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 Dunne, diagnosed at 58 with young onset Alzheimer’s disease

Influencing and activism

Nothing about us, without us

Most people are unfamiliar with the specific needs and issues faced by people affected by young onset dementia and their families. It is important therefore that their needs are included in projects, policies and campaigns that shape dementia services and it is vital that they are involved in decisions that affect them. 

Below is a list of other organisations who bring together people affected by dementia of all ages to raise awareness of the condition, influence policy and challenge stigma.

 National 

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 Engagement and Empowerment Project (DEEP) 
DEEP is a network of groups of people with dementia all across the UK. There are around 80 groups, and DEEP connects them together to share their experience, and to support each other. Some groups come together for support and friendship, but many become involved in campaigning and awareness raising about dementia.  

Dementia NI 
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. 

International

Dementia Australia Advisory Committee 

The Dementia Australia Advisory Committee provides a national platform for people living with dementia to advocate alongside Dementia Australia on matters important to them. 

Dementia Alliance International 

Dementia Alliance International is a non-profit group of people with dementia from around the world that seek to represent, support, and educate others living with the condition. 

 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