Forget Me Nots

The Forget Me Nots are a group of around 20 people with dementia from across east Kent who are active within KMPT. The group aims to help people with dementia get their voices heard. Many organisations, including our Trust, are trying to improve the quality of service they offer to people with dementia. It’s vital that the opinions of people living with a diagnosis are heard by those who make decisions – by getting involved, you can help raise the standards of services across Kent.

The Forget Me Nots meet monthly to discuss issues relating to dementia, speak to those newly diagnosed, help with staff recruitment, help raise awareness of dementia and advise the Trust on service developments and patient information.

The Forget Me Nots also help to spread the word about dementia at conferences and work with the Dementia Engagement and Empowerment Project (DEEP) and theAlzheimer’s Society.

Contact us

If you'd like to get involved with the Forget Me Nots please contact Reinhard Guss on 01227 812054 or Dr Elizabeth Field on 01227 812054.

Guidelines

Download the Forget Me Nots guidelines

Quotes

Quotes from some of our Forget Me Nots members:

‘I come along because the Forget Me Nots drive outside forces, together we can make a difference’

‘There is no stigma here, it is good to be together’

‘It is good to be around people who understand’

‘Forget Me Nots are a fighting force against stigma toward those who have a diagnosis of dementia’

‘Im not on the shelf yet! I have more to offer. We’re a group with teeth!’

Activities

Fairness for people with dementia petition

Chris Ryan is looking to change the law in this country regarding back to work assessments for people with dementia. Currently, they are not exempt from  having to refill the back to work assessments, when dementia is something that one cannot get better from. Chris has had meetings with his local MP and started a petition on 38 degrees: fairness for people with dementia petition

Forget Me Nots dementia friendly audit of The Marlowe Theatre, Canterbury

Marlow Theatre, outsidePhilly Hare, the Director of Innovations in Dementia, has conversed with different service user groups, up and down the country. She has worked with SURF, Educate and the East Kent Forget Me Nots in auditing public spaces to assess how dementia friendly they are.

During her visit to Canterbury with the Forget Me Nots on 22 February 2017, she conducted a draft audit of The Marlowe Theatre. Questions regarding access, lighting and clear signage were answered in hopes to improve the service The Marlowe could offer to those with dementia.

The studio manager, Kim Sanders, was interested to know of any improvements that could be made to make the theatre more dementia friendly.

The Forget Me Nots obliged, and consequently found a number of things that could be improved upon. The main issue that seemed to be raised was the signage being too small for anyone to be able to see.

We loMarlowe Theatre, insideok forward to seeing big, bright signage throughout The Marlowe soon, along with other little changes, thanks to the Forget Me Nots' input with this audit.

Philly has said:

‘Your feedback was extremely helpful. It was very encouraging that you all felt that the checklists would help you - and others -  in future auditing work’

It’s an amazing example of how the Forget Me Nots are changing things for the better in their local community.

Forget Me Nots collaborate with Zipabout to find solutions to traveling well with dementia:

Forget Me Nots collaborate with Zipabout Amber Westerholm Smyth works for Zipabout, on behalf of the government and in partnership with the NHS. Zipabout is a technology based company who are looking to make traveling with dementia easier. This would be used for buses, trains, even cycling. They are attempting this by visiting different service user groups and asking their opinions on what technology they find easy to use and what features would be helpful.

She states ‘The funding for this has been allocated by the Wrexham Maelor Hospital and the Department for Transport. Our aim is to ascertain the key pain points and understand how we can address them. It is really critical that we work hand in hand with individuals so that we build a useful and applicable solution that goes some way to easing travel.’

Amber noticed that one of our Forget Me Nots was wearing an Apple watch, and gave the example that travel alerts could be sent to that watch, to take some of the stress out of travel. One of our members made the point that it would be helpful if such technology would be able to give you an alert as to when your stop is coming up, so one could gather their things together in adequate time.

She also mentioned to the Forget Me Nots that there is another company who are working on non-technology based solutions to traveling better, such as large print bus timetables. Some of our members stated that the small writing and the format of current timetables is hard to decipher, and some were not familiar with technology on this level.

The idea that Zipabout has, is to strengthen communication links between those with dementia, so it would be easier to meet up in day to day life. All people with dementia would have to do is express an interest in an activity, and Zipabout would work out a travel plan that would suit them. There will be a group feature where other people in the surrounding areas will also get a notification, so more people with dementia can get together and keep active.

