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In a Strange Land…People with Dementia and the Local Church: a guide and encouragement for ministry – Malcolm Goldsmith

July 31, 2018

There’s an estimate that by 2050, over 13 million Americans will be living with Alzheimer’s disease (AD), the most commonly diagnosed form of dementia. Many other Americans will have different dementia diagnoses (e.g., vascular dementia, Lewy Body Disease, fronto-temporal dementia and mixed forms of these and other types that can co-occur with AD). Those interested in estimating the number of persons in their counties who may have AD can use 2010 US Census data and do some simple math using findings from a study by Hebert et al. (2013). About 4% of persons age 20-64 may have diagnosable AD, some with the inheritable young onset type which begins when people are in their 30s and 40s, and some with the early onset type which starts in the 50s and 60s. Even more may be living with presymptomatic AD, meaning that changes occurring in the brain have not yet been expressed symptomatically. (This is currently a major focus of biomedical research aimed at finding a cure or at least a way of preventing symptoms.) About 13% of persons age 65-74 fall into the category of having AD; 44% of persons age 75-84 may have AD and among those 85 and older, Hebert et al. (2013) state that 38% have AD.

It took a long while for it to dawn on me when an old and respected, wise, friend started to repeat himself just what was going on.

This book includes issues affecting LGBT people.

My local church has started a monthly service for people with dementia.

However, we have had two people who did jobs for us and whom we have ‘let go’ – the author would say that we were communicating to them that the no longer mattered. Maybe we should have let them continue but supervise them. But we don’t have the man/woman power. Maybe we should change our priorities.

Because no cure or even effective long-term treatment exists, and none is expected for at least a decade or more, communities—including some faith communities—are recognizing the need to address a condition that causes painful social exclusion of persons with the diagnosis and their care partners. This exclusion exacerbates the cognitive challenges experienced by people with dementia  and can produce depression and anxiety in care partners. If we truly are committed to good quality of life of our family members, friends, and neighbours living with dementia, then we must make our communities more welcoming and inclusive.

The author is an Anglican priest with many years’ experience in pastoral ministry in this area. He paints a realistic and forthright picture of the problems of dementia, and talks straightforwardly about the difficulties and opportunities of reaching out through visiting and ‘alongside’ ministries to both sufferers from dementia and their carers. He is a passionate advocate of the personhood of people with dementia, and feels strongly that the church should be a community of ‘loving defiance’ to the values of the world. There are many more questions than answers, which is the nature of things and not a defect of the book.

(He also wrote a book on MBTI which I have used much over the years.)

There are four sections to the book. Part one deals with the basic principles that the author wants to stress.

He believes that the person with dementia remains a person until the point of death. Carers have to develop their personal resources to treat them as a person. He believes that God is the umbilical cord which sustains every human being. So, God is there when all that seems left of a person is an empty shell.

He believes that the time has come for churches to be more accessible to people with dementia.

Part two gives a useful presentation of current research about dementia and recommends books for further reading.

The author is anxious to point out that everyone is different and so the patterns which are given for the progress of dementia are not followed by every person with dementia. Nor are some of the activities he suggests suitable for all people all of the time. He gives accounts of the experience of dementia from the perspective of those with dementia and their families. He deals with memory, wandering, challenging behaviour, grief, depression. In this section he makes suggestions for visiting a person with dementia. He makes points which are relevant for any visit to someone who is old and/or ill. Prepare for your visit so that you give adequate time to the person you are visiting. Give the person time to register that someone has arrived. Introduce yourself. Do not rush a person with dementia. Allow the person time to process what you have said. If you start a conversation you must have time to let it develop. Be alert to how the person is feeling. They may be tired or not feeling like communicating. This may be different on a different day. Try to sit or stand at the same level as they are. Speak slowly and simply but do not speak down to them. People with dementia are adults and should be treated as such. Do not be afraid of pauses or silence.

Goldsmith says that one of the saddest consequences of people having dementia is that people so rapidly forget or ignore what that person has done or said or achieved. There is great value in building up a life story with photos and captions. He also suggests the use of photographs to make up a scrapbook or a memory box holding things that will evoke memories. It could be a stone from the garden or a theatre programme, or a button from a favourite dress.

