Dementia NI, based in Belfast, is a local member led charity formed in 2015 by five individuals living with a diagnosis of dementia. It was their vision, motivation, drive, skills and knowledge which helped to form the organisation.
We promote the right for people living with dementia to be involved in decisions that affect their everyday lives. By raising awareness, we challenge the stigma of having a diagnosis and offer support to others who are in the same boat and living with the symptoms.
Dementia NI was set up by people with dementia to enable them to have their voices heard and improve services for themselves and others. They felt that too often the voice of the person with dementia was not being heard and due to that stigma, people were sometimes even afraid to talk to them. The original group also wanted to raise awareness about what dementia is and to challenge the stigma they have to face on a daily basis, even simple things like the phrases used – NOT "dementia sufferer" and instead a person living with dementia.
When the first empowerment group was established, they realised that there were many others out there who needed the same support. People with dementia are at the core of this organisation and the founding member John being Co-Chair on the Board of Directors.
In 2015, Dementia NI secured time-limited funding from Atlantic Philanthropies (£300,000) and the purpose of this investment was to help develop a small number of self-directed peer support empowerment groups and to employ a staff team to support them for three years. The principal remit at the time was feeding into consultations and lobbying.
During the following three years a number of groups were established across Northern Ireland for people living with dementia providing an opportunity for people to come together in their own community and share their experiences, skills, have their voices heard, and provide peer support to each other. The pilot was hugely successful and helped to lay strong foundations for the organisation we have today.
In 2017, the charity received a generous legacy that the organisation invested in development strategies to ensure the foundations for Dementia NI were secure while enabling the dedicated staff team to continue to build the charity with the support of the members, volunteers, and Board of Trustees.
In 2019, the charity was successful in securing a four-year funding package of £458,000 from the National Lottery Community Fund to continue the Empower and Support project with the addition of a new In the Same Boat telephone support line for, and by, people living with dementia.
In early 2020, Dementia NI launched its new three-year Strategy, with a revised Vision and Mission.
People with dementia are, and always will be, at the heart of the organisation. We want to work together to ensure that people with dementia are empowered to make their own decisions, have their voices heard, are listened to, and have the opportunity to live well with the right support from the point of diagnosis throughout their dementia journey.