Complex issues in dementia for
adults with learning disability;
breaking bad news, capacity and
best interest decisions.
Natasha Patel, CT3
Samantha Riches, principal clinical psychologist
Ba Min Ko, ST5
Lambeth MHLD
RCP/BPS Dementia Guidance
Epidemiology:
• People with intellectual
disabilities have a higher risk of
developing dementia compared
to the general population, with a
significantly increased risk for
people with Down’s syndrome
and at a much earlier age.
• Life expectancy of people with
Down’s syndrome has increased
significantly and the number of
older people with Down’s
syndrome has been increasing.
• The incidence and prevalence of
Down’s syndrome is relatively
stable.
Dementia Prevalence by age
Prospective assessments – should we
or shouldn’t we?
• The evidence does not currently indicate a need for
prospective screening for people with intellectual
disabilities without Down’s syndrome.
• Screening for people with Down’s syndrome needs to be
justified in terms of likely gain, the demands placed on the
service, and there needs to be consideration of the issue of
informed consent.
• Some services may decide against it for reasons of
intrusion, commissioning intentions and/or resource
limitations.
• Apparent changes in scores on cognitive assessments do
not in themselves indicate dementia but do require further
investigation.
Background
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48 year old
Down’s syndrome and mild LD
Supported accommodation
Parents deceased, 2 sisters, 1 brother
First referred in 2008 to OT personal safety
group
• Referred in 2010, support workers concerned
about short term memory
Past psychiatric and medical
history
• 1999 – forgetful, referred to psychiatry,
diagnosed depression. Resolved without
treatment
• Neutropenia
• Gout
Initial assessment
• From Wayne – unsure why referred, reported
forgetting to put watch on or take glasses out
• Support worker – 6-8/12 hx of forgetfulness,
slower walking, disorientated. Presentation
fluctuates
• Sister - slowed up in his cognitive processing
and motor skills in the last 6-8 months,
quieter
Initial assessment
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MSE – unremarkable
No significant physical health concerns
Bloods – neutropenia ? Cause
MRI head/neurology review - previous significant
hypoperfusion
• No medication, NKDA
• DLD - cognitive scores: 24 (problems reported in ST
and LT memory, orientation. ocial scores: 9.
• DSQuid – 16
Local Dementia Protocols
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Borough specific pathways – GSTT/SLaM
Regular Dementia pathway meetings
Dementia case coordination
Provider training:
– Estia
– Bespoke
Assessment Process
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‘Trigger’ questions – aim for multi-disciplinary
Consider NTG-EDSD (vs. DSQIID)
Physical health checks
Baseline Direct & indirect assessment:
– Psychology – CAMDEX-DS
– OT – AMPS
• Discussion at Dementia pathway meetings
• Timescale for follow ups agreed
• Clinical psychologist &/or psychiatrist, plus key
disciplines involved, review MDT assessments and
arrive at diagnosis.
National Task Group –
Early Detection Screen for Dementia
See http://aadmd.org/ntg/screening
Other possible reasons
for cognitive decline
• The common differential diagnoses for individuals with
Down’s syndrome presenting with loss of skills are
depressive illness, sensory impairments (hearing or visual),
hypothyroidism, obstructive sleep apnoea and dementia.
• Sometimes conditions can co-exist.
• Do not forget about the following causes of apparent
functional decline as these are often missed:
– iatrogenic causes of cognitive impairment particularly when the
individual is taking multiple medications,
– impact of the environment particularly in relation to
occupational deprivation and under stimulation,
– impact of abuse on the individuals with ID.
Wider role psychiatry / CPN
• Rule out mental health issues
• Confirm final diagnosis to GP & recommend
medication
• Review medication as required
• Psychiatrists are often the professional who
make the diagnosis explicit to the
family/carers
Follow-up
• 6/12 follow-up
• Remained stable until Feb 2014
– Slower in speech and movement
– More forgetful
– Behavioural changes: aggressive towards other
residents
– Deterioration in all areas of CAMDEX-DS
• Diagnosis of Alzheimer's dementia made
• Recommended Donepezil
• WB assessed to not have capacity
Follow-up
• Oct 2014 started donepezil 5mg OD
• Dec 2014 dose increased to 10mg OD, no SE’s
reported
• Feb 2015 no deterioration in cognitive
function, no SE’s.
– Sister keen to stop as no improvement
– Feels causing depression, no affective symptoms
on review
– Agreed to continue but not increase for further
3/12 then stop if no improvement
• Medication stopped May 2015, discharged.
Breaking the news
(from RCP/BPS guidance)
• People with intellectual disabilities, their families and carers need to be
given opportunities to understand the nature of the intellectual disability
and information about any associated health risks from an early point in
their life and particularly from transition to adulthood onwards.
• People with intellectual disabilities need to be told about their diagnosis
of dementia and given ongoing opportunities to understand their
diagnosis and their experience of dementia.
