You can read a report of the presentation and discussion here.
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Jesus’ love in the midst of age and dementia
A practical Christian ministry with older people and people living with dementia
Led by the Reverend Ben Boland 17 October 2023
The PowerPoint presentation can be viewed here
LinkedIn https://www.linkedin.com/in/rev-ben-boland-b4572a108/?originalSubdomain=au
Ben is a pastor and chaplain working in aged care in Australia. This was our first Conference Call linking with Australia. Much to be learned – and the technology worked.
You can read a report of the presentation and discussion here
Peter’s involvement with the Russian Orthodox Church dates from his student years meeting converts to Orthodoxy attracted by the liturgy of the Church and their shared dream of developing an Orthodox Church appropriate to Britain and Ireland. Peter’s own journey took him to The Holy Land and to experience Orthodox worship there.
But it was not until 1997 that he met Metropolitan Anthony and became a regular member of his congregation. Anthony was by then 83 years old. He was present and spoke at spiritually exhilarating conferences in Oxford. Peter persuaded him to address the British Society of Gerontology annual conference at Bournemouth: Anthony was not sure he could cope with this at his age but agreed. Sally Richards helped by escorting him to the platform and introducing him to the conference. Joanna Walker was in the audience. There had been doubts amongst those responsible for the British Society of Gerontology on the suitability of a clergyman to give the opening address to the secular society. Anthony spoke with clarity and distinction on dying and death: the assembly was enchanted. Feedback demonstrated that this was the highlight of the conference and would be remembered ahead of all other aspects.
These years posed problems for Anthony. He was frailer in his last year, dying of cancer, and wanted to retire, but his Church needed him to continue as their principal priest. Perhaps also he did not want to lose control given the changing situation after increasing Russian immigration to London following the collapse of the Soviet Union. He once apologised to his congregation for becoming too essential to them and standing in the way and blocking their own vision of Christ.
In all his work in England, Anthony had operated in the ways he believed to be right, despite differences from the Church controlled by authorities in the USSR. His Church in Britain remained nominally under the Patriarchs of Moscow, who granted him independence of action.
In the 1990s radical changes led to the collapse of the Soviet Union. Many more Russians came to London (Londongrad Definition of Londongrad | New Word Suggestion | Collins Dictionary) Anthony felt this as a threat to freedom of the kind of Church he had developed: ‘My life’s work is lost’, as the new influx carried with them the customs and regulations of Moscow’s more traditional form of Orthodoxy, from which his local Orthodox Church had begun to diverge. Anthony was not so concerned with politics; he was a man of the people and a preacher. Management was also not one of his strengths. He died before retiring. The last message which Peter heard from him at the Russian Christmas Vigil in January 2003, some moths before his death was: ‘Remain loyal to Christ. Consider what Christ would have done.’
He published his thoughts in many books – some listed at the end of this note. There are records of his teaching and interviews on YouTube.
In his teaching on care of older people, Anthony emphasised our need for retaining relationships especially with the family and also for being accompanied through the process of dying and up to the moment of death. His life experience sensitised him to the effects of trauma and war. There are circumstances where he would say that avoidance is the best strategy. He spoke and wrote about age and dementia.
Peter reflected on the optimism of the 1970s and 1980s when understanding of dementia and related conditions was improving and there were good developments in health and social care and the charitable sector which brought relief and better lives to people with dementia and their families. He contrasted these with recent trends where some of these lessons have been set aside.
Palliative Care was also beginning to be better understood and practised, thanks to the pioneering work of Dame Cicely Saunders. This work continues to spread, largely through charitable organisations and hospices, though Peter shared a personal example where a General Hospital showed the skill and compassion appropriate to need.
Anthony taught about learning towards the end of our lives to be content ‘to be’ rather than to act, and to live into eternity.
We had been treated to an exposition from one who had travelled with Anthony in his faith journey and especially in his later years. We had a close and personal feel for the man, his life’s experience and teaching and spirituality. There were many expressions of thanks and appreciation from the group:
- Thanks for contextualising the messages from Anthony – which we have in summarised form in his 1993 booklet – and brought to life here
- Thanks for the message that we must come to terms with the past – even after people have died to life on earth and can no longer come back to tell us about it
When older Christians are given a chance they will say a lot about their thoughts and feelings about death (little fear) and dying (a lot of worry in anticipation); in practice, churches seem to avoid presentations and discussion of death: ‘Please come again – But do not talk about death or dementia’.
