Transcript www.autism.org.uk

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
90
80
70
60
50
40
males
females
30
20
10
0
1901
1991
% of UK population over 60 years
25
20
%
15
% population
over 60
10
5
0
1960
1990
2020
Age profile of individuals accessing NAS adult services
40
35
Number of service users
30
25
Male
20
Female
15
10
5
0
13
20
25
30
35
40
Age
45
50
55
62
to go downhill
V
Life begins at 40
Prevalence of diagnosis of health issues
: General population
35
circulatory
diseases
mental
disorder
endocrine
metabolic
neurological
diseases
respiratory
diseases
cancers
30
%
25
20
15
10
5
0
50 years
(Waern 1978)
60 years
So how healthy are we ?
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?
• 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
35
30
25
20
circulatory
musculosketal
respiratory
15
10
5
0
age
50
age
60
General population
Hogg et al 1988
age
50
age
60
Learning disabled
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 know?
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 know?
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 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 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
Prevalence of dementia in general and learning
disabled populations (excluding Down’s syndrome)
25
20
15
gen pop
10
learning
disabled
5
0
50
Cooper et al 2003
60
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
Challenge of 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
What might good practice look like?
Good practice
• Understanding the issues
• Responding
• Building capacity - Standards and monitoring
NAS response
Ageing and autism:
Organisational framework for assessing the capacity and capability of services
Outcome heading
1. Quality of life
2. Exercising choice
and control
3. Making a positive
contribution
4. Personal dignity
and respect
5. Freedom from
discrimination and
harassment
6. Improved health
and emotional
wellbeing
7. Economic
wellbeing
8. Leadership and
management
DH white paper
description of
outcome
How CSCI see it
relating
Response-action
and evidence
Current progress/
completion
Our response
Organisational framework
– Statutory context
– Leadership and management responses
– Front line responses
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 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 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
• 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?
SPELL framework
domains
Examples of good autism
practice
Examples of good practice
with people with dementia
Structure
Modified environment
Visual clarity – timetabled
activity
Older people in all settings provision of a
structured day, including rehabilitative activities
can choose from and participate in a diverse range
of stimulating one-to-one and/or group activities.
Positive approaches
and expectations
Respect for the persons
strengths- encourage and
maintain skills: attention to
physical wellbeing and health
respect for all those people who engage with these
services, not only those using them but also their
supporters and carers.
The importance of health promotion in later life
should not be diminished by stereotypical views on
older people’s frailty and dependence.
Empathy
See the world from the (unique)
perspective of the individual;
advocacy
use empathy skills to help the person with
dementia express their feelings and needs
Reminiscence - special or preferred interests
Low arousal
Non confrontational style
Reduce extraneous or
distracting noise/ other stimuli
A calm, unstressed environment
clear, familiar routines
avoid excessive reactions.
Speak clearly and use simple sentences
Allow time for response. (Do not
interrupt the response).
Give limited choices in order to avoid
confusion.
Links
High level of consistency of
approach: Involvement of close
relatives:
Strong links with local specialist services
Role of carers and advocates recognised as
essential to the well-being of the older person, and
supported.
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 about
Your feedback and suggestions………..
Contact us
[email protected]
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