community

Connectedness, continuity and community: going beyond ‘friendliness’

Shibley Rahman 1 Comment

I do not have any ideological objection to ‘dementia friendly communities’. It is hard to object being friendly however it is defined, so long as it does not foster a sense of belittling or victimhood for me.

However, it does concern me how superficial this construct is, potentially.

If you wish to extend the notion to providing reasonable adjustments, or ‘cognitive ramps’ as Al Power refers to them, it makes sense to me to know exactly what sort of residual cognitive abilities exist in the diversity of people living with dementia. That way you can seek to change the environment to make life easier (e.g. appropriate signage around buildings).

That is more meaningful than being ‘friendly’.

Kate Swaffer is the person who has coined the term ‘living beyond a diagnosis of dementia‘. I think her phrasing of it is very powerful one. It for me conveys the added dimension of life after the diagnosis has been made. It also begs the question of how a person makes a connection between his or her future, with his or her own past.

This is a different approach to the idea of an abrupt change of a ‘person with dementia’ compared to a ‘person without dementia’. The phrase combats directly the loss of continuity.

It’s reassuringly said, quite often, “But you’re the same person as you were before you officially had the diagnosis”. And this is of course true.

But the moment this diagnosis is disclosed means that changes occur; for example, in his or her ‘connectedness’ with the rest of the world, including perhaps employers, friends and family. And clinicians can treat you very differently.

A major aim of policy should be trying to combat the loneliness and isolation which can accompany the disclosure of a diagnosis of dementia. But it is hard to deny that this is fundamentally how a person’s social network changes after a diagnosis.

Tom Kitwood was way ahead of his time to think about this connectedness. Whenever mental stress is imposed on somebody, physical health is affected. Any abrupt change of environment or friends can be hugely unsettling. Of course, this is precisely what happens if a person with dementia enters a residential setting.

The dynamic changes in social network for a person beyond a diagnosis of dementia can be extensive, and yet we talk about dementia friendly communities as if they are always static phenomena. In other words, once they are built in a certain cost-neutral way they will remain so forever. They will remain just as they have been, prior to anyone person receiving a diagnosis of dementia, and for evermore.

I have often asked people with dementia how they feel about many close friends leaving them at the time of their diagnosis. Some of them have remarked that of those old previous friends who have remained as friends the friendship has become much less superficial.

Of course people have different experiences.

Maybe then the social network of a person living with dementia can be just as cohesive, even if consisting of different people. Therefore, the only continuity will be in society’s attitudes at large towards people with dementia.

And of course the person without dementia can become the person with dementia at any time. In an ideal world, the community should be worth living in whether you have dementia or not. What was wrong with the old approach of wanting to be as inclusive to everyone as much as possible?

I think overall the biggest failing of the ‘dementia friendly communities’ is that implies we all are in rigid groups of with dementia or without dementia, and we are defined by our label. This does not take any account of the changing relationships between us all at any given time.

But it might possibly be better than nothing?

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

Shibley Rahman 0 Comments

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.”

 

 

A person newly diagnosed with dementia has a question for primary care, and primary care should know the answer

Shibley Rahman 0 Comments

GP seeing his patient

Picture this.

It’s a busy GP morning surgery in London.

A patient in his 50s, newly diagnosed with Alzheimer’s disease, a condition which causes a progressive decline in structure and function of the brain, has a simple question off his GP.

“Now that I know that I have Alzheimer’s disease, how best can I look after my condition?”

A change in emphasis of the NHS towards proactive care is now long overdue.

At this point, the patient, in a busy office job in Clapham, has some worsening problems with his short term memory, but has no other outward features of his disease.

His social interactions are otherwise normal.

A GP thus far might have been tempted to reach for her prescription pad.

A small slug of donepezil – to be prescribed by someone – after all might produce some benefit in memory and attention in the short term, but the GP warns her patient that the drug will not ultimately slow down progression consistent with NICE guidelines.

It’s clear to me that primary care must have a decent answer to this common question.

Living well is a philosophy of life. It is not achieved through the magic bullet of a pill.

This means that that the GP’s patient, while the dementia may not have advanced much in the years to come, can know what adaptations or assistive technologies might be available.

A GP will have to be confident in her knowledge of the dementias. This is an operational issue for NHS England to sort out.

He might become aware of how his own house can best be designed. Disorientation, due to problems in spatial memory and/or attention, can be a prominent feature of early Alzheimer’s disease. So there are positive things a person with dementia might be able to do, say regarding signage, in his own home.

This might be further reflected in the environment of any hospital setting which the patient may later encounter.

Training for the current GP is likely to differ somewhat from the training of the GP in future.

I think the compulsory stints in hospital will have to go to make way for training that reflects a GP being able to identify the needs of the person newly diagnosed with dementia in the community.

People will need to receive a more holistic level of support, with all their physical, mental and social needs taken into account, rather than being treated separately for each condition.

Therefore the patient becomes a person – not a collection of medical problem lists to be treated with different drugs.

Instead of people being pushed from pillar to post within the system, repeating information and investigations countless times, services will need to be much better organised around the beliefs, concerns, expectations or needs of the person.

There are operational ways of doing this. A great way to do this would be to appoint a named professional to coordinate their care and same day telephone consultations if needed. Political parties may differ on how they might deliver this, but the idea – and it is a very powerful one – is substantially the same.

One can easily appreciate that people want to set goals for their care and to be supported to understand the care proposed for them.

But think about that GP’s patient newly diagnosed with dementia.

It turns out he wants to focus on keeping well and maintaining his own particular independence and dignity.

He wants to stay close to his families and friends.

He wants to play an active part in his community.

Even if a person is diagnosed with exactly the same condition or disability as someone else, what that means for those two people can be very different.

Once you’ve met one person with dementia, you’ve done exactly that: you happen to have met one person with dementia.

Care and support plans should truly reflect the full range of individuals’ needs and goals, bringing together the knowledge and expertise of both the professional and the person. It’s going to be, further, important to be aware of those individuals’ relationships with the rest of the community and society. People are always stronger together.

And technology should’t be necessarily feared.

Hopefully a future NHS which is comprehensive, universal and free at the point of need will be able to cope, especially as technology gets more sophisticated, and cheaper.

Improvements in information and technology  could support people to take control their own care, providing people with easier access to their own medical information, online booking of appointments and ordering repeat prescriptions.

That GP could herself be supported to enable this, working with other services including district nurses and other community nurses.

And note that this person with dementia is not particularly old.

The ability of the GP to be able to answer that question on how best her patient can lead his life cannot be a reflection of the so-called ‘burden’ of older people on society.

Times are definitely changing.

Primary care is undergoing a silent transformation allowing people to live well with dementia.

And note one thing.

I never told you once which party the patient voted for, and who is currently in Government at the time of this scenario.

Bring it on, I say.