Complex issues in dementia for adults with learning disability;

breaking bad news, capacity and best interest decisions.

Natasha Patel, CT3Samantha Riches, principal clinical psychologist

Ba Min Ko, ST5Lambeth MHLD

RCP/BPS Dementia GuidanceEpidemiology:•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

• 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

• 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

• Borough specific pathways – GSTT/SLaM• Regular Dementia pathway meetings• Dementia case coordination• Provider training:– Estia– Bespoke

Assessment Process• ‘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 consultation1989 - 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 capacity1997 – Green Paper1999 – White PaperJune 2003 – Draft Mental Incapacity BillNovember 2003 - Pre-legislative scrutiny – widespread supportJune 2004 – MCA Bill introduced2005 – In practice

The five principles of the Mental Capacity Act

1) Presumption of capacity2) Attempt all practical steps to help the patient

understands3) Unwise decision does not mean lack of

capacity4) Best interest5) 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 given4) 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 CasesEM – severe ID + challenging behaviour + very poor

communicationDied of cancer at the age of 26Hospital delayed treatment – as she would not

cooperate with the treatment – could not consent to treatment

In pain all the timeRepeated attendance to hospital Mother gave notice to the team via solicitorTook 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, 2013Doing 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 avoidableAmenable to change with good quality of careMore common in people with ID than general

populationContributory factors – problems in

Advanced care planningAdherence to MCALiving in inappropriate accommodationsAdjustment of care as needs changed and carers feeling

not listened toConsistent 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

House of Parliament established a committee in May 2013Whether the act is working as the Parliament intended15 Public evidence hearings with 61 witnessesA large number of written submissions – 216 written

evidence, 206 were acceptedDelegation of the committee met adults with IDAttended a special meeting of (Forget-Me-Not, a peer

support and advocacy group for people with dementia in East Kent)

Visited Court of Protection

ResultsThe implementation of MCA has not met the expectation.

Lack of adherence to different levels or stages of MCA.Lack of awarenessLack of understandingLots 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 goodPeople 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?!