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
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.
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
Notes de l'éditeur
Ethic of care theory is underpinned by the view that care is part of everyday life and we all need it. It takes a very broad view of care e.g. having your bins collected could be understood as care by the council, if that doesn’t happen things quickly becoming unpleasant and unhealthy for everyone.
The underlines the relational nature of human beings and that we are interdependent
Ethic of care also theory also challenges that view that care is something that happens between 2 people, a care-giver and a care –receiver, although that is part of it – it identifies 4 levels of care:
Tronto (1993) suggests that the four levels can serve as ‘an ideal to describe an integrated, well accomplished act of care’ (Tronto 1993 p.109). Disruptions at any of these levels can impact on the integrity of the caring process. Analysing disruptions in the caring process and their potential impact on the caring relationship can reveal aspects of care which need to be addressed.