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International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD), European Congress, Vienna, 2014
Citation preview
Sharing the diagnosis of dementia: breaking bad news to people with
intellectual disabilities
Irene Tuffrey-Wijne & Karen Watchman
15th July 2014
Agenda
• Challenges in sharing a diagnosis of dementia
• Typical process of breaking bad news• What is different about ID?• Presenting a framework of knowledge • Tom
Challenges • Provision of appropriate post-
diagnostic support• UK and European dementia
strategies say everyone is entitled to know of their diagnosis
• 1 year post-diagnostic support guaranteed in Scotland
• Need to share diagnosis in appropriate format and within persons current framework of understanding
Existing models
• Disclose– Warning shots– Step by step
information
• Follow up– Respond to
emotions– Answer questions– Make a plan
• Prepare– Find out what
patient knows– Find out how much
wants to know– Get the right
setting
Preparation
Warning shot
Break news in small pieces
Follow up informatio
n
Typical process (without cognitive impairment)
Linear process, often a singular event with 1 bearer of bad news and 1 recipient.
Breaking bad news
Tuffrey-Wijne, 2012, http://www.breakingbadnews.org
Making sense of bad news
This will depend on:• Intellectual capacity and understanding• The people involved and their attitudes
towards disclosure• The support available to all involved
Breaking bad news is a process, not a single event – build knowledge gradually
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• Diagnosed with
dementia but not told• 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 liked lived with Mum
Mum looked after me
Mum needs me, I help her
My sister left home to get
married
I felt safe with Mum
Mum was in bed a lot
I have a brother and sister but
don’t see them much
My head has been going
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 these people are
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’
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 he and his peers could relate to
• Staff consistency and knowledge of Tom’s framework of understanding proved essential
Thank you
Dr Irene Tuffrey-WijneSenior Research Fellow
Kingston University & St Georges University, [email protected]
Dr Karen WatchmanAlzheimer Scotland Lecturer in Dementia,
University of the West of [email protected]
www.pcpld.org