Anthony had respect for local culture and history and his particular interest in the work and teaching of the Londoner William Blake
Thoughts arising – from a minister:
- Notable that his call remained strong throughout his long life
- Noted that his work and beliefs were ecumenical. (It had been mentioned that Anthony liked the Methodists for their cooperative approach and connexion)
- Faith was his watchword: keep the faith; be prepared to be thought bonkers; have the dream; hold the dream and live it
- Care with people who are ill in hospital and elsewhere: the care and healing come from relationship between the caregivers and those in receipt of care
- A parishioner wrote a Psalm when ill and dying: this was shared as a once-viewed version with those attendees who have requested to read it
Some final thoughts
We take note of the importance of forgiveness – for the giver and receiver
We note that Anthony spoke of the onion metaphor for layers of feeling, understanding and belief
We note the need for sensitivity in conversations with people who are ill and dying. Insistence on routine questioning is likely to be distressing. Time together and listening are powerful helps.
We note that healing painful memories in the presence of dementia is very difficult. It requires time, persistence and being there. Even then it may not succeed
We had been part of an extraordinary experience from which more will follow. We thank Peter for his open and generous sharing – and thank everyone for being part of the discussion.
Some references:
Metropolitan Anthony of Sourozh (1993) The Spirituality of Ageing. Christians on Ageing – available via the website
Avril Pyman (2016), Metropolitan of Sourozh: a life
Metropolitan Anthony (2020) Living prayer. A pocket library of spiritual wisdom
Metropolitan Anthony (2009) Coming closer to Christ: Confession and forgiveness
Anthony Bloom (1999) Living prayer
There are many other books on which Peter may advise; there’s also You Tube; and there are many recordings – for example:
(12) Metropolitan Anthony Bloom – Christ Lives In Me – YouTube
Notes prepared by David Jolley
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- Following network audits of current practice, this led to the design of training coursesfor nurses and other healthcare professionals to help them identify spiritual needs and to respond appropriately to them.
- The context discovered was that many young healthcare professionals had scant acquaintance with the concept of spirituality – equating it with ‘religion’, and having no identification of either within their own lives, nor even a vocabulary to address and discuss such matters.
- The demise of religious practice in the UKis exemplified by statistics on baptisms within the Church of England: 67% of all English babies were Christened in 1951. Only 10% in 2016.
- Dealing with such issues within The NHS has been complicated by progressive ‘Political Correctness’, the recognition of Protected Characteristics Protected characteristics | Equality and Human Rights Commission (equalityhumanrights.com), and ‘scare stories’ in the media of consequences for professionals if they discuss spiritual or religious beliefs with patients or families and cause offence.
Countering these discouraging and confusing phenomena, NICE’s approach has been affirmed and amplified by a series of publications, the most recent being The Lancet’s Commission on the Value of Death: Report of the Lancet Commission on the Value of Death: bringing death back into life
There have been statements of variable worth from:
- The GMC: Treatment and care towards the end of life – ethical guidance – GMC (gmc-uk.org)
- The NMC: nursing-standards-briefing.pdf (nmc.org.uk)
- And the RCN: spiritual care | RCNi
What matters to you?
Dame Cicely Saunders introduced us to the concept of Total Pain: Embracing Cicely Saunders’s concept of total pain – PMC (nih.gov) with dimensions physical, psychological, social, and spiritual – i.e. holistic care
What is spirituality? What is religion?
There are many definitions of both, some keeping them apart, others allowing overlap of one sort or another. It is probably best, operationally, to allow whatever definition an individual feels is right for them.
- A key reference: Margaret Holloway 2011: Microsoft Word – 2011-01-24 – FINAL – approved orig from Judith 24 jan.doc (publishing.service.gov.uk)
Spiritual and existential distress may be generated by fear of dying, loss of control, feeling a burden on others and isolation and hopelessness. Symptoms cross physical, social, psychological and spiritual realms. Smith & Jackson 2013
Approaches to dealing with it rely on the strengths and beliefs of the individual (self), and relationships with others, nature and a higher being (God), and seeking self-identity and inner peace.
