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: Karen.Watchman@uws.ac.uk

Twitter: @karenwatchman

Web: www.learningdisabilityanddementia.org