Young Onset Dementia Support Group

Funding has enabled a safe space for service users with Young Onset Dementia to share their experiences and talk openly about their diagnosis

The team in North Sefton have been able to develop a monthly support group for service users with young onset dementia (YOD)

Ran by experienced nurses, the young-onset dementia group are people who have been diagnosed with dementia before the age of 65. Many of the people who attend the group also have additional diagnoses such as anxiety and depression and have a wide range of needs and cognitive abilities; with two facilitators and help from a local charity, the group has been able to provide person-centred support.

The group allows for younger people with dementia to gain further education and support from each other and is a safe space where people can feel comfortable to talk about difficulties specific to them. They often discuss themes such as social isolation and low mood associated with the struggles of trying to make sense of their experiences.

It has also allowed for the development of community networks and greater access to other community organisations. Occasionally there are guest speakers from voluntary organisations including the local Alzheimer's Society.

The group continues to be regularly well attended and feedback from the group has been consistently positive, particularly with increasing self-confidence.

Activities include memory games, quizzes, and special events. Some members get involved in social research at Liverpool universities, which benefits both academics and service users.

“There is a stigma attached to dementia and people don’t always want to discuss their diagnosis with friends and wider family. At the support group people feel able to share experiences and learn from each other.....the support group also provides a valuable space for people to think about and share with loved ones what they would like to happen in the future. “

Assistant psychologist, Tom Faulkner

Attendees have regularly commented on the value the group has on areas such as self-confidence, anxiety levels and physical well-being. It has allowed service users to meet others in a similar position and newly diagnosed; to develop friendships and supportive relationships. Carers also had the opportunity to meet other carers.

“People with young-onset dementia often do not have access to support that is appropriate to their age and the rarity of their conditions. This can often leave them feeling isolated and stigmatised and subsequently not engaging with health-services. Younger people with dementia (and families) are more likely to reach crisis situations, experience premature residential care placement, and can be over-represented on older adult wards, it has been suggested that a weak social support network is related to this. Currently the need for tailored YOD support is not recognised among national charities, who often only provide generic dementia interventions”