Argus title : It’s not just old people who need help with dementia
I don’t like the word ‘dementia’. It has connotations of mumbling mad people with matted hair and glaring eyes locked in Victorian Attics.
In the 1950s Hollywood movies regularly depicted demented people as dangerous, malevolent and inhuman.
So it’s hardly surprising that there is now widespread public fear about the range of conditions associated with what is currently known as ‘dementia’.
When my mother asks me what is the matter with her. I say “You have short term memory problems”. She laughs. There is something about the phrase which really amuses her. “I’m dotty you mean” she chortles. “I’m a dotty old lady.”
Sometimes I tell her she has Alzheimer’s disease, but the words mean little to her. The sense of stigma that would once have attached to them now passes her by.
However, very occasionally, she will see the word ‘dementia’ in some document relating to her and her face will fall. “That’s me” she’ll say, looking very sad. “You’re a true English eccentric, that’s all” I reply, and she giggles again. Laughter in the face of adversity is our greatest weapon.
Dementia diminishes the ability to think, reason, concentrate or remember. It can be caused by a range of different diseases and medical conditions, including Alzheimer’s Disease, stroke, Transient Ischaemic Attacks (mini-strokes), alcoholism, the human form of CJD and many others.
Every historical period throws up iconic diseases, which strike terror into the population attaining almost mythic status. In the 19th century it was tuberculosis and in the first half of the 20th century, cancer.
In our own time it’s AIDS and Alzheimer’s Disease which devastate communities. And yet with proper resources and treatment, the quality of life – and life expectancy – of people with these diseases can be greatly improved.
The Alzheimer’s Society exists for the purpose of improving the lives of people with dementia and their families. Its pioneering work at a national and local level has in the main been with older people. This is because dementia is more common in the elderly. One in 5 people over 80 currently have the disease.
However, younger people also experience dementia and this year the Society’s annual Alzheimer’s Awareness Week (3rd – 9th July) is focussed upon their needs.
Nationally, there are estimated to be 18 thousand people under 65 with dementia – with around 180 living in the Brighton & Hove area. When people in this younger age group become ill, the effects are often devastating.
If they are breadwinners their families may experience significant financial loss when they become unable to work. The emotional impact upon children living at home can be particularly cruel.
In such a situation, there is likely to be denial and varying emotions of shame, anger, fear and embarrassment. Depression and extreme anxiety are not uncommon. Those affected may avoid seeking help for months or even years.
Yet early diagnosis is vital if people are to get the help they need. In some cases, memory loss and confusion may have treatable causes and lives may be put at risk if medical help is not sought.
Though in most cases cure is not an option, medication and proper supports can reduce suffering, improve quality of life and help people maintain their independence for a very much longer time.
For these reasons, 5 years ago, the Brighton & Hove branch of the Alzheimer’s Society, in partnership with the South Downs Health NHS Trust, set up the Towner Club in Brighton to provide support to younger sufferers of dementia. It meets between 9 and 5 twice a week on Tuesdays and Fridays at the Somerset Day Centre in St James Street.
The club aims to provide social and other supports in a stimulating environment. It’s called a ‘club’ rather than a ‘day centre’ because service users have a high level of involvement in choosing activities. Key aims are to inform and support members, enabling them to maintain or improve existing life skills.
Members socialise and discuss, listen to music, dance, take part in quizzes, play boules and go on outings. Staff members are on hand to support them and assist with practical problems, providing referrals to specialist sources of help for financial or legal difficulties. Once a month there is a support group for carers and families.
One of the most popular club activities is artwork. Led by the charismatic artist Terri Walshe (who also happens to be a trained nurse) the group have produced some fine sculptures, paintings and masks.
To celebrate national awareness week, the Alzheimers Society has organised an exhibition of their art work. It will take place from 4th – 8th July at the Unitarian Church in New Road, Brighton. The official opening will be at 2.00pm on Tuesday 5th July in the presence of the Deputy Mayor Councillor Pat Drake.
In advance of the exhibition, I met some of the staff and members of the Club. Manager, Kamal Beeharree and group leader Terri Walshe spoke with passion about its work. They enthusiastically recounted members’ achievements, complaining with evident frustration that club members always beat the staff at Boules.
Terri spoke with great pride about the work of the art group. In common with many people involved with the Club, she has personal experience of dementia. Her aunt, who undertook pioneering work in heart surgery in the USA, suffered from Alzheimer’s Disease.
She and club members Jen, Jan, Richard and Gladys, showed me their exhibits, most of which were produced as a group effort.
I was immediately struck by a wonderfully wacky clay sculpture entitled “General de Gaulle and his Cabinet”. Richard, a member who is a former psychotherapist, explained that he had made the central figure and that others had added a cluster of grotesque or laughing heads and faces about it. Neither he nor anyone else could explain the apparently dead clay duck lying by the side of the ‘cabinet’.
Club members Jen, Jan and Gladys showed me their beautiful, richly coloured flower paintings. Some of the most impressive were completed after the group visited Charlston Farmhouse, home of Vanessa Bell and other Bloomsbury Group artists. Despite severe problems with memory, some club members had retained a vivid recollection of Charlston.
Jan, who used to be a teacher, loves clay work. She explained that the group has been donated a potters’ wheel, but doesn’t yet have a qualified ‘thrower’ to train them. She told me with pride that she had made the sparkling gem-like eggs for “Martian Chickens”, a superbly surreal clay sculpture. Derek, a former publican, gave it its title.
Jan, Jen and Terri confirmed that – apart from requiring a potter – the group badly needs art materials such as paints, brushes, paper and clay. It also needs other volunteers with artistic skills.
Jan and Jen have become good friends. Jen described how the Club helped her to regain self-confidence lost after the onset of the disease. Kamal Beeharree emphasised the importance of this: “The Club gives people self confidence and encourages them to believe in themselves. Sometimes they’ve stopped going out. They may be depressed and anxious. One to one and in the group, we are able to support them.”
I was struck both by the commitment of the staff and by the laughter at the club. Members josh each other and the staff with obvious good humour and affection, discussing the relative merits of bands like Procol Harem and Pink Floyd and, when I was there, dancing to gospel music.
There is no obligation to be active. Those who don’t want to participate are under no pressure to do so.
I spoke to Dickie, a quiet, slightly older man, who reminded me a bit of my father. He likes opera and prefers to watch quietly while others are more active, as does Tony, an Albion fan and former scaffolder, and Chris a former roofer and furrier. All, in their different ways, participate in the club.
I asked Kamal to think if there was one thing that above all he would want to say to readers. He said earnestly: “Look if you can just get one thing across, it’s this…Get help, because life can be happy and more purposeful. Tell them that”
If you need advice or support, wish to make a donation, would like to become a volunteer – or are a qualified potter – contact 01273-726266 from 5 – 11pm on weekdays and 9 am – 11 pm at weekends.