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