Most of us know of someone with dementia – perhaps a family member, neighbour or friend of a friend.
In the future, many more of us will encounter people with the condition. We may even suffer from it ourselves, because rates of dementia worldwide are climbing rapidly. In the UK alone there are currently 800,000 people diagnosed with dementia in all its many forms. By 2055, because of improved life expectancy, it is thought that number will have doubled.
And yet there remains much ignorance about dementia and as a society we are not always as supportive and as kind as we could be to those who have the disease and those who care for them. What’s more it is often difficult for patients and families to know where and how they can access the help that is available.
It was these thoughts that led to the formation last year of a group called Kirklees Dementia Action Alliance, which is part of the wider national campaigning group, Dementia Action Alliance.
The group initially comprised Huddersfield solicitor Adam Fletcher, managing partner at Ridley and Hall; Hilary Thompson, who is chief executive of Age UK for Kirklees and Calderdale; and Simon Wallace, co-ordinator for the DAA in Yorkshire and Humberside.
“All of us have a personal reason for being involved,” explained Adam, “we all know someone with dementia. My grandmother is in residential care and has been let down by the system. I still don’t think that she has got a full diagnosis and I have seen the difficulties that my family has been through. Dementia is a life-changing issue and it’s hard enough to deal with that on its own, without having to navigate through the system and processes in order to get help.”
On Wednesday next week (May 21) the new alliance is hosting a launch event with guest speakers to which anyone with an interest in dementia is invited. It will take place at the Huddersfield Town training ground, Canal Side, Leeds Road, from 11.45am.
From this small beginning, it is hoped that the alliance will be able to draw up a register of all services on offer to dementia patients and their carers. “We want to be able to signpost people so they get the right kind of care and help,” Adam explained. “We want organisations to plan together over how they can make life better for people living with dementia. We want to see people in shops and services being trained to understand.”
Adam says it’s also important for employers to support employees who may be caring for dementia patients. “We make allowances for people with young families but tend not to understand the problems of those caring for elderly parents,” he pointed out.
The plight of those with dementia is also being highlighted in a new TV advert campaign launched last week. Celebrities, including author Terry Pratchett, comedian Simon Pegg and musicians Chris Martin, Lily Allen and Alesha Dixon encourage people to become “dementia friends”. The music stars can be seen performing The Beatles’ track I Get By With A Little Help From My Friends.
Even before its official launch, the Kirklees alliance has been contacted by over 40 organisations and individuals involved with dementia care - an indication of just how important and widespread the issue is.
The organisation also has a campaigning and awareness-raising mission. According to Barbara Schofield, nurse consultant for older people with the Calderdale and Huddersfield NHS Trust, early detection is vital for accessing appropriate care and improving quality of life. She said: “We want people to look out for the early stages and we’re not talking about the sort of memory lapses that everyone has, such as going upstairs for something and then not remembering why you’re there.”
Barbara is currently researching a PhD on the subject of compassion in nursing and is focussing on the care of older people in hospital. She has a “massive’ interest in dementia conditions and has been involved in a project that brings young people into contact with dementia patients.
She explained: “We are doing some inter-generational work with students from Greenhead College and Crossley Heath School. Their students are working with dementia patients in hospital and people at risk of dementia. About 28 students come in once a week, many of them are interested in pursuing a medical career.” Such work, she says, is all about promoting the understanding of dementia.
Professor Stephen Curran, an old age psychiatrist with a visiting chair in the subject at the University of Huddersfield, welcomes the work of the alliance and agrees there needs to be a better public awareness of the condition. He knows that many patients and families face an uphill struggle to find the right kind of help.
“One of the challenges is that it is very difficult for families to navigate the system and find their way through all the different organisations,” he said. “By the time I see someone in clinic they may have had a ‘journey’ that has lasted 18 months and feel as if they have been passed from pillar to post.”
However, Prof Curran believes that attitudes towards mental health problems and dementia conditions are changing and no longer carry the stigma they once did. “We used to have dementia services, now we call them memory services, and what used to be termed senile dementia is now Alzheimer’s because we are recognising it as a genuine and real medical condition and not just something that happens in old age,” he explained.
The key to securing the best quality of life with dementia, he says, is get an early diagnosis and stay as physically healthy as possible: “If there are early signs then someone should go to their GP, but often it’s only in retrospect that families say they could see that a relative was developing problems. It might be normal to go into the kitchen once and forget why you’re there, but it’s not normal if you’re doing that four or five times a day.
“It’s also important that older people remain physically active, have a good diet and reduce or stop smoking and drinking alcohol. All these things can affect the dementia.”
The term dementia describes a set of symptoms including memory loss, mood changes and problems with communication and reasoning.
Dementia is not part of growing old, it is caused by diseases of the brain, the most common of which is Alzheimer’s.
Dementia can be caused by a number of factors, including problems in the blood supply to the brain and irregularities in brain cells. A type of dementia called Korsakoff’s Syndrome, is caused by the excessive drinking of alcohol.
According to the Alzheimer’s Society only 43% of people with dementia receive a medical diagnosis. The organisation says that early signs to look out for include: struggling to remember recent events but easily recalling the past; forgetting names of friends or everyday objects; repeating yourself or losing the thread of a conversation; feeling confused even in a familiar environment; other people starting to comment on your forgetfulness.
The symptoms of dementia can be caused by anxiety and depression.
Loneliness is a major problem for nearly two-thirds of dementia sufferers who live on their own.
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