The real dementia challenge Age UK November 2013

Scope How do we understand dementia? What are the controversial issues? What are the policy implications? NOT about –the global challenge of dementia –research on brain chemistry –carers

Understanding dementia a diagnosis of dementia is a life changing event –dementia is fatal, and there is no cure dementia is associated with age, but it is a disease, not an inevitable part of ageing diagnosis is based on behaviour –memory problems, mood changes, problems in communication and reasoning

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Dementia… is a permanent, progressive deterioration in brain structure and function involves a range of diagnoses –Alzheimer’s (62%), vascular dementia (17%) is not about losing your car keys –it’s about not knowing what they’re for when you find them

Some hot topics the numbers are changing does screening do more harm than good? dementia in minority ethnic groups the invention of mild cognitive impairment the views of people with dementia

Dementia numbers MRC Cognitive Function and Ageing Studies (CFAS) CFAS I (1998) provides the basis for all current policy and projections –including the AS drive for early diagnosis CFAS II (2013) changes everything –a rate of 6.5% rather than the expected 8.3% –214,000 (24%) fewer people with dementia than projected

CFAS II implications public health measures can reduce the prevalence of dementia –improved vascular health and education outweigh ageing, diabetes and obesity a role for all organisations for older people –what’s good for your heart is good for your head good news, but this doesn’t solve the issue –the numbers of people with dementia will still double in the next generation

Screening NICE and NSC recommend not screening –national policy is for early diagnosis –dementia director prefers timely diagnosis up to half of people with dementia are never diagnosed –the diagnostic journey averages 157 weeks CFAS II implies the value of health screening

Minority ethnic groups screening and minority ethnic groups are the instruments culturally appropriate? do people have access to health care? health inequalities affect risk of dementia –cardiovascular disease, hypertension, diabetes knowledge of migration history

Mild cognitive impairment MCI = memory loss without significant impact on daily living –more people with MCI progress to dementia than the matched general population BUT… a third of those with MCI improve after 2 years is this useful policy? –good for the heart and head?

People’s views pilot systematic review of 214 studies of the views of people with dementia a research group involving seven people with dementia three meetings to address –what should be included –what counts as quality –what are the initial themes

Today’s job: does it make sense? ‘I could shake myself for being so stupid’ ‘I lose my temper with myself about it’ ‘I feel stupid, a real nutcase’ It sometimes makes you angry with yourself

Today’s job: does it make sense? You try to live from day to day ‘I go from one day to the next because I never know what I'm going to have...’ ‘You just have to take what comes’ ‘Well I take it from day to day. I think well what is to be will be’

Today’s job: does it make sense? Sometimes people cope by avoiding social situations ‘I'm ducking out of conversations more’ ‘It feels like I'm insulting them by not remembering their name...I don't like it at all’

Identity work receiving a diagnosis is life changing it calls into question our core life plans and sense of self our society values sharp wits, and an agile mind people with dementia risk social exclusion and isolation

Involving people with dementia a new population of people living with dementia they will help us to change policy and practice they won’t accept being excluded Age UK can support and develop their voice…