 

In part three Goldsmith deals with frequently asked questions in relation to people’s faith. Why should this happen to me? Is it a punishment from God? What will happen to my faith? What about the faith of the care-givers? To these he gives positive, practical and supportive answers in the form of a discussion of the issues. He also gives examples of how people have answered these questions. An American nun remarked to her doctor, ‘Dr. Snowdon, do you know what my worst fear was?’. . ‘That I was going to forget Jesus,’ she said. ‘I finally realised that I may not remember Him, but that He will remember me.’

The fourth part of the book is entitled ‘Theological Reflection’. Here Goldsmith returns to the theme of exile but also looks at the passion narratives which deal with unmerited suffering. On p. 304 he says: Nothing that I write can take away the pain and sadness associated with dementia. Good dementia care can alleviate some of the suffering and share some of the burden. . . But there is no escaping the hard reality that this is a progressive illness that will gradually make normal communication more and more difficult. . .But the author believes that there is hope. Hope in increased medical understanding of the problem, in developing new treatments, in a greater understanding of care. Hope in a greater general understanding that will help us all in our communication with those with dementia

The Alzheimer’s Society lists 10 key areas for communities to address if they are attempting to become dementia friendly. None relate specifically to faith communities, but we believe that all can be useful to congregations striving to be dementia friendly and to provide leadership to their communities on new ways of providing hospitality and inclusion to persons living with dementia.

Involvement of people with dementia. The disability rights movement has long embraced the slogan “Nothing about us without us.” Congregations seeking to become dementia-friendly should always insure that people with this diagnosis and their care partners are included in discussions of how to achieve that goal.

Challenge stigma and build understanding. Congregations have many forums in which they can do this: through worship and preaching, educational programs for all ages, and community programs.

Accessible community activities. Is there anything structural or programmatic about the church that excludes persons with dementia, especially those who are less mobile? Can they hear and see when they attend worship and other church activities? Because most persons with dementia are 65 and older, what congregations do to improve accessibility for elders should benefit those with dementia.

Acknowledge potential. Persons with dementia can make positive contributions to their faith communities. Certain adaptations may be needed. For example, an individual might be able to read Scripture during worship if an assistant points to the lines.

Ensure an early diagnosis. Countries around the world are emphasizing the importance of early diagnosis but this can only be beneficial if there are accessible, appropriate programs and support services in place. Faith communities can offer reassurance in the face of people’s fears of rejection over a dementia diagnosis and they can advocate for better, more compassionate approaches to diagnosis and follow-up care.

Practical support to enable engagement in community life. This kind of support benefits both the person with dementia and the care partner. For example, through congregational befriending programs, trained volunteers can take people with dementia to events in the congregation and the wider community.

Community-based solutions. The Alzheimer’s Society frames this key area in terms of supporting people with dementia living in environments ranging from private homes to locked memory care facilities. An example of a faith community-based approach to promoting mental and physical well-being is the parish nurse.

Consistent and reliable travel options. Many congregations face the challenges arising when people can no longer drive and public transportation is unavailable. Safe, reliable, respectful options are needed.

Easy-to-navigate environments. Are bathrooms accessible? Can older people get to fellowship halls located below the sanctuary? Is there a place where people can be safely dropped off near the entrance of the church? Are walks kept clear of ice? Can people with walkers and wheelchairs navigate to find comfortable seats in the sanctuary?

Respectful and responsive businesses and services. The Purple Angel program is an international effort to train people working in retail stores, restaurants, and public venues in offering hospitality to people with memory loss and confusion. Churches can display Purple Angel decals indicating that their staff and members are “dementia-aware” and they can encourage others to receive the brief training to do likewise.

In Jesus’ time, personhood was generally defined in terms of corporal being—the body was the person—which is why leprosy was the most dreaded of diseases. Our own era is sometimes described as “hypercognitive” (Post, 1995) because personhood is so strongly associated with the ability to think logically and exercise autonomy. This explains why elders fear dementia more than cancer or heart disease.

