Dementia in People With LD - DR Trevor Chan and DR Vicky Turk

Dementia in People with Learning
Disabilities
Dr Trevor Chan
Locum Consultant Psychiatrist in Learning
Disabilities
Dr Vicky Turk
Consultant Clinical Psychologist, Learning
Disabilities
Overview
• Context
• Challenges
• Current standards
• Local services
• Pharmacological intervention
Why is dementia in learning
disability important?
• Increasing life expectancy in people with LD
• Prone to develop age-related disorders such as

dementia
• Well recognised association between Down

syndrome and Alzheimer’s
Findings from key studies
Dementia rates in normal population:
60 - 65 = 1%
80 - 85 = 13%
90 - 95 = 32%
Dementia rates in Down syndrome:

40 - 49 = 9.4%
50 - 59 = 36.1%
60 - 69 = 54.5%
• Average onset 54 years
• Average duration from dementia to death 4.6 years
(Prasher, 1995)
People with LD without Down
syndrome
• Dementia also about 4 times more common as
compared to general elderly population
• Prevalence
– Age ≥ 60 = 13%
– Age ≥ 65 = 18%
(Cooper, 1997, Strydom et al, 2007)

Difficulty in diagnosing dementia in
LD
• HOW CAN YOU TELL?
Their baseline functional levels are all different

– Different levels of LD
– Premorbid cognitive deficits
– Diagnostic overshadowing
Pre-morbid cognitive deficits
• Standard assessments e.g. MMSE not appropriate
• Can’t rely on cross-sectional assessment
• Need to more explicitly look for change from an

individual’s own baseline
– Value of baseline cognitive screening?
• Reliance on informant report, but

• Reliable informant history often not available
Atypical presentation
• Often don’t complaint of memory problems
themselves
• Functional/ADL decline
• Behavioural and emotional change
– Rather than memory decline in early stages
(Strydom et al, 2007; Jamieson-Craig et al, 2010)
• Onset of epilepsy sometimes 1st sign

Moderate to severe LD
• Limited communication skills
• More difficult for carers to notice and
clinicians to interpret change
• ‘Floor effect’
Mental, physical and social co-morbidities
E.g.
– Sensory impairment
– Hypothyroid
– Depression
– Poor epilepsy control
– Poor pain management
– Major live events e.g. poor health of carer
– Abuse
» MIS-DIAGNOSIS!
Diagnostic uncertainty
• Difficult to ascertain whether dementia
or not in early stages in many cases
• Burden of mis-diagnosing vs. burden of

late diagnosis
Current ‘gold standard’ in diagnosis and
assessment
• Recently published Joint British Psychological
Society and Royal College of Psychiatrists guidelines
(CR155)
http://www.rcpsych.ac.uk/files/pdfversion/cr155.pdf
• Multidisciplinary approach to assessment and

management
– Early: nursing, psychology, psychiatry, OT, care
management
– Late: SALT, nursing, care management, physio
Current service configuration
• Where should referrals go?
– Mainstream old age mental health / memory clinics?
– LD teams?
• Lots of variations between boroughs
• Care pathways not yet established in many, but are

developing
• Do check with local services if uncertain

Mainstream vs. Specialist service
• Mainstream service • Specialist service
– Normalisation – Expertise in LD
– Better access to wider – More coherent and
range of diagnostic continuity with rest of
services LD care package
– May not have – More limited access to
expertise in LD diagnostic services
– Lack of critical mass:
more difficult to justify
business case and for
clinicians to build up
same level of
expertise in dementia
Possible solutions
• Mainstream services with LD specialists
input
• Cross-borough specialist LD dementia

service
Oxleas developments
• Reconfiguration work – two dementia pathways
- Diagnostic / early dementia
- Mid/late stage
• NICE guidelines audit
• Training
• Care mapping
• Development of user materials
• Carers support group
• Transfer protocol with older person’s services
Bexley
• Monthly ageing issues clinic.
2008 -2009. 26 people discussed - 20 with Down
syndrome
10 Probable dementia (4 since died)
1 possible dementia
5 complex issues
10 unlikely/unknown
• Database (Down’s Syndrome LD and LD)
• Many baselines present
• MDT Care pathway
Greenwich
• Mainstream memory clinic had not
accepted somebody with LD
• No age-related clinic within CLDT
• Database
• Different aspects of dementia care
provided by different disciplines
• Working group developing care pathways
Bromley
• Monthly clinical meeting within CLDT
• Different aspects of dementia care

provided by different disciplines
Acetylcholinesterase inhibitors
• No evidence to suggest they should not be used in LD
• More difficult to determine moderate dementia – can’t

use MMSE!
• LD psychiatrists now included as specialists in NICE

guidelines
• Shared care protocol

Use of neuroleptics for
behavioural difficulties
• Do avoid if possible
• Increased risk of CVA with atypical

neuroleptics
• Risk-benefit balance
References
British Psychological Society Division of Clinical Psychology & Royal
College of Psychiatrists Faculty of Learning Disabilities (2009)
Dementia and People with Learning Disabilities. Guidance on the
assessment, diagnosis, treatment and support of people with learning
disabilities who develop dementia (CR155).
http://www.rcpsych.ac.uk/files/pdfversion/cr155.pdf
Cooper, S. A. (1997) High prevalence of dementia among people with

learning disabilities not attributable to Down’s syndrome. Psychological
Medicine. 27. 609 – 616.
Jamieson-Craig, R., Scior, K., Chan, T., Fenton, C., & Strydom, A.
(2010) Reliance on carer reports of early symptoms of dementia among
adults with intellectual disabilities. Journal of Policy and Practice in
Intellectual Disabilities. 7(1). 34-41.
References
Prasher, V. (1995) Age-specific prevelence of thyroid dysfunction and
depressive symptomatology in adults with Down’s syndrome and
dementia. International Journal of Geriatric Psychiatry. 10. 25-31.
Strydom, A., Livingston, G., King, M., & Hassiotis, A. (2007)

Prevalence of dementia in intellectual disability using different
diagnostic criteria. British Journal of Psychiatry. 191. 150 -157.

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Dementia in People with Learning

• Prone to develop age-related disorders such as

• Well recognised association between Down

Dementia rates in Down syndrome:

(Cooper, 1997, Strydom et al, 2007)

• HOW CAN YOU TELL?

Their baseline functional levels are all different

• Can’t rely on cross-sectional assessment

• Need to more explicitly look for change from an

• Reliance on informant report, but

• Onset of epilepsy sometimes 1st sign

• Burden of mis-diagnosing vs. burden of

• Multidisciplinary approach to assessment and

• Lots of variations between boroughs

• Care pathways not yet established in many, but are

• Do check with local services if uncertain

• Cross-borough specialist LD dementia

• Different aspects of dementia care

• More difficult to determine moderate dementia – can’t

• LD psychiatrists now included as specialists in NICE

• Shared care protocol

• Increased risk of CVA with atypical

Cooper, S. A. (1997) High prevalence of dementia among people with

Strydom, A., Livingston, G., King, M., & Hassiotis, A. (2007)

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