Caring for those Caring for those with Dementia:with Dementia:

through Creative through Creative ImaginingImagining

Margaret A Goodall July 2013Margaret A Goodall July 2013

DementiaDementiaWhat are we talking about?What are we talking about?

For those over 50…. For those over 50…. ‘one foot in the grave and the ‘one foot in the grave and the other on a banana skin.’other on a banana skin.’

The big ‘D’ The big ‘D’ Cancer seen as a kinder disease as Cancer seen as a kinder disease as it ‘allows the sufferer to retain his mental it ‘allows the sufferer to retain his mental faculties and with his family up to, or faculties and with his family up to, or virtually to, the end. His humanness goes virtually to, the end. His humanness goes with him… but with dementia the spirit with him… but with dementia the spirit and soul has extracted itself possible and soul has extracted itself possible years earlier.’ (Gidley and Shears 1988)years earlier.’ (Gidley and Shears 1988)

Cost of DementiaCost of Dementia

Alzheimer’s Disease International reports Alzheimer’s Disease International reports the global cost of dementia as £388 billion.the global cost of dementia as £388 billion.

Number of people with dementia set to Number of people with dementia set to double by 2030 and treble by 2050.double by 2030 and treble by 2050.

An estimated 800,00 people live with An estimated 800,00 people live with dementia in the UK this will rise to 1 dementia in the UK this will rise to 1 million by 2025.million by 2025.

World-wide currently 36.5 million set to rise World-wide currently 36.5 million set to rise to 65.7 million by 2030to 65.7 million by 2030

Cost to Cost to the the

person:person:

ConfusionConfusion

From From pleasantlpleasantly y muddledmuddled

toto

What seem like What seem like a return to chaos a return to chaos

How is it described?How is it described?

1990’s … 1990’s … a generic term to describe a a generic term to describe a progressive deterioration in mental powers progressive deterioration in mental powers accompanied by changes in behaviour and accompanied by changes in behaviour and personality.personality.

UK National Audit Office 2007… UK National Audit Office 2007… a range of progressive terminal a range of progressive terminal organic brain diseases…caused by structural organic brain diseases…caused by structural and chemical changes in the brain.and chemical changes in the brain.

Ways to Explain Ways to Explain DementiaDementia

Near-uniform agreement of an organic disease Near-uniform agreement of an organic disease model for dementia that has consequences for model for dementia that has consequences for our understanding that nothing can be doneour understanding that nothing 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 damage Dementia as brain damage Dementia as lossDementia as loss Dementia as traumaDementia as trauma

So… who do we see?So… who do we see?

And … does it matter?And … does it matter?

Person-centred carePerson-centred care

Authentic contact and communication: Authentic contact and communication: ‘a standing or ‘a standing or status that is bestowed upon one status that is bestowed upon one human being, by others, in the human being, by others, in the context of relationship and social context of relationship and social being. It implies recognition, respect being. It implies recognition, respect and trust’ and trust’

(Kitwood 1997:8)(Kitwood 1997:8)

RespectRespect respectarerespectare – ‘to look again’ (Post 2005:223) – ‘to look again’ (Post 2005:223)

Research Research

‘‘Just because they have dementia it doesn’t Just because they have dementia it doesn’t mean that their life has ended… sometimes mean that their life has ended… sometimes there is a glimpse of something… it could only there is a glimpse of something… it could only be seconds’ 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’

When you’ve met one When you’ve met one person with dementia…..person with dementia…..

