Member showcase: Young Onset Dementia Group, Liverpool
A face to face group meeting monthly in the city centre of Liverpool offering peer support, information and fun, run by Together in Dementia Everyday (tide) and Alzheimer’s Society.
In 2024, tide talked to health and social care partners in Liverpool, people with dementia and carers to discuss the particular needs of people with young onset dementia and how these were being met. The answer was – “not very well – everything is geared towards older people.” Apart from a monthly group run by Merseycare NHS Trust in the Sedgemoor dementia hub, there did not seem anything else specifically for younger people and their family members. Everyone agreed more was needed, so tide applied for a grant from the Dementia Trust to get things going.
Slow beginnings, but strong growth
We had two people at our first meeting in April 2025 but the numbers have slowly grown. Initially we were attracting people already connected through the Sedgemoor group, but more recently we have welcomed people who are not part of other networks and are hopeful that this trend will continue as information about the group is shared more widely.
We now have 19 members, including people from the Wirral and Sefton – two neighbouring boroughs where there is a similar lack of facilities specifically for younger people and carers – as the venue is easy for them to get to.
What do we do?
We talk about lots of things – often not dementia-related. People enjoy the relaxed and informal atmosphere and we always manage to have a laugh; one person said, “It’s great that we don’t have to explain ourselves – everyone understands”. We provide our own refreshments (including fabulous biscuits). We share web links of podcasts or apps that members have found useful.
In August 2025, the deputy chief executive of the city council came to meet us with the commissioning manager for social care, at her request, because she wanted to hear what mattered to people. We prepared an agenda the previous month and had productive and positive discussions. They both took items away to follow up and made notes to inform their thinking about how to improve the current offer for younger people with dementia and carers. Money is tight, but they recognise that more needs to be done.
What next?
It’s clear from what people tell us that many professionals know little about young onset dementia or even that dementia can affect younger people. So the group is helping tide to develop a staff training package to raise awareness and understanding, which we will be piloting this autumn. We are also creating an on-line workshop in our Carers Development Programme specifically for carers of people with young onset dementia, again with the help of the group.
Now that we have confirmed the need for and value of peer support groups for younger people and carers, we are seeking further funding for the longer term. The group is keen to carry on and attract new people, so they can support each other.
If you live in Merseyside, received your diagnosis before the age of 65 and are able to travel into Liverpool city centre, or are a family member of a younger person living with dementia, you are welcome to join us. The group meets monthly at Liverpool Central Library, William Brown Street, L3 8EW. Dates and times of the meetings can be found on this flyer.
Contact Ruth Eley for further information at carers@tidecarers.org.uk or on 07786 979997.