Dementia as a disability needs to encourage sustainable achievable goals

Earlier this year, Jessica Kingsley Publishers published my book ‘Living better with dementia: good practice and innovation for the future’.

As in previous work of mine, I wished to emphasise that the ‘nothing can be done for people with dementia’ philosophy is wrong. In fact, there is currently a legal obligation in England and Wales for any entity subserving a public function to obey the regulations of the Equality Act (2010). At an international level, the significance of viewing dementia through the prism of disability is further emphasised in a joint statement from Alzheimer’s Disease International and Dementia Alliance International published today.

Under this instrument, it states clearly that dementia is a disability. The consequences of this legally is there’s an obligation to make ‘reasonable adjustments’ for people living with dementia, treating any cognitive disability on par with a physical disability. In the same way you would implement wheelchair ramps to allow equal access to your buildings for your employees, you’d also give them the best way for them to do their job – if they needed, say, aids in reading out text on a computer.

Not all rights are enshrined in law, by any means, and there is the unintended consequence that laws which are not enshrined in law are perceived as not worth worrying about. But this is actually far from where we are on disability law. The United Nations in fact observes the International Day of Persons with Disabilities on Dec 3, 2015, and it can be tempting to see this arm of work as somehow totally different from other work such as “age friendly cities”. Rights are an important basis of advocacy, and I was determined to emphasise the rights agenda in my book – here’s an extract to explain.

This year, three themes are highlighted in the agenda: making cities inclusive for all, improving disability data and statistics, and including those with invisible disabilities in society and development. Of course, we don’t just have ‘age friendly cities’ or ‘dementia friendly cities’. You can develop a dementia at any stage, though the risk of developing dementia gets bigger as you get older. Dementia is not just something ‘old people get’. And we should be thinking about making all communities not just cities ‘friendly’, but a better philosophy is to require communities to be accessible and inclusive.

This cartoon conveys the sentiment felt by many of us: “dementia friendly communities” should be good for everyone, and the label jars uncomfortably with the aspiration not to label persons by their label – or specifically medical diagnosis.

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These themes echo the specific mention of persons with disabilities in five of the Sustainable Development Goals (SDGs): education; economic growth and employment; creation of inclusive, safe, resilient, and sustainable cities; reduction of inequalities; and data collection related to monitoring the SDGs. I think this is particularly important as dementia does not just affect people in more economically developed countries. All of us in policy need to make better links between the sustainable development goals and the ‘dementia friendly communities’, and to think especially how people living in low and middle income countries (LMIC) may also benefit from current initiatives too. I think the ‘care for today, cure for tomorrow’ oversimplifies the current situation, but through the sustainable development goals we have a means of achieving something sustainable and measurable.

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