BEST-selling author Terry Pratchett’s response to being diagnosed with a rare form of dementia was to reflect on his own father’s death and admit to a pang of envy.
Cancer at least gave Mr Pratchett snr a chance to communicate, the writer recalled, “bustling around the house, fixing things” for up to just two weeks before his death aged 86.
But unlike his father, he had been cursed by a condition which, in his words, “strips away your living self a bit at a time”, which attracts only a fraction of the funding which goes towards researching cancer, and yet affects around 800,000 people in the UK – and even more families and friends – with no foreseeable “cure”.
Then, with typical wry humour, the author promised to continue “scrabbling to stay ahead long enough to be there when the cure, which I suspect may be more like a regime, comes along”.
He certainly won’t be scrabbling along alone. For the grim news for many of us is that old age will not arrive unaccompanied – and there’s a good chance it’ll be joined by its doddery old pal, dementia.
At the moment there are around 7700 people over the age of 65 living in Edinburgh with dementia, with many more undiagnosed. However, an ageing population means that cases are set to increase by 65 per cent in the next 20 years – pushing that figure up to 12,000 people.
And almost every one will have close family, friends and colleagues whose lives will also be changed by the stress and worry of living with a loved one whose ability to think straight is slowly unravelling.
Now in a bid to prepare us all for what lies ahead, work is under way to create a “dementia friendly” citywide approach, drawing together agencies which currently work with sufferers and their families, raising awareness of the symptoms to help aid early diagnosis and encouraging communities to pull together to help.
Recognising the Signs was launched this week by the city council, Alzheimer’s Scotland and NHS Lothian in the hope that by highlighting the symptoms – which can often be mistaken and regularly differ from person to person – more people can be helped earlier and continue to live independent lives.
It coincides with moves to make Portobello the city’s first full dementia friendly area, where shopkeepers and businesses will be encouraged to address the difficulties faced by customers with dementia, to look out for the signs and raise them where appropriate. The proposals are modelled on an award winning project pioneered in Motherwell, which has seen shops, services and businesses in the Lanarkshire town’s centre signing up to support people with dementia, their families and their carers.
Organiser Andrew Senew, of Portobello senior care agency Home Instead, says the local initiative has old fashioned community spirit at its heart. “We want to challenge local businesses to become more dementia aware and to consider what they can do as, say, the owner of a coffee shop or the local pharmacy, dentist or pub, to help.
“That could be by becoming aware of the symptoms and giving people time to make choices. For example, go to a cafe and there are many different kinds of coffee which can be pretty overwhelming for someone with dementia. So it’s about the cafe staff recognising if someone is struggling and offering them a more simple choice.
“It could be the difference between that individual going out of their house tomorrow or saying ‘I can’t cope any more and shutting themselves away’. That ends up being a personal tragedy.”
The first meeting to discuss the proposals takes place on Monday at Portobello Library from 3.30pm, when one of the organisers of the Motherwell project, Sandra Shafii, will reveal how it has helped dementia patients maintain a good quality of life despite the condition.
The Recognising the Signs campaign points out that following diagnosis, patients in Edinburgh can choose to receive a year of support to help them come to terms with their illness, plan for the future and help them to live as well as possible. Specially recruited link workers make sure that people with dementia and their carers do not become isolated, and receive support.
According to dementia patient John Collins, 66, of Silverknowes Crescent, early diagnosis has meant he and wife Jane have had support and, importantly, medication to help. “It started with me forgetting how to do things like use my computer,” he recalls. “I knew something was wrong. Now I take my medicine and try to hold it at bay.”
And Jane, 69, adds: “At first we were in denial. Getting diagnosed was a shock as you think of it as being something that affects elderly people, but it’s also been positive as it’s meant we’ve had help and we know what’s happening.”
Key symptoms include short-term memory loss that affects daily life; unexplained anxiety or depression; problems with thinking or reasoning, such as finding it hard to follow conversations or TV programmes. Two thirds of people with dementia are women, and there are almost as many carers of people with dementia in the UK as there are sufferers – often they live with constant stress and pressure of having to cope with their loved one’s distressing symptoms.
Helen Hay, Regional Manager of Alzheimer’s Scotland, says: “Getting a timely diagnosis is hugely important for people with dementia and for those closest to them. It opens up access to information, advice and support; all of which are vital in planning for the future.”
QUESTIONS START THEN ANSWERS ARE NEEDED
EVERY individual is different and everyone’s dementia journey is different, writes HELEN MARTIN. But first signs are usually more significant than “ordinary” forgetfulness such as walking into a room and forgetting what you came in for, or forgetting something important on the shopping list. Families, perhaps in denial, often dismiss early indications.
One of the first signs of my mother’s dementia came when she was sitting in my familiar kitchen and suddenly asked: “Have I been here before?” An avid viewer of British soaps, she began to lose the ability to follow a storyline. Telephone numbers she had known for years deserted her and in desperation, she had them written down in dozens of places in every room.
If she asked for an address over the phone, it was impossible to help her because in the time it took her to process the act of writing a word or number down, she had forgotten it.
Hallucinations followed. Failure to understand how at risk she was. Incontinence. Inability to eat without help. People think dementia is just in the brain. But the brain controls the body. Dementia is a terminal illness affecting everything from appetite to recognising your own children.
Eventually, my mother required full residential nursing care. Some people are able to stay at home. But whatever the outcome it is so important that people with dementia are given the maximum support, understanding and reassurance by their family and community to make the very most of their later years rather than existing in confusion, fear and anxiety.
The scheme in Portobello is exactly what people in the early to mid-stages of dementia need to enable them to carry on living independently, safely and with support in their community. Shopkeepers or someone in the bank may even be among the first to notice signs of the condition.