Congregations should look to scripture and Christian tradition to expose the inadequacy of these definitions of personhood. We might begin with the Holy Trinity: Christians believe that God is defined by the internal relationship between the persons of the Father, Son, and Holy Spirit. We do not understand God as a corporal body: “No one has seen God” (John 1:18). Nor can we comprehend the mind of God in terms of human cognition: “Even so the thoughts of God no one knows…” I Cor. 2:11). We understand God through relationships—our relationship with the God who loves us perfectly no matter what our condition or circumstances, and God’s internal relationship expressed as Holy Trinity.

Fourteenth century mystic Meister Eckhardt, in speaking of the Trinity, wrote “when the Father laughs to the Son and the Son laughs back to the Father, that laughter gives pleasure, that pleasure gives joy, that joy gives love…” Laughter, pleasure, joy and love: these are the expressions of the relationships, human and divine, which define our personhood. In its course, dementia may take a toll on memory and cognitive ability, but it cannot take away our relationships with God, family and friends. There can still be laughter, pleasure and joy, and love can still be both given and received. A person with dementia remains fully a person, and can continue to be engaged with the life of the faith community.

Older persons in general are too often reduced to caricatures of personhood by our society—the “cranky old coot,” the “sweet old lady.” Congregations are also guilty of describing their older members in reductionist language—not “our cherished members residing in long-term care facilities,” but “our shut-ins.” If dementia becomes a part of the journey of aging, a layer of stigma is added and our language becomes even more dismissive: “he’s just an empty shell now.” Too often these members of the faith community are treated as no longer worthy of our time and attention. They might be remembered in a generic prayer, or even receive an occasional bouquet of leftover altar flowers and a cursory visit. However, where else but in congregations can people learn how to be present to them as friends, sharing laughter, pleasure, joy and love? Theologian Stanley Hauerwas has taught us that congregations should function as schools for friendship, including friendship with persons with dementia

Given the demographics of aging in our society, more and more friends will be making the journey of dementia. As persons of faith, we need not have them to make that journey alone. The person with dementia is a beloved child of God and a member of our community. We need to include them in our common life—worship, mission and fellowship—to the fullest extent possible. We need to support our members caring for someone with dementia, living Paul’s calling to “bear one another’s burdens (Galatians 6:2).” We must be a strong moral voice in a society that stigmatizes dementia and fears aging. We must affirm, and help create, the goodness of life in all circumstances.

Quotations:

In 587 BC Jerusalem was attacked. The Temple was destroyed and the Hebrew people were taken into exile in Babylon. From a time of what appeared to be disaster and despair new insights into the nature of God emerged and new experiences of

God’s love and care became clear to them. I want to suggest that our experiences of dementia may not perhaps, be all that dissimilar. For the person with dementia and for their families and carers there is a breaking down of what has been known and trusted and accepted over the years. A future is emerging which can be very frightening. A diagnosis of dementia can be experienced as an invasion of all that has been held dear, a breaking down of, or a threat to, relationships, understanding, plans and hopes, even of Hope itself. It is very often an experience of devastation, sometimes coming very quickly, or sometimes, for other people, coming quite gradually – but still coming, whether slowly or quickly. It is a strange land which is beckoning, and will it be possible to sing the Lord’s song within it? The answer to that question must be – Yes, it will be possible, for many people for much of the time; the challenge is to help enable that to be the case. A further challenge is then to enable it tobe possible for all people for most, or all of the time.

Having Alzheimer’s disease made me face ultimate realities, not my bank account. My money, job and other parts of life were trivial issues that restricted my growth, my spiritual growth. Alzheimer’s disease transferred me from what I call the trivial plane to the spiritual or personal plane. I had to face the absolute horror of the A word, and I began a dialogue with my existence, a dialogue with my life and my death.

