‘Don’t suffer alone’: Expert guide to dealing with dementia with little known benefit you could be due

A NEW advancement in medical science could predict if a person has dementia 15 years before diagnosis.

And this means the one in three people who develop the brain condition would be better prepared to face what’s ahead.

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But until tests become widely available, readying people for what lies in front of them after a diagnosis is the work of dedicated experts across the country.

Carolyn Irvine is one such expert dementia advisor who helps patients, their loved-ones and carers through the delicate minefield the disease brings with it from advice on dealing with symptoms to practical tips on how to access benefits.

Today she speaks about what to expect when diagnosed and how to help a loved-one with the illness.

ACROSS Scotland there are 90,000 people living with some form of dementia.

There are over 200 different types of the disorder, which damage brain cells and leave sufferers with a range of symptoms.

Carolyn Irvine, who works for Alzheimer’s Scotland, is one of a team of dementia advisors on hand to support people through diagnosis and beyond – and she said no two cases are ever the same.

She explained: “People have a very black and white idea, usually from personal experiences with other family members. Automatically folk will transpose that experience onto what theirs might be.

“So if it’s been very negative the assumption is that’s the path you will go down. But everyone goes through a very individual experience with dementia, it’s not a one size fits all.”

Carolyn, who works in Renfrewshire, supports people who have been diagnosed as well as their loved-ones, and delivers Dementia Friends sessions in the community to educate people on the condition.

And while everyone’s experience of the disease is different, many of the concerns people have are the same.

She said: “For people diagnosed they often want to know about the impact, the symptoms, the implications. We help folk to think about the future, to plan a wee bit but also to help them remain as active in their own life as possible.

“There’s umpteen types of dementia, with four or five more common ones, but it’s not often broken down in appointments with psychiatry what the ins and outs of that diagnosis might be and why it’s not always the same as someone else’s dementia.

“People also question what it means for their family. So it’s a lot of reassurance, reminding the person there’s lots of support out there. If we can help someone feel supported and part of the community we stave off having to go down the route of formal support for a wee bit longer.”

And for the loved-ones, it can also be a daunting time.

The advisor said: “They want to know what the specific type of dementia looks like and how to cope – it can be pretty difficult for someone to try to manage symptoms when the most obvious way of dealing with it doesnt work.”

Carolyn and her team offer practical advice for tackling some of the most distressing aspects of the disease, such as memory loss and forgetting how to do everyday tasks.

She said: “It can be helpful for carers to think about why the person might be repeating themselves, for example.

“For example, are they anxious about something, are they bored and unable to distract themselves from the issue they are repeating, or have they genuinely forgotten?

“If the person with dementia knew the answer to their question, they probably wouldn’t ask it. It can be more helpful to try to work out the reason behind the behaviour and take it from there.”

Another worrying symptom is asking about people who are no longer around.

Carolyn said: “Think about why you might want to see your mum or dad, usually a parent helps us to feel safe and secure and provides us with comfort. Perhaps this is what the person is seeking.

“Talking about the person or thing that is not here anymore can help and allows you to explore positive memories. Most importantly, acknowledge what the person with dementia has said.

“Pretending they have not asked the question, or glazing over it, only serves to make someone feel that what they have said is not important.”

One of the other pieces of advice Carolyn gives carers is to avoid being overbearing, as it can actually do more harm than good.

She explained: “Sometimes a person with dementia will have difficulty with sequence tasks, like making a cup of tea or getting dressed in the right order.

“These things can become a challenge and families don’t always know the best way to offer support without taking over. The person with dementia can feel like they are being treated as if they’re not able to manage any more.

“It’s about the subtleties of providing support rather than just diving straight in because if the person with dementia doesn’t use it, they will lose it.”

No matter what someone is going through Carolyn said it’s vital not to go through it alone and to access support available. That could be a local dementia advisor or the national dementia advisor service.

Meanwhile, local carers centres focus solely on the carer, dealing with things like rights as well as looking after their wellbeing.

She added: “Keeping a diagnosis to yourself doesn’t serve you well in the long run so we encourage people to reach out.

“Thinking about the future is usually helpful because we know as the illness progresses people become more challenged in being able to make those real impactful decisions, so thinking about longer term power of attorney, making sure you have the benefits you are entitled to.

“Everyone who is diagnosed in Scotland is entitled to at least a year’s post-diagnostic support and I would encourage everyone to make sure they ask for that if it’s not said to them at the point of diagnosis. It means you have someone who will help you.”