Imagine being in your mid 50s and being diagnosed with dementia. Then imagine trying to go about your everyday life with no obvious physical signs of the condition but being tutted at as you struggle to speak, ignored in conversations or suddenly finding that any of the multiple tasks that you would normally do, such as doing the weekly shop, is overwhelming.
Sherry & Alan, Pat & John, Sylvia & Chris and Tina & Keith are four couples living with a Young Onset Dementia diagnosis – all four women have a different type of dementia - and they all attended our latest young onset dementia support group meeting on Friday.
Some of the couples with our Dementia Care team.
The group was set up earlier this year to give those aged under 65 living with dementia and their partner, or a friend or family member, the opportunity to meet with others in with a similar diagnosis.
Sherry was diagnosed with frontal lobe dementia at 56. She and husband Alan both worked for the ambulance service, with 18 and 30 years’ experience as paramedics respectively.
She says; “People assume it’s older people who get dementia so it’s sometimes difficult to get people in shops, for example, to understand that I have the condition and can sometimes struggle to get my words out.
“I was in a shop and the cashier started to tut at me when I couldn’t speak – I just needed a moment.”
Pat, from Lowestoft, was diagnosed with vascular dementia ten years ago and said that she couldn’t accept it at first. Her husband John says; “It doesn’t change the person - it changes the mind. Don’t make assumptions – for example people often talk to me about Pat when she’s right there – so why didn’t you speak to her? Talk to her like you would anyone else.”
A lack of understanding can be a key challenge for those with dementia and this week we’ll also be sharing some tips to help with this. Awareness is key – just because you can’t see someone has a condition it doesn’t change the fact that it exists, and some simple steps can make a real difference.
For example shops changing their layouts can be a source of problems. While you may be annoyed to find something has been moved around in your favourite supermarket, for someone with dementia it can result in confusion. It’s likely to be a point of reference moved or an alteration in lighting that can change a familiar pleasure into an unpleasant and sometime intolerable situation – so much so that you may never return to the store.
The plea from the group is for retailers to consider customers with dementia – to provide more help in shops so they don’t have to be so dependent on their partner and not to change an established shop layout if possible.
After being referred to the group, many of the participants are finding the chance to talk with others who understand useful and supportive and they are encouraging others with Young Onset Dementia to come and join them.
For Chris and Sylvia, from Gorleston, it was their first meeting on Friday. Sylvia said; “I was recently diagnosed and was referred to the group. I just want to find out more and talk to other people in a similar situation.”
John says; “It’s been beneficial for Pat and me – it gives us time out to meet other people who have dementia and their partners.”
The group was set up by the James Paget Dementia Care team after speaking with Keith and Tina. Tina has the same rare type of dementia author Terry Pratchett had - posterior cortical atrophy (PCA), also known as Benson’s syndrome - and was also diagnosed when she was 56.
“I had to be different and get a rare type. I just wanted to meet people who were also living with dementia at a relatively young age.”
Sherry describes our dementia care team as being like ‘my little angels’.
Ali Thayne, Dementia Care Lead at the James Paget, says it is important that those with Young Onset Dementia are recognised.
“Many people think of dementia as being a condition that only older people have, however we know there are many out there who are being diagnosed in their 50s, or even younger, who need to know they are not alone.
“The support group aims to help those living with dementia, and those who care about them, as we recognise how difficult it can be to deal with everything that comes with a diagnosis.
“You can access both peer support and expert advice through the group, and we are guided by those taking part around what you would like to see or learn more about, so it all about trying to help you as much as we can.”
Five key points to remember, with thanks to our Young Onset Dementia Group;
1. Dementia does affect younger people
2. Please give me a bit more time – please understand that it may take a moment - don’t rush me.
3. Please give me more help in shops and other places I visit, so I don’t have to be so dependent on a partner. Perhaps think about having a ‘dementia champion’ to raise awareness.
4. Please treat me as person.
5. Please communicate with me.