About Know Dementia
We can help you by providing:
- Telephone support
- Time to talk
- Social activities at community events
- An opportunity to meet others in the same position as you
- Signposting to financial advice and care provision
- Advice on how to cope with the diagnosis
- Help to set up a Dementia friendly community
Know Dementia is a small Sussex-based, registered charity founded in 2012 with the purpose of supporting local people, and their family members, who are living with Dementia. Receiving a diagnosis of Dementia is understandably a devastating blow to anyone, however we are here to help families navigate the journey and live life as fully as possible in the circumstances. The key to our work is to support the whole person and their loved ones and not just their medical condition.
How We Got Started
In 2006 two of our Trustees, Alex and Jennie, helped their son and daughter-in-law set up a Domiciliary Care agency in West Sussex but soon discovered there was no help in the community for families affected by dementia, in the area.
Jennie’s father also had vascular and Alzheimer’s dementia and lived at home with them. As an ex-nurse, having worked in the old asylums, Jennie was aware of the need for help and support for families.
Several family carers, with Alex and Jennie, realised in 2012 that probably the best way to help families would be to set up a small charity that could provide this type of support. Prior to registration with the Charity Commission, they all went on a training course in Brighton in order to familiarise themselves with what was required and went on to set up the charity later in 2012.
In October 2013 Know Dementia was finally registered with the Charity Commission. In the summer of 2014 their first Memory Moments Café was opened by the local MP Nick Herbert in Henfield. Not long after they then opened a weekly Sporting Moments Group in Southwater, now based in Dial Post.
The Golden Ticket
In 2015 Know Dementia ran two workshops at the National Dementia Conference in Brighton, one was presented by people with dementia and the other by family carers. Little did we know that the NHS Commissioning team for High Weald Lewes and Havens were sat in the audience. The Manager contacted us after the event and invited us to join a working group looking at the Dementia pathway for families in their area. As Jennie had already worked with the NHS on developing a pathway in West Sussex we were more than happy to share our knowledge.
The Golden Ticket was developed and Jennie and Alex initially acted as Golden Ticket Guides with 20 patients each, providing support and guidance during the trial period. Part of the Golden Ticket support was a weekly community “café” for those diagnosed and their carers. Know Dementia took on the role of coordinators for these cafés which became known as our Memory Moments Cafés. They were initially opened in a few areas and over the next 7 years we have opened up 10 weekly Memory Moments Cafés in East Sussex, one Woodland Moments and one Brainwaves choir.
These community events support families across the whole of East Sussex and the Dementia Support team, from East Sussex Council, play an important part in referring families to us.
Know Dementia also provide workshops for GP surgeries as well as designing and producing leaflets advising families who have just been diagnosed and who need some easy tips.
In West Sussex we now have Sporting Moments, 7 Memory Moments Cafés and 1 Brainwaves choir. These events are either monthly or fortnightly dependent on funding.
We continue to be committed to providing advice, support and education for families affected by a diagnosis as well as provide these services to organisations and businesses across the whole of Sussex.
We are proud in what we have achieved in the past twelve years as we are of all the staff who work with us to provide a brilliant service to all who need us.
Become a Volunteer Today
Have you got a few hours free each week that you’d like to fill with something enjoyable, meaningful and interesting?
Our weekly Memory Moments Cafés, held in towns and villages throughout Sussex, and our other community events, are run by the Know Dementia Café Co-ordinators along with our wonderful volunteers. Find our more about how you can get involved in your local community café or event, by getting in touch today.