Dealing with dementia
Most of us accept that a loss of memory is part and parcel of getting older. However, for some people, their memory may begin to fade because of conditions and disease, which can lead to dementia.
According to the Alzheimer's Society, which has branches in both east and west Suffolk, the term dementia describes the symptoms that can be seen when the brain is affected by conditions including Alzheimer's disease itself and in some cases the effects of a stroke.
Dementia is progressive, which means the symptoms will gradually get worse, though the exact pattern which the dementia takes depends on the individual concerned.
Sue Vincent is a member of the Alzheimer's Society in the east of the county. They help to provide advice and support for sufferers and their carers.
Sue's mother was officially diagnosed with Alzheimer's in 2006 but dementia had started to effect her years before.
"Well she'd become more anxious in her behaviour and also forgetting very day to day things," explained Sue.
"These were things like getting confused with the time of day and what time to do things like taking tablets, so minor things to start with but as it gets worse it becomes more of a problem."
At the moment the Alzheimer's Society is still trying to challenge The National Institute for Clinical Excellence (NICE), which is the body which decides what treatment the NHS can afford to provide.
They've refused to offer certain treatments for the early stages of dementia saying they are too expensive, and for Sue the issue of timing had a huge impact on her mother's quality of life.
"In my mother's case the onset was gradual and sometimes the onset can be a lot more marked.
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"If she'd have got an earlier diagnosis she'd have been able to start her medication earlier which would have had more effect, but she did get the medication because she has moderate dementia.
"It's difficult to tell but she may have felt more able to look after herself for longer."
Care for carers
Sue admits that despite knowing she, like most adults, would come to care for her mother on some level in her later life, adjusting to the particular needs that dementia brings has been challenging.
"It's a bit like role-reversal and fortunately for us we were able to cope with that as long as we were there for her every day and on the end of the phone.
"Because she could cope with the phone at that point, we had some assurance that we could cope with it."
Carers, particularly where mental health issues are concerned, are the experts about their relative's conditions because they live with it day in and day out, and have to learnt to adapt to often difficult situations.
Sue has the support of her siblings in caring for her mother, though is aware that not all carers have the support they need.
"The night is the worst time, when it's your husband or wife and they've been up and about all night, been abusive or shouting and screaming.
"They've suddenly gone out the door and wandered off and you realise you don't know where they are.
"I do know carers where things have been a problem and their siblings and relatives distance themselves from it.
"I think a lot of it is because they don't understand it, and because it's under the umbrella of mental health it's difficult to understand."
In 2007 Terry Pratchett, the bestselling author of the Discworld fantasies, was diagnosed with Alzheimer's. His international profile has brought a new focus to dementia, which Sue believes will bring huge benefits.
"One of the things that's happening at the moment is that they are trying to raise awareness of dementia, and let people know that if somebody gets dementia don't stay away because they need your support more than ever to try and help them understand why people behave in a certain way."
There are currently 700,000 people with dementia in the UK. Of that number, 15,000 sufferers are younger people.
The Alzheimer's Society is starting a new education campaign aimed at GP's and runs support groups across Suffolk. They say 1 in 3 people over the age of 65 will die with dementia.
Sue would encourage anyone with questions or concerns about dementia to get in touch with The Alzheimer's Society.
"What we're trying to do is raise our profile as a branch so people know that we're there for help and advice."
See Terry Pratchett: Living with Alzheimer's, 4 & 11 February 2009, BBC Two, 2100 hrs
last updated: 13/02/2009 at 15:19
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