‘Grouple’ & The Living Well with Dementia launch

Grouple is a ‘collaborative caring’ tool I have been working on for the last 5 months with a team of designers. Supported by the Design Council in conjuncation with the Department of Health, Grouple is one of five projects aimed to help people live better with dementia.

The Design Council run a series of challenges.  To find out more about this challenges and the others, please visit their website.

Thursday 26th April was the launch event for the projects at the Design Council and what a fantastic event it was! Each project had its own area to display their work and Paul Burstow, Minister Of State for Care Services came along to provide an opening speech.

The room was full of dementia experts, all eager to hear about the projects and understand how design can play a role in helping people live better with dementia.

The Design Council had created a series of displays explaining the role of design and importance it plays in social projects. The key words were ‘human centred’, ‘visual’, ‘iterative’ and ‘collaborative’. These words are essential parts of the design process – the end user must be the main focus at all times, the design needs to be appealing and easy to understand, the design has to evolve from learnings over time and being open to a others ideas and suggestions throughout means your end result is more likely to be a success.

There was something special about the reflection of the word ‘collaborative’ on the floor to reinforce the message!

The Projects
Dementia Dogs
have designed a blue print for training ‘career change’ guide dogs to become help for people with dementia, Buddi have designed a prototype wrist band to prevent people with dementia from wandering, Trading Times have designed a service for helping primary carers find appropriate work while caring and Ode have designed a prototype scent timer to encourage people with dementia to enhance their appetite.

The five teams had 3 minutes to stand up and explain what their project was about. It was a great way to gain a concise understanding of the challenges each team decided to face and their outcome.

Project Grouple
Grouple is a caring and sharing tool for families living with dementia.

The aim is to relieve the isolation and stress of the primary carer by sharing care, extending the family network and encouraging others to become involved. Based on a timeline, the family can post events, view other people’s events, spot patterns over time and plan for the future. The idea is to encourage families to discuss dementia to reduce the stigma, support each other through out difficult times and remember the good times.

We have a working prototype which four families are currently testing and we are now looking for more families to test the site to enable us to develop the system into a public beta for the end of the year.

Valuable insights have been appearing from families using the system. Patterns have been forming, communication has been improving and stories of engagement have shown through.

There are 670,000 primary carers in the UK  who all help to save the NHS £8billion! These carers need support and we really believe that our system is a valuable tool to help.

We are currently looking for partners, organisations to collaborative with and people who can help us scale the prototype and get it to market!

There is an explanitory animated video on the Grouple website with a feedback section and a place to leave your details if you’re interested in finding out more or joining us on our journey. You can also help raise awareness by following us on Twitter @GroupleCC

WhyNotAssociates have created a series of films to explain the challenge and projects which can be seen on the dedicated Living Well With Dementia website.

Thank you to everyone that came to the launch and the exhibition.

Grouple – the collaborative caring & sharing tool for families living with dementia

The following video was used to describe the idea which was submitted for the Design Council’s Living Well With Dementia challenge.

The fantastic news is that the idea was chosen for funding so that a working prototype can be developed over the next few months.

We (a team of 5 multi-disciplinary designers) are now busy researching and developing the idea to fine tune it and make sure we have captured all the elements to make it a successful tool.

If you are caring for someone with dementia or have comments on the concept, please feel free to give as much feedback as you would like. I’ll be posting updates as the project develops….

Caring for someone with dementia – a novice’s insights

I’ve recently been carrying out research into dementia – the huge, overwhelming topic that most people tend to steer away from because it’s so vast and not particularly fun! It is however incredibly interesting and important that more people become aware and understand the disease (yes, it’s a disease, not a condition); these shocking statistics are taken from the Alzheimer’s Society website:

  • There are currently about 750,000 people in the UK with a form of dementia
  • There are over 16,000 people under 65 with dementia in the UK
  • One in 14 people over 65 years of age and one in six people over 80 years of age has a form of dementia

The point of the research was to be able to enter the Design Council ‘Living Well With Dementia’ challenge – something I did with a team of multidisciplinary designers to help make caring for someone with dementia a more manageable and collaborative experience.

The best way I could gain a deeper understanding of what it can be like to care for someone with dementia was to speak to as many people as possible, do as much desk research as I could, visit care homes, remember visits to my great grandmother as a child and read, read, read.

It was recommended I read the book ‘Keeper – a book about memory, identity, isolation, wordsworth and cake’ by Andrea Gillies. It was sad in parts. Really sad. But fun and enlightening in others. Gillies writes about a lady who cares for her mother in law (and father in law) who is suffering with dementia. They move to a Scottish village with the view to running a bed and breakfast in the country side while caring for her husband’s parents (and running her family). The lady struggles, gets frustrated, feels isolated, tries different tactics, looks for help and questions her actions a great deal. I highly recommend anyone to read the book – it’s incredibly well written. The book is very insightful and helps someone, like me, who hasn’t cared for someone with dementia to start to understand what a challenging and personal experience it is.

