Why Peer Support Matters for families affected by Young Onset Dementia
Parallel 2
17 November, 2026 3:20 – 4:30 pmYoung Onset Dementia (1)
Catherine Kiely is the Young Dementia Network Coordinator at Dementia UK. After a 16 year career in clinical research, she moved into the charity sector following her family’s experience of supporting her Dad, who was diagnosed with young onset frontotemporal dementia.
This personal experience continues to shape Catherine’s work and fuels her commitment to improving support for people affected by young onset dementia. Catherine is passionate about raising awareness of the unique challenges families face and about championing more understanding, connection and age-appropriate support.
Former carer for my mom who lived with young onset Alzheimer’s disease for nine years and now myself a person living with young onset Alzheimer’s disease giving me a view from both sides, a unique position.
A Research Network volunteer and a member of the Policy, Research and Communications Committee for the Alzheimer’s Society. Member of the Novo Nordisk Advisory Board for people living with dementia; Experts by Experience Group for dementia; Brains for Dementia Advisory Board for Alzheimer’s Research UK; Young Dementia Network steering group member; Quality and Safety Board for NHS.
Former Project and Technical Manager for a global electrical and electronic cable designer and manufacturer.
Changing the view of dementia in all its types and how people live with dementia is now a passion of mine, while I can still do so.
Michael Booth
Young Dementia Network Steering Group member, living with young onset dementia
Former carer for my mom who lived with young onset Alzheimer’s disease for nine years and now myself a person living with young onset Alzheimer’s disease giving me a view from both sides, a unique position.
A Research Network volunteer and a member of the Policy, Research and Communications Committee for the Alzheimer’s Society. Member of the Novo Nordisk Advisory Board for people living with dementia; Experts by Experience Group for dementia; Brains for Dementia Advisory Board for Alzheimer’s Research UK; Young Dementia Network steering group member; Quality and Safety Board for NHS.
Former Project and Technical Manager for a global electrical and electronic cable designer and manufacturer.
Changing the view of dementia in all its types and how people live with dementia is now a passion of mine, while I can still do so.
Summary
Peer support can play a vital role in helping people affected by young onset dementia feel understood, connected and less isolated, yet little is known about how well current provision meets their needs. To explore this, the Young Dementia Network carried out a four week survey of people living with young onset dementia, family members and friends.
A total of 168 responses were received. Findings showed clear benefits for those accessing peer support, including connection, shared experience, practical advice and reduced loneliness. However, significant gaps in provision were also identified. Many respondents were unaware of local support, while others found that existing groups did not fit around work, caring responsibilities or school hours. Lack of age-appropriate support was a recurring theme, including limited support for children and young people affected by a parent’s diagnosis.
This presentation will share the findings and argue for peer support to be a core part of post-diagnostic support.