“We want everyone to remember we are people”

Friday 24 May 2019

Two islanders with dementia have opened up about their experience, calling for others like them to be more included in the community.

The comments from Violet and Windsor come as part of Dementia Action Week, which aims to challenge misconceptions and show that people with dementia should be treated the same as anyone else.

Speaking to Express, the pair said they hope that by sharing their experiences, they will help improve services and make the island more dementia-friendly for themselves but also all those who might get diagnosed in the future.

Violet lives on her own and says she does everything for herself. She says people should be encouraged to keep the life they had and to continue to do the things they used to do before they got diagnosed.

Pictured: "There’s nothing worse than to be staying on my own.”

“Sometimes people just sit back and say, ‘I’m sick.’ Life doesn’t stop at the diagnosis. Forget you’ve got an illness!” 

Violet has been heavily involved with the Jersey Alzheimer’s Association – initially as a volunteer – to help improve their services. Recently, she took part in a dementia workshop at the Hospital to help nurses understand what it’s like to have memory problems.

“You can’t see it unless you know what it is,” she said. “It’s very difficult to explain. You start forgetting things, perhaps you’re not eating properly. It takes a while to realise. You’re lucky if you see a doctor and they find out what’s wrong.

"You try and understand what things are going on, and perhaps you’re not always accepting it.”  

Pictured: Violet called for all islanders to be kinder to those who like her live with Alzheimer’s.

She’s been asking for more activities and for “people with the knowledge” to get involved with the weekly meetings so that the group can learn new things. “I want to be doing things,” she said. 

Violet is also asking for all islanders to be kinder to those who like her live with dementia. “People have to understand what it is and be willing to help, so that there is more help for them when their time comes. We want everyone to remember we are people. Don’t be nasty it could be you tomorrow!”  

One thing Violet and Windsor say has helped enormously has been meeting for a weekly coffee and tea date at Beresford Street Kitchen with a group of other islanders living with dementia.

The weekly date is a follow-on group from the Cognitive Stimulation Therapy service provided by Older Adult Mental Health Services, a 14-week course including discussions, games and activities aimed to tap into the senses and stimulate the brain. 

Pictured: Meeting weekly with other islanders is "amazing" for Violet, while Windsor enjoys the opportunity to "integrate with people".

“Coming here helps us integrate with people,” Windsor said. “You sometimes think you are alone but you realise you are not the only one and that some people are actually worse than you. I enjoy the banter here, and I meet some clowns! I come every week, but sometimes I tend to forget!”

“The group has done an awful lot of good for me. I met people and I really enjoyed that,” Violet adds.

“It’s been amazing. For me there’s nothing worse than to be staying on my own, with no here to go and no one to go with.”

Emily Tonkin-Gage, a Clinical Psychologist who works with Older Adult Mental Health Services, says that when the community, services and shops are accessible to everyone, islanders living with dementia will by extension be included.

Pictured: Violet and Windsor want more opportunities to socialise.

“Carrying on with social activities helps maintain abilities for longer,” she explained.

“We need to stimulate socialising. It’s about giving people time. 

“It’s important for people to see the person behind the diagnosis and to recognise the illness does not define them. There is still a person with their interests, with their history. We all have interesting stories to share. It’s about trying to see that rather than the problem.”