1. Engaging with Dementia Affirming Ministry Margaret A Goodall. Guildford October 2012 Margaret.Goodall@mha.org.uk

2. More than body, brain and breath

3. Dementia What are we talking about? For those over 50…. ‘one foot in the grave and the other on a banana skin.’ The big ‘D’ Cancer seen as a kinder disease as it ‘allows the sufferer to retain his mental faculties and with his family up to, or virtually to, the end. His humanness goes with him… but with dementia the spirit and soul has extracted itself possible years earlier.’ (Gidley and Shears ‘Alzheimers’ 1988)

4. Alzheimer’s Disease International reported the global cost as £388 billion. Number of people with dementia set to double by 2030 and treble by 2050. An estimated 800,00 people with dementia in UK. This is set to increase to 1 million by 2025 Each person with dementia costs the UK economy £27,643 per year.

5. Confusion From pleasantly muddled

6. To What feels like chaos

7. The main types of dementia: of the more than 200 types  Alzheimer’s disease  Vascular dementia  Dementia with Lewy Bodies  Frontal lobe dementia

8. Stages along the way  early stage: loss of short term memory, confusion,  middle stage: more support needed with daily living  end stage: increasing physical frailty

9. So where is the person?  In a strange land  Dead or alive? Social malignancy / social death So who do we see?

11. Old culture of care  People with dementia seen as problems  Minimal warehousing: people with dementia as objects  Drugs to control behaviour

12. New culture of care  See the person not the problem  They are people like us  Their well-being is important So….. what can we do? So….. what can we do?

13. Caring for the Spirit  We are more than body brain and breath We can be:  Religious  Spiritual Where do we find our spiritual selves nourished?

14.  Basic human right ‘..not simply what religion we practise; it is what has given meaning in our lives. Our garden, our pets, the familiar ritual of religion. It is important to help us reconnect with what has given us meaning as we journey deeper into the centre of our being, into our spirit.’ (Bryden 2005: 123) ‘..not simply what religion we practise; it is what has given meaning in our lives. Our garden, our pets, the familiar ritual of religion. It is important to help us reconnect with what has given us meaning as we journey deeper into the centre of our being, into our spirit.’ (Bryden 2005: 123) Recognising the uniqueness of each person Recognising the uniqueness of each person ‘I treasure your visit as a ‘now’ experience in which I have connected spirit to spirit, I need you to affirm my identity and walk alongside me. I may not be able to affirm you... but you have brought connection to me, you have allowed the divine to work through you’. (Bryden 2005: 110)

15. Meaning  Camus says: ‘There is but one serious problem and that is … judging whether life is or is not worth living’  Humans are meaning-makers ‘A giving to the world, a taking from the world, and making sense of the world’ (Viktor Frankl)  How do we make meaning?

16.  ‘Having Alzheimer’s disease made me face ultimate realities, not my bank account. My money, my job, and other parts of my 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.’ Snyder, L. (2003). Satisfactions and challenges in spiritual faith and practice for persons with dementia. Dementia, 2(3), 299-313. Snyder, L. (2003). Satisfactions and challenges in spiritual faith and practice for persons with dementia. Dementia, 2(3), 299-313.

17. Making meaning  Be in the present moment be open and be with be open and be with  Learn their dreams seize the day seize the day  Build on life history the memory box the memory box

18.  What might you put in your memory box? why is that thing important to you?  A ‘thing’ is usually important because of the emotional memory contained in it.

19. Loving kindness in the land of forgetfulness Why bother?  Right/left brain? Rationality or Relationality  It needs to be more than ‘gut feeling’  Example of Jesus: time for outsiders  Helps from Christian tradition or theology?

21. It’s more than words: communicate! Communication is : the smile on your face : a friendly approach : a friendly approach : listening thoughtfully : listening thoughtfully : the warmth in your voice : the warmth in your voice : a gentle touch : a gentle touch Communication is only 3% the words we use

23. What can I do?  Give Loving Attention: the magic moments of visits and the feelings remain the magic moments of visits and the feelings remain  Use the senses to access memory and feelings  Enable worship through signs, symbols and rituals

24. Cues and Clues Feelings and emotions are not lost. Tap into memories through feelings using the senses. People usually have a ‘preferred’ sense  sight  sound  smell  taste  touch

25. Access the Christian Story: ‘Tell me the old old story’  Tell me simply  Tell me slowly  Tell me often  Tell me always

26. Worship Isolation : social malignancy

27. Being together in ‘family’. A belonging or being at home

28. Use symbols to cue worship

29. Familiar hymns and songs especially those with choruses

30. Familiar prayers

31.  What symbols, hymns, familiar readings and prayers do you think might be useful in your situation?

32. Can good care change who we see? ..\..\Videos\RealPlayer Downloads\Gladys Wilson and Naomi Feil.flv..\..\Videos\RealPlayer Downloads\Gladys Wilson and Naomi Feil.flv..\..\Videos\RealPlayer Downloads\Gladys Wilson and Naomi Feil.flv

33. Things to remember  Feelings and emotions don’t go  Visits do matter  Eye contact is vital  Beware the assumptions we make  Avoid sensory overload

34. Don’ts of Dementia Care  Don’t argue  Don’t explain  Don’t reason  Don’t give yourself a hard time

35. Our Christian hope  ‘Strength for today …

37.  … and bright hope for tomorrow’

39. …and yet this I call to mind  A re-writing of Matthew 25  Lamentations 3: The steadfast love of the Lord never ceases. It is new every morning. The steadfast love of the Lord never ceases. It is new every morning. Great is your faithfulness Great is your faithfulness

40. Resources Caring:  ‘Caring for someone with dementia’. Jane Brotchie (Age Concern)  ‘Person to Person’ Tom Kitwood & Kathleen Bredin (Gale Publications)  ‘And still the music plays’ Graham Stokes (Hawker Publications)  ‘Visiting those with Dementia’. MHA  Spiritual care for people with dementia. MHA  ‘When someone you love no longer remembers’ Murphey Autobiography:  ‘Living in the labyrinth’ Diana Friel McGowin (Mainsnail Press)  ‘Dancing with dementia’ Christine Bryden (Jessica Kingsley Publications)

41. More resources… Children’s books:  ‘What’s happening to Grandpa?’ Maria Shriver (Little Brown & Co and Warner Books)  ‘Wilfred Gordon McDonald Partridge’ Mem Fox (Puffin)  ‘Memory Bottles’ Beth Shoshan (Little Bee) Films on general release that relate to dementia:  The Notebook  Eternal Sunshine of the Spotless Mind  In Memory of Her  Iris  Fifty First Dates

42. Websites:  Methodist Homes www.mha.org.uk www.mha.org.uk  Christian Council On Ageing (CCOA) www.ccoa.org.uk www.ccoa.org.uk