The fact that death is the final stage should not be interpreted as being the ultimate failure or as a sentence waiting to be pronounced. We all have to die and the challenge within dementia care is to work towards making the time between diagnosis and death as creative and fulfilling as possible. Although dementia is a devastating disability, it is not always and irrevocably a journey through hell and it is important that we find ways of supporting and encouraging people with dementia and their carers so that they can discover and enjoy a richness in life despite the limitations imposed by such an illness.

This can lead us once again into a reflection on the experience of the Exile in the Old Testament and to look once again at the significance of the road to crucifixion. There is a great deal within our tradition which can help us face up to an uncertain future. There is much in our tradition which grapples with issues of suffering and the struggle between hope and despair. The churches have much to contribute to the world of dementia care and dementia experience, but they need to be sensitive, compassionate and humble in their engagement.

‘I refuse to be a victim, to succumb to the lie of dementia, that as my cognition fades, so 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.’

We therefore need a theology of patience, of suffering and of “failure”. We need an open-ended, non-judgmental and merciful theology. Not a theology of certainty, but of tentative exploration, for we are confronted by a strange and foreign world, and it really does challenge us as to whether it is possible to sing the Lord’s song in it.

Dare I name it a fellowship of the foolish? For foolish we most certainly will appear in a society obsessed by the quantifiable, by the immediate, by productivity and usefulness, by competition and profit, by individualism and loss of community and where the bottom line really is the bottom line. In that world it is accounted madness to expend precious resources on those who in economic terms are useless. There is, however, another larger world represented by a foolish, passionately extravagant woman pouring her alabaster jar of costly, perfumed oil over the head and feet of a man named Jesus — Tama a to Atua — Son of God. This kind of costly, extravagant care bears within it a power to heal our own human woundedness. In our hearts we know it, but we need each other’s courage and a certain authentic and holy innocence for such foolishness. Eileen Shamy

I am not persuaded by David Keck’s assertion (Keck 1996) that “Alzheimer’s Disease confronts us starkly with the reality of human sin     by original sin I mean that none of us had a choice in being born into a deicidal humanity so wretched as to require the cross for its salvation.” In my experience Alzheimer’s Disease confronts us starkly with the reality of human love and the unconditional love and acceptance of God.

I am reminded of an old Chassidic story about a young boy who attended synagogue with his father. Bored and feeling left out, he began to play his flute and the more he played the less aware of the service he became. Eventually he finished playing with a very loud phrase. His father was overwhelmed by embarrassment, seeing all the congregation looking his way, and he began to apologise profusely. The Rabbi stopped him in his tracks and thanked him for the gift of his son. ‘I know that we were all praying, but somehow our prayers lacked immediacy. Only now, carried along by your son’s music are our prayers accepted by God’.

When people disturb our worship do we believe that they are disturbing God? If not, then surely we can live with it.

There is often a considerable sense of relief when an elderly person with dementia eventually dies. Relief for the person, who has been unable to lead a normal life, alongside the members of their family and community probably for quite a number of years. Also a sense of relief for the carers who have watched the consequences of this illness with varying degrees of incomprehension and a sense of inadequacy and anxiety, again for quite a long time.

Sometimes the view is expressed that the actual person died a long time ago and all that has died now is the shell which has remained. I believe that such a line of thought should be resisted. The person has not died a year or more earlier, they have been stricken by a pernicious illness and they have almost certainly lost all (which is unlikely) or almost all, of their ability to communicate, but they had not died, and I believe that we dishonour the person to suggest that they had. They have had to suffer enough without prematurely being regarded as deceased.

So is there any other way of thinking about them, any other image that we can use which can acknowledge the reality of the distress and sense of loss both of the person with dementia and also of their carers? Whilst it is not easy to come up with anything which seems appropriate (which is why the view of ‘dying earlier’ is so often used), I think that it is worth exploring the idea of journeying.

The person with dementia has, over a period of time, moved into an area of experience which is to a very large degree, beyond our understanding. They have ‘moved on’ into a state of living that we can only observe and imagine, but not experience.

