1. Dementia - a spiritual journey towards the divine
A personal view of dementia
Christine Bryden
My name is Christine Bryden.
I will be talking from a personal perspective, as a Christian who has fronto-temporal dementia. I was diagnosed in 1995 with dementia and have travelled an extraordinary spiritual, physical and emotional journey since that time. The first few years of this journey are captured in my book “Who will I be when I die?”, written at the urging of Liz MacKinlay and published in 1998.
Since then, my life has continued to blossom and unfold. Truly I can identify with Basil Hume when he was diagnosed with cancer: “I have received two wonderful graces. First the time to prepare for a new future. Secondly, I find myself - uncharacteristically - at peace.”
In this talk I will begin with some challenging views of dementia, and of the concept that it might be the Theological Disease.
I speak of where I stand as a Christian with dementia, and how I believe God relates to me and I to him. I speak too of your role in relating to people with dementia, in ministering to them, of how you can bring the Christ-light to us.

2. People with dementia ...
“live within a complex web of social encounters that are tainted with stigma.”
Stigma “like racism is pervasive and endemic to their existence.”
This threatens our spiritual identity.
I’ll begin with some words that spoke to my heart, leapt out at me, from a book describing the difficulties of people with mental disability by James Dudley.
I found I could easily replace the word dementia for intellectual disability.
Like these people, we persons with dementia “live within a complex web of social encounters that are tainted with stigma which like racism is pervasive and endemic to our existence.”
This stigma leads to restrictions on our ability to develop our spirituality.
It threatens our spiritual identity.
It is assumed that the limits due to our failing cognition place us beyond reach of normal spiritual practices, of communion with God and with others.
But to what extent are these assumptions due to the limits placed upon us due to the stigma attached with our dementia?

3. Dementia has been called the “theological disease”
Dementia “entails a loss of self [and is] disintegrative, non-redemptive [thus] challenging theologically.”
“But can you truly say “my mind is absent and body an empty shell”?
Where does my journey begin? At what stage have I lost my spirituality?
Dementia has been called the “theological disease” by David Keck, who cared for his mother with Alzheimer’s Disease. There is prolonged mental deterioration, and no presumption of the existence of a cognitive person theologically.
He says that the “loss of memory entails a loss of self” and the apparent disintegration of a human being. Perhaps Alzheimer's patients can remind us that death and loss of control belong at the heart of theological reflection.”
David Keck’s views shock me as a person with dementia in the early stages. Can I truly regard dementia as “deconstruction incarnate”, “disintegrative, non-redemptive … amoral ..challenging theologically”?
Certainly I challenge the view of Alzheimer’s Disease International that the “mind is absent and body an empty shell”.
The question is where does this journey begin, and at what stage can you deny me my self hood and my spirituality?

4. What measures my existence as a spiritual being?
As cognition fades, spirituality can flourish as a source of identity.
A spiritual self reflected in the divine and given meaning as a transcendent being.
Is cognition the only measure of our presence amongst you as spiritual beings? Certainly my capacity for accurate communication of thought is diminishing daily. It is difficult to find the words for the pictures in my head so as to communicate with you. Does this mean my mind is absent?
Even if these pictures may one day themselves fade, is my soul connected with this failing cognition?
I do not believe this is so. I might have difficulty feeling the presence of God, or being able to speak the words of a prayer in my mind, but I can commune without words.
As my cognition fades, my spirituality can flourish as an important source of identity.
As I lose an identity in the world around me, which is so anxious to define me by what I do and say rather than who I am, I can seek an identity by simply being me, a person created in the image of God. My spiritual self is reflected in the divine and given meaning as a transcendent being.

5. Is spirituality the temporal lobe?
If I can get my God-experience from a well-placed electrode …
will I lose my God-experience when I have lost even more of this part of my brain?
But we know so little about the brain, let alone how it relates to the mind and soul.
With my fronto-temporal dementia, I am daily losing more and more bits of my temporal lobe.
Neurologists at UCSD have found that electrical stimulation of the temporal lobe gives intense spiritual experiences. A Canadian neuroscientist has also reproduced such feelings in unbelievers.
Does this mean our God-experience is simply an electrical storm in the brain? Or is this merely the means he has given us to appreciate his presence?
The answer to these questions, even the questions themselves, are very speculative.
We know very little about the brain, let alone how it relates to the mind.
And Lord Winston on a recent TV program “came out” as a faithful Jew. After much discussion about the brain and where our mind might reside, he pointed to bigger questions, of the soul, of belief and faith which could not be located within the brain structure.

