RDS Champions is a volunteering scheme that harnesses the extraordinary energy, passion and commitment of current and past RDS members and their family and friends to support others, raise awareness and educate professionals.
The background
Many of our members describe their journey to diagnosis as lasting several years. We know that for some people, an accurate diagnosis is never made, due to a wide range of factors, including a lack of awareness about rare dementia and a lack of access to appropriate services. Accessing suitable care providers who understand what it means to live with a rare dementia diagnosis can pose significant challenges too.
Raising awareness of rare dementia is important for all of us, alongside educating and supporting people to bring about positive changes in understanding and attitudes.
As part of our remit to provide support for people living with a rare dementia diagnosis, we believe we have a responsibility to address these issues.
Our response
RDS has always had a key focus of working with RDS members – we value the vast experiences people share with us and we know that no two journeys are the same. Funded by a generous grant from the Kirby Laing Foundation we have devised the RDS Champions programme – a supported volunteering initiative for RDS members. RDS champions are ambassadors for RDS working alongside the RDS team to share a wealth of knowledge and lived experience. Whatever the role we are hugely grateful to everyone who joins us as an RDS Champion.
What kind of things do RDS Champions do?
Equipped with resources and support from RDS staff, our Champions volunteer their time for one or more of the Champions volunteer roles which include:
- Talking to community groups to increase awareness (become an RDS Cascader).
- Helping out at RDS meetings and events
- Contributing to press articles, radio or television interviews
- Commenting on factsheets and other resources to help improve accessibility.
- Getting involved in fundraising for RDS
- Shaping and participating in research
The roles require different levels of involvement and commitment. The Champion lead [ a member of staff at RDS] works with volunteer Champions to find a mutually agreed appropriate role.
What we hope to achieve through the RDS Champions programme:
By raising awareness of rare dementia amongst:
- Community and faith groups
- Health, social care & care home staff teams
- People from minoritized groups
- People at risk, concerned about cognition or with a generic ‘dementia unspecified’ diagnosis
- Policy makers & those in a position to effect change
We hope to achieve:
- More public and professional awareness of different types of dementia
- Growing membership, continuity of involvement in RDS community, and sustainability of services
- New regional RDS groups and local/national partnerships
- New innovative support services and research projects co-designed by those with a lived experience of dementia.
We trust that RDS Champions will enjoy a sense of contributing and accomplishment, whilst engaging in activities that will bridge gaps in understanding and awareness about rare dementias, widen access to RDS services and strengthen the RDS community.
For more information:
Click here for more information about the Champions scheme.
For more information about ways to get involved as a volunteer RDS Champion please email contact@raredementiasupport.org
To request a visit and a presentation from an RDS Cascader, please email contact@raredementiasupport.org
