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‘A Stronger Voice for People with Dementia’ by the Dementia Advocacy Network (DAN)

What is advocacy?

The Advocacy Charter (produced by Action for Advocacy) defines advocacy as “taking action to help people say what they want, secure their rights, represent their interests and obtain services they need.  Advocates and advocacy schemes work in partnership with the people they support and take their side.  Advocacy promotes social inclusion, equality and social justice.”

Advocates are independent from other services and as such are able to focus on giving people a voice and empowering people in a unique way.

There is some statutory provision of advocacy (Independent Mental Health Advocates, Independent Mental Capacity Advocates and NHS Complaints Advocacy).  Statutory advocacy has the benefit of being protected by law (e.g. the Mental Health Act and the Mental Capacity Act) but these types of advocacy are only available in specific situations.  There is therefore a need for generic advocacy services that are able to work with a wider range of people on the issues with which they need support.

Dementia advocacy

The Dementia Advocacy Network (DAN) believes that every person with dementia should have access to a skilled and independent advocate who understands dementia and is equipped to advocate effectively.

People with dementia are among some of the most vulnerable members of our society.  With an illness that brings diminishing ability to cope independently, progressive changes in cognitive ability, fluctuating mental capacity and increasing difficulties in communication they are vulnerable to discrimination and abuse.  Increasing demand on services, austerity measures and reduced resources mean that sometimes the person with dementia has little involvement in decisions about their treatment and care, their rights disregarded, their voice not listened to or overpowered by others.

Advocates who work with people with dementia are able to ensure that their voice is heard and their rights protected.  Advocates can also work in a non-instructed capacity with people who are unable to tell the advocate what they want, which can be particularly valuable for some people with dementia.  DAN’s publication “Taking their side; fighting their corner” includes case studies that demonstrate the value of advocacy for sixteen different people with dementia.

Advocates can benefit other services by being able to spend time specifically focusing on finding out what the person with dementia wants and communicating this to service providers.  This means that service providers can have the assurance that their service is tailored to that particular service user, taking their individual views and preferences into account.

‘Mind the Gap’ – Advocacy provision in London

DAN has produced a report to promote the need for independent advocacy for people with dementia and highlight areas in London where there are gaps.  The findings of the report will be presented and discussed at DAN’s conference, ‘A Stronger Voice for People with Dementia’ which is being held in London on 18 September.  Anyone who is interested in attending can book a place here.

For further information please contact Jan Kendall, DAN Manager, or Heather Tyas, National Project Support, Dementia Advocacy Network (DAN): Tel: 020 8968 2614. Email: dan@advocacyplus.org.uk. Website: www.advocacyplus.org.uk/dan

“Neighbourhood ‘care’ headed to graveyard of good intention”

By Bob Hudson, Durham University

Neighbourhood watch groups should apply for care status and provide help for older people to counter Britain’s “uncivilised” attitude to pensioners.

As well as looking out for potential burglars and keeping an eye out for neighbours gardens, watchers could also offer help to elderly neighbours, including washing and feeding.

Although attractive in principle, the evidence suggests it would be unwise to equate the concept of neighbourhood with assumptions about its capacity to create a rich social capital.

What makes good neighbours?

In a report with Melanie Henwood, we reviewed the sociological evidence of “neighbourliness”.

We found several things that shape our experience of neighbourhoods, including proximity – whether you live next door or in the next street – and how quickly you can pop round or help in an emergency, although the ability to help in an ongoing way is declining and more limited than it used to be.

How long you’ve lived somewhere and whether you’re considered a “newcomer” also shapes our experience as well as social polarisation – reciprocal neighbourhood care grows where information and trust are high, and where there are limited resources for satisfying needs in other ways – classic features of deprived and socially homogeneous neighbourhoods.

Communities and associations

In the 19th century, the sociologist Ferdinand Tonnies argued that in rural gemeinschaft (or community) groups, social order was based on a web of social ties – people knew each other in a range of multiple roles, such as parents, neighbours, co-workers, friends or kin.

But urban neighbourhoods were organised more like gesellchaft (or associations) with single-stranded ties – only knowing each other in single, specialised roles such as “the person next door” or the binman.

These structures have only intensified. Better transport, longer journeys to work, a wider geographical spread of friends and kin, a wider range of shopping and recreational opportunities, and more insular families, have all reduced the idea of neighbourhood as the central point of social interaction and social support.

