Rights

Rights

Peter Ashley

Can we embed a rights-based approach in policy and practice for people living with dementia?

The social model of disability has implications for the rights of people with dementia under the law, for disability discourse and public policy. It also affects how dementia is experienced, perceived and discussed not only by the public, but by people with dementia and their carers themselves. We want to embed different thinking and a rights-based approach in policy and practice for people living with dementia.

 

The debate continues as part of the VERDe network.

A guide called Our Dementia, Our Rights has been authored by Philly Hare on behalf of the Dementia Policy Think Tank. This group – which is a member of the UK wide DEEP network – was set up in 2016 by a number of people with a diagnosis of dementia who have a particular interest in promoting rights and influencing policy issues. See below.

Documents

  • ‘Continuing to be me’ – Recovering a life with a Diagnosis of Dementia

    The purpose of this briefing paper is to explore what ‘recovery’ might mean for those with a diagnosis of dementia.

    The authors explore what enables people to regain hope and live positively, maintain personal control and have the opportunity to do the things they value, remain a valued part of their community and participate not as victims, but as citizens.

    ‘Continuing to be me’ – Recovering a life with a Diagnosis of Dementia was launched at ImROC training events facilitated by Dr Rachel Perkins on Central and North West London NHS Foundation Trust Older People’s wards on 30 September 2016.

  • Our Dementia, Our Rights

    The more we talk about and use the rights of people with dementia, the more our services, culture and attitudes will change for the better. This guide has been authored by Philly Hare on behalf of the Dementia Policy Think Tank. This group – which is a member of the UK wide DEEP network – was set up in 2016 by a number of people with a diagnosis of dementia who have a particular interest in promoting rights and influencing policy issues.

    Living with dementia is a challenge, and you may well need support. But getting the services and help you need is not always easy. This booklet explains why it can be helpful to know–and talk about–your rights.

    Rights can help us to uphold shared values in challenging circumstances. The language of rights can help you feel more confident and empowered. Although rights and laws are about everyday life, they can feel complicated. However, there are services, helplines and advocates who can help you to ask for what you need, and to challenge decisions when they seem to ignore your rights.

  • Dementia, Rights and the Social Model of Disability

    This report from the Mental Health Foundation argues that viewing dementia as a disability rather than an illness would unlock the potential for policy to be developed and services designed, delivered, and monitored by people living with dementia. As a result, people living with dementia will have a strengthened ability to advocate for appropriate levels of investment in social care so they can live as active citizens in the community.

  • How can and should UK society adjust to dementia?

    The publication explores the application of the social model of disability to dementia. It looks in detail at what this social model is, and where it has come from, bringing together the authors’ interests in disability and ageing, and training in disability studies and health and social geography

    The paper addresses: the social model of disability and its relevance to dementia; social attitudes and understanding – disablism and ageism; the nature and development of services – thinking beyond the usual health and social care boxes; the empowerment and involvement of people living with dementia.

2 thoughts on “Rights

  • Firstly, I’ld like to say how great it is to see the experience of dementia being framed as a disability rights issue. This is what we tried to do in the 1990s when Susan Hemming and I developed a training course for social workers/care managers in the context of the 1990 community care legislation. We were commissioned by a number of local authorities to deliver training for those carrying out community care assessments and the course was based on four principles: rights and entitlements; social model of disability; needs-led assessments; and choice and control. People with some degree of dementia were the largest group on the case-loads of most of the social workers we trained. But we struggled to convince some of them that the social model was as relevant to older people with dementia as it is to younger disabled people. I hope it would be easier today.

    However, I do think there are some ways in which the first paper doesn’t go far enough in its application of the social model and to some extent this stems from a confusion about language.

    It is difficult in everyday life to use the word ‘disability’ in a way which is consistent with the social model, but it can be confusing if policy/academic debates follow the same practice. The starting point for the social model is the separation of impairment from disabling barriers and crucially the word ‘disability’ is not used to mean impairment. This MHF paper would have been clearer in its analysis if it had not frequently used the word ‘disability’ when the authors are actually referring to ‘impairment’.

    Of course, it doesn’t help when the legal framework – the Equality Act and the CRPD – for the discussion of the rights of disabled people also uses the word ‘disability’ to mean ‘impairment’.

    The language of the social model was set out clearly in 1981 by the British Council of Organisations of Disabled People:

    “Disability is the disadvantage or restriction of activity caused by a society which takes little or no account of people who have impairments and thus excludes them from mainstream activity.  (Therefore, disability, like racism or sexism, is discrimination and social oppression).’

    Impairment is a characteristic, feature or attribute within an individual which is long term and may or may not be the result of disease or injury and may:

    1.  affect that individual’s appearance in a way which is not acceptable to society, and/or;
    2. affect the functioning of that individual’s mind or body, either because of, or regardless of society, and/or;
    3.  cause pain, fatigue, affect communication and/or reduce consciousness.”

    I often find it useful to go through a piece of writing to look at each time authors use the word ‘disability’ to consider whether in fact they mean ‘impairment’. It sounds trivial but it’s not – we need to be clear in our language in order to be clear in our analysis.

    The social model does not imply a denial of the effects of impairment. What it does require is the identification of disabling barriers which may influence the ways in which impairment is experienced. Of course there are some ‘impairment effects’ which are inherently associated with a particular condition. But their impact can be strongly influenced by context. The obvious example in the case of dementia being that if you remove someone from familiar surroundings the chances are that they will experience a greater level of confusion, anxiety and distress – their level of clinical cognitive impairment has not worsened but the effect has.

    Applying the social model to the experience of dementia is about giving people (individuals with dementia, carers, advocates, professionals) the tools to identify action which can increase the quality of life of people with dementia. And quality of life is not just about ‘participation’ or ‘inclusion’ in society. It is also about the actual impact of impairment. The social and economic context in which someone experiences their impairment profoundly affects both the degree and consequences of the associated functional limitations. Before the Second World War, people with my particular impairment usually didn’t survive more than a few months. As a consequence of resources put into both medical treatment, and levels of care, people like me now have a near normal life expectancy.

    The experience of dementia would similarly be very different today if different decisions had been made in the past about investments in medical research, treatment and social care support.

    The point about the social model, as the paper recognises, is that it provides ways in which to identify action that can make a difference. But this also applies to identifying barriers that get in the way, and positive steps that can be taken, to influence the actual effects of the impairment in itself. So we don’t need to ignore the impact of impairment and ‘just’ focus on the kinds of things the paper identifies (important though these are). Ironically, an incomplete understanding of the social model can lead to not paying enough attention to impairment and its effects.

  • Dear Jenny
    Thanks Jenny for your comment which are very helpful. Producing the report was a bit of a learning process for us in respect of the social model of disability, its evolution and some of the debates that have taken place around it so this is this is probably the reason why there are some inconsistencies in the terminology. I think the report does acknowledge the importance of trying to ensure there is appropriate and effective care, treatment and support to address the actual effects of the impairments caused by dementia but we wanted to emphasise the importance of societal change in order to draw people’s attention to important and relevant approaches, which hitherto have not gained much traction in dementia policy and practice. If an opportunity arises to review the online version we will definitely take the points you make into account.
    Kind regards
    Toby

    Toby Williamson

Leave a Reply

Leave a comment

Your email address will not be published. Required fields are marked *

Join the mailing list