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Dementia and fullness of life

​On the face of it, dementia seems to deny the promise of life in all its fullness made by Jesus Christ. The downward spiral into death with advanced dementia that many elderly people experience is a long hard journey, a slow dying, that confounds hopes for a rich full retirement and can challenge faith to its core. This essay seeks to reflect theologically on dementia in relation to the Christian affirmation of fullness of life in Christ. The most well-known of Jesus’ teachings on the fullness of life is in John chapter 10; this essay will explore the Johannine parable of the Good Shepherd as the context for this teaching and relate it to dementia.
 
When I was a young person, John 10:10 was my favourite verse. Jesus’ words, “I have come in order that you might have life—life in all its fullness” (Good News Bible, 1976) expressed a vision for my life and the place of faith in it. In Christ’s teaching on the fullness of life, and in the way this is expressed through the Gospels and developed through the Epistles, I found hope for a fully multi-dimensional way of living that incorporated both a wide breadth of human experience as well as Spirit life. This inspired me as a young woman and contributed to my journey into ministry.[1] During my decade in pastoral ministry I have cared for several people who have been affected by dementia. Each of them, together with their spouse, struggled with the loss of fullness of life that dementia brings. It forced them, and me in my role as pastor, to redefine the promise of Christ for life in all its fullness.
 
Dementia affects every aspect of life including faith and spirituality as well as participation in community.  The term ‘dementia’ refers to syndromes involving memory loss which cause decline in a person’s ability to function and communicate. A person with dementia may have increasing difficulty naming objects, thinking or planning, and struggle with motor skills.[2] There are various diagnoses of dementia, of which Alzheimers Disease is the most common; all are diseases of the brain causing cognitive decline, which are increasingly common with advanced age. Research by Deloitte and Alzheimers New Zealand found that 20% of New Zealanders aged 85-89 have a diagnosis of demenia, and 38% of people aged over 90.[3]
 
Dementia is a dreaded disease precisely because it diminishes capacity to live life to the full. “People live longer, due in part to advances in medical technology, but are not necessarily living better.”[4] How, then, are we to understand the promise of Jesus for fullness of life? I read this as the promise that following Christ through the years will lead to a richness of years, a wealth of experiences, purpose and contribution, underpinned by a spiritual dimension. Does this still apply to people with dementia? If so, how? Faith does not protect Christian people from getting dementia, but how does it shape our understanding and response? To begin to answer these questions I turn now to John chapter 10 to understand more of the context and meaning of Jesus’ words.
 
John 10:1-21 is a complex exploration of the identity of Christ through the multi-faceted metaphor of shepherding. Aspects of this metaphor include the relationship between a shepherd and his sheep, the sheep-fold where sheep are kept overnight, and the threats to the sheep while in the sheep-fold, notably thieves and wolves. The chapter includes two “I am” statements by Jesus: “I am the gate” (10:7) and “I am the good shepherd” (10:11). Embedded in this ‘Johannine parable’ is the summary statement of Jesus’ self-identity: “I
I came that they may have life, and have it abundantly” (10:10b).[5]
 
As well as teaching by Jesus the chapter also includes describes the confusion of those who were hearing, which increases in intensity leading to conflict (10:19-21) then violence (10:31 and 39). My observation is that Christians tend to read Jesus’ shepherd parables as gentle, hopeful and comforting. This does not appear to be the main response from Jesus’ original listeners.
 
There was nothing new in Jesus’ day about using the shepherd as a metaphor for people in leadership, or for God.[6] In the Hebrew scriptures God is often pictured as the shepherd, and the people of Israel as his flock, most famously Psalm 23:1, but also several other Psalms (e.g. Ps 79:13). Prophets, especially Ezekiel, used the shepherd metaphor for a critique of current Jewish leadership and the hope for a coming Messiah (e.g. Ezekiel 34:23).
 
As Jesus applied this metaphor to himself he emphasised three aspects. Each of these reveals a dimension of ‘fullness of life’, and for each I will discuss potential points of connection with the experience of dementia. First, Jesus draws attention to the intimate relationship between a shepherd and his sheep. He describes how a small flock of sheep know the voice of their shepherd and follow (10:3-5). This is a picture of life in fullness, as the sheep are led in safety to places of water and food and into a place of safety through the night; being ‘saved’ is summarised as the ability to “come in and go out” (10:9). Their recognition of the voice of the shepherd is key.
 
Those of us with a ‘normal’ healthy mind are able to have a conscious self-reflective experience of hearing the voice of Jesus. Christian practices such as prayer, worship or reading scripture can facilitate this aspect of a full life of faith with a lived sense of relationship with Jesus.[7] Demenia, however, breaks down a person’s ability to recognise others. People with dementia express feeling lost in themselves, confused as to who they are, in a sea of voices which they no longer can identify. Can they still recognise the voice of the shepherd?
 