Although somewhat dated now, Chao, Chan and Yen: The essence of spirituality in terminally ill patients, provides a careful study of findings The essence of spirituality of terminally ill patients – PubMed (nih.gov)
We can help most by listening and walking beside the individual – not leading, but being alongside
- St Benedict: ‘Listen with your heart’ “Listen carefully…and incline the ear of your heart” — Rule of St. Benedict – Word on Fire
We were introduced to the work which Karen has developed and leads from Southport: Spiritual Gates – Opening the Spiritual Gate
- Keys to Opening the Spiritual Gate – Face to Face – Spiritual Gates
- All Courses – Spiritual Gates (openingthespiritualgate.net)
The courses help people to use open questions, silence, reflection, summary and inviting the person to make their own plan. Listening is the key component, with time and searching and reflecting.
Karen also directed us to the Personal Spiritual Reminiscence Box, produced by the Diocese of Wrexham 2015: Reminiscence Box | Diocese of Wrexham (rcdwxm.org.uk)
This was a wonderful presentation – leaving us spellbound, but not silent:
- Awareness that generations have lost the vocabulary for the transcendental, is a reality and shocking.
- There were comments relating to the special needs of people with communication difficulties
- We heard a moving story of changes which occurred within a family consequent upon conversations generated during the time one member was dying of cancer, and the impact of prayers
- We were reminded of the importance of diversity of culture and beliefs in our modern societies. The Southport resources include references to work with people of differing faiths. All Faiths – Spiritual Gates (openingthespiritualgate.net)
- We were reminded to be aware of the lack of uniformity amongst members of staff, for the wishes of the NHS for uniformity – and the need to avoid straying into evangelism within the professional setting.
Review: Participants commented that the presentation and the discussion were stunning, inspirational, helpful and challenging.
Our deepest thanks to Professor Groves and to everyone who shared in the experience
Conference Call 2023^J Helping Professionals in terminal illness spirituality^J June 23.docx
From Psalm 90: ‘So teach us how to number our days, that we can get a heart of wisdom’. We discussed what numbering our days might mean.
Appleton then turns to the stories of Simeon and Anna (Luke 2: 22-38): devoted older people, both with strong faith and special relationships with God.
The insights of Simeon are often rehearsed in the Nunc Dimittis. Appleton recommends it for recitation as ‘a song of gratitude for our past lives and a quiet peaceful trust for what lies ahead.’
‘Lord now lettest thy servant depart in peace…..’
The service and worship of Anna as an old woman have inspired and sustained Anna Chaplaincy: BRF | Leading Christian charity enabling ministry and mission | Anna Chaplaincy
Anna Chaplains are male or female and may be of any adult age, including old age. Their mission is to take notice of the spiritual strengths as well as the needs of old people in churches, and those who are not associated with churches.
Appleton reminds us of St Paul’s observations as an old man: (2 Corinthians 4: 16-18)
‘O we do not lose heart. Though our outer natures are wasting away, our inner nature is being renewed every day. For this slight momentary affliction is preparing us for an eternal glory beyond all comparison, because we look not to things that are seen, but to the things that are unseen; for the things that are seen are transient, but the things which are unseen are eternal.’
Such a powerful and helpful perspective: speaking from Appleton’s position of age in this life equated with frailty and loss of vigour, but referencing a broader spectrum in which this is a short interlude which will be followed by something more marvellous. This seems to be a message which Appleton would share with us all. He shares with us his prayer of thanks and anticipation:
‘I see how your love and goodness have been with me……..Then I have felt your presence near……..Forgive my slowness, my failure in grace, smallness of my love……Accept my heart’s thanks for growing knowledge of you.’
Pain:
The header for this second section in the booklet confirms Appleton’s view, and probably experience, of later life as a period of suffering:
‘In old age there is not only a process of slowing up and a failure of powers but often acute or chronic pain’
We will do more work on the notion of old age as a time to expect and accept loss of competence and relevance
He quotes then from Edith Barfoot: The joyful vocation of suffering. Edith Barfoot lived with pain arising from rheumatoid arthritis for more than 50 years. Her evidence is surely an honest description of her experience and how she dealt with this in prayerful interaction with God. But her experience was exceptional. Hardly a balanced review of the prevalence and significance of pain in late life and how it can be helped, understood by individuals or the generality of old people.
There is no doubt that some of us experience pain in old age, from the various pathologies, particularly of the bones and joints, but also from more sinister and neurological conditions. Prevalence | Background information | Chronic pain | CKS | NICE
Appleton draws attention to St Paul’s writing about his ‘thorn in the flesh’ and his discussion with God about it: 2 Corinthians 12:7-10 New International Version
‘Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. 8 Three times I pleaded with the Lord to take it away from me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.’
