Margaret Goodall - Caring for those with Dementia: through Creative Imagining

1. Caring for those withCaring for those with
Dementia:Dementia:
through Creative Imaginingthrough Creative Imagining
Margaret A Goodall July 2013Margaret A Goodall July 2013

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

3. Cost of DementiaCost of Dementia
Alzheimer’s Disease International reports the global costAlzheimer’s Disease International reports the global cost
of dementia as £388 billion.of dementia as £388 billion.
Number of people with dementia set to double by 2030Number of people with dementia set to double by 2030
and treble by 2050.and treble by 2050.
An estimated 800,00 people live with dementia in the UKAn estimated 800,00 people live with dementia in the UK
this will rise to 1 million by 2025.this will rise to 1 million by 2025.
World-wide currently 36.5 million set to rise to 65.7World-wide currently 36.5 million set to rise to 65.7
million by 2030million by 2030

4. Cost to theCost to the
person:person:
ConfusionConfusion
FromFrom
pleasantlypleasantly
muddledmuddled

5. toto
What seem likeWhat seem like
a return to chaosa return to chaos

6. How is it described?How is it described?
 1990’s …1990’s …
a generic term to describe a progressive deterioration ina generic term to describe a progressive deterioration in
mental powers accompanied by changes in behaviourmental powers accompanied by changes in behaviour
and personality.and personality.
 UK National Audit Office 2007…UK National Audit Office 2007…
a range of progressive terminal organic brain diseases…a range of progressive terminal organic brain diseases…
caused by structural and chemical changes in the brain.caused by structural and chemical changes in the brain.

7. Ways to Explain DementiaWays to Explain Dementia
 Near-uniform agreement of an organic disease model forNear-uniform agreement of an organic disease model for
dementia that has consequences for our understanding thatdementia that has consequences for our understanding that
nothing can be donenothing can be done
Could there be other ways of understanding it?Could there be other ways of understanding it?
e.g. some perspectives from social sciencese.g. some perspectives from social sciences
 Dementia as disabilityDementia as disability
 Dementia as devianceDementia as deviance
 Dementia as brain damageDementia as brain damage
 Dementia as lossDementia as loss
 Dementia as traumaDementia as trauma

8. So… who do we see?So… who do we see?
And … does it matter?And … does it matter?

11. Person-centred carePerson-centred care
Authentic contact and communication:Authentic contact and communication:
‘a standing or status that is‘a standing or status that is
bestowed upon one human being, bybestowed upon one human being, by
others, in the context of relationship andothers, in the context of relationship and
social being. It implies recognition, respectsocial being. It implies recognition, respect
and trust’and trust’
(Kitwood 1997:8)(Kitwood 1997:8)

12. RespectRespect
 respectarerespectare – ‘to look again’ (Post 2005:223)– ‘to look again’ (Post 2005:223)
 ResearchResearch
‘‘Just because they have dementia it doesn’t mean thatJust because they have dementia it doesn’t mean that
their life has ended… sometimes there is a glimpse oftheir life has ended… sometimes there is a glimpse of
something… it could only be seconds’something… it could only be seconds’
 Respect offered with friendliness and supportRespect offered with friendliness and support
‘‘When memory fails love takes its place’When memory fails love takes its place’

13. When you’ve met one person withWhen you’ve met one person with
dementia…..dementia…..
 Kitwood ‘It is as if the presence of what used toKitwood ‘It is as if the presence of what used to
be called ‘organic mental disorder’ places somebe called ‘organic mental disorder’ places some
kind of veto upon normal human encounter’kind of veto upon normal human encounter’
(1997:7)(1997:7)
 Good care is enabled through the normal bondsGood care is enabled through the normal bonds
of human kindness: person to personof human kindness: person to person

15. The cultureThe culture
 Looking outside the boxLooking outside the box
 ‘‘We have lost sight of the collective nature ofWe have lost sight of the collective nature of
attitudes’ (Douglas 1986:82)attitudes’ (Douglas 1986:82)
 The entrenching of an idea is a social process.The entrenching of an idea is a social process.
 ‘‘People need to be tempted out of their nichesPeople need to be tempted out of their niches
by new possibilities’ (Douglas 1986:108)by new possibilities’ (Douglas 1986:108)

16. Old culture of careOld culture of care
 People with dementia seen as problemsPeople with dementia seen as problems
 Minimal warehousing: people with dementia asMinimal warehousing: people with dementia as
objectsobjects
 Drugs to control behaviourDrugs to control behaviour

17. New culture of careNew culture of care
 See the person not the problemSee the person not the problem
 They are people like usThey are people like us
 Their well-being is importantTheir well-being is important
So…..So…..
What can we do?What can we do?

