Get Involved
We aim to embed lived experience in every aspect of our work – whether through existing networks or as part of specific projects – ensuring that people affected by dementia shape the decisions that impact them. Our governance structure includes individuals with lived experience, including people living with dementia and their carers, who contribute vital insights to our programme.
In June 2022, we hosted a hybrid event titled “Living well with dementia in Greater Manchester: join us, we need each other”, in partnership with the Alzheimer’s Society, carers, people with lived experience, key partners and the International Longevity Centre, supported by Roche. Co-produced with people affected by dementia, the event centred their voices in both planning and delivery. The day’s success was made possible by their leadership and input, before and during the event read our event evaluation report here.
Building on this commitment, Dementia United worked with people with lived experience and community-based initiatives to explore how to support people and families to live well with dementia. In partnership with Live Well – Greater Manchester’s movement for community-led health and wellbeing – we co-designed a vision for a new “Live Well” offer.
This work brought together a diverse group of individuals, including those living with dementia, carers, and community organisations. The first in-person workshop took place on Tuesday 4 June 2024, where participants shared their experiences, ideas, and insights. Their contributions shaped a draft offer, which was then refined at a follow-up online workshop in early July 2024.
The outcome of the workshops was a shared vision: One Dementia Support System for All: a system that is easy to access, well-connected, and empowers people to live the lives they choose in a place they call home. The Live Well offer includes four key elements: a Dementia Hub for coordinated information and support; a Live Well Dementia Network that connects services, people, and communities; Dementia-Friendly Communities where individuals feel safe, supported and valued; and Someone by Your Side – Dementia Navigator, a trusted guide to walk alongside people throughout their dementia journey.
We are committed to shaping a system that reflects the real-life needs of people affected by dementia, built on partnership, inclusion, and community strengths.
How You Can Get Involved
We always welcome new members with lived experience of dementia. Whether you are living with dementia, a carer, or a former carer – your voice matters. You can contribute at your own pace: from simply staying informed about what we do, to co-producing work and helping drive real strategic change in the system.
Dementia Carers Expert Reference Group
Our Dementia Carers Expert Reference Group (DCERG) was set up in 2018. The DCERG consists of a group of current and former carers of people with dementia who are passionate about improving the lives of carers of people living with dementia and those they care for across all Greater Manchester. Read more
Living with Dementia Group
We consider you an expert by experience. We know that you are in the best position to advise NHS Greater Manchester Integrated Care on the needs of people living with dementia. Living with Dementia Group members get involved with and influence our entire programme. Living with Dementia Group members are equal partners in Dementia United’s leadership structure. They are also represented at our Steering and Task & Finish Groups, and on multiple additional projects. Read more
Amal Morsi
amal.morsi1@nhs.net
Phone 07917 511678
Together, we can make Greater Manchester a place where everyone affected by dementia can live well.