riwc_ charlotte clarke revised
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INDIVIDUAL & COMMUNITY RESILIENCEPROFESSOR CHARLOTTE CLARKE
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 countriesUNDESA, 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)
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.
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.
OUR RESEARCH PROGRAMMEFocus 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
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.
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.
DOUGLAS’ GROUP / GRID THEORY
DOUGLAS’ GROUP / GRID THEORY
DOUGLAS’ GROUP / GRID THEORY
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
THE ETHIC OF CARE4 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
RELATIONAL CARENOT: CARED FOR / CARED BYCo-operative communication
• Listening-on
Co-operative action• Working alongside
Co-operative caring • solidarity
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
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.
WHEN AGEING-IN-PLACE IS COMPROMISEDKey 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