Our charity partner, which supports those affected by early-onset dementia, has recently launched their Network.

Receiving a diagnosis of dementia can be a confusing, worrying and even scary business, and having a community around you who can provide support is vital. But for those affected by early or young onset dementia, this can be tricky.

Friends, employers and even family can struggle to understand how someone can develop a condition which is traditionally seen as an “old person’s disease”. However, the reality is that over 40,000 people in the UK have early onset (that is, a type of dementia developed before the age of 65) although the figures could be higher because of difficulties diagnosing it.

Plus, that doesn’t take into account the many other people that young dementia will touch, including friends, family and professionals trying to provide support. For example, the children of someone with young onset dementia may struggle after diagnosis because many of their peers are unlikely to be similarly affected, and may not understand the many challenges a diagnosis can bring.

It’s why YoungDementia UK have set up a Network which people affected can join, with the aims of:

-    Providing opportunities for members to share experience, knowledge and to learn from each other.
-    Encouraging improved young onset services across the UK and influence and inform national and local policies.

Tessa Gutteridge, Director of YoungDementia UK said,

‘We know first-hand the impact of dementia on younger people and their families and how isolating it can be. We believe that everyone affected should be well informed, feel connected to others and enabled to live life to the full.

‘So we are creating a Network. A community that includes people living with young onset dementia, their family and friends, as well as organisations and professionals who work in the fields of dementia and social care.’

The charity has created a special video where people affected by young onset explain why the Network will be so important.

‘I want to be part of a network that helps raise awareness of teenagers who are affected by dementia and help them get the support and confidence that they deserve,’ says 18-year-old Becky Brown, who has a father with early onset dementia.

‘I just think the whole idea of a network of young people with dementia is so great,’ says Wayne, who is living with young onset dementia. ‘You need people out there who know what you’re going through and having this link and putting everybody together will be so great. It will make a powerful team.’

Sarah, whose father was diagnosed young onset dementia nine ago says:

‘Being part of this network has introduced me to some really incredible, positive and inspiring people. Just knowing there are people out there who are fighting your corner just makes a world of difference.’

The Network was launched at the end of September during their Young Onset Dementia: Different Impact, Positive Solutions Conference.

Watch the video below for more information and click this link to join the network.

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