I now know why I have dementia, we need a voice from this side to be able to say it as it is, not what people think it is.
- Tommy, diagnosed at 58 with young onset Alzheimer's disease
Nothing about us, without us
Most people are unfamiliar with the specific needs and issues faced by those with young onset dementia. It is important therefore that your needs are included in projects, policies and campaigns that shape dementia services and it is vital that you are involved in decisions that affect you.
Young Dementia Network
The Young Dementia Network is a collaboration between individuals and organisations with the aim of connecting and improving the experiences of those affected by young onset dementia. The Young Dementia Network is a YoungDementia UK initiative.
3 Nations Dementia Working Group
The 3 Nations Dementia Working Group is run by people who have dementia across England, Wales and Northern Ireland who work to raise awareness, reduce stigma and influence public policy. They aim to contribute to the work of professionals and policy makers working in this and related areas, and to the improvement of the lives of those living with dementia, and those who support them.
Dementia Action Alliance
The Dementia Action Alliance is a movement with one simple aim: to bring about a society-wide response to dementia. It encourages and supports communities and organisations across England to take practical actions to enable people to live well with dementia and reduce the risk of costly crisis intervention.
Dementia Engagement and Empowerment Project (DEEP)
DEEP supports and promotes projects led by or actively involving people with dementia. The group’s aims are to influence services and policies affecting people’s lives. DEEP is a collaboration between the Mental Health Foundation, Innovations in Dementia, supported by the Alzheimer’s Society and funded by the Joseph Rowntree Foundation. Find a group near you here.
Dementia NI aims to challenge the stigma of having a diagnosis by raising awareness about dementia and promote the rights of people living with dementia to influence policy, practice and service delivery across Northern Ireland. They also provide training, education and awareness to organisations and the public on how to live well with dementia and support people living with dementia to lobby and raise awareness of dementia in their own right.
Scottish Dementia Working Group (SDWG)
SDWG is a national campaigning group, run by people with dementia. The group is the independent voice of people with dementia within Alzheimer Scotland. It campaigns to improve services for people with dementia and to improve services for people with dementia and to improve attitudes towards people with dementia.
tide (Together in dementia everyday)
tide, ‘together in dementia everyday’, is an involvement network that recognises family carers of people with dementia are experts by experience, experts that can play a significant role in supporting other carers, influencing policy and shaping improved responsive local commissioned services.
Alzheimer's Australia's Dementia Advisory Committee
The Alzheimer’s Australia’s Dementia Advisory Group aims to determine the priorities of people with dementia, contribute to policy and advocacy work, promote dialogue between those with dementia and service providers with a view to promoting a better understanding of their social and care needs, and assist in refining and evaluating Alzheimer’s Australia’s national programmes.
Dementia Alliance International
Dementia Alliance International is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease.
European Working Group of People with Dementia
The European Working Group of People with Dementia is composed of people with dementia. They work to ensure that the activities, projects and meetings of Alzheimer Europe duly reflect the priorities and views of people with dementia.
The Global Alzheimer's & Dementia Action Alliance
The Global Alzheimer’s & Dementia Action Alliance (GADAA) is an international network of civil society organisations seeking to champion global action on dementia.
There are projects you can become involved in nationally and internationally. If you would like to add a project to our list, please email us.