This document discusses issues related to population aging and supporting older adults and those with dementia. Some key points: - By 2050, over 2 billion people will be aged 60+ with the majority living in low- and middle-income countries. Dementia is increasing and will affect 131.5 million by 2050, mostly in these countries. - Research shows many people with dementia do not feel part of their community and want more understanding from others on how to support them. - Living with dementia impacts familiar ways of living but people can "re-narrate" their everyday lives through new social networks and support systems to live more independently. - The concept of "narrative citizenship" explores how

1. INDIVIDUAL &
COMMUNITY
RESILIENCE
PROFESSOR CHARLOTTE CLARKE

2. LEAVING NO ONE BEHIND IN AN
AGEING WORLD: A CALL TO
ACTION FOR THE EU
(HELPAGE INTERNATIONAL 2016)
• 2015 - 928 million aged 60 and over
• 2050 - more than 2 billion people
• The majority of older people will live in low- and middle-
income countries
UNDESA, World Population Prospects: The 2015 Revision
In 2050, 131.5 million people will have dementia – 68% in
low- and middle-income countries (World Alzheimer Report 2015)
‘Dangerous Demographics: Pakistan’s Forgotten Elderly
Population’ (HelpAge International with the British Council)

3. FEELING LEFT OUT?
The Alzheimer Society (2012) reported a YouGov survey
of people living with dementia which found that:
• 22% did not feel part of their community
• 38% only sometimes felt part of their community
• 61% felt that their community does not understand their
condition
• 71% would like their community to understand how to
help them live well.
60% of the general public indicated that inclusion in
their community for people with dementia was fairly, or
very, bad.

4. RESILIENCE & CITIZENSHIP
The experience of dementia is
• ‘Criss-crossed with personal histories, social networks and
socially contextualised perceptions of self by others’
• It is not just a one dimensional neuro-pathological journey
… leading to irrevocable decline (O’Connor et al. 2007)
Citizenship is co-constructed through the everyday
relationships with social and physical environments and
manifest in the stories told of our lives (Clarke & Bailey
2016).
It’s about ensuring that there is a political and social will
to maintain inclusive citizenship.

5. OUR RESEARCH PROGRAMME
Focus on the experience of living with dementia, peer
support and citizenship – including:
Healthbridge
Evaluating peer support
networks and Dementia
Advisors in England
Inciting Dialogue
and Disruption
Secondary data analysis
of socio-critical
relationships
Resilience &
Dementia
Living with dementia
and narrative citizenship

6. RE-NARRATING EVERYDAY LIFE
• Dementia impacts on previously familiar ways
of living.
• People establish new patterns of living - the
‘re-narration of everyday life’.
• New or different interaction with services, support and
practitioners
• Different or adapted social networks
• Through re-narration, people with dementia
were reported as living more independently
and often for longer.

7. PEOPLE, PLACE & NARRATIVE
CITIZENSHIP
• Familiarity with people and place can be supportive -
people can tell a story of inclusion (feeling on the inside).
• There can also be a sense of estrangement (feeling on the
outside).
• Narrative citizenship explores how people with dementia:
• position themselves in relation to others
• negotiate their own and other’s understanding of
dementia.
• It allows people to tell stories about themselves in relation
to their sense of belonging in a social and physical place.

8. DOUGLAS’ GROUP / GRID THEORY

9. DOUGLAS’ GROUP / GRID THEORY

10. DOUGLAS’ GROUP / GRID THEORY

11. THE ETHIC OF CARE
‘…part of the human condition is that … in
many other ways we remain dependent on
others throughout our lives.’
Tronto 1993 p.162

12. THE ETHIC OF CARE
4 LEVELS OF CARE
Caring about – noticing
the need to care in the first
place
Taking care of – assuming
responsibility for care
Care-giving – the direct
meeting of needs of care
Care-receiving – the
response to receiving care
5 PRINCIPLES OF CARE
• Attentiveness
• Responsibility
• Competence
• Trust (Sevenhuijsen
2003)
• Responsiveness

13. RELATIONAL CARE
NOT: CARED FOR / CARED BY
Co-operative communication
• Listening-on
Co-operative action
• Working alongside
Co-operative caring
• solidarity

14. RELATIONAL CARE
• Transitions in social and community life
• Peer support
• Embodied togetherness
• ‘Care’ is dynamic and changing over time
• Every person is active in relational care
• Relational care is:
• Horizontal – between people
• Vertical – between policy, services,
communities and individuals

15. THINK DIFFERENTLY…
• Care receiver / care provider is not a fixed
dyadic one-way process
• The ethic of care principles (or lack of them) ‘oil
the wheels’ of Group-Grid changes
• Services and policy can influence experience
through attention to ethic of care principles and
Group-Grid dynamics
• The individual and the community are
inextricably linked in generating resilience.

16. WHEN AGEING-IN-PLACE
IS COMPROMISED
Key issues from Regev I. (2016) Elderly People in a War Zone in
Israel. In: Transnational Social Work
• ‘the relationship between individuals and their social
environment’,
• ‘sense of belonging …. feelings of distance and alienation’,
• ‘when people feel that they are part of a social fabric that is
characterised by mutual responsibility, social support, and
appropriate organisation of services, the stress experiences in
situations of continuous [military] tension is mitigated’.
Migration, culture and religion
• meanings and experiences of ageing (and dementia)
• finding culturally appropriate care services and religious practices