Community Living for all
Future Role of the European Union Structural funds to Advance Community Living
for Older People and People with Disabilities.
In Association with the Irish Presidency of Council of the EU
3 May, 2013, Galway
The Concept of Community Living for All –
Values, Practice and Outcomes
Prof Jerome Bickenbach
University of Lucerne, Switzerland
The Concept of Community Living for All
– Values, Practice and Outcomes
Common values … common goals -- the human
condition
Ageing and disability: common cause …
common strategy?
Dementia: a case study in community living
‘Community living’
‘Independent living’
‘Ageing in
place’
‘Ageing at home’
‘Community living’
‘Ageing in place’
‘Independent living’
‘Ageing at home’
INTENTIONAL COMMUNITY
... ecovillages,
cohousing communities, residential land trusts,
INDEPENDENT
LIVING
communes, student co-ops, urban housing cooperatives, intentional
“Disabled
people are
equal citizens,
and only secondarily
as other
consumers
of
living,
alternative
communities,
cooperative
living, and
projects
healthcare,
rehabilitation
socialtogether
services.” with a common vision.
where
peopleorstrive
In 1972, the first Center for Independent Living was
founded by disability activists, led by Ed Roberts, in
Berkeley, California
Independent living
Independent living: “being able to make choices
and decisions as to where they live, who they
live with and how they organise their daily life”…
•
•
•
•
accessible built environment
accessible transport
available technical aids
accessibile information and
communication
• access to personal assistance
• access to community-based services
‘Community living’
‘Ageing in place’
‘Independent living’
‘Ageing at home’
Ageing in place
Active Ageing
"the ability to live in one's own home and community
safely,
independently,
comfortably,
regardless
of
“...the
process
of optimizing and
opportunities
for health,
participation
age, to
income,
ability
level.”
and security in order
enhanceor
quality
of life
as people age.”
CDC US
...allows people to realize their potential for physical, social, and
...
the notion
that throughout
older persons
should
beand
able
maintainina
mental
well-being
the life
course
to to
participate
desirable
lifestyle
by participating
in theirprotection,
communities,
society, while
providing
them with adequate
security
remaining
independent
as their health allows, having access
and care when
they need.”
WHO
to educational, cultural, and recreational facilities, feeling
safe, and living in an intergenerational environment.
Sustainable communities, US
Common values … common goals
the human condition
“If you prick us, do we not bleed? if you tickle us, do we not
laugh? if you poison us, do we not die?” Merchant of Venice
Independence …. (Autonomy, Respect, Dignity)
Common Needs ….
Dependence….
(Respect for difference, Equality)
Through time ….
Finitude ….
A paradox of the human condition
Independence presupposes dependence ….

Autonomy is fostered within families and communities
 We flourish when we share and grow our personhood in
community with others
 ‘Relational autonomy’
INTERDEPENDENCE
animates both independence and dependence
Convention on the Rights of Persons with Disabilities
Convinced that the family, as the fundamental group
of society and the natural environment for
the growth and well-being of all its members and
particularly children, should be afforded the
necessary protection and assistance so that it can
fully assume its responsibilities within the
community,
Lessons learned from
CONVENTION ON THE RIGHTS OF PERSONS WITH
DISABILITIES
I. Illustrative of human rights from a positive perspective
II. Reflecting our understanding of what it means to be human:
neither
Separate, self-sufficient and ‘atomistic’
individuals
nor
People wholly ‘socially constructed’
But individuals in context: interdependent
III. Not ‘special rights‘
IV. Applicable without modification to ageing issues
AGEING & DISABILTY
Ageing and disability: common cause …
common strategy?
“The 20th century was the
century of population growth...
... the 21st century will be
remembered as the century of
ageing.”
Ageing & Disability: the facts
• 1 billion people with disabilities in the world, nearly 200 million of
whom with significant difficulties (WDR, 2011)
• People >60 to reach 1.5 billion by 2050
40
Proportion 65 and over
35
Japan
30
Spain
USA
25
China
20
India
15
Brazil
10
Australia
Thailand
5
0
1990
2000
2010
2020
2030
2040
2050
13
Ageing and disability: common cause …
common strategy?
The ultimate bridge:
Ageing involves a disabling process
UNIVERSAL HUMAN RIGHTS
=
Disability Human Rights
&
Ageing Human Rights
Ageing and disability:
common causes …
 Ageing in place – living in the community
 Being independent in the community –
supportive services
 Transitional needs: ageing and other
longitudinal processes
 Avoidance of institutionalisation
 The centrality of ‘home’
Ageing and disability:
common cause …

Ageing in place – living in the community

Being independent in the community – supportive service

Transitional needs: ageing and other longitudinal processes

The centrality of ‘home’
Avoidance of institutionalisation
European Expert Group
on the Transition from Institutional
to Community-based Care,
November 2012
Dangers of institutionalisation: The Research
• The move from home to congregate settings causes disorientation,
loneliness and depression, and overall poorer health
• Nursing home-acquired pneumonia (NHAP): the largest health problem
in long-term care facilities.
• Inverse association between activity of daily living (ADL) level and mortality,
predicting short-term mortality in institutionalized elderly adults.
• Nursing home placement in older adults increase comorbidities (e.g.
diabetes, stroke, cardiovascular disease), incontinence and difficulties
performing activities of daily living.
• Institutionalisation produces significant weight loss, increased frequency of
falls, significant increased differently self-care and withdrawn behavior.
• Insitutionalisation creates a vicious circle of depression and behaviour
change, leading staff to view the person as dangerousness and instituting limits
on social contact, leading to further cognitive and emotional decline.
Dementia:
a case study in community living
• People with dementia will double every 20 years to 81.1
million by 2040
• Dementia has the highest prevalence of any age-related
disease is dramatically increasing.
• Dementia is the main cause for institutionalisation in the
elderly, estimated as at least five times higher than other causes
• In 2005 the total world-wide costs of dementia were around
US $300 billion and that 77% of this worldwide … primarily
because of the costs of institutionalisation.
• The most reliable way to avoid institutionalization is
provision of social and financial support to informal caregivers,
including regular and reliable respite care.
Hurd et al. Monetary Costs of Dementia in the United States.
N Engl J Med 2013. 368:1326-34.
“Our calculations suggest that the aging of the U.S. population will
result in an increase of nearly 80% in total societal costs per adult
by 2040.”
“Our estimate places dementia among the diseases that are the
most costly to society.”
“The main component of the costs attributable to dementia is the
cost for institutional and home-based long-term care rather than
the costs of medical services — the sum of the costs for nursing
home care and formal and informal home care represent 75 to 84%
of attributable costs.”
How are we are ageing…
Increasing longevity, with ….
I. Slow progressive decline in functional
capacity, increased morbidity, to death
PROGRESSIVE DECLINE
II. Slow plateau to inflection point (‘frailty’),
precipitous decline to death
“COMPRESSION OF MORBIDITY”
How are we ageing…
PROGRESSIVE DECLINE
“COMPRESSION OF MORBIDITY”
Functional Capacity
‘Frailty’
Age
Live independently: Cost savings
‘Frailty’
Nursing home
Long term care facility
Age
The case of dementia:
When Human Rights and Cost-effectiveness
overlap….
Typical of human interdependence…
Characteristic of temporal dynamics and human
change….
Bridging ageing and disability
Need for evidence-based and proactive
policy decision-making.