Reflecting on dementia
Jennifer Bute’s book Dementia from the Inside: A doctor’s personal journey of jope, written with Louise Morse (SPCK, 2018), has given food for thought to Julia Burton-Jones, Anna Chaplaincy lead and Dementia Specialist, in the Diocese of Rochester.
Julia has used the book to spur Anna Chaplains in her area of North Kent and south London to reflect theologically on the challenges of living with dementia, and supporting carers of those diagnosed with the condition:
‘Jennifer Bute lives in a dementia-inclusive retirement village. She worked in Africa as a missionary doctor before practising as a GP for 25 years and training medical students. She retired following a diagnosis of young-onset Alzheimer’s in 2009 and devotes her time to encouraging others and challenging how people view dementia.
'She is in demand as a public speaker at both Christian and secular events, appearing on radio and television. Her website is entitled Glorious Opportunity and has videos and guidance for supporting people with dementia.'
‘When I was asked to write about how my dementia affected my relationship with God, my first reaction was to say it was the other way around. Knowing the Lord and being kept by him affects my life with dementia more than words can say, and probably more than I realise. It is knowing him in my life that gives me joy. I believe that as cognition becomes limited, the person with dementia becomes more aware of spiritual things, possibly because inhibitions or social assumptions are removed. My dementia has greatly deepened my relationship with God; having dementia has enriched my life. I ask God to help me rejoice in adversity. I see rejoicing as a basic scriptural injunction and there are many mental and physical benefits from doing so’ (pp. 1-2).
‘Nothing is wasted in God’s economy’
‘I gain so much spiritually from reading the Bible from the perspective of someone with dementia. It is thrilling to see the Bible as the source of so much that is helpful in understanding and caring for people with dementia’ (p. 5).
In the early chapters of the book, Jennifer describes her faith starting from an early age. Through painful formative experiences as a child and young adult (not least losing her mother when she was only four years old and a broken engagement in her 20's), she learned to trust God in the toughest times in her life. The impression is that a life lived close to God provided the bedrock for finding hope in dementia.
Expecting God to work
Throughout the story of her life, Jennifer describes miraculous incidences of God at work in her life, confirming his loving plan for her. Following her diagnosis with dementia, she has continued to experience supernatural interventions in times of distress, describing angelic visitations. This is especially poignant in the context of her description of vivid and sometimes disturbing visual and auditory hallucinations in her dementia.
Key principles for understanding people with dementia (chapter 5)
1. There is always a reason why a person is behaving in a particular way.
2. When facts are forgotten, feelings remain.
3. Familiar patterns of behaviour continue.
She urges readers to ‘find the reason’ behind the person’s behaviour. There are distressing stories where Jennifer experiences a ‘meltdown’, usually caused by the thoughtlessness of those around her (hence her arguing strongly for dementia-friendly churches and communities). She lists triggers which may be relevant for others with dementia, several of which may occur in church life: trying to cope with a task that is too complicated; being in unfamiliar surroundings; travel; being unwell; being in a large gathering; being with unfamiliar people; having to cope with too much noise.
If we can avoid situations of ‘sensory overload’ for people with dementia, church will be a happier place for them. In a meltdown, she asks for: reassurance; avoiding questions; simplifying or calming her environment; perhaps offering a cup of tea.
Don’t disable, enable (chapter 6)
Jennifer has established a Japanese Memory Group to offer cognitive stimulation for those living in her retirement community. She sells the resources on her website. She urges us to see the potential for every person with dementia, even those reaching the end of their lives, to make a connection, perhaps through meaningful music. She says, ‘It’s love and relationships that count.’
Kintsukuroi (chapter 8)
This is the art of repairing broken pottery with costly gold or silver, making it more beautiful and of greater worth than before. Jennifer brought back from Africa a water pot that was shattered into 100 pieces in transit. She glued it back together and it is a constant reminder of how God has glued her life back together at times of brokenness.
‘The art of Kinsukuroi is a wonderful picture to me of how God has poured his love and grace into my life to hold it together, making it more beautiful and giving it greater value. It is also a picture of how we can all pour love and care and acceptance into the lives of those around us, making them more beautiful. No matter how cracked or broken their lives, we can show they are of immense value’ (p. 115).
Churches supporting people with dementia
‘Church fellowships are essential for Christians. Church is not only a place of worship but of “building one another up” and encouraging one another’ (p. 47).
‘I feel passionately that people with dementia should be as important to church as anyone else. God sees us as complete in Christ – we are all valuable members of his Body’ (p. 48).
Questions for Discussion
1. What does it mean to ‘rejoice in adversity’ through the experience of dementia?
2. ‘Nothing is wasted in God’s economy.’ What does this mean for people with dementia and their families?’
Developing Anna Chaplaincy
If you'd like a copy of Julia's BRF book, Anna Chaplaincy in Rochester Diocese: A blueprint for other dioceses across the UK, which is relevant for any church grouping wanting to develop this ministry strategically, please send us your full name and address: email@example.com