Young-onset dementia is dementia diagnosed before the age of 65, sometimes affecting people as young as 30. It is estimated that more than 70,000 people in the UK are living with young-onset dementia, although the true figure is likely to be much higher because it is still not accurately recorded.
For those diagnosed, the challenges are very different from those faced by older people with dementia. Many are still working, paying a mortgage and supporting families.
Karen Thomas, Head of Young Onset Dementia at Dementia Forward, a North Yorkshire charity supporting more than 5,500 families living with dementia, explains how the charity has become a leading light in young onset dementia care and support.
‘Dementia Forward was established in 2012 to provide flexible, community-based support for all, but it was one family’s experience that transformed our understanding of young-onset dementia.
‘A husband approached us after his wife, aged just 50, lost access to the day service she had relied upon. The alternative offered was a windowless room in a hospital where people spent the day sitting in armchairs.
‘His wife had been a swimming teacher. She loved the outdoors, was physically active and wanted purpose and companionship. We knew there had to be another way, and this is how Time Out Together, our outward-bound young onset groups, were born – instead of armchairs and hospital food, we offered walking boots and packed lunches.
‘Today, these groups, currently funded by the National Lottery Community Fund, enjoy walking, climbing, cycling, visiting museums, volunteering and taking part in outdoor activities that maintain confidence, friendships and wellbeing. Carers benefit from valuable respite and an opportunity to build their own support networks.’
For subject names please contact info@toucan-productions.co.uk or GSKIMPACTAwards@gsk.comHowever valuable this service has been for people living with young-onset dementia, Dementia Forward soon realised that supporting wellbeing was only one aspect of what needed to change for younger people with dementia. They realised that the accepted figures were significantly underestimated. The data suggested there were 170 people affected across North Yorkshire. Today, Dementia Forward actively supports more than 446 people with young-onset dementia, and these are just the ones they are aware of and who are accessing their support.
The needs of Dementia Forward’s clients are established in an initial home support visit. The charity then works in collaboration with community organisations and health and social care teams to create specialist services and raise awareness. Alongside the lack of age-appropriate community support, families face unique challenges, including loss of employment and income, so Dementia Forward developed specialist YO Dementia Support Advisors to provide bespoke advice and information. There are limited respite and residential care options designed for younger people, and this led to Dementia Forward working closely with their first care home to develop specialist young-onset dementia care, and the team is now using this learning to deliver training for other care providers.
As CEO of Dementia Forward, Jill Quinn explains, ‘we are sharing what we have learned so that others do not have to start from scratch. One of the biggest gaps we identified is the lack of specialist training for care providers.
‘People with young-onset dementia have different needs, different expectations and often very different lifestyles from older residents. Supporting them well requires confidence, understanding and practical approaches that differ to traditional dementia care. Too often, behaviours caused by distress or unsuitable environments are misunderstood, resulting in unnecessary hospital admissions or inappropriate mental health placements.’
To ensure this training can be delivered across the UK, Dementia Forward is working with training provider Able Training to increase their reach. The training draws on over a decade of frontline experience and innovative young onset services and provides insight into how symptoms may present, the specific challenges faced by younger people, and offers practical strategies to improve wellbeing and encourage age-appropriate activity.
For more information, visit www.dementiaforward.org.uk or email info@dementiaforward.org.uk.