Working with people with dementia really brings home to us the nature of our calling. We have offered ourselves and have tried to mean it when we have said that we would like to go anywhere and do anything in the service of the Lord. Perhaps the sincerity of that act of commitment is now being tested. This is hard work and there are few visible and tangible rewards. Except, that is, the sense of wonder and honour that we are being entrusted with the task of communicating God’s love to these, the ‘least of my brethren’. There really is a sense of this treasure being contained in earthen vessels, and it is part of our privilege and calling to be sharing in this work.

There is much Biblical material on journeying. Some journeys are voluntary and are taken in faith; some are involuntary and may or may not be accompanied by faith. Nonetheless, the idea of moving from where we are into a different place is very much part of the religious tradition that we inherit. What we need assurance about, is whether, in such journeying, we move beyond the scope of God’s presence and love. Psalm 139, and many other passages, think otherwise. Paul’s great acclamation in Romans is surely apposite to the death of a person with dementia:

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril or sword? As it is written, ‘For thy sake we are killed all the day long; we are accounted as sheep for the slaughter’. Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.

There can be a great vacuum in the lives of carers after such a death, if they have been in the habit of visiting on a regular basis. They may well have fallen out of the habit of attending social events and having days out and holidays. Here again, there is a great opportunity for faith communities to offer friendship and stimulation, activity and, above all, hope.

With an increasing number of people receiving an early diagnosis, there is a likelihood that, as the illness progresses, some of them may commit suicide. Our pastoral response in such situation must be especially sensitive and compassionate. For some people, this will have been what they consider to be a final act of love towards their families, wanting to spare them from what they see as the burdens of care. It may also have been an act of considerable courage displaying a determination to exercise some form of autonomy over their lives while they still had the mental capacity to do so.

I have outlined elsewhere (Goldsmith1999b) how my involvement with dementia caused me to reconsider many of my theological convictions until I could live with what I considered to be the `good news’ for people with dementia. This challenges the `gospel’ which I believe many of our churches habitually and unreflectingly preach Sunday by Sunday, the gospel which had been at the heart of my life for so many years.

I am sensing that in coming to grips with the illnesses which cause dementia and in endeavouring to stand alongside those who have them, and in recognising the journey that they (and their carers) are having to make, we are once again being challenged to find a word of hope for the powerless. Theology is being hammered out on the anvil of experience, and the churches are being asked if they have any ‘Good News’ any Gospel for these, ‘the least of my brethren’.

In a world in which ‘success’ is measured by numbers, by growth, by finance and by power — and it is a world which is not unknown to our churches, for most of them share in it to some degree or other — the experience of dementia represents just about everything that could be described as ‘unsuccessful’. We therefore need a theology of patience, of suffering and of ‘failure’. We need an open-ended, non judgmental and merciful theology. Not a theology of certainty, but of tentative exploration, for we are confronted by a strange and foreign world, and it really does challenge us as to whether it is possible to sing the Lord’s song in it.

What sort of good news is it that requires us to take the initiative? What sort of Gospel is it that expects us to earn our salvation through acts of belief — for surely the word `earn’ is appropriate if our salvation ultimately depends upon an act that we take.

But if God’s gift and love extends to all, irrespective of their understanding or their memory; irrespective of their worthiness or their faithfulness — then we have quite a Gospel on our hands! But beware: it is I a Gospel that offends all those who regard their own profession of faith as somehow being an integral part of that salvation story. It offends those who like to draw circles that allow some people to be on the inside and regard others as being on the outside. It offends those who feel that there are some people who have created a great gulf between themselves and God which will only be breached by some action on the part of the estranged . . . but what if that action has already been taken? What if one who has been estranged, has stooped down to enfold the whole of humanity, and what if already the outcast and the marginalised, the confused and the bewildered, the healthy and the sick, the righteous and the unrighteous, the repentant and the unrepentant — what if they have all been received and welcomed, loved and forgiven by a gracious God who permits no barriers of ignorance, sinfulness or sickness to deflect his loving purposes, now that would be good news!

And isn’t this precisely the challenge that dementia raises? For I firmly believe that each and every person with dementia is loved and accepted and enfolded by God; not because of their faithfulness but because of God’s faithfulness.

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