decision-making

I have not set out to build a social movement, but I want to do this for persons with early dementia

Shibley Rahman 1 Comment

I received this message last night.

private message

The thing is, I don’t buy into the profoundly negative imagery of the media, including memes such as “crippling”, “horrific”, “timebomb” and “explosion”.

Whilst some people, and caregivers, are undeniably “suffering”, you can’t expect all people to agree with this particular narrative at all times, I feel.

One of the things I’ll never forget was when my Ph.D. supervisor, Prof John Hodges, received a complaint about me doing neurocognitive assessments in a person with frontal dementia back in 1997.

This type of dementia, commoner in an age group below 60, is characterised by a personality and behavioural change early on, often in the absence of deficits in thinking such as memory or perception. You need an account from someone very close to that person with dementia, as the person himself or herself can have no insight into the changes.

I remember saying to the wife of a young man with this type of dementia, “I would never have guessed that he had a dementia”. This comment had upset her very much, and by that stage I was years into my medical training.

This one event is something I’ve never forgotten in the 16 years subsequently.

I remember I literally didn’t sleep for a week, and I was profoundly upset by this. But it does lie to the heart of some of my reservations about the term ‘dementia friendly communities’. There are some people for whom you would not be able to tell they were living with dementia.

I understand the focus on memory problems in the general media, as this can be a dominant presentation in typical Alzheimer’s disease, the commonest form of dementia. But memory is only one of the cognitive functions we have.

What unites all people with dementia is that the law makes a verdict on whether they are able to make decisions. This is called legal capacity.

Decisions impact on many aspects of life, such as working out how to spend your money, or which treatment to go for in hospital.

And capacity is very topical. Not only is the House of Lords seeking to update the Mental Capacity Act (2005), but also neuroscientists currently want to know what members of the public think about their research on decisions.

This is therefore not about denying compassion or dignity for all persons with dementia. It’s about redressing a power balance, where I feel people who’ve just received a diagnosis of dementia might learn something constructive about dementia, decisions and science of how to influence decisions.

This is profoundly about having a discussion with persons with dementia.

I’ve been on the receiving end of ‘look at my website’ and I find it intensely nauseating. But I wish my website, which I intend to build with funds from a crowdfunding campaign and scientific grant bodies, to allow persons with dementia to think about their own decisions.

It’s well known in the science of decisions for example that some ‘bad’ decisions can be avoided by not following ‘hot impulses’ or following the ‘herd effect’.

So here is my explanatory video:

Whilst I have been urged to make this campaign so that ‘it touches every person with dementia’, I do also want a grown up conversation without dumbing down any of the concepts.

A lot of feedback has concentrated on the ‘social movement’ aspect of it, but I should like to say whilst I say I would like to build one, I really mean it’s important for me personally that this gathers some momentum.

And I think it will from initial feedback from persons with dementia, and even people involved in the NHS and social care.

All too easily dementia policy can have more regard to marketing and tokenism, which lends itself to commissioning ‘tick box’ culture. My campaign is not for them.

And I’ve got a bit of a shock for some people – I am determined to make a big success of it.

My plans for a crowdfunding campaign to empower decisions in people with early dementia

Shibley Rahman 1 Comment

The power of decisions for people living with early dementia

This project is dedicated to all persons living with dementia, carers and caregivers, all other people touched by dementia past present or future, and more.

The need

Decisions are crucial to our lives. Every person is unique.

A person’s ability to make decisions is defined legally as his or her “capacity”.

The brain is fascinating. It’s also incredibly complex. Neuroscience is beginning to work out how decision-making is affected in people with early dementia.

We’ve been told by many people who’ve been diagnosed with dementia that they’re interested in how the brain makes decisions.

Dementia can happen to anyone, but we should be motivated as all members in society to encourage people with dementia to live as well as possible.

Every individual with dementia is different. There are about a hundred different types of dementia.

The aim of this project is to build a social movement to empower people living with early dementia to think about decision-making. It’s about explaining the science of decisions in early decision. This is also about inviting people including those with dementia to think about their decision-making in an exciting way, and to participate in ways of influencing them for the better.

 

Our idea

This project is to design a website for all to enjoy, but including people who’ve been newly diagnosed with dementia.

This will provide exciting videos about why decisions are so pivotal in understanding dementia. We hope to produce exciting creative films to explore this topic by asking a professional filmmaker, James Murray-White, with a known interest in dementia and a proven record in film making.

We will design our website is so that they can understand the science of what a dementia is and how it affects decisions. It’ll also have an interactive blog.

The website will build on the RSA’s “Social Brain” findings in “Steer” (2010), but will also make use of cutting-edge research such as Daniel Kahneman’s “Thinking fast and slow”.

People with the earliest stages of dementia can think about their decisions.

People will know about it through my Twitter (@legalaware). We’ll also set up a special new Twitter account to promote the project.

 

The future

People with dementia can also tell neuroscientists what they feel they should be researching, and tell lawyers what they think about “capacity”.

They can get directly involved in policy making without any middle men, in keeping with the RSA’s philosophy and values.