The theological question in relation to the shepherd metaphor is whether our relationship of faith depends on our ability to be aware of it; what happens when a sheep stops recognising the voice of the shepherd? The answer embedded in the parable is that the shepherd will never stop recognising the sheep. A sheep may go astray and get lost, but the Good Shepherd will find it and bring it back (Matthew 18:12-13). The relationship of belonging is sustained from God’s side, not ours.[8] Human cognitive ability to be aware of this relationship is certainly generative and a blessing but it is not required for salvation.[9]
 
A second feature of John 10:1-21 is that Jesus places this salvific relationship between sheep and shepherd in a context of threat. This is contested space. Two threats are mentioned in the parable: thieves who could climb into the sheepfold and steal a sheep (dead or alive), and wolves who could maraud and kill and cause panic. In terms of fullness of life, it is clear that Jesus did not expect ‘life in all its fullness’ to be free from trouble, threat or attack.
 
It is the luxury of the wealthy to expect a happy untroubled life; a sense of entitlement to wellbeing has permeated western Christianity and blinded us to the darker sides of gospel living.[10] The metaphoric threats resonate easily with the experience of dementia. As my parishioners described to me their daily struggles of losing their beloved spouse to dementia, they described the experience of something entering their home, marriage, even entering into the innermost places of the mind, to “steal and kill and destroy” (John 10:10a); “the wolf snatches them and scatters them” (10:12b).
 
For people living with dementia the pastoral question is, can we live with the thief and the wolf? In the difficult process of coming to terms with dementia, in a sense a family has to pull up a chair for the thief, and put out a bowl for the wolf. They move in, and they are not comfortable house guests. As a pastor I have seen people fighting against the dementia (e.g. a woman continually reminding her husband that she was not his mother!) and this being draining and ultimately unhelpful. Accepting and adjusting to declining function is important, but not easy.
 
The major theolological question is, do the thief and the wolf win out over the shepherd when a person dies with dementia, seemingly utterly lost to themselves and others? The lordship of Jesus appears to be negated as his promise of fullness of life appears to be broken.
 
Part of the answer lies in how we understand death. Dementia is a slow dying. People talk about losing their spouse or their parent slowly, years before the physical death.[11] Dementia is a long process of grief. My friend Alan Simson wrote a funeral liturgy including the statement that death may “come slowly and with leaden feet”; this beautifully expresses the process of dementia.[12] Does death itself deny the promises and lordship of Christ? Can people experience fullness of life paradoxically in the face of death, even death which is slow in coming? Perhaps only those who have lived this can answer.
 
The answer that Jesus gives is the third aspect of the parable of John 10. Jesus points to the cross through his own sacrificial death; “I lay down my life for the sheep.” (10:14). Being a shepherd was a hard life. Little sleep was had, and little pay; no time off. The shepherd used his own body to protect his flock; lying down in the gap of the sheep fold to literally be the gate. Despite his weapons and vigilance a shepherd could be killed, by either thieves or wolves. Jesus’ words in 10:17-18 echo the places in the synoptic gospels where Jesus predicts his suffering and death (e.g. Mark 8:31). Jesus knew that his path would lead to the cross. The Christian faith declares that fullness of life is only possible because of Christ followed that path and entered fully into death. The gospel assurance of resurrection and life everlasting can never gloss over the significance of Jesus willingly laying down his life.
 
The significance for dementia is huge. No other human experience so poignantly enters Jesus’ invitation: “whoever wants to save their life will lose it, but whoever loses their life for me will find it.” (Matthew 16:25). Dying with advanced dementia is an ultimate experience of losing one’s life, in every way, mentally, relationally and physically, excrutiatingly slowly. Without Christ this would indeed by a complete denial of hope, a complete loss of fullness of life.
 
We need a robust theology of salvation that encompasses the harshness and darkness of life as well as our hopes for wellness. Life in all its fullness is not necessarily life in all comfort and contentment. Dementia is a ruthless reminder of that. It is a slow dying, a gradual loss of function, identity and relationship. A biblical reflection on Jesus’ teaching on fullness of life reminds us true living, knowing and identity is sustained from God’s side far more than by our individual cognitive ability. Jesus’ parable of the Good Shepherd in John chapter 10 confronts us with the reality of loss and death, and points to the centrality of the cross for Christian faith. In surrender of self we are truly found, through Christ’s sacrifice. I have suggested that the thief and the wolf that Jesus refers to in this parable can be seen as metaphors for dementia, which raises the question of what it takes to live with them, or even welcome them into family life. In the end, our hopes for fullness of life may need to be re-defined. 
 
 
 Bibliography of Works Cited
 
Good News Bible: The Bible in Today's English version. New York: American Bible Society, 1976.
The Holy Bible: New Revised Standard Version. The Division of Christian Education of the National Council of the Churches of Christ in the United States of America, 1989.
 
