Dementia in People With
Intellectual Disability
Diana Kerr
Centre for Research on Families and
Relationships
University of Edinburgh
The Good News
People with a learning disability, like the rest
of us, experience increased longevity.
Soon most people with a learning
disability will be aged over forty
The Bad News
Despite demographic changes within the
population of people with a learning
disability our services are not ready.
We must SEE the ageing population if
we are going to respond.
Ageing brings with it the illnesses and
conditions of older age.
One of these is dementia.
We must see dementia within the context
of ageing.
•If someone has dementia they are likely
to have some of the other conditions of older age e.g
arthritis, osteoporosis, cataracts,hearing impairment etc
•This applies equally to people with Down’s
syndrome who may develop the condition in
their forties.
• Some of these conditions may be painful.( Responding
to the pain experiences of people with a learning
disability and dementia. Kerr et al (2006)Joseph
Rowntree Foundation).
What is Dementia ?
Dementia Is an Umbrella Term Used to
Describe a Wide Variety of Disorders of the
of the Brain.
Types of Dementia
• A syndrome characterised by a decline in cognitive
function and memory .
• Of a chronic or progressive nature.
• Apraxia (Loss of ability to from purposeful
movements,increasing difficulty undertaking complex
tasks)
• Agnosia (Loss of ability to recognise objects, either by
name or sight)
• Aphasia ( Loss of ability to express language or to
understand the spoken word.)
•
It is terminal
What Is Alzheimer’s Disease?
• The single most common cause of dementia in
later life.
• Progressive and gradual decline. In general
population over 8-15 years.
• Presence of ‘plaques’ and ‘tangles’ in the brain.
• The presence of beta amyloid protein.
• Characterised by cerebral atrophy.
Early Changes
• Affects the area of brain that, amongst other
things, has our short term memory and
memory for words.
• People cannot find the word for a common
object E.G. ‘Shoe’, becomes ‘that foot
thing’ , or a ‘car’, ‘ the thing with wheels.’
• They may walk into a room and forget why
they are there.
Story
•
•
•
•
Me and my 3 children
The money
The plastic bank card
Stress
So……
Never stress a person with.
Dementia.
What is the experience of dementia?
Exercise
• Where are you now?
• What are you doing?
• Where are you going when this event is
finished?
What Did You Do?
• Used recent memory.
• Used immediate memory.
• Used information from the environment.
R e fe re n ce
B u ijsso n H (2 0 0 5 ) T h e S im p licity o f D e m e n tia L o n d o n JK P
T h e m e m o ry o f a 7 7 -y e a r-o ld w ith ou t d e m e n tia -th e sh e lf o n w h ich th e d ia rie s co n ta in in g
th e m e m o rie s o f h is e n tire life a re sta ck e d is still in ta ct
What is the impact on people with Down’s
syndrome?
• By the age of forty nearly everyone with
Down’s syndrome will have developed the
plaques and tangles of Alzheimer’s type
dementia.
•Linked to the presence of 3 chromosome 21.
•This chromosome is implicated in the
production of beta amyloid protein
Prevalence Rates Down’s Syndrome and
Alzheimer’s Disease
•30-39 years
•40-49 years
•50-59 years
•60-69 years
( Prasher 1995)
2%
9.4%
36.1%
54.5%
• 30-39 years
• 40-49 years
•50-59years
(Holland 2000)
3%
10%
40%
Progress of the Condition
• About 30-40 years earlier than general
population.
• Often more rapid progress.
• Between diagnosis and death for people
with Down’s syndrome:- 3-5 years.
Amongst people with learning disability for
reasons other than Down’s syndrome. About
10 years earlier.
C o m p arativ e R ates o f D em en tia D o w n ’s sy n d ro m e, I.D ., G en eral P o p u latio n
C ooper, personal
com m unication
What are the things that you need to look
for if you think someone with an
intellectual disability has dementia?
The following table provides a list of the most
commonly seen changes.
•
Loss of daily living skills( less able to compensate
than general population) e.g. dressing, washing, eating,
travelling.
•
Short term memory loss ( not as obvious as in
general population) e.g. things being lost. ‘Someone
stole my …’
•
Apathy and general inactivity e.g. lying down
and not taking part in things
• Loss of amenability and sociability e.g.Can appear
to be stubborn and antisocial , a withdrawal of spontaneous
communication.
• Loss of interest in favoured hobby e.g. Previous
interest in birds now gone!
• Disorientation and confusion e.g. Gets lost ,
apparently‘wanders about’, cannot find the toilet or their
bedroom,wakes at night thinking it is time to get up.
• Loss of comprehension e.g.Losses previous ability to
understand and find words
• Loss of ability to see 3D e.g. Stepping over changes in
colour
• Onset of seizures .These are thought to occur in people
with downs syndrome 2 ½ -3 years after the onset of the
dementia.They are not alert signs but are often the point at
which people become alerted and make a referral.
Many of these may be present already.
It is the
change and deterioration that
indicate the possibility of dementia.
Kerr D,Wilkinson H and Cunningham C (2006). Responding to the pain experiences
of people with a learning difficulty and dementia. Joseph Rowntree Foundation.
Buijssen H (2005) The simplicity of Dementia. London : Jessica Kingsley Publishers
Dodd, Kerr and Fern (2007) Down's Syndrome and Dementia Workbook for Staff.
DSA London
Chester and Bender (1999 p147) ‘Understanding Dementia :The man with the
worried eyes’. JKP London
Holland, A.J. Hon, J. Huppert, F.A., Stevens, V.F. Watson, P. (1998).
Population based study of prevalence and presentation of dementia in adults
with Down’s syndrome. British Journal of Psychiatry. 172, 493-498
Cooper S A (1997) 'High prevalence of dementia amongst people
with learning disabilities not attributed to Down's syndrome'.
Psychological medicine 27:609-616
Kerr D and Innes M ( 1999) What is Dementia? A booklet about dementia for
Adults who have a learning disability.Down’s Syndrome Association Scotland