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Learning Disability and Dementia Dr Karen Watchman Alzheimer’s Society Research Conference
@karenwatchman
Agenda
• Supporting Derek and background information (Down’s syndrome)
• Strategies for raising awareness among families and staff
• Talking about dementia – Jenny’s Diary
Supporting Derek
Risk factor
Risk in people with Down’s syndrome:
• 10% in 40s
• 30%+ in 50s
• 50%+ aged 60 and over
Risk in people with other types of learning disability:
• 13.1% aged 60+
• 18.3% aged 65 and older
Risk in older people without learning disability:
• 1 in 50 people between the ages of 65 and 70
• 1 in 5 over the age of 80
Changes
• Loss of daily living skills
• Difficulty with kerbs
• General inactivity
• Loss of sociability
• Increased irritability
• Loss of previously enjoyed activities
• Stop spontaneous communication
• Confusion
• Loss of understanding of basic instruction
• Increased walking for no obvious reason
• Short-term memory loss
Diagnosis
• Diagnosis difficult
• Typical tests not suitable
• Baseline assessment
• Diagnosis often not shared
• National Task Group (NTG-EDSD), USA tool adapted for UK use
Misdiagnosis
• Physical
• Undiagnosed pain
• Emotional or grief
• Social
• Effects of medication
What is different? What is the same for all? • Age • More assumption of dementia • Diagnosis • Life history • Progression • Wide range of existing
conditions • Existing communication
differences • Family situation • Where people live • Existing capacity • Experience of planning ahead
• Discrimination • Need for support and information • Need to ‘see the person’ • Cognitive changes • Environmental cues • Social and medical interventions • Stigma • Potential for over use of
medication • Increased health intervention • Need to plan ahead • Need to keep active • Terminal condition • Need for pain detection
Down’s syndrome and dementia True or false?
Damage to the frontal lobe of the brain can cause changes in personality
People with Down’s syndrome will
typically experience dementia in a similar
way to each other
Most babies with Down’s
syndrome are born to older
mothers
There are two different types of Down’s syndrome
True or false?
Damage to the frontal lobe of the brain can cause changes in personality
People with Down’s syndrome will
typically experience dementia in a similar
way to each other
Most babies with Down’s
syndrome are born to older
mothers
There are two different types of Down’s syndrome
False
How do we talk to people with a learning disability about a health diagnosis?
www.learningdisabilityanddementia.org
www.breakingbadnews.org
Jenny’s Diary
Jenny
Anna
(Jenny’s friend)
Linda
(Jenny’s sister)
George
(Jenny’s boyfriend)
Jenny’s Diary – Part 1
Monday
We can help:
Dementia can make it harder for Jenny to understand rooms or buildings that she used to
know very well. We can make it easier for her at the café by using photographs, pictures
and signs.
Way Out signs or pictures should be on the inside of the toilet door at an appropriate
height to help Jenny find her way back to the café.
If Jenny stops working at the café she may still like to go as a customer so that she can
see her friends.
Not all changes are because of dementia. If Jenny gets more confused very quickly this is
probably caused by an infection, or not drinking enough water. It is not likely to be
because she has dementia.
Just like all of us Jenny has good and bad days.
Part 2 Talking to Jenny about her diagnosis
Part 3 Talking to George about the changes that Jenny is experiencing
Funded by Alzheimer’s Society Dissemination grant number 220
Summary
• We have come a long way
• More awareness of dementia BUT much more awareness of medical and social interventions
• Still need more support to maintain friendships and relationships
• Still need more awareness to enable difficult conversations with people with a learning disability
Thank you
Dr Karen Watchman Senior Lecturer in Dementia
University of the West of Scotland [email protected]
Professor Irene Tuffrey-Wijne
Kingston University & St Georges University of London [email protected]
Sam Quinn, Research Assistant/PhD Candidate
University of the West of Scotland