The following points are what I have learnt about living with dementia over the last three months. I am nowhere near an expert but have learnt a great deal.

Living with dementia is about:

  • understanding the patient
  • being prepared for changeability and feeling like a stranger
  • living with guilt, longevity and unpredictability

When someone is diagnosed with dementia, they may have the ‘classic’ signs of losing their memory and getting confused but it is clear that every patient is different. It can also take months if not years to get a straight diagnosis. It is also a disease that develops over a long period (anything from 2 years to 25 years) and while some people are able to look after themselves for a number of years, others require help early on. This makes planning for the future very difficult. If someone appears to be able to cope alone, planning for the future is a tough subject for a carer to bring up with the patient. It is essential that bank accounts, housing etc are thought about for when the patient begins to forget the essential elements to everyday life. Keeping a journal is recommended to remind the patient (and carer) of events and key dates in the future and finding ways to jog the memory to remember comforting scenarios is often beneficial.

Carers have noticed sufferers have changes in mood; aggression leading on from frustration and anger towards the carer when the patient is confused as to who they are. It is very sad to hear stories of carers being seen as intruders and often being accused of stealing from the patient. People diagnosed as having dementia have good and bad days. The people living around the patient need to be aware of these and not take the mood swings personally even if this is easier said than done! Keeper describes situations where the patient is very affectionate to her grandson one minute and then accuses him of being a nasty little boy the next.

People with dementia often have moments of clarity which can help them deal with a situation or confuse them even more. What should a carer believe or put down to the disease? I have read many accounts where a carer isn’t sure how to deal with a situation. They do not understand how the patient is feeling and in turn feel guilty that they do not understand the disease better. There are plenty of sources of information online, forums to join and organisations set up to help people living with dementia but it is very much a personal journey that a carer and patient go through. Dementia can leave a carer feeling very isolated.

The more I learn about dementia, the more I keep relating it to babies and toddlers – expect in reverse years. A baby needs full time care and support from feeding to sleeping and a toddler understands some things but still needs full time care. A patient with dementia will go from understanding most things to needing help brushing their teeth towards the end of the illness. This can be a painful experience for people close to the patient which is where a carer who is not related to the patient often finds caring easier. Non-related carers are able to treat the patient as they are and not get emotionally involved. They don’t feel the need to justify actions or reason with situations.

I have heard a number of accounts where families have tried to keep the patient in their own home for as long as possible. Moving a dementia patient into a care home is a good decision to make sure they are looked after properly but can be very disorienting for the patient. Unsettling the patient is not only hard for them but hard for the family to witness. The patient is more likely to remember past stories from their earlier life than recent stories and because of that, keeping the patient in their familiar surroundings can help trigger the memory. Research is currently being done into creating environments that trigger a time in their lives that was most influential to them. The aim is to give the patients a sense of place.

To sum up my learning’s:

  • it is obvious that no one patient is the same
  • families find it incredibly hard to care for a loved one and see their health deteriorate (especially as there is no cure),
  • planning for the future is essential but difficult to do successfully and
  • carers find it hard to make time for themselves when the disease is in its later stages.
  • When no one patient is the same it’s hard to know what to expect.
  • When caring for a loved one becomes hard the carer is prone to stress.
  • When planning for the future is difficult, the carer needs a simple way to make this possible.
  • When a carer is finding it hard to make time for themselves they can feel very isolated or guilty.

The good news is that the National Dementia Strategy has been developed to provide a framework to deliver quality improvements, provide advice, planning and guidance. And the Design Council and Department of Health ‘Living Well with Dementia’ challenge is a fantastic example of encouraging designers to be creative in helping to improve the situation.

Ecoinomy launches new website

For those that aren’t familiar with Ecoinomy, they are a behaviour company whose aim is to motivate employees to be less wasteful in the workplace.  Their online system encourages behaviour change by creating communities of employees who are rewarded for saving money.

Ecoinomy home page www.ecoinomy.com

Ecoinomy home page http://www.ecoinomy.com

Creating behaviour change takes time. It is not a matter of telling people to do something different or about removing items that encourages bad habits. It is about empowering people to feel they are making a difference that they benefit from.  Making changes alone often feels pointless and goes unrecognised but making changes as a group where you can see a tangible difference can be incredibly motivating and rewarding especially if there is an element of competition involved. This is what Ecoinomy does!

Ecoinomy has two offerings – the eco.system which is aimed at organisations who have more than 250 people who would use the system and eco.logic which is aimed at departments, project teams or companies with less than 250 people who would use it.  Both work in a similar way – a cause (charity, community group, event etc) to save money for is agreed, people join the system and enter their cost savings into the system.  A carbon calculator estimates the amount of CO2 saved and the money calculator adds up the money saved.  A percentage of this money goes to the chosen cause.