This is not to detract from the need to identify the underlying pathologies which are giving rise to pain, and the exhibition of curative or ameliorative treatments, but they give a framework for working with the experience. It is important not to be frozen out of normal activities because of fear of pain. Doing things is almost always therapeutic.
Living with pain is one thing. Elevating life with pain to a condition to be desired because it brings you nearer to God, is not right.
Appleton introduces us to the wonderful Jesuit teacher, biologist and Saint Teilhard de Chardin, and his observations on physical and spiritual suffering and death.
‘O God, grant that I may understand that it is you who are painfully parting the fibres of my being in order to penetrate to the very marrow of my substance and bear me away within Yourself’.
So this relates to the particular situation of pain in association with the end of life. Much can be done to avoid or alleviate pain in terminal illness, and many deaths will occur without pain. The issues of death are addressed later in the booklet. Never-the-less, having a framework in faith for living with pain which is brief, or ongoing, or returning is an important issue for some of us at any age.
We will do more work on the issue of pain in later life:
Depression:
Again Appleton begins with a downbeat representation of normal ageing: ‘Despondency is frequent in old age’.
In fact, although old age is often quoted as a risk factor for depression: Risk factors | Background information | Depression | CKS | NICE
Studies find that depression and anxiety are less frequent amongst people in their sixties and seventies, than amongst middle aged and younger people: SN06988.pdf (parliament.uk)
That is not to say that depression/anxiety does not occur in late life, the studies found roughly 6% of men and 12% of women 75+ had such symptoms. When they occur, these are serious symptoms and have implications for morbidity and mortality – and for spiritual life.
Appleton asks, via the psalmist: ‘Why are you cast down, O my soul, and why are you disquieted within me? (Psalm 42: 5)
He recommends looking for reasons, perhaps alone, perhaps with the help of responsible and trusted others.
He quotes the psalmist’s solution: ‘Hope in God, for I shall again praise him, my help and my God. Psalm 43: 5)
And he offers a longer prayer which he uses when these other approaches have failed. ’Let me hear you whisper’.
He addresses the phenomenon of loneliness, which is strongly linked to depressive mood rather than simply being alone.
‘Remember that God is in every place. Nothing can keep Him out. He is Spirit and can enter locked doors, prison cells, lonely bedsides in home or hospital……He can our out inexhaustible love, grace and help.’
We will do more work on the issues of depression and loneliness
Memory:
Appleton references ‘Four Quartets’ by TS Eliot who urged old people to explore
Of memory, St Augustine enthused:
‘Great is the power of memory, exceedingly great. Men go forth to wonder at the height of mountains, the huge waves of the sea, the broad flow of rivers, the extent of the oceans, the courses of the stars – and forget to wonder at themselves.’
So here, he is seeking perspective and humility in what we value. He goes on to appreciate the wonder of the human memory, much more impressive than any manufactured computer: ‘Memory gives us personal identity and continuity: without memory we should have only the rudimentary consciousness of an animal, but should not be able to reflect on it.’
In this he gives a very blinkered account of human and animal cognition and consciousness, which does not stand up to a modern appreciation of the facts.
But his discourse on memory as the means by which past, present and future are brought together, is sound and helpful.
A reference to Memory and Character in Revelation and time concepts in near-death experiences are thought provoking.
He suggests that looking back, via memory, gives us chance to be thankful for blessings and for people- to get right the past and find hope and guidance for the future.
There are things to be ashamed of and to seek forgiveness. There is opportunity to continue dialogue with ‘those we speak of as dead’.
‘In old age we have time to explore inner space. We look back in memory and on the journey of life so far.’ There may be regrets, dismay pride, happiness, grief and hope.
Appleton’s section on human memory recognises its importance to the spirituality of each of us and expands on some of its wonders. There is no exploration of the changes to memory function which come with normal ageing, nor is there any consideration of pathological states, including dementia. We heard in discussion of syndromes which do not sum to a global loss of cognitions as in dementia, but superficially erase the facility of memory. Every day presents a clean slate. Living with such changes poses great challenge.
We are working to supply additional references to memory and disorders of memory
The future:
Beginning to share his anticipation of the end of his life on earth and ‘crossing into the new dimension’.
