The real dementia challenge

www.beds.ac.uk/goldbergcentre

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…



Documents

The real dementia challenge