Ageing and autism

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Ageing and autism

• Richard Mills Director of Research
• Carol Povey Head of Adult Services

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• Anyone can get old. All you need is to live
  long enough
• Groucho
  Marx

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Britains ageing population age at death
Age in years
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of UK population over 60 years

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(No Transcript)
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to go downhillV

• Life begins at 40

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Prevalence of diagnosis of health issues
General population

(Waern 1978)
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So how healthy are we ?
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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

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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

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

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What do we need to know?
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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

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What do we already know?
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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)

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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

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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

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Dementia

• Prevalence of dementia in general and learning
• disabled populations (excluding Downs syndrome)

Cooper et al 2003
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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

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Challenge of assessment of dementia in autism
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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

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What might good practice look like?
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Good practice

• Understanding the issues
• Responding
• Building capacity - Standards and monitoring

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NAS response
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Ageing and autism Organisational framework for
assessing the capacity and capability of services
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Our response

• Organisational framework
• Statutory context
• Leadership and management responses
• Front line responses

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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

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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

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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.

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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?

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(No Transcript)
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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
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More things to think about

Your feedback and suggestions..
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Contact us

Richard.Mills_at_nas.org.uk Carol.Povey_at_nas.org.uk