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Engaging with Dementia
Affirming Ministry
Margaret A Goodall. Guildford October 2012
[email protected]
More than body, brain and
breath
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)
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.
Confusion
From
pleasantly
muddled
To
What feels like
chaos
The main types of dementia:
of the more than 200 types

Alzheimer’s disease

Vascular dementia

Dementia with Lewy Bodies

Frontal lobe dementia
Stages along the way
 early
stage: loss of short term memory,
confusion,
 middle
 end
stage: more support needed with
daily living
stage: increasing physical frailty
So where is the person?
 In
a strange land
 Dead
or alive?
Social malignancy / social death
So who do we see?
Old culture of care
 People
with dementia seen as problems
 Minimal
warehousing: people with
dementia as objects
 Drugs
to control behaviour
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?
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?

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)
•
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)
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?

‘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.
Making meaning

Be in the present moment
be open and be with

Learn their dreams
seize the day

Build on life history
the memory box
 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.
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?
It’s more than words: communicate!
Communication is : the smile on your face
: a friendly approach
: listening thoughtfully
: the warmth in your voice
: a gentle touch
Communication is only 3% the words we use
What can I do?

Give Loving Attention:
the magic moments of visits and the feelings
remain

Use the senses to access memory and feelings

Enable worship through signs, symbols and
rituals
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
Access the Christian Story:
‘Tell me the old old story’
 Tell
me simply
 Tell
me slowly
 Tell
me often
 Tell
me always
Worship
Isolation : social malignancy
Being together in ‘family’.
A belonging or being at home
Use symbols to cue worship
Familiar hymns and songs
especially those
with choruses
Familiar prayers
 What
symbols, hymns, familiar readings
and prayers do you think might be useful
in your situation?
Can good care change who we
see?
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Things to remember

Feelings and emotions don’t go

Visits do matter

Eye contact is vital

Beware the assumptions we make

Avoid sensory overload
Don’ts of Dementia Care
 Don’t
argue
 Don’t
explain
 Don’t
reason
 Don’t
give yourself a hard time
Our Christian hope
 ‘Strength
for today …
…
and bright hope for tomorrow’
…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.
Great is your faithfulness
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)
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
Websites:
 Methodist Homes
www.mha.org.uk
 Christian
Council On Ageing (CCOA)
www.ccoa.org.uk
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