A south east London charity has challenged the misconception that only elderly people are affected by dementia with its Dementia Action Week.
South East London Mind’s event included a screening of a short documentary featuring Young Onset Dementia Activists (YODA) members and created a safe space for the group to talk about their experiences with the mayor.
One of the biggest problems with young onset dementia is the support available is limited and often not age-appropriate – including failure to understand the impact of being affected during their prime working years, which creates financial problems plus emotional devastation for young children.
Dave, who cares for his wife Kerry, said: “The fallout for families is catastrophic. It strikes young prime working years, instantly plunging households into financial ruin.
“Spouses are forced to quit their jobs and to become full-time carers.
“Meanwhile, their teenage children are left navigating the heart ache of decline of a parent without a single shred of youth-targeted psychological support”.
Change the Story, a YODA group, brings together south east London residents, who are diagnosed as young as 41, and their carers, and is run entirely through donations.
The session included many more powerful stories which reflected a wider pattern of families impacted by young onset dementia, and a need for better understanding and support systems.
The event was attended by Bromley mayor, Councillor Christine Harris, who gave assurances the borough council will be finding out more about the support they currently offer for families.
She said: “The families here need to keep up with bills, mortgages and jobs and often do not have a pension coming in as older people do.
“The work done by YODA is fantastic – every person I’ve spoken to has shown me the lifeline it is”.
For many YODA members, this event was the first time they have been able to share their difficult stories with a civic leader, which created a powerful but emotional room.
The group hopes this will mark the beginning of a stronger partnership with the council, and a renewed push for better services designed for young onset families.
Dave said: “Dementia doesn’t care about retirement age, and our care system cannot afford to either.
“Let us stop abandoning these families, let us build a care system that gives them the dignity they deserve”.
South East London Mind is a local mental health and dementia charity providing on-the-ground services across Bromley, Greenwich Lambeth, Lewisham and Southwark.
Visit the group’s website for more information on the services they provide.
Feature image: South East London Mind
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