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The real dementia challenge

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 t he global challenge of dementia research on brain chemistry c arers. Understanding dementia.

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The real dementia challenge

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  1. The real dementia challenge Age UK November 2013

  2. 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

  3. 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

  4. Text • Text • Text

  5. 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

  6. 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

  7. 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

  8. 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

  9. 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

  10. 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

  11. 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?

  12. 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

  13. 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

  14. 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’

  15. 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’

  16. 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

  17. 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…

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