There is no doubting his confidence in the continuity into the life beyond.
‘Best of all, we can look back from the border of this new country…….
God has prepared even lovelier things which will surpass both our understanding and our desire’.
Facing death:
In his eighties and beyond, Appleton confirms that time is given to thoughts of death: ‘We cannot sidestep the thought of death. What should the spiritually minded person think about it?’
He turns to the words of Psalm 23
‘I will fear no evil, for you are with me …… I shall dwell in your house, O Lord, for ever.’
Appleton says: Death is not an end but a new beginning. It is like another birth.
In this he was ahead of developments in palliative care thinking, which now talks of midwives for the dying: Midwives for the Dying – The Atlantic
He goes on to share his communion with God, in prayer, looking to join Him in the life beyond and to find loved ones whose deaths have given grief.
‘You have told us that you are preparing a place for us: prepare us also for that happy place, that where you are, we may be always, O dear Lord of life and death’
‘Our belief in life after death depends not on scientific proof, but on our belief in God.’
‘Death is like going home to the sphere where we finally belong, to the Eternal Father who created us, values and loves us.’
And he finds comfort in the poetry of others who have written about continuity with others they have loved, in the life beyond.
He finishes with words from George Herbert, who died at 40, and looked for death as rest.
David Jolley March/April 2023
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- music and visual art and the relevance of culture and language
- communications 1:1 and communication when part of a group
- the influence of emotions on communication and
- the phenomenon of lost control in ‘disinhibition’ and altered behaviour such as can occur within dementia
- concepts of clarity and brevity when applied to expression.
Words are powerful tools:
- they can be simple labels
- may provide the scaffolding around which we can develop more ideas
- may function as a necklace of rosary – ideas linking along one from another
- may work as a place marker – ‘I was here’, or place setting – ‘This is where I belong’
- may be a coat hanger – a structure to keep things tidy and hold them up for inspection, Or
- may be a signpost to experience or to possibilities beyond, and
- can refer to things unseen, or things which have been lost.
Other senses, especially smell, but also touch, can be evocative of ideas and memories
Katharyn told us about the Wellhead tool kit which she has created to help communication for people who have difficulty with words: this is described in a number of publications: e.g. MumbyGrace2019HSCCauthormanuscriptforResearchGate.pdf; and on Katharyn’s website https://www.wellhead.org.uk/
Katharyn has formulated a four dimensional schema of spirituality with measures of ‘wide’, ‘long’, ‘high’ and ‘deep’. She uses this to describe an individual’s spiritual status at a point in time – and can monitor changes in response to time and therapy. There are particular situations where she has worked with individuals experiencing loss, change and trauma. The system can be applied with people with mild dementia but not severe dementia, with aphasia, with auditory or visual difficulties – across the adult age-range and across faiths and no faith. It helps an individual to take ownership of their spiritual life and wellbeing
Katharyn showed video clips of people who have communication difficulties, working with her.
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We were impressed and keen to learn more. Observations included:
- wondering about different depths of spiritual life can be accessed
- noting the importance of nonverbal communications and especially the role of hands in this
- the importance of taking advantage of closeness in natural interactions, to facilitate communication on a spiritual level – dressing, washing, sharing a meal are all such instances
- the power of silence in togetherness, still or walking, with or without music: ‘Don’t try too hard to find my words: Just be with me and love me.’ (Robert Davis – and several others who have spontaneously made similar remarks)
This was a most interesting, informative and thought-provoking session. We are grateful to Katharyn for leading us into areas we may have flinched from. We need to tread carefully – but let us see where we might get to.
Notes by David Jolley
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- The concept of dementia has not been easily understood or accepted: there is no word directly equivalent to dementia in any of the South Asian Languages. Many people believe that any memory loss is normal as you get older. When matters become more complicated people may be said the have ‘lost their mind’, or ‘gone mad’.
- Although South Asians make good use of health care services for physical health problems, they do not take mental health symptoms to doctors so readily and dementia remains hidden.
- Even when people do present, they often find that they are not provided with sympathetic or suitable services. There is a lack of culturally appropriate assessment Services lack knowledge, are short of resources overall, find barriers of language hard to get over.
- There is a reluctance from individuals and families to ask for help or to accept it. The wish to appear normal and to keep things within the family are strong.
- Amongst many service providers the myth of ‘They look after their own, don’t they?’ lingers on.
