When Anne Ellis Dementia Friendly Communities Coordinator for North Somerset got in touch and asked me if I would support the work of the Clevedon Dementia Friendly Community team, I readily agreed; firstly because I wanted to know more about it and secondly because I have a strong belief in inclusion. The Dementia Friendly Communities programme is part of the Alzheimer’s Society’s Dementia Friends initiative, the biggest ever initiative to change people’s perceptions of dementia. Its aim is to transform the way the nation thinks, acts and talks about the condition.
I have no close family or friends who have dementia, my only real knowledge of the disease is anecdotal or comes through the cinema, notably Still Alice, Away From Her and very recently The Father.
Still Alice is the story of Alice, a linguistics professor diagnosed with early onset familial Alzheimer’s disease at the age of fifty. It tells of the challenges she faces as her memory fades; she is forced to give up work and even struggles to recognise her family.
The Father is from the perspective of the person with dementia and also tells the story of an individual whose life is unravelling as he becomes more and more disoriented and isolated. It also deals with the lot of Anne, his daughter as she grieves the loss of her father, while he still lives and breathes before her.
Away From Her, on the other hand, is about the effects of the disease on relationships notably that of long married Fiona and Grant who find their mutual devotion tested by her struggle with Alzheimer’s disease.
Whilst some would be critical of aspects of said films, an example being Alice’s complete decline in less than a year, when the reality is that most people see their condition develop over a period of years, often as long as a decade, there is no question that they do offer a huge insight into this terrible disease and provoke empathy in the viewer.
It’s a subject close to Anne’s heart, as her grandmother who raised her had dementia. “I was the last person she raised, the first she forgot.” Anne, aged twenty at the time, felt that the disease totally depersonalised her grandmother.
Anne has spent the last seven years working in Elder Social Care and in the care home where she worked 85% of residents were living with dementia, prior to this she worked in the field of learning disabilities for twenty years.
I thought it best to start with a definition of the disease so turned to the Alzheimer’s Society website who state that the term dementia describes different brain disorders that trigger a loss of brain function. These conditions are all usually progressive and eventually severe.
Alzheimer’s disease is the most common type of dementia, affecting between 50 and 75 per cent of those diagnosed.
Other types of dementia include: vascular dementia affecting up to 20% of those diagnosed, frontotemporal dementia affecting 2% and dementia with Lewy bodies between 10% and 15%.
Symptoms of dementia include memory loss, confusion and problems with speech and understanding. Dementia is a terminal condition.
The statistics are quite shocking and I realised that it was much more of a significant health issue than I had first imagined.
- There are currently around 850,000 people with dementia in the UK. This is projected to rise to 1.6 million by 2040.
- 209,600 will develop dementia this year, that’s one every three minutes.
- 1 in 6 people over the age of 80 have dementia.
- 70 per cent of people in care homes have dementia or severe memory problems.
- There are over 42,000 people under 65 with dementia in the UK.
- More than 25,000 people from black, Asian and minority ethnic groups in the UK are affected.
- There are between 3000 to 4000 people living with dementia in North Somerset, although there will be many more without a diagnosis.
I hadn’t realised that dementia is one of the main causes of disability later in life, ahead of cancer, cardiovascular disease and stroke and as a country we spend much less on dementia than on these other conditions.
- Two thirds of the cost of dementia is paid by people with dementia and their families.
- Unpaid carers supporting someone with dementia save the UK economy £13.9 billion a year.
- The total cost of care for people with dementia in the UK is £34.7billion. This is set to rise sharply over the next two decades, to £94.1billion by 2040.
- The cost of social care for people with dementia is set to nearly treble by 2040, increasing from £15.7billion to £45.4billion.
Acutely aware of this, Anne was delighted to take up the post of Dementia Friendly Communities Coordinator for North Somerset at about this time last year and has worked tirelessly since then to do just as her role implies which is to make our towns and villages in North Somerset more dementia aware and consequently more dementia friendly. She has attracted a team of passionate, able supporters who have supported her in the tremndous progress that they have made to date.