The prospect of relying on those in the neighbourhood to help vulnerable neighbours with washing and feeding, let alone companionship (and especially in urban areas), looks remote.

Big Society and other attempts

The last Labour government invested quite heavily in a range of neighbourhood-focused initiatives but with little to show for the effort.

Evaluations of two initiatives they launched, the Neighbourhood Renewal Strategy and the New Deal for Communities programme, which both aimed to utilise community spirit to improve deprived neighbourhoods found little evidence of improved conditions or growth in social capital.

The idea of another programme was to employ a neighbourhood manager, supported by a small team, to drive local improvement and create community cohesion. Again, the results were less than fulsome.

More recently, there’s been the Big Society, the flagship Tory election policy to empower communities and take a more active role in looking after each other and providing local services. But despite the rhetoric, little has been heard of much trumpeted initiatives that fall under its umbrella, such as the National Citizen Service or the 5000-strong Community Organisers programme to “galvanise those around them to become more active”.

The Big Society concept itself has become something of a byword for failed politics.

Lamb’s idea

Where does this leave Lamb’s proposal? There is no doubt that he is on to something interesting with his focus on neighbourhoods. But it’s fanciful to think there is a huge store of social capital out there just waiting to be cultivated.

Neighbourhood policy and practice already crosses all sectors – informal, independent, statutory, voluntary and community. It also straddles many organisational and professional boundaries.

An area with around 10,000 people living in it, for example, is likely to contain primary health care services, community health services, adult and children’s social care and support, early years and primary school provision, neighbourhood policing, a community pharmacy, neighbourhood wardens of some sort, a number of voluntary and community groups, housing offices, commercial and leisure facilities, and some measure of social capital.

All of these contributions are important but they rarely act together. Now there’s a serious policy challenge with a huge potential pay-off.

Bob Hudson does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.

The Conversation

This article was originally published at The Conversation.
Read the original article.

‘Contemporary Narratives of Care’ call for papers posted on behalf of Parvati Raghuram

Contemporary Narratives of Care
(Fri 25 October 2013; Birkbeck, University of London)

Call For Papers Deadline: 16 August 2013 This symposium seeks to bring together scholars, creative writers and medical practitioners interested in, and working on, the issue of care within the rapidly growing field of medical humanities. It will incorporate both professional and non-professional care (between intimate others, such as parents and children, partners, siblings or friends) primarily but not exclusively relating to illness, disability, the young and the elderly. It will focus on narratives and representations of care in contemporary literature and life-writing. How do these texts give form and meaning to the psychosocial impact of caregiving – or its failure? What kind of theoretical framework(s) may be useful in reading such narratives/representations?

Open to all disciplines and theoretical approaches, the symposium welcomes proposals for 20-minute papers or more informal, 10-minute descriptions of your field and research/work.
Topics for papers might include, but are certainly not limited to:
• What constitutes ‘care’?
• The role of language and/or literary form in representing care; • Carers as writers and/or as literary subjects; • Different forms of care, such as life-long care, terminal care, curative care; • The experience of caregiving; • The experience of receiving care; • Moral philosophy/ethics of care; • Psychoanalysis; • Emotions and affects; • The politics of care: gender, ‘race’, class, sexuality; • Human relationality/the impact of care on intimacy; • Violence and care; • The role of religion, secularization and individualism; • The failure of care.

Please send a max. 300-word abstract or max. 150-word description of your field/research/work and a max. 50-word biography to narrativesofcare@gmail.com> by 16 August 2013.
The symposium is free and all are welcome. To register please email narrativesofcare@gmail.com>.

 

‘The interface between care politics and corruption’ by Renu Addlakha

A most shocking event has taken place in the Indian state of Bihar involving the state run midday school meal programme resulting in the death of 23 children who had consumed insecticide laced rice and curry (http://news.in.msn.com/national/government-to-probe-mid-day-meal-scheme-after-23-children-die), The Midday Meal Scheme is the world’s largest school feeding programme involving 120 million children in India. The programme is run on a public-private partnership with NGOs and local contractors and the scheme involves giving hot nutritious freshly cooked food to children. It is envisaged as a means of reducing malnutrition and increasing school retention of children coming from poor households, particularly in rural areas.

