When diagnosed with dementia, people's reactions are often shock, helplessness and depression. But some claim it can give you a new lease of life. Dan Parton spoke to the Scottish Dementia Working Group about turning a negative condition into a positive force for good.

When Edward McLaughlin was told he had dementia, the news came as a release rather than a burden. The condition had already turned his world upside down by that time and with the diagnosis his wife finally left him. But instead of retreating into himself, Edward discovered that losing historical baggage can be a liberating experience.

He subsequently left his job, turned his back on the domestic problems that were getting him down and indulged his passions for painting and model making. He suddenly looked at life as “a whole bright page in front of me”. He also treated dementia with the same intellectual rigour, studying it and analysing it as a subject rather than an illness.

“I have no great contact or recollections or yearnings for life past – what I did, who I knew,” he says quietly. “I love dementia. It is fascinating. I definitely socialise differently with it, so it is fine by me. It’s opened new doors that I never knew existed.”

Edward also decided to help others with the condition and joined the Scottish Dementia Working Group (SDWG), which is a campaigning group that aims to improve services and attitudes towards people with dementia. He wants to show everyone – with or without the disease – that the illness should be viewed as another phase of life we pass through. Above all, members of the group want to change people’s perceptions of the condition.

“We’ve challenged ourselves to free other people from the shackles that society places on them – the stigma, the embarrassment, the depression they have when they get a diagnosis,” he adds. “We have to go out there and make a difference. I love the challenge of it."

“I’ll challenge anybody on the dementia field and we accept any offer we can to go and talk to people or make speeches. Previously, what people wrote was a surmise – ‘people with a diagnosis think like this’ – instead of asking people with a diagnosis ‘how do you feel? At the college students could ask questions and were given answers. This opened up a new avenue and has proved very popular.”

Talking it over

But it’s not just students and social workers that the SDWG believes it needs to address. James McKillop, another SDWG member, wants to use his experience to help members of the medical profession understand what it’s like to have dementia. He believes that if he had received an earlier diagnosis by his GP, it could have saved a lot of personal issues he was facing – including his health and the breakdown of his family.

“I knew something was going badly wrong in my work life, my social life and my family life and there was no explanation for it – the doctor didn’t produce anything apart from saying it was just normal for someone of my age,” he recalls. “Eventually I saw a psychologist and got a diagnosis, but up to then I was living in hell because I had behavioural problems."

“I was accusing the family of doing things and they weren’t. It was the worst period of my life, but it could have been helped if I’d been diagnosed earlier."

“My wife was going to leave me because of my behavioural problems. Once she was told that I had an illness, the family rallied round and we became a unit once again.”

James’ experience of initial pre-diagnosed dementia is a common story with most people who have the condition. Each member of the SDWG recounts the overwhelmingly negative reaction given to them by healthcare professionals after they were diagnosed. Talk was often more about a life lost and over rather than living a new life with a condition.

Little wonder that after such negative feedback, people diagnosed with dementia feel initially crushed and grief stricken. Agnes Houston recalls that the toughest part was coming to terms with the diagnosis. Could there be a mistake, for example? “I thought there was nothing wrong with me and even today I sometimes think I don’t have Alzheimer’s,” she says. “Surely, they’ve made a mistake…”

Such emotions often lead to clinical depression and Agnes admits she was feeling very low until she attended a meeting with the SDWG: “If I hadn’t found the group I know in my heart I wouldn’t be as articulate as I am today. Depression would have happened; what else would I have apart from to sit back and ask ‘what can I do next?’ Life is over – that’s what I was basically told.”

Agnes now believes Edward and James saved her. They showed her that a new life can emerge from the old – and in ways she could never have imagined. “I assumed that when you are diagnosed with dementia your ability to learn anything new and retain it has gone,” Agnes says. “But because I listened to Eddie and James I became involved in an art class and I learnt how to use glass."

“Professionals should not be telling us ‘you can’t do this, you can’t do that, your life is over’ – it’s not what you can’t do, it’s what you can do."

“You can still function, but it’s just you’re functioning differently; maybe slower or not as well as you did before, but you still have abilities.”

For the group, a positive mental attitude is crucial for everyone with the condition. James believes that after diagnosis, people should embrace it rather than attempt to conceal it.  “It wasn’t a death sentence to me,” he says. “I was living a horrible life before diagnosis, but since then – having met support workers and people doing this – I have a better quality of life than I did before diagnosis."

“I’d never used a computer in my life but I went to college and was trained how to use email; I’m on email every day to people all over the world."

“We’re dealt a raw deal but we’re making the best of it; it’s not getting us down, we’re fighting it and we’re winning.”

Lone voice

While the working group has made a huge difference to the lives of its members and people in the community with the condition, for James much more could be achieved. For the moment the SDWG is almost alone as an organisation that is run by people with dementia for people with dementia. He encourages others to set up similar entities across the UK.

Moreover, word of the group has spread and James now receives emails and telephone calls from people around the world asking them for advice, information and inspiration. Indeed, members have spoken at conferences all over Europe to try to raise the profile of dementia and change perceptions about the condition.

“There is this cross of information, which there wasn’t four or five years ago,” Edward says. “Most of the people I’ve spoken to from Europe don’t feel so isolated now, that it’s not a Dutch problem or a Belgian problem. They realise there are more of us out there. And that is where the strength eventually comes from, once you all start getting together.”

The most common forms of dementia are:

  • Alzheimer’s disease: This is the most common form of dementia, affecting some 450,000 people in the UK. With Alzheimer’s, ‘plaques’ and ‘tangles’ develop in the structure of the brain and lead to the death of brain cells. Additionally, Alzheimer’s sufferers are deficient in some chemicals in the brain.
  • Vascular dementia: This is brought on by ‘wear and tear of the brain’, including tiny strokes, poor circulation, arteries furring up, minor head injuries and general aging, which affect the brain’s blood supply.
  • Fronto-temporal dementia: This includes a range of conditions such as Pick’s disease. This form of dementia is caused by damage to the frontal lobe and/or the temporal parts of the brain – the areas responsible for behaviour, emotional responses and language. This sort of dementia is more likely to affect people under 65 years old.
  • Lewy Body disease: This is similar to Alzheimer’s and often characterised by the sufferer experiencing paranoid thoughts or hallucinations. Many sufferers also fall over for no apparent reason or have problems judging distances. Lewy Body generally progresses more quickly than Alzheimer’s.

Dementia can also be brought on by other diseases, such as Huntingdon’s, Parkinson’s or multiple sclerosis, but this is less common.

Prolonged heavy drinking can also bring on a dementia-like condition called Korsakoff’s syndrome, where sufferers suffer from short-term memory loss. This is brought about by a thiamine (vitamin B1) deficiency, which comes from poor nutrition and/or inflammation of the stomach lining caused by alcohol, which can impede the body’s ability to absorb key vitamins.