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.

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). We must see dementia within the context of ageing.

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.

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 years 2% years 9.4% years 36.1% years 54.5% ( Prasher 1995) years 3% years 10% 50-59years 40% (Holland 2000)

Progress of the Condition About 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.

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, Cooper S A (1997) 'High prevalence of dementia amongst people with learning disabilities not attributed to Down's syndrome'. Psychological medicine 27: 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