One of the first activities that Anne organised was a survey asking people living with dementia, volunteers and professionals their thoughts and experiences, to help shape future services.
She discovered that:
“The common theme was about enabling those living with dementia and their carers or loved ones to live well – to feel connected, valued, supported and included within their community.”
To this end, Anne works with a team of individuals who all have a personal connection to dementia, either having had a loved one who has died of dementia, or a loved one living with a dementia. One of her group members is a lady with early onset dementia who is just 54 years of age. They all live within Clevedon, and love doing so. Their aim is to support businesses, cultural organisations,, doctors, churches and voluntary groups to take simple measures to become dementia – friendly.
Anne explained:
“We all want to transform Clevedon into a dementia-friendly community, so that those living with a dementia, their loved ones, carers and family will feel supported, valued, and given the opportunity to be involved, engaged and able to have autonomy, choice and independence.”
A dementia-friendly community is one where community members have taken measures to ensure they are operating in a dementia friendly environment; taking measures to reduce barriers so that people living with a dementia can live well and have their needs met. For example, this could be pointing out to a shop that a dark mat inside the door, can look like a hole to a person living with a dementia which can then create anxiety and upset for the person and mean that they may not go into the shop. Choosing a different coloured mat would mean this situation could be avoided.
The Alzheimer’s Society have produced a dementia friendly retail guide which you can access here: and Anne and her team will be approaching community members to look at simple changes they can make which will provide a positive impact for a person living with a dementia.
Anne is also offering awareness sessions and support and you won’t be surprised to hear that although it’s very early days, some have already availed themselves of this. The Clevedon Curzon staff and volunteers became Dementia Friends in September and received their ‘working towards being dementia friendly’ status. Their relaxed screenings on Wednesdays are particularly suited to those living with a dementia. The lights are left on low throughout the screening; the sound is at a lower volume; there are no adverts/trailers or entry music prior to the film; customers have freedom to move around the auditorium if necessary and there is a quiet area for people to relax in the Oak Room. The Curzon team also provide extra signage in the cinema to make the building easier to navigate.
Such a sensory friendly environment is wonderful for a number of different groups who would benefit from a relaxed cinema experience.
Clevedon Town Council and the hairdressers Signature Salon have also engaged with these sessions. Anne’s committed Clevedon Dementia Friendly Community team continue to visit the community to talk about what they can offer.
Anne really has made some considerable inroads into supporting Clevedon’s development as a dementia friendly community, aside from approaching different groups, she has instigated a number of valuable initiatives. A dementia friendly choir is starting on October 7th between 2.00pm and 4.00pm at Christchurch. The need identified for such activity came from Suzy, curate at ChristChurch, so Anne put her in touch with Elizabeth Glen and it took off from there.
Elizabeth, the choir mistress who set up Sing Out Loud UK used to live in Clevedon and is a professional singer, voice teacher and choir trainer with over twenty years’ experience in the music industry. She set up Sing Out Loud UK to help others realise their desire to sing. Her philosophy is that everyone can sing, they just need to be shown how. If you’d like to know more, you can check it out here: Elizabeth runs Sing Out Loud, Sandford Singers who reside in Sandford Station Retirement Village.
There is also going to be a gardening group at Christchurch supported by a former horticulturalist who is living with early onset dementia and plans for a café are underway.
All the volunteers working at Christchurch have become Dementia Friends which entails a forty minute awareness session delivered by Anne. The strong message that she conveys is that people with dementia can live well with understanding and an inclusive approach.
Setting up a Facebook page has proved to be an invaluable resource not least because Anne regularly posts case studies which support our understanding. You can check it our here , it does also give details of events where the group have information stalls.
Anne and her group are so keen to grow Clevedon as a dementia friendly community; a community where people are aware of and understand dementia; a community where people living with dementia are supported to live a high quality of life with meaning, purpose and value; an inclusive community.
All the best to Anne and her group who I am sure will be successful in their mission. Faces of Clevedon are with you all the way.
if you’d like to make contact with Anne, her e mail address is: Anne.Ellis@alzheimers.org.uk