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All the materials for ‘Dementia Rights’ are now uploaded, and are made available free of charge for the public good. Please read carefully the terms and conditions for their use.
In August 2015, the Mental Health Foundation published its long awaited report on dementia, rights and the social model of disability. In April 2016, the Alzheimer’s Disease International accepted unanimously a proposal from the Dementia Alliance International to prioritise rights based approaches in their policy on dementia.
The “Dementia Rights” project aims to embed through word of mouth and social action a rights based consciousness towards rights.
International statutory instruments and their interpretation are important in their own right, but it is critical that rights are understood by people with dementia. Without this basic awareness, it is impossible for people with dementia to use their rights locally in society.
The aim of this project was to design an initiative building on the known success of ‘Dementia Friends’, launched in 2012 by the Alzheimer’s Society and Public Health England. Whilst this programme has been successful thus far in turning communication into action over basic awareness of dementia, to overcome stigma, prejudice and social isolation, the programme has its limitations. It is not intended principally for people themselves living with dementia. A programme called ‘Dementia Friends’ cannot be aimed mainly at people living with dementia. Furthermore, “Dementia Friends” does not refer to rights.
These rights are pivotal, however, not only internationally but in domestic jurisdictions. The “Dementia Rights” initiative is written in such a way as to cover the main principles of rights, touching on the social model of disability, but is not dependent on any particular domestic statutory instruments, which are in a state of continual renewal.
The information session is designed to take place between 45 and 60 minutes, to be given by a “Dementia Rights Champion” who is neither an expert in dementia nor in public law. It contains two interactive tasks designed to generate discussion.
I hope you get a chance to explore “Dementia Rights”, to be launched officially in Dementia Awareness Week #DAW2016 by the first Dementia Rights Champions.
- Rights apply to everyone, and ought not to be taken away.
The 1948 Universal Declaration on Human Rights is by far the most widely accepted definition of human rights, encompassing civil and political as well as economic, social and cultural rights.
Human rights are relevant to all of us, not just those who face repression or mistreatment. They protect you in many areas of your day-to-day life. So – in summary, key qualities of human rights have been agreed upon by the international community.
Rights can never be taken away, although they can sometimes be restricted – for example if a person breaks the law, or in the interests of national security.
It has been agreed that human rights must be recognised as:
•Universal: they belong to all of us, to everybody in the world
•Inalienable: they cannot be taken away from us
•Indivisible and interdependent: governments should not be able to pick and choose which are respected. Rights go together with responsibilities.
2. With rights go together with responsibilities expected of individuals.
With rights come responsibilities expected of individuals. “Qualified rights” are rights which require a balance between the rights of the individual and the needs of the wider community or state interest. These inclue: the right to respect for private and family life, the right to manifest one’s religion or beliefs, or freedom of expression.
3. Dementia is in law a disability.
A mental health condition is considered a disability if it has a long-term effect on your normal day-to-day activity. There are many different types of mental health condition which can lead to a disability, including dementia. Dementia is one of the major causes of disability and dependency among older people worldwide.
Under article 9 of an international instrument called the UN Convention of Rights for People with Disabilities, all people with disabilities have the right to access all aspects of society on an equal basis with others including the physical environment, transportation, information and communications, and other facilities and services provided to the public.
3. It is possible to enforce legal rights.
Rights can be used in real life locally and have some “teeth”. Legal provisions in equality and human rights are enforceable in a number of countries, either directly or indirectly.
4. A major function of human rights is protect against discrimination.
Disability comes under this as a ‘protected characteristic’, and dementia is a disability. People are not allowed to discriminate because they have any of the protected characteristics. There is also protection against discrimination where someone is perceived to have one of the protected characteristics or where they are associated with someone who has a protected. characteristic.
Discrimination means treating one person worse than another because of a protected characteristic (known as direct discrimination) or putting in place a rule or policy or way of doing things that has a worse impact on someone with a protected characteristic than someone without one, when this cannot be objectively justified (known as indirect discrimination).
5. What are rights?
Books and learned papers have been written about “rights” and what they mean. Rights are global but are also applicable locally.
Every citizen in the world is protected by rights.
A right gives you an authority for stand up for an interest.
This gives you power to stand up for yourself in life in general.
We hope that this booklet gives you confidence in dealing with others.
It is this rights-based ‘consciousness’ which goes way beyond what is written down in English law.
We hope that this booklet introduces you to examples of these rights.
What are rights important?
It’s important to note that rights are not just legal.
Long before changes to the law in South Africa, there was a moral uprising of opinion that you should not be able to discriminate on the basis of the physical colour of your skin.
There are therefore moral rights.
But it’s also important for you to be aware of another aspect to living in England currently.
That all bodies doing any function of the public sector, including those who provide healthcare, have to obey the law. Nobody is excluded from having to follow the law. This means that any provider of health or care must follow existing human rights law.
Dementia Rights information sessions
I am making the Dementia Rights information sessions materials available freely for all. But I do not want them being run for profit or surplus as “Dementia Rights”. They should be delivered as accurately as possible, without amendment, wherever possible, but I understand that Dementia Rights Champions will have their own backgrounds and own stylistic preferences. This is a social movement, not delivery of a million Mars Bars!
I would urge all Dementia Rights Champions, volunteers to help me with this unique project, to fill out this basic contact form before downloading and using all the materials.
Please use the contact form if you should like to be an ‘approved’ Dementia Rights Champion from the Dementia Society.
Information session plan
It’s hoped that each session will stick to the suggested plan.
It is essential that all times Dementia Rights Champions dispel any notion that Dementia Rights is anything to do with Dementia Friends. The scale of the two are entirely different; they have entirely different, yet complementary aims; they are aimed at slightly different target audiences; the branding of the two initiatives are completely different.
These unique materials are provided in good faith. Under English law, they are provided under copyright in author and ownership according to the Copyright Designs Patents Act 1998.
The Dementia Society should be grateful if the Society could be acknowledged as authors of this unique initiative, and would expect an acknowledgement for use of the materials herewith in part or in complete form. They are not to be used for commercial gain by any organisation, profitable or otherwise.
“Dementia Rights” is an unique initiative, with no funding, aimed to improve awareness of fundamental rights and their relevance to living better with dementia and dementia care, amongst both the general public and the caring professions. It was an initiative launched in July 2016 by the Dementia Society.
Dr Shibley Rahman
The Dementia Society