At Dementia NI we are really very lucky and very proud to have more than 80 members who support our work across NI. Our members, all of whom live with dementia, work with us to help raise awareness of the fact that it is possible for an individual to live well with dementia for many years.
In our monthly Meet Our Member piece, we'll give you the chance to learn more about our members to give you an insight into who they are and the work they do with us. Today, we introduce you to one of our Founding Members, Frances Cousley.
Frances, who lives in Ballymena, is one of the five inspiring individuals who helped set Dementia NI up in 2015 as a place for local people with dementia to come together and provide peer support to one another, as well as push for improvements in dementia services and policy.
Here, Frances talks about what inspired her and the other Founders to set up the charity and how she lives well with dementia...
Hello Frances. Why did you originally decide to set up Dementia NI along with the other founders?
After being diagnosed [with frontal lobe dementia], I was invited to a local dementia support group. Many of the people there were in the later stages of dementia and I just felt that there could be more for those whose dementia wasn't so advanced. When I met John [McErlane - also a founder of Dementia NI], it was great to find someone with a similar outlook. Along with the other founders, we decided to set up the charity. We went from one meeting to another and our peer support service came in along the way which has been tremendous.
What makes Dementia NI's peer support service so valuable?
Our peer support service goes a long way to helping a person with dementia out. When you're first diagnosed, you probably don't have an understanding of what dementia is all about and what people are capable of and the different stages. I had no idea that I could lead a good quality of life, live well and get so much support from other people with dementia. The fact that Dementia NI can provide that is wonderful.
What is the biggest misconception people have about dementia?
That you can't be happy. I am very happy with my situation. I have achieved so much and been so independent and led such a normal life. But I don’t sit at home doing nothing. I have to battle on and do what I can. I try not let it get me down and I work hard.
What helps you to live well?
I'm involved in a social organisation called Inner Wheel. It has really opened my life up. I've been involved since the mid-1980s. I help to organise charity events with Inner Wheel so I have a lot of Zoom meetings! I have good online skills but I can't concentrate as well as I used to when I'm reading and I don’t like writing. I was diagnosed with frontal lobe dementia and it affects me in that way. However, I still have a lot of drive and love to keep occupied so when I'm not in my Zoom meetings I'll be doing sudoku puzzles or something else to keep me busy.
There is so much excitement in my family life. I have two great-grandchildren and two on the way! I have very close family which means so much. They don’t live far from me and I see a lot of them.
What initiatives are you most proud to have been involved in at Dementia NI?
The Herbert Protocol initiative [launched with the PSNI to help people with dementia stay safe] is fantastic. I'm proud to be helping to get word out there about it. It will make me and other people with dementia feel more reassured about going out and about and being independent.
It was a big achievement when some of our members met with the Health Minister Robin Swann in 2021 to advise him on improvements to services around dementia. But really I'm most proud of the great peer support and friendship Dementia NI members offer one another.
How do you deal with the stigma around dementia?
I try to stay positive and not let it get to me. I've always been a positive person in my personality. I feel it's important and it has given me such a boost over the years. I just don't see the point in doom and gloom.
My daughter says, "Mummy we never thought you'd be this good after ten years with dementia." They cant believe how capable I am of looking after myself. It's very encouraging to them.
What would you say to someone who has just received a diagnosis?
Of course it’s a big blow. But I would continue getting out there. Don't take it lying down. Do what you can, while you can. Sometimes when people are diagnosed they don't want anyone to know. I respect that and each person has to decide when it's the right time to tell their friends and family. But there are huge benefits in opening up.
On the day of my diagnosis I had arranged to meet some friends. I could've cancelled but I met up with them anyway and told them about my diagnosis. I didn’t hold back. I just didn’t see the point in hiding it. They have never put me down, they treat me as normal. People are often afraid their friends will stop including them in plans but I have never found that.
Do you have any advice on how others should treat people with dementia?
Treat people with dementia as normal and help them in any way that they require. If the public would help rather than be stand-offish people’s lives would be so much easier. We are people just like any other but happen to live with a condition through no fault of our own.
What does being a founding member of Dementia NI mean to you?
I cant believe Dementia NI has come on so well and achieved so much now. Hopefully it will go on to even bigger things. If I have benefited even one person by helping to set it up I have no regrets!
I really appreciate that lasting support into the future that Dementia NI offers. As members, we're all battling through with so many concerns and the time together is so special. When we get to meet face-to-face it is such a boost. I am looking forward to many more face-to-face meetings in future.
Thank you to Frances for sharing her story.
Interested in starting your journey with us? As a member, you can get involved in Dementia NI's work to make sure that everyone experiencing dementia is treated with respect. There's no pressure to do anything, but if you are keen to take action we'll empower and support you every step of the way. Read more here.