With being empowered to make better decisions, people with early dementia can also lead communities. They would be not just be “involved” in communities which are “friendly” to them.

We’re also hoping that as the project establishes itself it will provide a core offering in NHS packages for people living well with dementia, a key national policy priority.

 

Who’s behind it?

Our team consists of three people.

1. Dr Shibley Rahman FRSA – academic in dementia, with book chapters, a book, original research papers and keen blogger on dementia http://www.livingwelldementia.org

2. Dr Marian Naidoo FRSA – dementia specialist in dementia-friendly communities

3. Kate Swaffer – a person living with dementia in Adelaide, Australia; Chair, Dementia Advisory Committee at Alzheimer’s Australia; Volunteer; a powerful advocate for people living with dementia, whose blog already has a powerful international outreach.

 

Rewards

Please support this project.

We are trying to raise £2500.

The ‘rewards’ for participating are awesome.

Backers will get

1. For up to 50 people: £5 or more

A special name mention/shout-out on the website,

2. For up to 30 people: Pledge £15 or more

a special limited edition e-book by the authors explaining decisions, the science of how decisions are affected in early dementia, and what all people might do to influence their decision-making

3. For up to 30 people: Pledge £15 or more

a special limited edition attractive mug so that you can demonstrate your personal involvement with this project; price includes postage and packing

4. For up to 30 people: Pledge £20 or more

a special limited edition attractive T-shirt so that you can demonstrate your personal involvement with this project; price includes postage and packing.

5. For up to 30 people: Pledge £25 or more

a special limited edition attractive tote bag so that you can demonstrate your personal involvement with this project; price includes postage and packing

6. For up to 30 people: Access to special privileged areas of the website for £40 or more pledges

  • we are offering access through a special username and password unlimited access to certain protected parts of the website
  • there will be special information sheets about the science of decisions and early dementia, and how they can be influenced; with special access to other resources such as videos or blog articles.
  • this may be especially of interest to NHS commissioners.

6. For up to 20 people: Mentions in my new book ‘Living better with dementia’ for £30 or more pledges

I have already written a well-received book on ‘Living well with dementia’ which has very good reviews. I am offering exclusively mentions for up to 20 people involved in this project special mentions in my follow-up book ‘Living better with dementia’.

7. For up to 30 people: Invitations to a special workshop afternoon for £30 or more pledges

In our special-invite only workshops, we’ll be presenting the science of decisions, and be discussing how these are affected in early dementia, and what we know from the science about what can be done to influence them.

8. Recognition as a sponsor – pledges of £100 or more

We’ll proudly recognise your contribution on our website for a year and in our promotion of this initiative, which could include in NHS commissioning rounds.

 

The future

A chance to shape policy through NHS strategic commissioning decisions.

 

 

Risks and challenges

We feel that this is an incredibly exciting project, concentrating on what people with early dementia can do, rather than what they cannot do.

The main risk is that our website, described above, fails to explain the importance of decisions in early dementia. We hope as well experienced authors we’ll do a very good job of it though.

But we hope the resources will have been written in a way that is easily accessible, and inclusive by experts with considerable experience in this area.

We will instruct a proficient designer of websites, with a proven track record, to make the website for us.

Our project is all about people working together.

That brings challenges to make sure enough people feel engaged, but our experience from our involvement in social media (e.g. @legalaware with 11000 followers), interested people love being engaged.

We have put our time and effort into these projects because we believe in people getting involved – with each other, with their community, with making things better.

 

FAQ

The RSA’s curated area on Kickstarter selects the best new ideas to help tackle social problems that its 27,000 Fellows are looking to deliver. I’m an RSA Fellow and have been selected to be a part of this. 
Visit www.kickstarter.com/pages/rsa to see more RSA-backed projects and find out more about the RSA.

Thank you.

 

 

Why I’m on a mission to explain the science of decisions to people living with mild dementia

Shibley Rahman 0 Comments

As a person who is physically disabled, and who has a speech impediment due to a meningitis from 2007, I am more than aware of how people can talk down to you in a patronising way.

It’s why I am very sensitive about language: for example, even with the best intentions in the world, “dementia friendly communities” conjures up an intense feeling of ‘them against us’.

It’s really important to not do anything which can cause a detriment to any group of people.

If you happen to be living with a condition which could cause you to have difficulties, this is especially important.

A “dementia” might be a disability under the Equality Act, and the person you’re speaking to might not obviously to you be living with a disability – it’s a ‘so-called invisibility’.

disability

But – I’m deadly serious this. People shouldn’t be judged on what they can’t do. We all  have failings of some sort. People should be encouraged for what they can do whenever possible. I don’t, likewise, consider the need for policy to embark on ‘non-pharmacological interventions’ as if what I’m talking about is second fiddle: living well with dementia is a complete philosophy for me.

In any other disability, you’d make reasonable adjustments. I see the need to explain how decisions are made to people with dementia as absolutely no different, both under the Equality Act (2010) and morally for a socially justice-oriented nation.

