Dementia Rights

A sense of agency and urgency is at the pivot of ‘dementia rights’.

Shibley Rahman 0 Comments

This week, the first two ever Dementia Rights Champions will give their first information sessions in the innovative ‘Dementia Rights’ programme.

Dementia Rights is a novel, innovative programme designed not just to dispel the stigma and prejudice which can surround dementia, but also is supposed to be of practical help to people living with dementia in the UK to help ‘unlock’ their rights.

Dementia Rights information sessions are about 45-minutes to 60 minutes, and are designed to spread five key messages the Dementia Society  thinks everyone should know about rights.

These are shown on their pledge card.

#DementiaRights

There are currently about 900,000 people in the UK who’ve received a diagnosis of dementia. All of them are defined by their unique identities as persons, not defined by the labels of the dementia diagnosis. The Dementia Friends programme from the Alzheimer’s Society and Public Health England was a social movement launched in 2012 as part of the Prime Minister Dementia Challenge to help to raise awareness of dementia.

One of the key messages in Dementia Friends is that it is possible to live well with dementia. For ‘Dementia Awareness Week’, the Alzheimer’s Society is asking everyone to confront dementia. Their research yet further shows that people are on the whole reluctant to seek a diagnosis. This is possibly due in part to the negative social perception of dementia.

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I presented a talk earlier this year in Budapest at the 31st Alzheimer’s Disease International Conference. This talk presented novel survey data on how knowledge of legal rights from domestic and international instruments was generally poor. This lack of knowledge about rights is a major barrier to the widespread adoption of rights internationally, it is felt.

The international stakeholder group of people with dementia “Dementia Alliance International” have led on this rights based initiative to promote rights. As part of campaign, they have been globally concerned with making sure that people know that they can ‘make a difference’. This sense of agency and urgency is pivotal to make rights for dementia a reality. You can support their brilliant work directly here.

There is a growing feeling that rights based advocacy in dementia is not at all about people making money ‘out of opportunities’, and death by powerpoint or commissioning. I have written a pamphlet on the application of rights in England and Wales jurisdiction, which contains general principles of use in other jurisdictions. I am making this work available for free, but this is no replacement for actual legal advice; the pamphlet is clearly meant to be a general introduction to the area.

You can access this pamphlet here

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You can help this Dementia Rights movement, by contacting me if you want to become a Dementia Rights Champion. I’d love to hear from you.

 

#DAW2016 Dementia Awareness Week: The Five Key Messages of ‘Dementia rights’

Shibley Rahman 0 Comments

#DementiaRights

“Dementia Rights” is a social action movement that aims to increase understanding of the importance of rights and dementia and inspire people to take action to promote these rights in the community.

To become a Dementia Rights Supporter, all you need to do is learn five key messages that we think everyone should know about dementia and rights in any country, and then commit to take an action which promotes rights in dementia.

1. 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.

4. 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.

5. 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).

A quick word about my campaign ‘Dementia Rights’

Shibley Rahman 1 Comment

Dementiarights

I intend to launch a campaign called ‘Dementia Rights’.

But I should like to say a few words.

I do not wish to give the impression that I am campaigning on behalf of people with dementia on this. This would be to overrule every instinct I have on this. I have always believed that people after a diagnosis of dementia need to be leading on campaigns themselves. What I have found a bit annoying is some people using people with dementia to further their own script. Like an authentic newsreader.

For this reason, I have decided to time the launch of this at an appropriate time in relation to the Dementia Alliance International (DAI). I think the primacy of their work is paramount. With Dementia Awareness Week in the UK coming up, I’d like to ensure that the spotlight is shining on the right targets. I will be supporting ‘Dementia Friends’ as a Dementia Friends champion as usual.

I part company from the ‘Dementia Friends’ initiative a bit in that I feel the campaign caters well people for people who do not have dementia, and unwittingly produces a ‘them against us’ situation. I find the word ‘friends’ a bit patronising, but I know no malice is intended. It reminds me of ‘Does he take sugar?’ – that’s all.

This morning I was asked to discuss about the use of the hashtag ‘#DementiaRights’ not from anyone I work with usually. The criticism is that human rights are universal and therefore should not be constrained for people with dementia. This is of course correct, and it is an argument I have made myself indeed. But on the other hand I do think for too long, as a person outside of the community of people living with dementia, that the rights of people with dementia have been somewhat ignored – take for example the primacy of the ‘dementia friendly’ (rather than ‘dementia inclusive’) approaches, or the inability to segregate carers’ rights from the rights of people living with dementia. I should like to emphasise that carers’ rights are extremely important too for distinct reasons.

I will not be flogging ‘Dementia rights’ to any commissioners. I will make the materials freely available for anyone to use. Money will not be involved in any way. I am very irritated as you know with dementia being exploited for commercial gain.

The material of ‘Dementia Rights’ will not be confined to any particular geographical jurisdiction.

The format of ‘Dementia Rights’ will be, like Dementia Friends, a public awareness session given by anyone. It will have five key themes, and will be built around various activities and an original analogy of mine to explain human rights.

The aim of this initiative is to bomb policy with rights-based advocacy, and to get people talking about dementia rights. I don’t have the infrastructure of Big Charity, or the resources, but never deny the good which can be done from small acorns, to corrupt a Margaret Mead quotation often used by DAI themselves.