In the present case the food had been cooked on the school premises and preliminary investigations suggest unintentional poisoning. The oil in which the food was cooked had been put in an empty pesticide container and the two substances had got mixed. This oil had then been used for cooking the meal. The food was prepared in the house of one of the teachers whose husband was grocer. So conspiracy theories are also rife.

From a care perspective, this case raises several issue to my mind.Firstly, how can such carelessness take place and what does it tell us about the attitude of those managing the programme? What does this tell us about the contemporary state as it moves from a paradigm of social welfare to neo-liberalism wherein it sub-contracts core care functions to private stakeholders? What is the value being placed on the lives of young children in such a context? How is that the rage which such an event should have generated has turned more into a storm in a teacup? What does this event tell us about the interface between care politics and corruption?

I would love hear how others view this event from a care perspective.

Renu Addlakha
Professor
Centre for Women’s Development Studies
New Delhi, India.

‘Who cares?’ By Dr Andrew King

It’s been National Carers Week in the UK recently. It’s been well publicised in mainstream and social media, even receiving its own twitter hashtag #carersweek. I’ve read some heart-wrenching and indeed heart-warming stories and learned some useful facts, such as those provided by ONS from Census data. There has rightly been a discussion of hidden carers.  Yet despite this, I have seen very little, indeed next to nothing, about informal caring relationships that take place between lesbian, gay and/or bisexual people (LGB). Unfortunately, this sort of invisibility and implicit heterosexism is nothing new. There is a growing body of literature, including academic, third sector and activist generated studies that points to the invisibility of older LGB people in general and older LGB carers in particular. There are some on-going and important projects which have tried to increase the visibility of older LGB people and their needs, such as Age UKs excellent ‘Opening Doors’ and work in public sector organisations, and projects about specific issues like end-of-life care.

Yet research, including my own, demonstrates that caring relationships amongst older LGB people, what we might refer to as informal care relationships within chosen networks, or ‘families of choice’ (Weeks et al., 2001; Weston, 1991) are both very important and diverse, more so than heterosexual people’s. Research shows that older LGB people rely more on friends and partners for support in later life. But it’s important not to simplify and to capture the levels of complexity that are apparent in older LGB people’s lived experiences of informal care. It’s why I think a relational approach is needed because it shows that roles and identities such as carer and care recipient are rather too simplistic. I discuss this approach further in a chapter I’ve written in a forthcoming book ‘Mapping Intimacies’. To give you an idea of what I mean, here is the story of two older gay men, Alec and Peter.

Alec and Peter first met in the late 1970s. Peter supported Alec physically, emotionally and financially. For instance Peter helped Alec visit various private doctors and specialists, obtaining better care for him, until his underlying medical condition was stabilised; he nursed him when he was particularly ill; he helped him cope with the psychological stress of his chronic illness; and when Alec had to retire early on health grounds, Peter continued to support him financially. Hence, it would appear that Peter has for many years taken the role and identity of being Alec’s carer. However, when they first met Peter was struggling to come to terms with his sexuality. He felt that his family, particularly his father, did not understand his sexuality and would not accept it. Dealing with this led him to a local lesbian and gay support network where he met Alec. He helped Peter to accept his sexuality and viewed in this way, he can be seen as caring for Peter psychologically, whilst Peter tried to support Alec with his chronic illness. Recently, Alec has suffered from further ill health and Peter, although continuing to work, has also suffered periods of illness. Peter is learning to cope with Alec’s increasing infirmity, whilst Alec faces coping with Peter’s growing depressions and frustrations.

So, let’s see much more of presence of carers who are not heterosexual in the next Carers Week, but let’s not forget that the distinction between carer and cared for is also complex, especially when we look at the experiences of communities who have traditionally (and still are) invisible and marginalised!

Weeks J, Heaphy B and Donovan C. (2001) Same-Sex Intimacies: Families of Choice and Other Life Experiments, London: Routledge.

Weston K. (1991) Families We Chose: Lesbians, Gays, Kinship, New York: Columbia University Press.

Caring about mental health inequalities, by Professor Elizabeth Peel

Previous research indicates that, compared to heterosexual people, LGBT young people are more likely to attempt suicide, lesbian and bisexual women are more likely to have drinking problems, and gay and bisexual men are more likely to have body image disorders. Therefore the Risk and Resilience Explored (RaRE) study, funded by the Big Lottery (2010-2015), explores these mental health inequalities in LGBT people in England. The project is led by PACE Health, a London-based charity, in partnership with Prof Elizabeth Peel (University of Worcester), Prof Ian Rivers (Brunel University) and Allan Tyler (London South Bank University) and aims to address the following questions:

  • Which LGBT people have these problems?
  • What are the risk/predictive factors?
  • What are the resilience/protective factors?
  • How do these vary between the study groups and between the study groups and their heterosexual counterparts?