• Family members and carers need to be informed about the diagnosis and
involved as much as possible in support and management plans and, as
appropriate, be given opportunities for education and training.
• The person’s peers and friends are also important people to involve in
giving information about the diagnosis and this will both help them cope
and help them support the person affected by dementia.
• People with intellectual disabilities and their families and carers may need
psychological interventions to enable them to feel emotionally supported
and to begin to understand the diagnosis.
Recent experience in Lambeth
• Family members / carers disagreeing with
results of assessment
• Concerns regarding medication side effects
• Worries about ‘best interest’ process
Mental Capacity Act
 A turning point in the statutory rights of people
who may lack capacity.
 Lack of capacity may be because of LD, ASD,
senile dementia, brain injury or temporary
impairment.
How was it developed?
 It was quite a lengthy process – long process of consultation
 1989 - the law commission undertook a study – decision making on
behalf of people who lacks capacity.
 1995 – recommended there should be a single comprehensive piece of
legislation making provisions for people who lack capacity
 1997 – Green Paper
 1999 – White Paper
 June 2003 – Draft Mental Incapacity Bill
 November 2003 - Pre-legislative scrutiny – widespread support
 June 2004 – MCA Bill introduced
 2005 – In practice
The five principles of the Mental Capacity Act
1) Presumption of capacity
2) Attempt all practical steps to help the patient
understands
3) Unwise decision does not mean lack of
capacity
4) Best interest
5) Least restrictive
MCA assessment
1) UNDERSTAND – pros and cons of decision in
question
2) RETAIN – information for a reasonable length
of time
3) WEIGH – all the information given
4) COMMUNICATE – the decision
Understanding the patient’s safety issues for
people with ID
 National safety agency, 2004
 Informed consents were not taken properly
 Consents were being sought from a carer rather
than taking time to gain consent from people
with ID
Death by Indifference; MCA 2007
 Look into the death of 6 cases of ID
 Areas to be improved which include MCA
 Made a number of recommendations
- There should be more training for NHS staff around
the MCA
One of 6 Cases
 EM – severe ID + challenging behaviour + very poor
communication
 Died of cancer at the age of 26
 Hospital delayed treatment – as she would not cooperate
with the treatment – could not consent to treatment
 In pain all the time
 Repeated attendance to hospital
 Mother gave notice to the team via solicitor
 Took them to High Court – only then treatment started
One of 6 cases
 Very detrimental and distressing to the patient
and family
 This distressing experience could have been
avoided or reduced if the professional had a
better understanding and appropriate use of
MCA
Six Lives; Progress Report on Healthcare for
people with ID, July 2013 - DOH
 After the inquiry into the death of the six patients with ID,
DOH monitored the progress of the recommendations which
included MCA
 Reported in 2009, 2010, 2013
 Doing well – People in the hospitals do what the law says in
the MCA. Involving people with LD and their families/carers.
 Not doing well – People with LD are not given information in a
way they can understand.
 People are not included in decision about their care.
 The Mencap survey showed that some of the
recommendations were better. People were being asked to
make decisions when they are able to. But this did not always
happen.
A Population based Study: The Confidential Inquiry into
Premature Death of people with ID in UK – Dec, 2013
 Causes of death are avoidable
 Amenable to change with good quality of care
 More common in people with ID than general
population
 Contributory factors – problems in
Advanced care planning
Adherence to MCA
Living in inappropriate accommodations
Adjustment of care as needs changed and carers feeling
not listened to
Consistent pattern in the findings
A Population based Study: The Confidential Inquiry into
Premature Death of people with ID in UK – Dec, 2013
 A number of Recommendations
 MCA advice – needs to be easily available 24 hr
a day.
 MCA training and regular updates - to be made
mandatory for staff involved in the delivery of
health or social care.
Post-legislative Scrutiny on MCA (2005)–
2013 - 2014
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House of Parliament established a committee in May 2013
Whether the act is working as the Parliament intended
15 Public evidence hearings with 61 witnesses
A large number of written submissions – 216 written
evidence, 206 were accepted
 Delegation of the committee met adults with ID
 Attended a special meeting of (Forget-Me-Not, a peer
support and advocacy group for people with dementia in
East Kent)
 Visited Court of Protection
Results
 The implementation of MCA has not met the expectation.
Lack of adherence to different levels or stages of MCA.
 Lack of awareness
 Lack of understanding
 Lots of people and services do not follow it.
 Many services think people can’t make decisions when
they can.
 They do not check to see if someone can make a decision.
 The checks that are done are not very good
 People do not get support to make their own decisions.
 Health services still think they know best for people they
think cannot make their own decisions
Complex issues…
• Breaking bad news…
• Do we talk to service users ourselves? Expect
families or carers to do so?
• Capacity to consent to treatment
• Best interest decisions about care
• What if we don’t all agree?!