Dementia Awareness Week 2015. A period of self-reflection will do no harm.

Even Deloitte’s latest report on ‘business ecosystems’ emphasises the importance of collaboration as well as competitions,

“Participants are additionally incentivised by shared interests, goals, and values, as well as by the growing need to collaborate in order to meet increasing customer demands, to invest in the long-term health of their shared ecosystem, from which all can derive mutual benefit.”

A cultural change from an over reliance on medications and treating all people with dementia as ‘patients’ to a perspective on where living well with dementia, such as with aids in the environment or better care and attention from services, is ‘second nature’ is a demanding one.

Traditional programs of ‘dementia friendliness’, such as ‘Dementia Friends’ in England, “Dementia Friendly Bruges”, or the Japanese ‘caravans’ initiative, all ultimately have the aim of destigmatising dementia and to attack discrimination.

I can be aware of my postman, without ever catching sight of him, knowing what he does, or even receiving mail off him. “Awareness” of dementia might mean anything; it could mean wanting to pump money into a cure for Alzheimer’s disease ignoring the other 99 types of dementia, being ‘aware’ that social care funding has been on its knees for the last few years in England, or realising that research into quality of life into dementia continues the ‘bogey man’ in funding priorities of dementia research.

No-one can deny we are overall in England in a better place with ‘dementia awareness’. The Alzheimer’s Society have never had it so good, but even hashtag capture (“#DAW2015) risks promoting ‘Dementia Friends’ and chosen ‘pet’ projects of the NHS and their marketing, at the expense of projects which are indeed languishing. I am frustrated about how little attention Dementia(UK) get for the clinical nursing specialists (CNS) called Admiral nurses compared to  CNS from Marie Curie or Macmillan; and this is a political thing. You would be forgiven for thinking that there aren’t many budding entities in a thriving plural sector; but there are many great people and organisations doing fabulous work.

How many members of the public are also aware of what Alzheimers BRACE, Dementia UK  or Young Dementia UK do? One is tempted even to kick terms such as ‘dementia awareness’ into the long grass, when it is real education and knowledge which are strongly needed, like robust resources for training of the workforce and service provision. Rights-based advocacy becomes harder to promote when you have the repeal of the Human Rights Act, which seems relatively unimportant to the leading dementia charity in the  UK.

Take for example the recent de-commissioning of the Admiral nurses service by Hull CCG. It has fast become clear that many commissioners are attracted by ‘shiny boxes’ and gimmicks (with award winners) rather than material improvements to service provision. Many commissioners are not themselves trained in aspects of living better with dementia policy, such as independent advocacy, design of built environments, integrated housing systems, or the value of clinical specialist nurses in improving the quality of life of people with dementia and also carers.

As if by clockwork, every few months virtually, it seems, there’s a brand new conference on dementia policy. And invariably, the input from people living with dementia will be minimal; or super-human efforts have to be made to convince the organisers that there should be a person living with dementia on the panel at all. People living with dementia are invariably an ‘after thought’. This is in sharp contrast to approaches such as from other units such as CLAHRC East Midlands where there is a proud tradition of involving all stakeholders’ views in service provision and research.

The ‘Dementia Alliance International‘ is a very strong and dynamic community, which promotes the views of people living with dementia including on the world stage such as the recent Alzheimer’s Disease International. They have been at the forefront of discussing issues such as human rights and disability discrimination, and the approach is one of meaningful education by people with dementia rather than ‘training’ or ‘badges’. The current power of this group can be strikingly attributed to the efforts of many, but not least of one of its co-chairs Kate Swaffer (@KateSwaffer).

“Dementia awareness”, however-so defined, can never be able knowing that dementia somewhere exists. It is about knowing basic things, such that it’s not just ‘memory loss in old people’ – it’s about knowing there are various different common forms of dementia which can present in a number of age groups in a number of ways. We must move the agenda on from competitive advantage by people selling ‘dementia awareness’ onto meaningful engagement and empowering, and this also means the mainstream media avoiding pejorative framing methods such as ‘dementia sufferers‘.

Meaningful change will be brought about not without necessarily the grandiosity of ‘change agents’, but by people living with dementia themselves. There are remarkable practitioners from social care backgrounds who also know what dementia service provision means in reality. Physicians such as Dr Al Power can find themselves unique with the medical profession in raising awareness of the offence of the term ‘challenging behaviours’ amongst physicians and nurses being paid being awarded big grants to conduct ‘research’ into them.

Any one person who knows more about dementia as a result of ‘Dementia Awareness Week’ is an achievement, but critically thinking about the quality as well as the quantity of research is on its knees. The market, with some untrained commissioners, currently is not delivering high quality service provision in dementia; and we need better awareness of that and many important related issues too.