- Younger carers will ask for help
- Many services rely on family members to provide information, including translation both ways.
- Whilst many older South Asians live within families, there are many who live alone. Their needs and how to meet them, are especially challenging.
Karan’s recent research examined the experiences of people with dementia who did make contact with services. She found that even when a diagnosis of dementia was made and given, no suitable support followed. The label made families fearful that the individual would behave badly at the Temple or elsewhere and so began to keep them apart. No culturally acceptable alternative care was forthcoming.
Celebrated ‘pathways’ were fragmented. Most are ‘Caucasian-Centric’ You can download the report here: https://drjutlla.com/wp-content/uploads/2022/06/FULL-PROJECT-REPORT.pdf
- Pioneer services with an Integrated Care Pathway have been developed in Sandwell.
We were privileged to view a video telling the story of Kiran – a young South Asian carer, frustrated by the absence of suitable support from statutory services, torn between the needs of her children, her parent and her partner. A powerful communication of the realities of the situation. This film is part of the ADAPT study which has developed an online toolkit of enhanced interventions for south Asians affected by dementia. See: https://raceequalityfoundation.org.uk/adapt/ to see the toolkit – you can find ‘Kiran’ on the home page.
- Mostly people rely on private care
- More is done by family, friends and neighbours forging Do-It-Yourself networks: based locally, using people’s own premises, and having shared culture and language, somehow combating the loss of jobs and reduction of other social contact.
Karan and her mum, and others are working with The Alzheimer’s society to work with communities and service providers with the benefit of what has been revealed by research.
- We saw a video of some of this work and heard of its successes: ‘The Penny Dropped’ said one older South Asian man. You can read more about this work here: https://drjutlla.com/dementia-resources-available-in-punjabi/
- It was inspiring to hear that a project in Swindon has been sponsored by the local Sikh Temple – demonstrating ownership of the issue and practical involvement.
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The presentation was followed by a rich and well-informed discussion
- We heard of similar difficulties for other disadvantaged groups and people from other cultures..
- We heard of attempts to help which had not worked as well as was hoped: ‘What we produced was not useful’
- The work of a volunteer Sikh chaplain was much praised
This was an informative and moving experience for us all with so much to learn and consider. We came away from the presentation and discussion with an increased respect for what ordinary people can and will do when there is need, and realising that this need is not matched by statutory or professional understanding, or flexibility – or humility. So we are humbled and strengthened at the same time to learn from all this and to go bravely and thoughtfully on to help each other and gradually align resources to better effect
With gratitude to everyone who took part
David Jolley
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Christians on Ageing Conference Call
Holidays for the mind and soul: people with dementia and their family carers
18 October 2022
Some notes from the discussion held on 18 October 2022 between Carol Sargent, Albert Jewell, Ruth Aird, Bill Hawes, Domini Lucas, Lesley Pitchford, Barbara Stephens and David Jolley
Carol Sargent is the founder and CEO of Mind for You which specialises in providing bespoke holiday experiences for people with dementia and their carers. She believes that holidays are important instruments helping people refresh and find times of peace and hope The MindforYou Story | MindforYou
Everyone had a chance to introduce themselves briefly.
Carol told us she comes originally from Aberdeen. Growth and education took her to become a scientist, specialising in respiratory disorders. Her involvement in dementia and attempts to provide a better life for people with dementia and their families, stemmed for experiences with her mother and mother-in-law. One living in Scotland, the other in England. The availability and flexibility of support from statutory services in Scotland were and are much better than in England.
The family had always enjoyed holidays together, but they wondered if this could continue with the two mums altered by dementia. They learned about adventure holidays: Dementia Friendly Holidays | Dementia Adventure But these looked to be too demanding for the physically frail and impaired mums. The family conceived the idea of taking a holiday in rented cottages. Dad wanted to meet with others who were in similar situations to his as a carer. Carol determined to see if she could create something which would meet the needs and wishes of her family, perhaps especially as expressed by dad. She went to meetings about innovations and gained confidence and information such that 2015 she set up a Social Enterprise to turn ideas and dreams into reality. Home | Social Enterprise UK
The Mind for You holidays aim to bring together a maximum of ten people with and without dementia, often including couples, and supported by up to five staff. The people with dementia will have a range of different needs. It has been found that people who are not able to stand and transfer cannot be coped with, but a great deal of challenges can be overcome and worked with. Venues would be rented dementia friendly facilities. Carol spent time with Professor Mary Marshall at the Iris Murdoch Centre University of Stirling to learn more: The Iris Murdoch Research Centre – The Iris Murdoch Society ; Professor Mary Marshall | Jessica Kingsley Publishers – UK (jkp.com)
The aim was to make holidays such that people would trust the organisation and the carers: ‘If we can see the whites of your eyes – We will come on holiday with you.’
