Dementia in People With Intellectual Disability

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Dementia in People With Intellectual Disability

• Diana Kerr
• Centre for Research on Families and Relationships
• University of Edinburgh

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The Good News
People with a learning disability, like the
rest of us, experience increased longevity.
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Soon most people with a learning disability
will be aged over forty
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The Bad News
Despite demographic changes within the
population of people with a learning disability
our services are not ready.
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We must SEE the ageing population if we
are going to respond.
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Ageing brings with it the illnesses and
conditions of older age. One of these is
dementia.
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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 Downs
• 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).

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What is Dementia ?
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Dementia Is an Umbrella Term Used to
Describe a Wide Variety of Disorders of the of
the Brain.
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Types of Dementia
Alzheimers
AIDs Related
CJD
Head Injury Associated
Alcohol Related
Vascular (Multi-Infarct)
Frontal Lobe Dementia e.g. Picks
Lewy Body's
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• 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

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What Is Alzheimers 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.

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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.

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Story

• Me and my 3 children
• The money
• The plastic bank card
• Stress

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So

• Never stress a person with.
• Dementia.

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What is the experience of dementia?
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Exercise

• Where are you now?
• What are you doing?
• Where are you going when this event is finished?

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What Did You Do?

• Used recent memory.
• Used immediate memory.
• Used information from the environment.

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What is the impact on people with Downs syndrome?
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• By the age of forty nearly everyone with Downs
  syndrome will have developed the plaques and
  tangles of Alzheimers type dementia.

• Linked to the presence of 3 chromosome 21.

• This chromosome is implicated in the
• production of beta amyloid protein

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Prevalence Rates Downs Syndrome and Alzheimers
Disease

• 30-39 years
  2
• 40-49 years
  9.4
• 50-59 years
  36.1
• 60-69 years
  54.5
• ( Prasher 1995)
• 30-39 years
  3
• 40-49 years
  10
• 50-59years
  40
• (Holland 2000)

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Progress of the Condition

• About 30-40 years earlier than general
  population.
• Often more rapid progress.
• Between diagnosis and death for people with
  Downs syndrome- 3-5 years.

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Amongst people with learning disability for
reasons other than Downs syndrome. About 10
years earlier.
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What are the things that you need to look for if
you think someone with an intellectual
disability has dementia?
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• 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
•    

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• 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 ,
  apparentlywanders about, cannot find the toilet
  or their bedroom,wakes at night thinking it is
  time to get up.

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• 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.

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Many of these may be present already. It is the
change and deterioration that indicate the
possibility of dementia.
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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 Downs
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 27609-616 Kerr D and
Innes M ( 1999) What is Dementia? A booklet
about dementia for Adults who have a learning
disability.Downs Syndrome Association Scotland