Barclay, William. The Gospel of John, Volume Two – Chapters 8 to 21, Edinburgh: St Andrew Press, 1975.
Christopher C. H. Cook. “The Lived Experience of Dementia: Developing a Contextual Theology.” Journal of Religion, Spirituality & Aging, 28, 1-2 (2016): 84-97.
Dementia Economic Impact Report 2016. Alzheimers New Zealand and Deloitte, March 2017.
Hudson, Rosalie Evelyn. “God’s Faithfulness and Dementia: Christian Theology in Context.” Journal of Religion, Spirituality & Aging, 28, 1-2 (2016): 50-67.
Holloway, Mark. The Freedom Diaries; God Speaks Back. The Freedom Assignment, 2013.
Post, Stephen. G.. ‘'Is grandma still there?' A pastoral and ethical reflection on the soul and continuing self-identity in deeply forgetful people.’ The Journal of Pastoral Care & Counseling, 70:2 (2016): 148-153.
Wardlaw, Kevin. A. “Hospice chaplains using christian symbols with christian end-stage dementia patients: Toward best practices of spiritual caregiving” Ph.D diss., Claremont School of Theology, 2015.
Weston, Donald E. “Ministry to people with dementia: A simple, scripturally based method for all stages of the disease.” Ph.D diss., Anderson University School of Theology, 2013.


[1] In my work I have gone on to call other people into the fullness of life in Jesus Christ and sought to resource and nurture this in communities of faith through worship, spirituality, pastoral care and mission. This is expressed in my writing on Psalms, including this reflection on Psalm 1 which expresses my vision for fullness of life:
“I live that my life may be
surrounded by love
inspired by truth
sustained by Spirit
bearing fruit season by season
”
Silvia Purdie (http://www.conversations.net.nz/psalm-1-the-two-ways.html)
 

[2] Donald E. Weston, “Ministry to people with dementia: A simple, scripturally based method for all stages of the disease” (Ph.D diss., Anderson University School of Theology, 2013).

[3] Table 3.1, ‘New Zealand prevalence rate estimates, 2016’, Dementia Economic Impact Report 2016 (Alzheimers New Zealand and Deloitte, March 2017: 24)

[4] Weston, “Ministry to people with dementia”, 11.

[5] Bible quotes are taken from the New Revised Standard Version. The Division of Christian Education of the National Council of the Churches of Christ in the United States of America, 1989.

[6] William Barclay. 1975. The Gospel of John, Volume Two – Chapters 8 to 21, Edinburgh: St Andrew Press.

[7] Authors such as Mark Holloway explore the human potential to hear the voice of God in a recognizable way. Holloway, M. 2013. The Freedom Diaries; God Speaks Back. The Freedom Assignment.

[8] This is clearly expressed by Hudson, “Our being known is not dependent even on our awareness of God’s presence. God’s thoughts about us are more important than our thoughts about God. It is God’s remembrance of us that is more important than our remembrance of God. Such knowledge cannot be removed from us. To be known is life giving, regardless of our ability to describe or express such an incontestable reality.” Rosalie Evelyn Hudson, “God’s Faithfulness and Dementia: Christian Theology in Context”, Journal of Religion, Spirituality & Aging, vol. 28, 1-2 (2016): 50-67.

[9] A central concept in Christian theology is that all people are made in the image of God, regardless of individual functioning. Wardlaw explores how the ‘Imago Deo’ of people with dementia can be enhanced by non-cognitive awareness, symbolis and loving community. Kevin A. Wardlaw, “Hospice chaplains using christian symbols with christian end-stage dementia patients: Toward best practices of spiritual caregiving” (Ph.D diss., Claremont School of Theology, 2015).

[10] One question that emerges from this is, why do we expect a good life? Where does our sense of entitlement come from, that dares to assume that faith and living an ethical life will pay out in a long healthy happy life?
 

[11] It is, however, important to not under-value the continuing personhood of a person with dementia. Despite little external communication or functioning, Stephen Post argues that “we should not dismiss the consciousness and awareness of an individual with dementia as somehow less significant than that of someone who is more lucid of mind.” (154). His perspective on a ‘non-material’ location for memory and identify is fascinating, opening the possibility that these are not only a product of our physical brains. “'Is grandma still there?' A pastoral and ethical reflection on the soul and continuing self-identity in deeply forgetful people.” The Journal of Pastoral Care & Counseling, 70:2 (2016): 148-153.

[12] The full prayer: ‘In the presence of death’, by Alan Simson, personal correspondence.
“In the presence of death we stand awkward and ill at ease;
for death is a well known stranger
whom we recognise but do not want to know
But death is not a thing in itself,
but a stage in the journey of life,
through which we all must pass.
It may come swiftly and unawares,
or slowly and with leaden feet
But death comes to all who live,
and in so doing heightens our understanding
of the one we have known and now lost.”
 
www.conversations.net.nz
Written by Silvia Purdie 

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