The group expressed this technology would be useful for getting members of Forget Me Nots to and from the meetings, and to meet for more social occasions.

We look forward to updates on this technology in the future!

Forget Me Nots at the Live it Library

The Library is an online resource of stories from people who have experienced or are experiencing mental health issues. Some of our Forget Me Nots have told their stories. Watch them online:

Chris

Listen to Chris who was diagnosed with frontotemporal dementia. Before diagnosis, Chris was a driving instructor but found he was mixing up words and his job was becoming harder and harder to do. He had planned to work for a further eight years and says it was hard to adjust.

Chris R

Chris went to the GP after having memory problems and being prompted to go by his wife. Chris also has diabetes and other health problems and thought it was connected. He was then referred to a memory clinic.

 

Kathy

For Kathy it began six years ago when she began having difficulty recognising where she was and how long buildings had been there. She couldn't remember the names of places and this made her think something was wrong. It took time for her to be diagnosed so did not come as a shock.

Keith

Keith was working as a head teacher when having been a really well person, went through a period of picking up different ailments. After a series of viruses and unexplained falls he went to see his GP who prescribed antibiotics and asked him to come back in a week if it didn’t work. Keith's GP then sent him for a brain scan and after ruling out a brain tumour, the consultant started asked questions and spoke about Alzheimers. He was in shock as associated Alzheimers with older people. His own mother was diagnosed with Alzheimers in her 70s.

Martin

Martin talks about how his wife recognised his symptoms after reading about a memory clinic in his GP surgery however he can now look back and recognise the symptoms himself. On one occasion he drove across Kent and found he didn’t recognise a sign. He called his wife to tell her he was lost.

 

Dementia Diaries

Keith Oliver, Chris Norris and a number of other Forget Me Nots from the Trust have been involved in a project called the Dementia Diaries. The project brings together people’s diverse experiences of living with dementia as a series of audio diaries. 

Visit the Dementia Diaries website and listen to the diaries.

A new Dementia Diaries film is available to view on Facebook and features one of our Forget Me Nots, Melvyn. 

Dementia Diaries

New UK Dementia Research Institute

Keith Oliver, Forget Me Not and Alzheimer's Ambassador shares his hopes for how the new UK Dementia Research Institute will make life better for people with dementia, now and tomorrow. Read his article, 'Dementia: care today, cure tomorrow' on the Medical Research Council Insight website.

'Welcome to our World' book

In 2014, some of the Forget Me Nots were taught life writing skills by a local author which resulted in the publication of a unique book called 'Welcome to Our World'. The book challenges the stereotypical views about living with dementia. It’s thought to be the first time that a group, whose members are all experiencing symptoms of dementia, has come together to tell their stories, record their memories and publish them in a book. The group is delighted to have the book endorsed by a passionate foreward written by Jo Brand who worked with dementia patients in Kent in her younger days.

One of the writers is former Kent head teacher and Dementia Envoy Keith Oliver, who was diagnosed three years ago at the age of 55.

Keith said: “I am so proud of the people involved – we have a carpenter, a policeman, a lifeboat man and people from other professions. Some have never written stories before in their lives. We’re showing what we can do in spite of our diagnosis and, with the students’ involvement, it’s a true inter-generational project.

“There are other books out there which challenge the stereotypes about dementia but they are written by exceptional individuals writing a whole book. What we think is unique about this project is that it’s the first time a group like ours has got together to write.”

Another writer and Dementia Envoy, Chris Norris added: “By publishing the book we can get the message across that dementia is not ‘the end of the world’.”

The book was funded by a grant from the Alzheimer's Society.

Brigid and I

Carolina Young is a member of the Forget Me Nots and has written articles about Brigid and her. Brigid is Carolina's alter ego which she created. They discuss things relating to dementia.

Brigid and I: language used regarding dementia

Brigid and I: sharing our problems - article published on the Dementia without Walls website

Keith Oliver talks to Australian radio

Listen to Keith Oliver give an interview to the Alzheimer's Show for Australian radio:

Keith Oliver interview, June 2016

Living through Landscapes

Living Through Landscapes is a pioneering project to support people with dementia by transforming outdoor spaces at 30 care homes across the UK. 

Watch Keith Oliver appear in a short film about Living Through Landscapes. Find out more about Living Through Landscapes at: http://dementiagarden.org.uk/