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.
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.
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.
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.
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.
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.
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.