Kitwood ‘It is as if the presence of Kitwood ‘It is as if the presence of what used to be called ‘organic what used to be called ‘organic mental disorder’ places some kind of mental disorder’ places some kind of veto upon normal human encounter’ veto upon normal human encounter’ (1997:7)(1997:7)

Good care is enabled through the Good care is enabled through the normal bonds of human kindness: normal bonds of human kindness: person to personperson to person

The cultureThe culture

Looking outside the boxLooking outside the box ‘‘We have lost sight of the collective We have lost sight of the collective

nature of attitudes’ (Douglas 1986:82)nature of attitudes’ (Douglas 1986:82) The entrenching of an idea is a social The entrenching of an idea is a social

process. process. ‘‘People need to be tempted out of People need to be tempted out of

their niches by new possibilities’ their niches by new possibilities’ (Douglas 1986:108)(Douglas 1986:108)

Old culture of careOld culture of care

People with dementia seen as People with dementia seen as problemsproblems

Minimal warehousing: people with Minimal warehousing: people with dementia as objectsdementia as objects

Drugs to control behaviourDrugs to control behaviour

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?

ImaginingImagining

Prompts for imagining:Prompts for imagining:

life historylife history

family/friendsfamily/friends

relationshiprelationship

and and

religious beliefsreligious beliefs

Imagining a different future but is this Imagining a different future but is this wishful thinking? wishful thinking?

What could a Christian What could a Christian response add to care of response add to care of

those living with dementia?those living with dementia? Is their any Good News for these, the least of Is their any Good News for these, the least of

my brethren?my brethren?

If it is possible for carers to recognise and If it is possible for carers to recognise and relate to a person with dementia even when relate to a person with dementia even when they cannot enjoy rational conversations, they cannot enjoy rational conversations, how much more will God – who sees beyond how much more will God – who sees beyond the mind and into the heart – do so.the mind and into the heart – do so.

Goldsmith: ‘dementia confronts us with the Goldsmith: ‘dementia confronts us with the reality of human love and the unconditional reality of human love and the unconditional love and acceptance of God’. (2004:192)love and acceptance of God’. (2004:192)

Alzheimer’s can steal memories, it can Alzheimer’s can steal memories, it can steal personalities, it can steal bodily steal personalities, it can steal bodily functioning, but it must not be allowed to functioning, but it must not be allowed to steal the human spirit.steal the human spirit.

Being present in the moment is not enoughBeing present in the moment is not enough

Imagine the possibility of future Imagine the possibility of future flourishingflourishing

Caring for the person Caring for the person through creative imaginingthrough creative imagining

A future transformed through respect and A future transformed through respect and relationshiprelationship

‘ ‘Here I am known not only for what I am, Here I am known not only for what I am, but also for what I have been and who I but also for what I have been and who I may yet become’ (Hudson 2008:93)may yet become’ (Hudson 2008:93)

From the perspective of Kingdom valuesFrom the perspective of Kingdom values

A re-imagining of the person that enables A re-imagining of the person that enables care that is truly person-centred care that is truly person-centred

BibliographyBibliography

Bryden. C. (2005) Bryden. C. (2005) Dancing with DementiaDancing with Dementia. London:Jessica . London:Jessica KingsleyKingsley

Douglas. M. (1986) Douglas. M. (1986) How institutions thinkHow institutions think. New York: . New York: Syracuse University PressSyracuse University Press

Gidley. I & Shears. R (1988) Gidley. I & Shears. R (1988) Alzheimers: What it is, how to Alzheimers: What it is, how to cope.cope.

London: Unwin Hyman LtdLondon: Unwin Hyman LtdGoldsmith. M. (2004) Goldsmith. M. (2004) In a Strange LandIn a Strange Land. Southwell:4M . Southwell:4M

PublicationPublicationHudson. R. (2008) ‘Ageing and the Trinity’ In Jewell (Ed) Hudson. R. (2008) ‘Ageing and the Trinity’ In Jewell (Ed)

Ageing, Spirituality and Well-beingAgeing, Spirituality and Well-being. London: Jessica . London: Jessica Kingsley PublishersKingsley 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 . London: Routledge & Kegan Paul& Kegan Paul

Post. S. (2005) ‘Respectare: moral respect for the lives of Post. S. (2005) ‘Respectare: moral respect for the lives of the deeply forgetful. In Hughes et al (Eds) the deeply forgetful. In Hughes et al (Eds) Dementia: Dementia: mind, meaning and the personmind, meaning and the person. Oxford:Oxford University . Oxford:Oxford University PressPress