THE BLOG

Making A Statement About Dementia

24/08/2017 14:58

Across healthcare, social care, the third sector and enterprises large and small, awareness of dementia has never been greater. Many employees and business owners will be familiar with Dementia Friends, and the principles that underpin that initiative, but ask people about the Dementia Statements and you'll probably get a very blank expression unless their organisation are active members of the Dementia Action Alliance (DAA).

Back when I joined the DAA 2013 , signing up involved supporting the National Dementia Declaration and the 'I-Statements' that had been the founding principles of the DAA in 2010. In 2016, the 'I-Statements' were reviewed by people living with dementia in collaboration with the DAA and the Alzheimer's Society, and earlier this year the Dementia Statements were launched.

Grounded in human rights law, the Dementia Statements reflect what people with dementia say is essential for their quality of life - what a life beyond their diagnosis should be like. I loved the 'I-Statements' because they were written from the perspective of a person with dementia, and the Dementia Statements follow the same principle, each one beginning with 'We' to reflect what people with dementia and everyone personally affected by dementia needs.

The five statements are:

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We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it.

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We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.

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We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.

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We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.

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We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.

Reading the statements, you might think how obvious they are, what common sense they demonstrate, and potentially even wonder why such statements are needed - All this stuff happens anyway, right?

Sadly wrong. Many people living with dementia aren't seen as the individuals they are, don't have choice and control, experience risk-aversion from those around them, aren't facilitated to contribute to society or supported with their day-to-day and family life, can end up spending vast sums on care and support, experience significant isolation and loneliness, are subjected to a postcode lottery of diagnosis and post-diagnostic support - often being viewed as people to do things 'to' rather than as partners in their care - don't receive training, and may never know about research opportunities, let alone be able to take part.

People living with dementia who have a life that is more reflective of the Dementia Statements probably have that because they've had the resources, determination, wherewithal and support to construct that life for themselves - in spite of, not because of, what has been offered to them. Ironically, those people are then frequently the individuals who others doubt are even living with dementia, and who become ineligible for disability benefits precisely because they haven't become a drugged up, dribbling wreck sitting in the corner of an antiquated elderly mentally infirm unit (that description matches how my dad was treated at one point in his 19 years with dementia).

The Dementia Statements, for all their common sense, really need to become commonplace. They need to be ingrained into every care and support service and every community. The way I approach incorporating the statements into my work is to break down what I can effectively incorporate into my consultancy, training and mentoring - the points about choice, control, risk-taking and combatting loneliness for example - with the elements that form part of my campaigning, writing or blogging work - the points about education, cost, discrimination and research for example.

The statements are broad and far-reaching, and no one can tackle every element through their individual work, but by taking a statement or part of a statement that you can achieve, and working really hard to realise that ambition, you will go a long way towards making the Dementia Statements a reality for everyone living with dementia.

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