The Young Dementia Thematic Group is a National Alzheimer’s Society group dedicated to individuals living with a diagnosis of young onset dementia.
The group is often described by others living with a diagnosis as a safe place where they can talk to one another and know that they truly understand.
The group focusses on offering opportunities to people affected by dementia to use their personal views, experiences and ideas to help shape the work that the Alzheimer's Society and its partners do. The difficulties and obstacles faced by those living with a diagnosis of young onset vary hugely and are entirely unique- the group recognises this and intends to utilise this to help local and national services better understand how to make positive changes and a real difference. The group also offers elements of peer support in a warm and welcoming environment.
In a nutshell, the group offers people affected by a diagnosis of Young Onset a voice to help make positive and tangible changes across the UK whilst forming new relationships and friendships.
1. The group enables attendees to share their thoughts, views and opinions on a number of topics such as:
2. Developing and shaping government strategy
3. Informing and shaping local strategy
4. Influencing and shaping early onset pathways
5. Supporting local services to develop their young onset services
6. Diagnosis and the dementia journey
7. Post diagnostic support guidance, what this should look like, who should provide what services and crucial elements of providing a quality and effective service
8. New and upcoming technology reviews and guidance
9. Reviewing the impact of the cost of living and what can be done to support people with a diagnosis of young onset
10. Collaborative work and research with University’s across the UK
The group currently meets twice monthly via Zoom, usually on a Thursday from 2-3.30pm. It's a brilliant place to meet people in similar circumstances and can often feel like a safer step than attending face to face groups for people who may experience feelings of anxiety about this.
The group offers fantastic elements of peer support and a number of our members keep in touch outside of sessions and have become good friends. It is a small group with between 4-8 attendees each session.
A diagnosis of young onset dementia, diagnosed before the age of 65
Sessions take place virtually via Zoom.
“Involvement is my way of trying to make it right for others. It helps me to keep moving. When I’m asked back time and time again it makes me feel valued. It gives me a purpose to get out of bed in the morning".
"Being a part of this group has helped to change my life post-diagnosis. There is a point to my life, I can still make a difference. My intellect isn’t as damaged as I had thought".