The team has just launched a large-scale Health and Wellbeing survey that is open to anyone over 18 living in England. People of all sexualities whether or not they have experienced mental health problems can participate in the research via https://www.surveymonkey.com/s/a_RaREStudy This offers an opportunity for those who care about understanding health inequalities to share their experiences and perspectives. For more information about the RaRE study contact the project coordinator Nuno Nodin: nuno.nodin@pacehealth.org.uk .

 

Elizabeth Peel

Professor of Psychology & Social Change

Institute of Health and Society

The University of Worcester

Henwick Grove, Worcester, WR2 1AG

Email: e.peel@worc.ac.uk

 

Follow the ReValuing Care Network on Twitter: @ReValuingCare

The ReValuing Care Network aims to bring together academics, activists and advocates with an interest in ‘care’ in its many forms and locations.

We are committed to creating opportunities for open dialogue between academics and activists, advocates and others working in the third sector to improve the way that care is understood and valued in our society.

Care as a Value and Valuing Care, by Professor Marian Barnes

The Observer on 8th June published a story demonstrating the impact of recent Government changes to housing benefits. As a result of being forced to move from Westminster to Brent because of benefit changes, Hanane Toumi and her young children aged 6 and 3 have to travel 5 miles each morning to get to school and nursery, before Hanane then travels to another part of London to work as a cleaner.  It has not been possible to get a school place near their new accommodation and nursery places are more expensive. Local government officers in Westminster and Brent have acknowledged that the situation is ‘not ideal’, but do not accept that the exhaustion and emotional impact resulting from this are a reason for reviewing the family’s situation.

Benefit changes introduced by the Coalition Government in the UK have been roundly condemned. But Ed Miliband’s announcement that an incoming Labour government would put a cap on the overall cost of benefits doesn’t inspire hope that too much would change.  What does this say about the value attached to ‘care’ by politicians and local officials? The Observer story was framed in relation to evidence that, rather than costing less, the financial cost to the state of homelessness is going up because of the costs of funding temporary accommodation for low income families in wealthy areas.  But implied within the story is the lack of care shown by the state about the everyday lives of women such as Hanane and her children. As a result of government decisions at national and local level Hanane’s capacity to care for her children and herself is severely compromised. Her daughter falls asleep at school and her emotional welfare is suffering.

Care ethicist Eva Kittay has named ‘epistemic responsibility’ and ‘epistemic modesty’ as fundamental principles for the ethical conduct of philosophy and I have suggested we should similarly apply these principles to the making of social policies. If policy makers neither know about or understand the circumstances and consequences of the policies they make, nor care about the lives of those impacted by these policies, then policy will not only be ineffective but unethical. Joan Tronto named ‘competence’ as one dimension of care and the experiential knowledge of those who live in poverty, and experience at first hand the impact of government policy, is essential to shaping  policies that are attentive to people’s everyday lives. But the Coalition government has proved itself to be unconcerned about making policy on the basis of ‘evidence’ when it comes to benefit changes. And the Labour leadership appears reluctant to articulate a value based approach to welfare.

Unless politicians and public officials recognise that they should care, that caring involves knowing what you’re talking about, and that care is a value that should guide social policy, experiences such as that of Hanane Toumi and her children will simply not be seen to matter.  Naming care as a value as well as valuing care are equally essential.

12/6/13

Marian  Barnes

Professor of Social Policy
School of Applied Social Science
University of Brighton
Mayfield House
Falmer, Brighton BN1 9PH

Barnes, M (2012) Care in Everyday Life: an ethic of care in practice, Bristol, Policy Press.

Kittay, E. F. (2010). The Personal is Philosophical is Political: A Philosopher and Mother of a Cognitively Disabled Person Sends Notes from the Battlefield. Cognitive Disability and its Challenge to Moral Philosophy. E. F. Kittay and L. Carlson. Chichester, Wiley-Blackwell: 393-413.

Tronto, J. (1993). Moral Boundaries. A Political Argument for an Ethic of Care. London and New York, Routledge.