So every potential holiday person was visited in their homes before the exercise so that both sides could see and feel what they were entering into. This followed the paper assessment of the individual’s characteristics and needs – and those of anyone who would come with them to the holiday.
Couples have found that their relationship has been changed by living with dementia. Sometimes people chose to come against the advice of others, including doctors and other experts. Carers were often stressed and/or depressed. Everyone would be addressed as A PERSON (as per Kitwood Tom Kitwood – Wikipedia, the free encyclopedia ). It was exciting for all concerned. Family carers often felt that they were not doing a good job – but they came to understand that they were.
Carol used her research skills and collected data which demonstrated the benefits of holidays to individuals with dementia and their carers – reducing agitated and distressed behaviour, reducing feelings of stress and depression measured by quantitative scales and qualitative questions.
- During the pre-covid years the holidays had been delivered in 13 different settings across England, Scotland and Wales
- Families in Scotland were more able to get financial support than those in England. Scotland looks to provide supportive and therapeutic care. England offers only response in crisis.
- These holidays are a positive experience for all parties – differing in this from #respite’ with its negative connotations.
Covid-19 and lockdowns meant that all activity ceased for 18 months
Mind for You has started again – but this is a different world. Finances and rules are more restricted. All holidays are now at one site in Dorset. This simplifies management and costs. Rooms are all similar and the design is dementia friendly. There is ambition for Mind for You to build its own purpose designed property. Though many people come as couples, some people with dementia have holidayed alone and this has been successful – some coming for repeated holidays.
There is a programme for everyday – with time, especially mornings, to go slow. Then time for outings and something new – and time to recover and reflect. Photographs are taken – capturing joy in a way which no rating scale can. Everyone is given a photobook and framed photograph to take with them at the end of the holiday – so they can more easily hold on to the memories and feelings.
- People make powerful friendships in these few days together.
- Dementia takes the brakes off. It is all about what happens.
- Music, art and other outlets for creativity are used throughout.
Interestingly Carol has discovered that 60% of her holidaymakers are churchgoers – but sometimes church has become too difficult an environment for them. These shared holidays are changing the perception of what life with dementia can be like.
People take their stories back home and share with friends in their regular circle. The relationship with Mind for You often continues. Carol is invited to funerals.
So much – so good. Carol asks – how can we spread the message wider and deeper? Maybe church communities will be one avenue.
We were transfixed by the care, knowledge and humility expressed by Carol as she described her learning in progress and the application of all of this to develop something so special – but something which works in practice – against a lot of odds.
In discussion:
- We asked about difficulties with staffing and the crisis in the hospitality sector
- We learned more about the structure of staffing, recruitment, qualifications and safeguarding
- Price: currently £1199 per person per 5 day week
- We learned more about programmes, excursions, menus and examples of things which made a difference – For one lady this was a yo-yo! ‘Dog Bingo’ – you woof when you have a line!
- Chips!
- We heard about The Rings in Fife and its charismatic leader Moira Henderson The Rings – Enabling holidays for all
- There was discussion and appreciation of intergenerational aspects of care and living with disabilities.
- We reflected that some people are happy with a degree of uncertainty, but others prefer a predictable regime
- We considered how to approach matters where an individual’s preferences or habits have the potential for harm to themselves or others. Diet and smoking.
- Everyone has to demonstrate a degree of flexibility and the ability to think on their feet – guided by key principles of respect and compassion.
- Positive use of distraction and distractibility.
- Rules of thumb say that individuals must be well over the effects of any infection to come on a holiday. They should not have been in hospital within the past month.
This was a marvellous morning sharing wonderful ideas and their interpretation into practice. We are thankful to Carol for carefully explaining her journey into this work, her use of established skills, and her learning as she goes –and spreading the ideas for others to use and extend themselves.
We have agreed to share contact details to allow more exchange of knowledge and ideas. And we will all be keen to let others know about this brave and innovative initiative which raises standards and ambition to allow people with dementia and their families some joy.
David Jolley
