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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

Ageing and autism

Richard Mills – Director of Research

Carol Povey – Head of Adult Services

to go downhill v
to go downhillV

Life begins at 40

are we getting healthier
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
but are we getting healthier
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
comparative rates on three major disorders general population and learning disabled
Comparative rates on three major disorders general population and learning disabled

General population Learning disabled

Hogg et al 1988

what are the implications of ageing for individuals with autism
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?
what do we need to know1
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
what do we already know1
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)
what do we already know2
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
what do we already know3
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
dementia
Dementia

Prevalence of dementia in general and learning

disabled populations (excluding Down’s syndrome)

Cooper et al 2003

dementia1
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
diagnosis and assessment of dementia in autism
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
good practice
Good practice
  • Understanding the issues
  • Responding
  • Building capacity - Standards and monitoring
slide26

Ageing and autism:

Organisational framework for assessing the capacity and capability of services

our response
Our response

Organisational framework

  • Statutory context
  • Leadership and management responses
  • Front line responses
our response1
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
our response2
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”
our response3
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”.
discussion points
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?
more things to think about
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

more things to think about1
More things to think about

Your feedback and suggestions………..

contact us
Contact us

Richard.Mills@nas.org.uk

Carol.Povey@nas.org.uk