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….

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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.

Sustainable business models: Green Growth Business Boot Camp

I was invited to take part in a panel at Kingston University for their Green Growth, Business BootCamp. The aim of the sessions is to address the increasing need to develop environmentally more friendly products and services and help enterprises & entrepreneurs make the most of the opportunities created by increasing consumer demand, resource costs, and regulatory controls in the eco-field.

The second event in the series was looking at sustainable business models and innovation; What business models are available, and how can they be introduced? What are the elements of a business model?

Ecoinomy

goCarShare

Markers

The panel session included myself talking about Ecoinomy – the behaviour change company who motivate employees to use less energy in the workplace, GoCarShare – helping people car share by hiring out the spare seats in their car and Makers – connecting designers, manufacturers and retailers with the very best UK manufacturers.

All three companies have strong values, focus on a sustainable business model and have society and the environment in mind.

  • I discussed how Ecoinomy have had to approach different stakeholders in different ways to explain the value of the system and about the importance of using the correct language to engage with people. The business model relies on direct cost savings being made; the system produces opportunities to reduce energy consumption, opportunities to motivate employees and ways to change general office behaviour – we call this a win-win-win system – the environment gains by CO2 emissions being reduced, the economy gains by people being efficient and using less and society gains by employees forming community groups to save money for a local cause of their choice.
  • goCarShare encourages people to think about sharing car journeys to help reduce the number of empty seats on the road (and in turn reduce the amount of CO2 and pollution) and help share costs. Drummond Gilbert (founder of goCarShare) opened by saying that he learnt there are 38 million empty car seats in Britain everyday and he wanted to do something about it. Based on a Collaborative Consumption model which uses swapping, sharing, bartering, trading and renting to create business, goCarShare rents car seats on journeys. The environment gains because there are potentially less cars on the road which means reduced emissions, the economy gains because the driver gets help with petrol costs and society gains because….well, I car shared once with Craigs List in California and had a great experience. Whether it’s a case of having help stay awake, potentially sharing the driving or just enjoying the company, car sharing is a great way to change attitudes to the way we use our cars. goCarShare had a lucky break last summer when they partnered with UK music festivals to encourage festival goers to share the driving to the events. The Secret Garden Party even taxed people who had empty seats in the their cars!
  • Chris Pett of Makers discussed how important it is to make the designer the heart of any manufacturing process to add value to the end result. Keen so use local materials and a sustainable supply chain, Makers turn sketches and prototypes into real products making sure that the product has not travelled miles to the end user but made the product where the end user is – while making sure their products are tested to international standards. The right supply chain and pricing is as important as the look and function: Makers’ design service is focused on producing commercially viable designs ready for manufacture. Our design clients can also use the Makers production service to produce the finished product.

After the panel discussion we answered questions from the audience. This is what I took away and hope everyone will remember when developing their sustainable businesses:

Do you believe in what you do? It is essential to believe 100% in what you are trying to achieve. The ‘green’ and ‘eco’ world can be a tough place to succeed in if you want to quickly prove that you are sustainable. You must persevere, be articulate and not let people put doubts in your mind.

How are you adding value for the end user? You need to remember that although you believe in your business, service or product, you still need to think about why the end user will use it. Whether you are changing behaviours in the workplace, offering a sustainable supply chain or helping provide cheap car journeys, you need be clear what makes you different to your competition.

How do you explain what you do? Not everyone will understand the language you use to describe your business. You probably talk to like-minded people most of the time but there will always be people who either don’t want to understand or who are unfamiliar with eco focussed business. Think about changing the language you use to target the person you are talking to if you want to engage with them.

How many times have you written your business plan? It’s important to have a business plan that you are happy with but it’s also important to not be afraid to veer away from it. If an opportunity comes along to collaborate with others, partner with another business or change your model, then do it if it feels right. With the changing economy and people becoming more environmentally conscious, it is sometimes worth being ready to change your business if it will help you reach your end goal quicker.

Who did you last speak to about your business? Networking is essential. You never know who you might meet who could help you and your business. Not only at networking events or conferences but everyday! A small link may lead you to a large connection which could open doors and even raise your profile considerably.

The Green Growth events is a great series for entrepreneurs wanting to be exposed to ways to succeed in business. Next week the session is looking at marketing. I hope everyone that attended the series is able to go away and set up one of the next successful eco-businesses.