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Dementia NI is a unique and dynamic local charity, dedicated to empowering people with a diagnosis to live well and drive positive change in dementia services and policy. We've been helping to change the lives of more and more local people living with dementia, with your support, for over nine years.

How our charity began

Dementia NI was founded in 2015 by five people living with a diagnosis of dementia to enable them to have their voices heard and improve dementia services for themselves and others.

It was the vision, drive, skills and knowledge of those five founding members that helped to shape the organisation we are today.

This original group of members shared a core belief that people with dementia should have an active involvement in decisions that affect their own lives and should feel empowered to express their views and concerns, to ensure they live well and retain their independence for as long as possible.

They also wanted to raise awareness of what dementia is and challenge the stigma they face on a daily basis, which is the result of people's lack of understanding and negative perceptions of the condition.

They felt that too often the voice of the person with dementia was not being heard and due to the stigma of a diagnosis, people were even afraid to talk to them.

They believed that work is needed when it comes to the language used when talking about dementia - preferring empowering terms such as 'a person living with dementia' instead of negative terms like 'dementia sufferer'.

When the first Empowerment Group was established, in which people with dementia provided peer support to one another, they realised there were many others out there who needed the same support.

Dementia NI Founding Members Frances Cousley and John McErlane
Visit our Stories section to read more about the fantastic work of our founding members Frances Cousley and John McErlane

2015

In its founding year, Dementia NI secured time-limited funding from Atlantic Philanthropies (£300,000) 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. These provided an opportunity for people to come together in their own communities and share their experiences, skills, have their voices heard, and provide peer support to one another. The pilot was hugely successful and helped to lay strong foundations for the organisation we have today.

2017

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.

2019

In 2019, the charity was successful in securing a 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.

2020s

Since then, Dementia NI has grown into a leading dementia charity in Northern Ireland with around 100 members, all of whom are living well with dementia. We provide valuable peer support all across Northern Ireland for those with dementia through our Empowerment Groups. We also press for changes to current policy and services around dementia on a national level.

People with dementia are, and always will be, at the heart of the organisation. We are committed to our vision - a society where everyone with dementia is empowered to live well and feels valued and included.