'It's just my brain is misbehaving'

By Gillian Sharpe
BBC Scotland

image source, Thinkstock

Anne, 55, was diagnosed with a rare variant of Alzheimer's Disease in June, four years after first raising concerns about her memory and vision. She is one of thousands of younger people learning to live with a disorder that mainly affects the over-65s.

"We have a neurological disorder that will steal our memory, that will steal our relationships, many things," she says.

"There's nothing we can do about it, we just have to get on with it, but we don't need to be labelled as demented. We are people with a disorder and that's it."

According to Alzheimer Scotland, about 88,000 people have dementia in Scotland, the umbrella term for a group of conditions and symptoms, and about 3,200 of these people are under the age of 65.

Glasgow has been playing host to a major conference on the subject with a focus on "dignity and autonomy".

For Anne, who wishes to remain anonymous, the process of diagnosis was a long one.

She said: "I wasn't finding words when I was speaking, if I had a piece of work to do, how do I actually start that, my thought process was not good."

Her vision was also affected but her condition was eventually diagnosed by a specialist.

image source, Thinkstock
image captionDementia is predominantly a condition of old age

Dementia is an umbrella term for a range of illnesses and disease symptoms, which primarily or secondarily affect the brain.

Alzheimer's disease and vascular dementia are the most frequently occurring illnesses.

There are currently 88,000 people with dementia living in Scotland.

It is predominantly a condition of old age, however, there are around 3,200 people with dementia under 65.

Source: Alzheimer Scotland

She spoke at the recent conference because she wants a better, wider understanding, especially of the particular experience of younger people who are diagnosed.

"I knew it was coming, I knew, but nothing prepares you when you hear that, it's devastating," she explains.

"It's devastating to anyone being given a diagnosis of dementia, the word itself is horrendous but for a younger person, the implications for you and your family, it's very scary."

She says it was "a bit of a minefield" to understand the processes to go through with your local authority but she found that on the whole "the system is working".

For her the important thing has been to realise that, with support "there's still hope, you are still yourself you just need a bit of help and you might need a bit more help as you go along".

She now finds that she plans more and is able to live well. Some things are challenging though.

Difficulties in her vision mean that going downstairs can be difficult, as can telling whether a window or glass door is open or not. Noise can also be an issue.

'Wake-up moment'

Anne no longer drives, a decision she took as she was not sure how her brain would process new information from the road and she felt she had a responsibility to herself and her family and everyone else.

She says she now realises that she had been using many different strategies simply to cope with things.

She describes her family as having been very "supportive" although the clarity of the diagnosis was a "wake-up moment" and she herself experienced a "dip".

media captionAnne describes the moment she was diagnosed with dementia and talks about life with the condition

She has been open to friends about her condition - people she knows will understand - but not with the wider community.

"So many people are frightened of the word," she continues.

"The media scares the life out of people about it because individually we cannot do anything about it, people are frightened, they think you can catch it so they kind of put their head in the sand".

"It's out there, let's be open about it, let's share what knowledge there is out there and educate people that you can live well with it."

She hopes medication will be useful and says she feels she is in it for the "long haul".

"Yes you will have your low days but everyone has them. We are not a special case, we are still normal, we are ourselves, we just have some extra issues now, but we can live a good life.

"I've had people say to me 'you look absolutely fine' and I think: 'I am absolutely fine' it's just one of those things and as I say 'it's just my brain is misbehaving'."

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