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Conclusions

2017: Dementia as a disability? Implications for ethics, policy and practice

The disability movement began over half a century ago but it is only in recent years that a dialogue has started about dementia as a disability. The main impetus for this emerging dialogue came from people with dementia themselves who have started to articulate their right to be treated as full, active and equal citizens. People with dementia must play a key role in identifying the issues at stake, contributing towards discussions and developing possible recommendations for governments, policy makers, Alzheimer associations, disability organisations and regulatory bodies. For this reason, we are pleased to have been able to include people with dementia in this work in two ways:

  • — firstly, in the ethics working group responsible for the drafting of this paper, together with experts in disability, ethics, policy making, mental health and advocacy, and
  • — secondly, in the context of an email survey and a one-day focus group discussion in which the members of the European Working Group of People with Dementia and their carers/supporters shared their experience and views with regard to the topics addressed.

Throughout this discussion paper, we have highlighted the potential impact of recognising that dementia can lead to disability. At the same time, we have acknowledged that such disability may be experienced in different ways by different people with dementia and that some people with dementia will prefer not to take on an identity based on disability. We suggest that, overall, the ethical, practice and policy benefits of viewing dementia as a dis- ability, such as the opportunity to campaign for rights, advocate for change and be covered by legislation promoting human rights (e.g. based on the CRPD), outweigh the disadvantages. We have therefore drawn attention to the challenges that dementia (and human agency) poses to existing models of disability and emphasised the need to retain and promote a positive attitude and more nuanced understandings of care, support, depend- ency and interdependency within society. In addition, we have emphasised the need to challenge theories of personhood and approaches to social inclusion which serve to exclude and devalue people with dementia, with or without disability.

In terms of different ethical frameworks, the biomedical ethical principles highlighted by Beauchamp & Childess, Nussbaum’s capabilities and Kittay’s approach to the ethics of care provide solid grounds to argue in favour of the benefits of recognising dementia as a potential disability. Furthermore, specific ethical and related concepts (such as respect for autonomy, beneficence, non-maleficence, justice, equality, agency and relationships of support and care etc.) dovetail with a rights-based approach, which is clearly framed in terms of disability rather than a dis- ease-specific model. This, as the paper makes clear, further reinforces the benefits of viewing dementia as a disability. Though dementia has come late to the ‘disability table’, it provides a set of filters for human agency, disability and rights to come together and actually enable theory and practice about disability to be taken forward in positive and helpful ways for the whole of the disability movement.

Furthermore, examining dementia as a disability brings a new complexion to the more traditional views of dementia. This paper calls for a progressive and positive change in society’s response to dementia, based on recognition of potential disability, accompanied by a change in attitudes and the provision of coordinated, appropriately funded and properly monitored polices, services and support, thus leading to a positive change in the lived experience of dementia. None of these potential benefits should require a particular person with dementia to identify with disability. We need to be careful to recognise and respect difference and individual choice. It is hoped that this discussion paper will contribute in some way towards improving the lives of people with dementia who experience disability. We hope that it will also provoke thought on how to create a more inclusive society in which people with disabilities and dementia are not considered as ‘other’ or ‘them’, but simply as ‘us’ with the same rights and opportunities as everyone else to enjoy life.

We have provided a lot of information in this discussion paper, raised and defended certain arguments, drawn conclusions and even made recommendations. However, the whole area of disability and dementia is ‘under construction’. It is early days and a lot still needs to be achieved in terms of understanding and action. We look forward to the continuing debate and to future developments in relation to ethics, policy and practice, which will hopefully have a positive impact on the lives of people with dementia.

 

 
 

Last Updated: Tuesday 13 February 2018

 

 
  • Acknowledgements

    The discussion paper “Dementia as a disability? Implications for ethics, policy and practice” received funding under an operating grant from the European Union’s Health Programme (2014–2020).
  • European Union
 
 

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