a gift we can use to overcome so many (perhaps all?) of the challenges that confront us, not just dementia. This is something that is easy to forget at all times - not just in Lent. It is also something to be thankful for each time we kneel to receive the Eucharist.


Resources and Links

Reverend Rob recommended John Swinton’s book “Dementia : Living in the Memories of God.” a review of which can be found here

He also recommended books from “Pictures to Share” as useful starting points for being present with people suffering from dementia. This book focusses on the Christian faith and was part funded by the Elise Pilkington Charitable Trust of which he is a Trustee.

Dementia Statistics Hub (produced by the Alzheimer's Society)