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, Londonituffrey@sgul.ac.uk

Dr Karen WatchmanAlzheimer Scotland Lecturer in Dementia,

University of the West of ScotlandKaren.Watchman@uws.ac.uk

www.pcpld.org