First of all, I should like to say at the outset that I don’t particularly like the term ‘early stages of dementia’. There are about a hundred different causes of dementia for a start, and they all progress in persons in an unique way at sometimes vastly different rates.
Helga Rohra, Chair of the European Working Group for Persons with Dementia, instead prefers to refer to the ‘faces’ of dementia. And this indeed is much more in keeping with a ‘person-oriented’ perspective.
Let us say, for the sake of argument, that whatever ‘dementia’ you’re talking about, there is an earlier period when you are developing symptoms of your own dementia and that you happen to be at work.
For the dementia of the Alzheimer type, you could have noticed problems in your learning and short term memory. You might’ve found yourself getting lost in travelling what should’ve been straightforward routes.
Or for posterior cortical atrophy, you happen to have noticed problems with your eyesight, seeing double, or things blurred; oe even falling – and forgetting the odd thing or to.
The reality is that the onset of a dementia can be quite subtle, and, if you’re in work, you may happen to think it’s unlikely your difficulties are due to a dementia. The problem with ringing up a ‘dementia hotline’ in a dementia charity is that you can get taken down a dementia ‘pathway’ of questioning; thus your symptoms are not given consideration for non-dementia causes.
The aim of the ‘dementia friendly communities’ policy worldwide, I feel, has been totally underestimated for its aspiration for people who’ve been given a diagnosis of dementia to ‘live better’.
Whilst I balk at the terms of ‘successful’ and ‘productive’ being used as labels in reference to an individual’s lifestyle, the idea that someone could live independently with appropriate support is entirely consistent with a philosophy of reablement and rehabilitation after diagnosis.
Kate Swaffer’s seminal work in prescribed disengagement (TM) all too clearly defines how things can be made to appear to be going downhill following a clinical diagnosis of dementia. Kate’s work is inspirational as it gives people hope, and gives a clear explanation of what happens. I don’t want to appear hyperbolic, but this work has the same potential to be of equal gravitas as that by great leaders who’ve changed the course of history.
Companies vary hugely in their resource allocations ability. I suspect we will see this as British businesses decide upon whether they wish to stay in Europe. Not oversimplifying the debate, but small and medium enterprises might have a somewhat different attitude to the ‘red tape’ of Europe to the free movement of capital and movement opportunities presented for large multinational corporates.
There is no reason to suggest that workplace policies will differ.
The World Health Organization has previously explained the background to the importance of its work on non-communicable diseases for the workplace.
“The European Network for Workplace Health Promotion has similarly issued a number of statements in support of workplace health promotion, including the Luxembourg Declaration on Workplace Health Promotion in the European Union, the Lisbon Statement on Workplace Health in Small and Medium Sized Enterprises and the Barcelona Declaration on Developing Good Workplace Health Practice in Europe.”
In response to the global burden imposed by noncommunicable diseases, WHO developed the Global Strategy on Diet, Physical Activity and Health (DPAS), which was adopted by the 57th World Health Assembly in May 2004. The goal of DPAS is to promote health by guiding the development of an enabling environment for sustainable actions at individual, community, national and global levels which, when taken together, will lead to reduced disease and death rates related to unhealthy diet and physical inactivity.”
As Kate Swaffer pointed out in a workshop for the Alzheimer’s Disease International conference in Western Australia in April 2015, people developing symptoms of dementia should be given the opportunity of whether they wish to stay in employment. If the person then does wish to do so, then there’s no reason to consider dementia as anything other than a disability (if indeed given a diagnosis of dementia); and this should bring with it legal rights against discrimination in theory. The same rights, in theory, are supposed to protect against unfair dismissal, although what happens in practice (especially in relation to when the diagnosis becomes ‘official’) is a complicated area.
The timing of this diagnosis is therefore all crucial. Irrespective of local difficulties in human rights legislation in England, the Universal Declaration of Human Rights applies all around the world to enforce universal inalienable rights. It’s a matter of semantics whether dementia is a disability as far as the United Nations Convention of Rights for People with Disabilities, particularly in relation to transposition to local law, is concerned – but many feels dementia does ‘fit'; and certainly does so in relation to the guidance on the Equality Act (2010).
So people living with disabilities, whether or not they are in the workplace, should be protected by human rights law. And we saw hint of this need for corporates to sign up to this from guidance for corporates on corporate social responsibility and human rights (from guidance issued in 2012).
Google is a multinational corporate, with huge clout.
That is why their lead is particularly noteworthy. They have recently announced the following:
“One billion people worldwide live with a physical or developmental disability. And for those in developing nations, many of these disabilities dictate a life of social and economic marginalization. But Google’s doing something about it. The company announced Tuesday that it is funding a $20 million grant for its latest Impact Challenge, one aimed at making the world more accessible for those with disabilities.”
“Specifically, the new Google Impact: Disabilities program seeks to “build awareness, identify solutions and help create universal access for people with disabilities.” To that end Google is soliciting people on both sides of the issue — people (or those whose family are) living with a disability as well as innovators, inventors and tinkerers. The Google’s has already teamed up with non-profit startups like Mission Arm, E-Nable and World Wide Hearing, and now it’s looking to fund more solutions to the tune of $20 million.”
The confluence of rights-based approaches, Big Money and dementia friendly communities is a highly significant one. It is vital that stakeholder groups such as the Dementia Alliance International, as the only international group run by people with dementia advocating for people with dementia, are amongst the first in line to make a pitch.