The excitement about how ‘decisions’ are made was recently described in the book by Prof Daniel Kahneman, “Thinking fast and slow”.

How we hold information for long enough to weigh up the pros and cons fascinates me.

Kahnemann, and others, feel that there are two systems.

System 1 is fast; it’s intuitive, associative, metaphorical, automatic, impressionistic, and it can’t be switched off. Its operations involve no sense of intentional control, but it’s the “secret author of many of the choices and judgments you make”. System 2, on the other hand, is slow, deliberate, effortful. Its operations require attention. (To set it going now, ask yourself the question “What is 13 x 27?”

decisions2

Kahneman is a hero of mine as in 2002 he was awarded the Nobel Prize for economics, but he is essentially a cognitive psychologist.

In 2001, I was awarded a PhD from Cambridge for my thesis in decision-making in frontal dementia. I was the first person in the world to demonstrate on a task of decision-making that people with frontal dementia are prone to make risky decisions, despite having very high scores on standard neuropsychological tests and having full legal capacity.

Now, one coma later following my meningitis, I have done my postgraduate studies in law, and I have become fascinated by the rather arbitrary way in which our law has developed the notion of mental capacity, based on our ability to make decisions.

People with dementia can lose their ability to make decisions, so decision-making is a fundamental part of their life. As neuroscience and law straddle my life, I should like to make it my personal mission to explain the science of decision-making to people with full capacity, and who happen to have a diagnosis of dementia.

I am all in favour of a world sympathetic to the needs of people living with dementia, but this requires from us as a society much greater literacy in what the symptoms and signs of dementia are. I am not convinced we’re anywhere near that.

In the meantime, I think we can aim to put some other people in the driving seat, and they rarely get put in the driving seat: yes, that’s right, it’s time to engage people with mild dementia in the scientific debate about how decisions are made.

Chris Roberts’ plan to set up a dementia café: persons with dementia driving decision-making

Shibley Rahman 2 Comments

There’s been a persistent concern amongst many academics and amongst many persons with dementia themselves that persons with dementia are not at the heart of decision-making in dementia-friendly communities.

The notion of ‘no dementia about me without me’ has not been rigorously applied to dementia-friendly communities, with directors of strategy in corporates seeking to consider how to make their organisations dementia-friendly as part of a corporate social responsibility or marketing strategy.

Such directors are obviously fluent in how to present such a strategy as elegant marketing, to secure competitive advantage, to make money, so it makes absolute sense for them.

It also makes sense for the Department of Health and the Alzheimer’s Society, who are seeing through the policy of ‘Dementia Friends’ through a sustainable financial arrangement, to see this policy plank politically flourish. With every single newspaper article on dementia now mentioning ‘Dementia Friends’, it is hard to see how this campaign cannot succeed.

Norman McNamara, an individual campaigning successfully and living with dementia of Lewy Body type, reported yesterday on Facebook local success around the Brixham community area.

Brixham

Chris Roberts, another person in his 50s living with a dementia, also mooted the idea of setting up cafés himself.

“Since being diagnosed, i’ve noticed that there isn’t a lot for people in the mild to moderate stage. There are dementia cafes of course, but these seem to suit carers more than the people with dementia, we just sit there smiling when looked at while our carers and spouses chat away to each other, sharing there experiences and so on.”

“There are 100s of thousands of us in the same positition with nowhere to go or nowhere to be left! We could popin for an hour or for the day. We could practically run the place our selves, some where we could chat and share, watch tv, play cards, draw , we would arrange our own activities not led by someone who thinks they know what we want!”

“Yes we can live with dementia, yes we could even live well ! Yes we could live even better !”

The “living well with dementia” philosophy is all about enabling people to pursue what they can do rather what they cannot do. There’s a chapter on activities in my thesis on living well with dementia, reflecting the fact that activities are not only promoted in the current National Dementia Strategy but also in NICE Quality Standard 30 ‘Supporting people living with dementia’.

The National Dementia Strategy makes reference to such activities being ‘purposeful‘:

Section

And this gets away from the concept of persons with dementia sitting around calmly doing knitting when they might have been, for example, proficient motorcycle bikers:

comments

When one criticises that persons with dementia are often not at the heart of decision-making, these days I get a standard reply saying, ‘we always take serious note of the opinions of people with dementia; in fact there are two representatives on our board.’

Yet personal feedback which I receive is that persons with dementia resent this “tokenism”.

Having persons with dementia at the heart of decision-making I feel is important in the campaign to overcome stigma and discrimination against persons living with dementia. Persons with dementia running businesses of their own dispels the notion that persons with dementia are incapable of doing anything at all.

As a Fellow of the RSA, I intend to apply for a RSA Catalyst grant, as well as to the Wellcome Trust (who funded my own Ph.D. in decision-making in dementia fewer than 15 years ago now), to investigate collective decision by people in earlier stages of living with dementia to see how they in fact shape their community.

I am hoping that this will be in the context of their ongoing research work with the RSA Social Brain project, and I am hoping to hear from other Fellows about their work there, shortly. I will be putting my grant in with various people who are genuinely interested in this project.