18. ImaginingImagining
 Prompts for imagining:Prompts for imagining:
life historylife history
family/friendsfamily/friends
relationshiprelationship
andand
religious beliefsreligious beliefs
 Imagining a different future but is this wishful thinking?Imagining a different future but is this wishful thinking?

19. What could a Christian response addWhat could a Christian response add
to care of those living with dementia?to care of those living with dementia?
 Is their any Good News for these, the least of myIs their any Good News for these, the least of my
brethren?brethren?
 If it is possible for carers to recognise and relate to aIf it is possible for carers to recognise and relate to a
person with dementia even when they cannot enjoyperson with dementia even when they cannot enjoy
rational conversations, how much more will God – whorational conversations, how much more will God – who
sees beyond the mind and into the heart – do so.sees beyond the mind and into the heart – do so.
 Goldsmith: ‘dementia confronts us with the reality ofGoldsmith: ‘dementia confronts us with the reality of
human love and the unconditional love and acceptancehuman love and the unconditional love and acceptance
of God’. (2004:192)of God’. (2004:192)

20.  Alzheimer’s can steal memories, it can stealAlzheimer’s can steal memories, it can steal
personalities, it can steal bodily functioning, butpersonalities, it can steal bodily functioning, but
it must not be allowed to steal the human spirit.it must not be allowed to steal the human spirit.
 Being present in the moment is not enoughBeing present in the moment is not enough
 Imagine the possibility of future flourishingImagine the possibility of future flourishing

21. Caring for the person throughCaring for the person through
creative imaginingcreative imagining
 A future transformed through respect and relationshipA future transformed through respect and relationship
‘‘Here I am known not only for what I am, but also forHere I am known not only for what I am, but also for
what I have been and who I may yet become’ (Hudsonwhat I have been and who I may yet become’ (Hudson
2008:93)2008:93)
 From the perspective of Kingdom valuesFrom the perspective of Kingdom values
 A re-imagining of the person that enables care that isA re-imagining of the person that enables care that is
truly person-centredtruly person-centred

22. BibliographyBibliography
Bryden. C. (2005)Bryden. C. (2005) Dancing with DementiaDancing with Dementia. London:Jessica Kingsley. London:Jessica Kingsley
Douglas. M. (1986)Douglas. M. (1986) How institutions thinkHow institutions think. New York: Syracuse. New York: Syracuse
University PressUniversity Press
Gidley. I & Shears. R (1988)Gidley. I & Shears. R (1988) Alzheimers: What it is, how to cope.Alzheimers: What it is, how to cope.
London: Unwin Hyman LtdLondon: Unwin Hyman Ltd
Goldsmith. M. (2004)Goldsmith. M. (2004) In a Strange LandIn a Strange Land. Southwell:4M Publication. Southwell:4M Publication
Hudson. R. (2008) ‘Ageing and the Trinity’ In Jewell (Ed)Hudson. R. (2008) ‘Ageing and the Trinity’ In Jewell (Ed) Ageing,Ageing,
Spirituality and Well-beingSpirituality and Well-being. London: Jessica Kingsley Publishers. London: Jessica Kingsley Publishers
Kitwood. T. (1997) ‘The Concept of Personhood’ In Miesen &Kitwood. T. (1997) ‘The Concept of Personhood’ In Miesen &
Jones (Eds)Jones (Eds) Care-giving in dementiaCare-giving in dementia. London: Routledge & Kegan. London: Routledge & Kegan
PaulPaul
Post. S. (2005) ‘Respectare: moral respect for the lives of the deeplyPost. S. (2005) ‘Respectare: moral respect for the lives of the deeply
forgetful. In Hughes et al (Eds)forgetful. In Hughes et al (Eds) Dementia: mind, meaning and theDementia: mind, meaning and the
personperson. Oxford:Oxford University Press. Oxford:Oxford University Press