When I was diagnosed with dementia aged 63, I told my sons who were great and helped me through the initial shock. But when I sat down on my own and tried to come to terms with it, there was so much stuff going through my head. All I could think was ‘I don’t want to end up in a home’. Three of my sisters had been diagnosed with dementia before me and they had gone to live in care homes but I knew that wouldn’t be right for me.
I had begun attending a day centre in Belfast and although I appreciated the support they offered, I had decided to leave because the people there were much more advanced in their dementia than I was. I was feeling very down about it and ended up telling a lady from the charity Age NI, who provide me with practical support during the week, to see if she could help. That conversation led me to my first Dementia NI Empowerment Group.
The first time I went to a Dementia NI Empowerment meeting in Belfast City Centre, I didn't know what to expect and felt a wee bit nervous. What waited for me in that room was a pleasant surprise. Ashleigh from Dementia NI, who led the Group, put me at ease right away. There were six or seven people with dementia there and she asked everyone to introduce themselves one-by-one then started the craic going! Within ten minutes, I felt completely at home.
It was refreshing to be in a room of people who knew exactly what I was going through because they were going through the same thing. I didn't need to justify or explain why I was doing certain things. If I'd left the taps or the kettle on in the house that week, I could talk about it and they would understand. They spoke my language and I felt supported.
I left that first meeting feeling uplifted! I had spoken to people who had given me a new outlook on life and made me see that I could carry on and have a good life. It gave me a reason to keep going.
Years later, I am still attending the Groups. Through Dementia NI, I have done things I never thought I would do, like making speeches to raise awareness of dementia, and I've made some great friends. Dementia NI members also have their own Facebook group. At the touch of a button, I can contact a group of people who can instantly provide a feeling of support and understanding.
Peer support has played a huge part in coming to terms with my diagnosis. If you're having difficulties, someone in the Group will offer you support. Then you can pass that kindness on and help someone else by just talking and listening to them. Supporting someone through their journey can make you feel stronger. Everyone can benefit from peer support.
I know that it can be nerve-wracking when you first go to a Group so I always try to make new members feel at ease. It has helped me to keep enjoying life and has introduced me to some fantastic people. I am glad I attended a Dementia NI Empowerment Group. I highly recommend getting the courage to walk through the door.
About our Empowerment Groups:
Our Empowerment Lead Hazel Haworth says, "Peer support brings together people with shared experiences to support one another. Peer support for local people living with dementia is an important aspect of Dementia NI’s Empowerment Groups. These are hosted by a member of staff but are specifically for local people with dementia. Group members support each other with friendship and understanding, particularly after diagnosis. It gives people with dementia the chance to join others in the same boat and learn from their experiences."
- Access to groups. Anyone in NI with a diagnosis of dementia can gain access to their local Empowerment Group after signing up for Dementia NI membership. If you live with a diagnosis of dementia and are interested in becoming a Dementia NI member, please call us on 028 96 931 555.
- Where the groups are located. We've established Dementia Empowerment Groups throughout Northern Ireland in every Health and Social Care Trust area.
- What we do together. As well as providing peer support, we regularly host visitors who ask for members' opinions on topics related to dementia. Dementia NI members have the power to influence and change what happens in their world, whether at home or in the wider community.
- Positive benefits. Our members tell us the Groups give them the opportunity to make new friends, feel less isolated and be part of their community. It helps them regain confidence and lost self-esteem following a diagnosis. The Groups provide the opportunity for members to have their own space and voice their opinions which can help them feel valued, respected and listened to.
About our In The Same Boat service:
Following a diagnosis, many people with dementia find it helps to talk to someone who has also received a diagnosis and may have experienced similar challenges. Our ‘In the Same Boat’ specialist support is a way of offering appropriate support when people recently diagnosed are ready to talk. A person recently diagnosed is put in touch with a Dementia NI member, allowing them to share experiences with someone who has experienced similar issues which can help them to feel understood and access further support.