“A community where we’re nice to everyone? It might catch on.”

The word ‘friendly’ in the term “dementia friendly communities” defies definition. At the very worst, it has a twang of “does he take sugar?” about it.

The reasonable question which most of us have thought about is why focus on people with dementia? This from a commissioner’s perspective is a worthy one – why not “depression friendly communities” or “first episode psychosis friendly communities”?

It is indeed curious how much friendliness can be compatible with division.

Take for example the historic segregation in Cape Town, South Africa. It is argued that racial segregation was facilitated by spatial urban planning which imposed natural boundaries such that the centre could be a ‘white only’ zone.

The whole history of how segregation was achieved this way is described succinctly in an article.

spatial planning

It’s possible, though I do not know the precise findings, that people who are of the same colour tend to live together. This has of course been the subject of many previous discussions, often heated, about whether we truly live in a ‘multicultural society’.

Even beyond this traditional segregation, even in a society which allegedly has accepted differences, as say defined by the protected characteristics under equality legislation, it is possible for tacit division still to persist.

For example, a blogpost recently boasted of destinations which were particularly friendly to the ‘young black professional‘.

Where am I heading with this? I am simply saying that cultural divisions can exist even if protection is enforced within the law. I have referred to this as ‘moral rights’ because for legal rights to exist they need to be part of the law (either common law or in statute) first. Racial discrimination was abhorrent, many feel, before formally legislated upon.

This has all come to the fore with the issue of ‘rights based approaches'; that everyone has legal human rights, which protect dignity, and right to a private life, and protect from discrimination.

The problem with any law is that the law is only as effective as how well it is drafted, or how it is enforced. For example, the lack of efficacy of the national minimum wage has in large part been to lack of effective enforcement, it has been argued.

I feel ‘standards’ for dementia friendly communities are helpful, such as those from the Alzheimer’s Society, otherwise the term itself is open to abuse.

But it is important to be clear about what a dementia friendly community is definitely. Lack of inclusion of an obvious issue in this quasi-legal framework could render it seemingly unimportant.

For example, some ‘gay friendly cities‘ have been defined thus: “Publications like “The Advocate” base their annual rankings on criteria like the number of LGBT elected officials and protective policies and legislation, as well as the community’s level of participation in gay friendly sports, competitions, and social groups. ”

And indeed it is currently a “right”, under the UN Convention for Rights of People with Disabilities, for people with disabilities (however defined) to have proper democratic representation.

For example, article 29 defines a right to be included in political and public life, including an encouragement for “participation in public affairs”.

Should not a World Dementia Council have included from the start a person living with dementia who was democratically nominated onto that panel? Surely that comes under dementia friendly communities?

The alternative is that we do treat everyone equally, with kindness.

“A community where we’re nice to everyone? It might catch on.”



Pharma can have an important rôle to play for dementia, but we should not be afraid to ask what


It’s a pretty big ask to call for ‘a cure for dementia by 2025′.

But I was thinking of it from the other perspective. What if there were ‘a cure for dementia’? Should one be ungrateful to all the world leaders, other politicians and various stakeholders for giving such prominence to this initiative?

Medicine is a funny old game. Patients ideally want certainty, not a diatribe of qualifications on what their diagnosis might be.

But, say, with the introduction of clearer genetic information, we’re now realising that many of the dementia presentations appear as a spectrum.

For example, the ‘semantic dementia spectrum’ conditions contain a mélange of different presentations of specific dementia conditions involving language, and a person may not easily fit into one diagnostic category.

Frontotemporal dementia contains a group of conditions which affect the frontal (front) and temporal (near the eye) parts of the brain. But it is not uncommon for doctors to revise their diagnosis that what they thought was predominantly ‘a frontal presentation’ turns out to be a ‘temporal presentation’, depending on the involvement of behavioural changes.

Dealing with uncertainty is an issue most of us feel uncomfortable with. Greater certainty is given for a dementia diagnosis following a person with time; the greatest certainty is offered post mortem, it might be argued.

In this ‘now generation’, it is not good enough for people to be languishing without a diagnosis. But I feel this diagnosis has to be in the right hands. It is a travesty to give someone a diagnosis when he or she does not live with a dementia; likewise it is a travesty to deny someone of a diagnosis.

We should be able to ask earnestly for more resources for primary care, if we wish them to be more confident about making the diagnosis; otherwise it is literally a case of leaving someone in limbo until the diagnosis is ‘sorted out’ by memory clinic sometime later.

A cure for dementia would heal some pain in providing certainty. But it is this ambition, I feel, which generates uncertainty we should confront with full transparency.

It is known that there are 47 million people living with dementia currently. What are we to offer these people even if we find a cure?

The most common type of dementia is the dementia of the Alzheimer type, with problems early on in learning, memory and attention. But will our ‘cure for dementia’ work for other dementias?

Will a ‘cure’ be a ‘cure’? Might be more accurate to say a condition is abated, in ‘total remission’, like cancer?

I find the drive for a cure for dementia interesting, as it is so poorly defined.

There are 1 000 000 000 000 000 nerve cells, all intimately connected with one another, so how for example are we going to target the pathological cells without affecting the healthy cells?

It is a brave man indeed who takes on the complexity of the human brain.

When you give a clinical diagnosis to someone, you are not only providing the diagnosis to him or her, but also his or her friends and family. Likewise, when we are building up expectations for a ‘cure for dementia’, what message are we trying to give the million or so caregivers, a majority family and unpaid, who are living with others’ dementia currently?

But likewise I think the contribution that Pharma could play in symptomatic relief for any of the dementias is not to be dismissed. Even then, one does not think of ‘curing asthma’ as we provide symptomatic relief through opening up airways through a bronchodilator, rather than some complicated intervention on the lungs.

Likewise, one does not easily think of ‘curing headache’ in that we are providing symptomatic relief by easing blood flow, perhaps, rather than some complicated neurosurgical operation on the brain?

It would be great for Pharma to be able to offer something, such as a pharmacological agent which could stop dementia in its tracks in its pre dementia stage. But we currently neither have the agent, nor the reliable identification of the pre dementia stage.

But we do have 47 million people wanting to live better with dementia – with concomitant caregivers – and it is our duty, with or without politicians, or with or without ‘Big Charity’ – to do something about that?