It’s a win, win, win situation – the company saves money by the employees consciously changing their habits (whether it’s reducing their printing, cycling to a meeting or not ordering biscuits for the next meeting), the employee sees a reason to think sustainably and feels motivated in the workplace and the environment wins because the CO2 emissions are reduced. Once momentum builds on the system and people see new ways to save money, the system becomes invaluable.

There is also a free e.Book ‘Ecoinomics’ on the website which can be downloaded for tips on how to operate in a less wasteful way. The fun illustrations and novel examples are not only thought provoking but also obvious and easy to carry out!

The fantastic thing about innovation like the Ecoinomy systems is that it creates interaction within the workplace and encourages employees to think further than the workplace.  If workplaces can become less wasteful and attitudes changed by employees seeing how much money they can save for their company and cause, then the hope is that those messages will go back to the home and we can live on a happier planet.



Finally, an exciting employee engagement scheme!

Ecoinomy, the web start up founded by sustainability guru, John Grant has launched! Using employee engagement, service design and exciting innovation, Ecoinomy’s ‘eco.system’ rewards employees for actions they haven’t taken. The employees are then financially rewarded, communities are formed, employees gain a sense of achievement and motivation and the company saves money by saving energy.

You have to love win, win situations – the environment wins, the employee wins and the company wins!

I could write about this for hours but instead I recommend watching the launch video. It is great to see a famous dragon on board too to help spread the word!

For more information, go to the corporate website www.ecoinomy.com

Inspired by children

The Design Council’s Water Design Challenge has given me the opportunity to work with pupils at a secondary school to help them understand how design can be used to reduce their water consumption.

Today was a kick off session with the pupils to discuss the findings they had discovered from doing an audit on the school’s water consumption. Maybe I was a little naive as to what they would have discovered or maybe I am not used to working with eleven year old girls but I came away really impressed and inspired.

We discussed water consumption in general to get them thinking more broadly than water use at the school and when showing them the virtual water chart, one girl boldy told me that ‘we should not worry about the amount of water in meat production as animals are treated badly, not given enough water to live on and are injected with antibiotics!’ I only had a two hour session to inspire and guide the pupils and had not prepared myself for answering comments like this!

Using the Design Council’s ‘double diamond‘ design process we were able to throw all their ideas onto the table, let the range of ideas be very broad and then see how they could be used to define the brief. I love the fact that the girls had really explored the school, noticed every single dripping tap, are concerned with families in Africa not having enough water to live and feel that this year’s school fund raiser should not be throwing wet sponges at the teachers as it is bad for the environment.

I felt so happy that girls who haven’t chosen their preferred subject route at school yet can be this passionate and knowledgeable about environmental issues. I was expecting to need to really tease ideas out of them but instead had to really work hard to make sure their ideas were captured properly.

The pupils have two weeks now to define their idea and come up with a brief that they want to develop. I’m so excited to see what update they email me on Monday so I can see how best to guide them down an effective, engaging and creative route.

Taking part in this challenge has really made me understand the power of empowering the younger generation. Give them a subject that they can relate to (I asked the pupils to list the moments when they use water in their day and one of the first ones was ‘when I go swimming’ – I hadn’t thought of that one!), add some creativity, tell some stories and they will run with it. Guideance, of course is essential to keep the ideas flowing in the right direction but the fresh minds and active brains are priceless!

My thoughts are now looking at how we can get children involved in other environmental problem solving. Has anyone considered an OpenIDEO platform for children?

Since writing this blog post I’ve read a great article about how ‘children are among the world’s most important innovators’ in Knowledge Wharton Today – worth a read!

Collaborative Consumption workshop @ NESTA 08/02/2011

I was very grateful to be able to participate in a really exciting workshop at NESTA on collaborative consumption. Rachel Botsman has been in the UK promoting her book ‘What’s mine is yours; how collaborative consumption is changing the way we live‘ and has subsequently been giving talks and presentations.

Rachel Botsman

I was lucky enough to present The People’s Kitchen project I’m working on at the start of the session. I received some great questions from the other participants. People were interested in finding out who comes along, how it is being funded, what a typical donation is and are supermarkets ever concerned about being sued by giving away food past their sell by date?

Louise presenting 'The People's Kitchen'

The workshop session was focused around how the rise of collaborative consumption can impact on Public Services, particularly in these difficult times. The group I worked with was on how to re-invent the service offering and business model of libraries! Facilitated by the excellent Mok from Innovation Beehive, we acted out an idea around changing libraries into a zoned space allowing it to used in different days during the day.

NESTA workshop

I came away from the workshop feeling very positive about how collaborative consumption can help our public services. We need to come together and share our experiences and skills to help improve what we already have. There are a large number of opportunities out there for developing the services we use – we must not be scared about changing the way we currently do and view things.