6. The lie of dementia ...
… is that the “mind is absent and the body is an empty shell.”
This medical model silences the voice of people with dementia.
I am more than a damaged brain. My creation in the divine image is as a soul capable of love, sacrifice and hope, not as a perfect human being, in mind or body.
As Morris Friedell and I said at the National Alzheimer’s Conference this year, the toxic lie of dementia is that the “mind is absent and the body is an empty shell”. This medical model silences the voice of people with dementia, and denies us our spiritual growth amongst you.
Christine Jonas-Simpson has said (she’s an RN, Ph.D. member of DASN), “It is our values and beliefs about human beings that guide our health care practices, which either silence or give voice to the meanings and concerns of persons living with dementia.”
I believe that I am much more than just my brain structure and function, which is declining daily. My creation in the divine image is as a soul capable of love, sacrifice and hope, not as a perfect human being, in mind or body.
I want you to relate to me in that way, seeing me as God sees me.
I am confident that even if the continuing damage to my temporal lobe might diminish the intensity of my God-experience, there will be other ways in which I can maintain my relationship with God.

7. I believe ...
The Christian creeds and confessions start “I believe”, not “I remember.”
“As I unfold before God, as this disease unwraps me, I can feel safe as each layer is gently opened out.”
God’s everlasting arms will be beneath me, upholding me.
David Keck reflected on the importance of the memory of God’s past deeds to the Israelites, and yet how Christian confessions and creeds start with the words “I believe” not “I remember”.
Will I know God if I can no longer remember? In my book I write “As I unfold before God, as this disease unwraps me, opens up the treasures of what lies within my multi-fold personality, I can feel safe as each layer is gently opened out. God’s everlasting arms will be beneath me, upholding me.”
I will trust in God, who will hold me safe in his memory, until that glorious day of Resurrection, when each facet of my personality can be expressed to the full.
Indeed this was Reverend Robert Davies experience as he declined with Alzheimer's Disease and began to struggle with bible reading, prayer and any feeling of God’s presence.
He heard Christ say “stop your struggling. It is all right. I will hold you. Lie back in your Shepherd's arms and take my peace”.

8. We are reflected in others ...
In the family of God, the body of Christi, we are what others remember of us.
“Jesus, remember me when you come into your kingdom.”
I will need you to be the Christ-light for me, to affirm my identity and walk alongside me.
As we persons with dementia lose our memory of who we are, we become reflected in others. In the family of God, the body of Christ, we are what others remember of us.
“Jesus, remember me when you come into your kingdom”.
I will need you to be the Christ-light for me, to affirm my identity and walk alongside me. I may not be able to affirm you, to remember who you are or whether you visited me.
But you have brought Christ to me.
If I enjoy your visit, why must I remember it? Why must I remember who you are? Is this just to satisfy your OWN need for identity?
So please allow Christ to work through you. Let me live in the present. If I forget a pleasant memory, it does not mean it was not important for me.
Never let it be that that I should say “My God, My God, why have you forsaken me?”

9. What about whether I can be in communion with you?
“Do this in remembrance of me” - an action, not a cognition, a memory, or an understanding.
I am part of the body of Christ and of all its acts of remembrance.
The Holy Spirit is within me, despite my diseased brain, and helps me in my weakness “with groans that words cannot express.”
What about whether I can be in communion with you? Is it my mind or my soul that is important in this context? But Jesus said “Do this in remembrance of me”. This implies an action, not a cognition, a memory, or an understanding. Through this action I can participate in a communal remembrance of how we all share in Christ’s body.
My mind, my cognitive function, my actual memory of the scripture, is not what is asked of me but an act of faith. An act of sharing in a sacrament.
The sacrament is an “effectual sign of grace by which he works invisibly in us”. Why should a lack of memory or of understanding deny me this sign?
Through the Holy Spirit I am part of the body of Christ and can partake in all acts of remembrance - despite my failing memory - and of worship - despite my failing understanding.
The Holy Spirit is within me, and does not leave because my brain is diseased. The Spirit helps me in my weakness and intercedes for me “with groans that words cannot express.”

