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Dementia and human rights - a book review

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approaches to dementia care, communication, dementia awareness

Dementia and Human Rights by Suzanne Cahill, Policy Press, 2018, ISBN 978-1-4473-3140-7.

I was sent this book with a request from the author for a review. It’s a really timely contribution to a rapidly developing area, so it is useful to have an up-to-date account of some of the legal and practical complexities.

Many readers of this blog will be aware of how different perspectives of dementia have emerged in the last 2 or 3 decades, moving from a view of biological determinism that ignores the person who has the condition to social and person-centred conceptions of dementia. These of course give more options in terms of how the person themselves and those around him/her can respond to a diagnosis of dementia and how to live with it.

More recently, strong arguments have been made for considering dementia as a disability and therefore bringing it within the scope of the United Nations Convention on the Rights of People with Disabilities (UNCRPD), which was published in 2006. The development of the UNCRPD reflects the growth of the disability movement in the preceding years, which has also seen the growth of disability studies as an academic discipline. However, the disability movement has historically focused mainly on physical disability, with the consequence that dementia was not present in the drafting of the UNCRPD, and to some extent dementia has had to play catch-up to argue for consideration under the terms of this Convention.

Suzanne Cahill’s excellent book places all these developments in context. The reader is perhaps grateful that she and her legal colleague Eilionóir Flynn, who wrote one of the chapters, have read a lot of the rather dry material for us. The question of the rights of people with dementia are going to have an increasing impact for all of us. Most countries have now ratified the UNCRPD, which means that they have a commitment to ensuring that their policies and legislation reflect the Convention’s principles.

Human rights is of course a massive topic but, in short, there are five main categories of rights: civil, political, economic, social and cultural. Civil and political rights are referred to as negative rights, meaning that they do not require any special action to introduce though they do need to be protected against violation and abuse. They are therefore relatively easy to observe as they don’t carry many resource implications. The other types of rights are referred to as positive rights as they require an active contribution from others to deliver them, e.g. social rights for disabled people require that assistance, access, suitable transport, etc are made available. For dementia, this would also include personal care. Governments tend to drag their at heels at regarding care and support as rights, since they are often reluctant to pay for them and certainly reluctant for anything of this kind to be enshrined as a right.

The book takes us through several of the Articles of the UNCRPD that are most relevant to dementia and makes a clear case that dementia should be regarded as a disability (without denying any other aspects of it such as its biological basis). While the existing UNCRPD, influenced as it has been by the physical disability and learning disabilities lobbies, focuses very much on independence and life in the community, the author also explores how rights apply to the care home setting and, drawing on Article 19, argues that people should have a right to live in a place of their choice including a care home, should that be their preference.

Perhaps the most thought-provoking chapters concern legal capacity and equal recognition before the law. This is covered in Article 12 of the CRPD and woven through the book. People with disabilities have the same rights on an equal basis as other at all stages of life. This is inviolable and therefore a person’s legal capacity cannot be removed from them no matter how severely disabled they may be. Ultimately, this means that substituted decision-making is not consistent with the CRPD. Instead, the emphasis must be on assisting the person with disability to exercise their legal capacity, to making every attempt to ascertain their wishes and preferences. This replaces the notion of acting in their best interests, as this is seen as patronising and in breach of their legal capacity. Obviously this may be challenging in the case of someone with severe dementia, but advance statements can help. The implications of this way of thinking for the Mental Capacity Act are not yet clear, but the important message is that the person with dementia is never removed from the decision-making process.

I expect that law and practice will need to change to reflect these issues. With it comes a need for training that is far more rights-focused than is currently the case. Reading this book will be a good start for anyone committed to promoting the dignity, humanity and independence of the individual diagnosed with dementia.

 

Tom Dening

16th August 2018

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