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Ageing and autism

Ageing and autism. Richard Mills – Director of Research Carol Povey – Head of Adult Services. “Anyone can get old. All you need is to live long enough” Groucho Marx. Britain’s ageing population: age at death. Age in years.

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Ageing and autism

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  1. Ageing and autism Richard Mills – Director of Research Carol Povey – Head of Adult Services

  2. “Anyone can get old. All you need is to live long enough” Groucho Marx

  3. Britain’s ageing population: age at death Age in years

  4. % of UK population over 60 years %

  5. to go downhillV Life begins at 40

  6. Prevalence of diagnosis of health issues : General population % (Waern 1978)

  7. So how healthy are we ?

  8. Are we getting healthier? Lifestyle factors Effects on health of • Smoking • Obesity • Excessive drinking of alcohol Biological Factors Effects on health of • High blood pressure risk of early death • High cholesterol • Cancers

  9. But are we getting healthier? • Fall in rates of mortality over past 30 years • Fall of 14% - Average 1.8 years added to life expectancy at age 25 and 1.4 years at 65 • Predicted that this trend will continue due to changes in life style and improved treatments but • The impact of increased obesity likely to be significant • Increased longevity = increased prevalence of disease including dementia

  10. Comparative rates on three major disorders general population and learning disabled General population Learning disabled Hogg et al 1988

  11. What are the implications of ageing for individuals with autism? • Issue about ageing– not old age! • Little known about effects of ageing on individuals with autism – and little recent research generally • What do we need to know? • What do we already know? • What might good practice look like?

  12. What do we need to know?

  13. What do we need to know? • General • Implications of ageing per se • Specific • Implications for the individual • Best ways of responding • Development of an evidence base • Meeting individual needs

  14. What do we already know?

  15. What do we already know? • Individuals with Learning Disabilities have a reduced life expectancy but life expectancy for this group is increasing – why? : What about autism ? • Presence of specific conditions and life limiting neurological disorders affects rates (Hogg 1988) • Higher incidence of seizures in autism – (up to one third)

  16. What do we already know? • Family history important in determining risk of disease • Risk of social isolation is increased, especially among the more able • Local authorities have little information on vulnerable individuals and carers

  17. What do we already know? • Those living in large institutions had reduced life expectancy: Main cause of death respiratory failure (50%) but growth in rates of gastro intestinal cancers (Carter and Jancar 1983) • Mencap report continuing poorer health outcomes and access to services for those with a learning disability • Increased prevalence of dementia in learning disabled population

  18. Dementia Prevalence of dementia in general and learning disabled populations (excluding Down’s syndrome) Cooper et al 2003

  19. Dementia • 5% of UK population over 65 are in residential care • Of these 62% have dementia (MRC 2002) • Two main types of dementia • Alzheimers • Multi-Infarct or Vascular • Overall prevalence • 1.5% population • Deaths from dementia • 2.1% men 4.7% women

  20. Challenge of assessment of dementia in autism

  21. Diagnosis and assessment of dementia in autism • Staff awareness of issues - Not jumping to conclusions • Detailed personal history − discussion with the main carer and service staff. • A full health assessment − exclude any physical causes /other conditions • Psychological and mental state assessment − exclude any other psychological or psychiatric causes of memory loss. • Special investigations − Brain scans can be useful in excluding other conditions but not necessary for diagnosis

  22. What might good practice look like?

  23. Good practice • Understanding the issues • Responding • Building capacity - Standards and monitoring

  24. NAS response

  25. Ageing and autism: Organisational framework for assessing the capacity and capability of services

  26. Our response Organisational framework • Statutory context • Leadership and management responses • Front line responses

  27. Our response Organisational framework • Statutory context – how do we keep informed • Dept of health and CSCI – the personalisation agenda • Access to specialist services • Dementia strategy • CSCP Good Practice information • Links with Age Concern and Help the Aged – joint conferences

  28. Our response Organisational framework • Leadership and management responses • Staff capacity; Training; standards; risk assessment; advocacy; environment and design; Protection and rights. • Assessment of family health history • Advocacy for people over 50 • Training for staff • Best practice groups to share experience and understanding of working with older people • “Currently negotiating extra funding for one service user due to ageing” • “Staff have some understanding of the needs that will be required for older adults with Autism. This will be highlighted in care plan and activity programmes and through training”

  29. Our response Organisational framework • Front line responses • Assessment • Staff skills and deployment • Specific initiatives • “Life stories/scrap books/Personal portfolios and PCP. Close links with families” • “Currently up dating person centred plans to incorporate “when I die” • “D has had a couple of falls and we have a risk assessment in place for this, and we have had an occupational therapist visit him”. • “We have a catalogue with activities, resources and games to maintain health and wellbeing in older people. D has been asked if he would like anything ordered”.

  30. Discussion points • Ageing and autism - Double whammy? • People living in the community – protection from abuse or inappropriate services – circles of support and advocacy? • Legal implications? • Challenge of recruiting advocates – who? ..how? • Are good autism services compatible with the needs of people who may have dementia?

  31. More things to think about Effects of long term high anxiety and related health issues Effects of long term medication Effects of seizures and other neurological conditions Specific needs of women? Effects of social isolation and vulnerability

  32. More things to think about Your feedback and suggestions………..

  33. Contact us Richard.Mills@nas.org.uk Carol.Povey@nas.org.uk

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