Talking to individuals with Down syndrome about their diagnosis of
dementia
Forthcoming Book - 2014
Chapter 11:
Sharing the diagnosis of dementia: breaking bad news to people with a learning disability
Irene Tuffrey-WijneKaren Watchman
Breaking bad news
Tuffrey-Wijne, 2012
Preparation Warning shot
Break news in small pieces
Follow up information
Typical process (without cognitive impairment)
Background (Past):
Foundation of knowledge
Present:
Framework of knowledge
Future
Doctors make ill people better
I don’t want to get out of my chair
I won’t get better
When people get old they get forgetful
I am confused. I won’t be able to go back to work anymore.
My mum had dementia and she died
I like looking at my photographs
I am going to hospital tomorrow
I used to live with my Dad before I got my own flat
I am scared walking across the floor
I don’t want to go to the day centre next week
Framework of knowledge
Tom• Received diagnosis • Increasingly confused ‘my
head has gone wrong’• Mum has terminal cancer
– he doesn't know• Emergency change in
accommodation • Further changes ahead• How can Tom be
supported to understand these changes?
I have always lived with Mum
and I like it
Mum looks after me
Mum needs me, I help her
My sister left home to get
married
I feel safe with Mum
Mum has been in bed a lot
I have a brother and sister but don’t
see them much
My head has gone wrong
I stopped going to the shop because I
gave the wrong money
Tom’s background knowledge
I find it difficult to make the tea
I don’t like this house
Mum is in hospital
I am in the wrong house
I don’t know who the people are in this house
I want to be with Mum
I forget things
I am frightened I am upset
My brother and sister are
coming to visit
I like that nurse
I am confused
Tom’s present knowledge
Tom’s understanding of the future
Things will be the same as
before
I will go home soon
Mum will come home soon
Mum and I will live together
forever
Information to add
Yes you miss living with your
Mum
She is very ill
You are correct, your ‘head is not right’ (using Tom’s own
words)
Mum is not going to get
better
Right now it is not possible to
live at home
You will need extra help because your ‘head is not right’
Tom• Initial reluctance from brother and sister• Mum died in hospice after regular visits from
Tom • Tom was supported to attend her funeral• Moved to smaller group home with higher staff
ratio and night time provision • Continued to talk about his head not working
which his peers could also relate to and support• Staff consistency and knowledge of Tom’s
framework of understanding proved essential
Challenges
• Provision of appropriate post-diagnostic support
• UK dementia strategies say everyone is entitled to know of their diagnosis
• Need to share diagnosis in appropriate format and within persons current framework of understanding
• Further evidence needed and testing of model
Thank you
Dr Karen Watchman, Alzheimer Scotland Lecturer in Dementia, University of the West of Scotland
Email: [email protected]
Twitter: @karenwatchman
Web: www.learningdisabilityanddementia.org
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