Management of cognition and communication needs in dementia Dr Vanessa Raymont Consultant Psychiatrist and Honorary Senior Lecturer, West London Mental Health Trust and Imperial College

Dementia affects 700,000 in UK Predicted to double by 2037, tripling cost 1 in 3 over the age of 65 will develop dementia; by 2050, over 680 million new cases worldwide In the UK poor mental health costs £100b/year Growing evidence for risk factors: genetic, clinical and environmental: diabetes, cardiovascular disease, diet, obesity, depression So greater research emphasis on prevention

Overview of Presentation Dementia – an introduction –Clarification of terminology –Prevalence and incidence –Types of dementia and current treatments –Assessing cognition –Policies and initiatives –Current legal situation

Diagnosis of dementia In general – all criteria need DECLINE in cognitive symptoms, with memory loss plus (at least) one other domain Require functional decline Require absence of other possible aetiology

More than Cognition Behavioural –Withdrawn –Pacing –Agitated Neuropsychiatric –Depressed –Psychotic Delusions Hallucinations

Capacity An individual is considered to lack capacity to make a specific decision if they are: 1) unable to understand information relevant to the decision; or 2) unable to retain that information; or 3) unable to weigh up and use the information to make the decision; or 4) unable to communicate their decision. An individual only has to meet one of these four criteria to be considered to lack the capacity to make a decision.

Prevalence of Alzheimer’s Dementia Kurz A. Eur J Neurol 1998; 5(Suppl 4): S1-8 Wimo A et al. Int J Geriatr Psychiatry 1997; 12: Age (years) Prevalence (%) 1% 2% 4% 8% 16% 30% 50%

van der Flier and Scheltens 2005 JNNP

Dementia - epidemiology Alzheimer’s dementia50% Vascular dementia20% Mixed AD/Vascular20% Dementia with Lewy bodies5% –Antemorbid diagnosis correct in 70-80%

Alzheimer’s Dementia

Time 0 18months36months H Serial coronal MRI of mild AD

Vascular Dementia

Dementia with Lewy Bodies Lewy Body is an aggregation of mis-folded protein Associated with both Parkinson’s disease (when located in basal ganglia) and Dementia if in cortices Presents with fluctuating cognition, recurrent visual hallucinations and motor features of PD

Fronto Temporal Dementia Less common (<5%) Tends to affect younger patients – tends to come into contact with neurologists cf Psychiatrists

Assessing cognition The Mini Mental State Examination (MMSE) Scores of >=27/30 normal NICE guidance recommends treatment for mild-to- moderate Alzheimer’s disease (MMSE score 10–26) Sample questions: Orientation to time - ‘What is the date?’ Registration – ‘Listen carefully. I am going to say three words. You say them back. Ready? Here they are... apple [pause], penny [pause], table [pause]. Now repeat those words back to me.’ [Repeat up to 5 times, but score only the first trial.] Naming - ‘What is this?’ [Point to a pencil or pen.]

Other tests Addenbrooke’s Cognitive Examination Neuropsychiatric Inventory Geriatric Depression Scale Must be aware of poor attention, restlessness, prior education and cultural issues affecting performance

Current drug treatments AD - Acetylcholinesterase inhibitors (donepezil, rivastigmine, galantamine) plus memantine Depression/anxiety/agitation - antidepressants Psychotic symptoms/agitation - antipsychotics – extreme caution (associated with excess mortality) as well as specific problems in LBD

Other treatments Non pharmacological intervention for BPSD (Behavioural and Psychological Symptoms of Dementia) Addressing pain, fatigue, fear, constipation, dehydration, infections ABC Charts - Antecedents, Behaviour, Consequences Sleep hygiene Life stories Dementia-friendly environment Preventative measures (research)

National Audit Office Report 2007 Recognised the huge problems currently and in the future with dementia Advocated massive investment in care and research Head of the National Audit Office Sir John Bourn: For too long dementia has not been treated as a high priority. Todays report shines a light on how significant an issue dementia is and how much scope there is to improve the way in which people who suffer from dementia are treated. "Our rapidly ageing population means that costs for addressing dementia will continue to increase and, without redesign, services for people with dementia are likely to become increasingly inconsistent and unsustainable. Dementia can no longer be set aside. The issues raised in this report need to be addressed as a matter of urgency."

Other ‘policy’ Initiatives The Mental Capacity Act introduced Independent Mental Capacity Advocates (IMCAs) National Dementia Strategy 2009 RCPsych memory Clinic Accreditation CQUIN Targets and Policy Statements –e.g. use of antipsychotics in dementia NICE Quality Standard for supporting people to live well with dementia 2013 G8 Dementia Summit – December 2013 Dementia Friends From April users & carers have gain right to independent advocacy through Care Act

Three themes Improving public and professional awareness Early diagnosis and intervention –Better used term ‘TIMELY’ High quality care and support – includes ‘access to independent advocacy services if not fully able to present their own views’

Legal issues Mental Capacity Act allows decisions on people >16 who lack capacity, including physical treatments (v Mental Health Act); Advanced Decisions Deprivation of Liberty Safeguards (DoLS) since 2009; used to detain under MCA, urgent v standard Supreme Court Cheshire West decision (2014) has broadened definition for DoLS: ‘under continuous supervision and control and... not free to leave’; does liberty mean something different for a person who cannot take advantage of it? DoLS procedures ‘slow, expensive and ineffective’; House of Commons Health Committee called for urgent review