10. I need to seek emotional healing
… as this disease will increasingly challenge all my relationships.
Within the body of Christ these are “oiled” by the Holy Spirit, but I must do what I can while I can.
As the disease progresses, “it’s the work done by others which becomes crucial.”
I need to seek emotional healing early on in this disease process, as this disease will increasingly challenge all my relationships.
Emotional healing is so important in our spiritual growth and development, as well as for our bodily well-being.
My relationships within the body of Christ are “oiled” by the Holy Spirit, but I must do what I can while I can.
As time passes, I will need others to understand me, to understand that my odd behaviour, my lack of social graces, my lack of resources to offer in friendship, do not stem from the soul that lies within me. Rather they are simply the product of my diseased brain.
Even later on, as David Keck says, I will need others to connect with me, to be Christ to me. “It’s the work done by others which becomes crucial”.
You will need to be able to see through my confusion to relate to my soul, my spirit, and see me as God sees me, as his child.

11. I need to seek spiritual healing
… for this is eternal.
As I travel towards the dissolution of my self, my relationship with God needs increasing support from you, my other in the body of Christ.
The Holy Spirit connects us - our souls, our spirits - not our minds or brains.
I need to seek spiritual healing, for this is eternal and goes far beyond this daily struggle for words, to control my emotions, and to overcome tiredness.
As I travel towards the dissolution of my self, my personality, my very “essence”, my relationship with God needs increasing support from you, my other in the body of Christ.
Don’t abandon me at any stage, for the Holy Spirit connects us. It links our souls, our spirits - not our minds or brains.
I need you to minister to me, to sing with me, pray with me, to be my memory for me.
The liturgy, familiar hymns and choruses, the Lord’s Prayer - these are ways in which you can help me join with you in our walk with God.
Never dismiss me because I don’t understand or I get agitated or whatever. Tap into the rich resources of the Holy Spirit within you and remember, you are ministering to my spirit, not my mind.

12. Who I will I be when I die?
My soul will always be me, even through the ravages of dementia.
It is given life and meaning in Christian community.
You play a vital role in connecting with me at this eternal level.
In my book I questioned who I would be when I die with dementia, but now I realise that I will still be me, my eternal self which is my soul.
My soul is me, and will always be me.
Even through the ravages of dementia, my soul will remain intact and continue to be the primary way in which God works within me. I can survive this disease with dignity, confident that God sees my soul - the true me.
He speaks within my soul which is given life and meaning in my Christian community. You play a vital role in relating to the soul within me, connecting at this eternal level. Sing alongside me, touch me, pray with me, reassure me of your presence, and through you of Christ's presence.
Be creative and trust in God to help you bring his love to me. Identify where I find meaning in life, to discover and enrich my spirituality. Through this I can find spiritual healing and transcend my sense of loss and fear.

13. My journey is a path of survival with dignity...
of making meaning in life... and
of discovering the glory of God within me.
“We are born to make manifest the glory of God that is within us … as we let our own light shine, we … give other people the permission to do the same.”
My journey along the path of dementia is one of survival with dignity. I refuse to be a victim, to succumb to the lie of dementia, that as my cognition fades, so too must my spirituality.
I will trust in the Holy Spirit within me, and the fellowship of the body of Christ around me, to help me as I make this journey.
My soul remains my mainstay, as I travel this path of making meaning in life, and of discovering the glory of God within me.
As a person with dementia, I can relate to the words used by Nelson Mandela in his inaugural speech, “We are born to make manifest the glory of God that is within us … as we let our own light shine, we … give other people the permission to do the same. As we are liberated from our own fear, our presence automatically liberates others ”
By rejecting the lie of dementia, and focussing on my soul rather than my mind, I can be free of fear of loss of self, and in so doing can also help you to lose your fear that you are losing me.

14. I can feel confident to believe
“I may make all things well and I can make all things well, and I shall make all things well; and you will see for yourself that every kind of thing will be well.”
I know that as this disease progresses, I can live in the present, as Jesus lived in the present.
I’ll live for each day, not worrying about tomorrow, nor indeed about yesterday as my memories fade.
With you walking alongside me as I walk this path with Christ, I can feel confident to believe in Julian of Norwich’s uplifting words that she heard God say to her:
“I may make all things well and I can make all things well, and I shall make all things well; and you will see for yourself that every kind of thing will be well.”