LIKE MINDS

LIKE MINDS

By Jo Henwood

A diagnosis of dementia is difficult at any time of life but if it comes while someone is young, the news can have a devastating effect on the person and their family.

Phill brings his wife Pat a cup of coffee in bed each morning. Sometimes he takes a second cup, because he has forgotten he brought the first.

Phill first noticed things weren’t right when he was speaking publicly. “I was having to say: ‘Sorry lads, I can’t get that word’. I wasn’t on the ball.”

A design engineer, he first went to his GP in 2019. He failed a memory test ‘miserably’ and a scan showed he had Alzheimer’s, a form of dementia.

Community Mental Health Nurse Helen Smith has been supporting people living with Young Onset Dementia, or ‘working age dementia’, for almost 20 years.

“Younger people are more often diagnosed with frontal, temporal lobe dementia, which can lead to changes in personality and issues with speech,” says Helen.

“Family and work colleagues see changes and it can be confusing for them. I have known relationships break down because someone’s behaviour has changed so dramatically. We use the term ‘living with dementia’ and try to maintain as much normality as possible.”

For those still working, the financial implications can be huge. The team works with employers to make reasonable adjustments to people’s work patterns or roles.

Helen says peer support is vital. A monthly support group runs, with initial funding from Mersey Care’s charity. Phill is an active member of the group. The team’s assistant psychologist Tom Faulkner says the group is a safe place for people to discuss their situation.

“There is a stigma attached to dementia and people don’t always want to discuss their diagnosis with friends and wider family. At the support group people feel able to share experiences and learn from each other.”

The group offers advice, welcomes guest speakers, and provides support for carers.

Family and work colleagues see changes and it can be confusing for them.

Activities include memory games, quizzes, and special events. Some members get involved in social research at Liverpool universities, which benefits both academics and service users.

Tom explains: “If a company is developing a product for people with dementia, it’s only when someone with lived experience tries it out that academics can get the real picture.”

The support group also provides a valuable space for people to think about and share with loved ones what they would like to happen in the future.

Helen Smith explains: “We can spend time with the person and their family talking about the type of help and support they might want, and where they might like to be cared for. Having this documented means everyone is clear what the person has asked for, which is so important later.”

WE TALK ABOUT HOW WE FEEL

Phill now takes medication to slow down the progression of the disease – and he gets involved in activities at North Sefton Young Onset Dementia Support Group.

“We do things you can connect to - talks, memory games, music – things that bring back memories. And we talk about how we feel.”

He is now retired and determined to keep going with hobbies. He swapped karate – he can’t remember the sequences – for Tai Chi – and will attempt a half triathlon in Southport later this year. He’s keeping his engineering skills honed by building a trike, following methodically written notes. Soon he’ll start helping daughter Emma with her new house.

His father lived with dementia, so Phill is aware of the prognosis although admits that he doesn’t know how it will affect him. He still loves cooking, but often forgets whether he’s added an ingredient.

“It (dementia) is always there, poking fun at you. But I’m not looking for sympathy. I live every moment as it comes.”

MORE INFORMATION

Young Onset Dementia is a diagnosis of dementia under the age of 65. It is relatively rare and there are few support groups focusing specifically on the condition.

More help is available from: Dementia UK Dementiauk.org

Resources and information aimed specifically at younger people and the issues they may face.

Admiral Nurse Dementia Helpline 0800 888 6678

Alzheimer’s Society Alzheimers.org.uk

Dementia Support helpline 0333 150 3456

There may also be a support group in your area.

Citizens Advice Bureau citizensadvice.org.uk

Watch a short film about what happens at an assessment at: merseycare.nhs.uk/our-services/ liverpool/dementia-services

CHARITY BEGINS...

The Young Onset Dementia group is supported by the new Mersey Care charity, Mersey Cares. Senior fundraising manager Joanne Watson explains the charity’s role.

“It’s simply to help the Trust enhance services and fund items, activities and programmes usually outside the scope of the NHS. It’s for innovative ideas that staff and people in our communities tell us they’d like to develop for patients, carers and colleagues.

“They feel strongly that people should know more about suicide prevention, so that’s a real focus. So is dedicated support for patients and carers to stay well. We’ll also fund ways to reduce pressure for NHS staff and volunteers with health or financial struggles.

“Everyone has a right to good health. We’ll play our part in making that happen.”

Donate at merseycares.org.uk Organise a fundraising event or take part in our challenges using our fundraising pack: charity@merseycare.nhs.uk