Perhaps you thought “dementia is something that happens to old people”. Sure, most people who live with dementia are over 65, but not everyone. There are thousands of under 65s in London who live with a form of dementia. Young people, living young lives.
The London Assembly Health Committee recently met some of the people enjoying active and meaningful lives, whilst living with dementia. What was even more inspirational was their youth.
Let’s face it, a younger person’s life is different from the life of someone over 65. Over 65 you are likely to be retired and your children grown up.. A dementia diagnosis is worrying enough as a pensioner, but can you imagine going to work the next day, or having to go and pick up the kids from school afterwards?
Of course, this is exactly what people with young onset dementia do. Your life doesn’t end with the diagnosis. It changes, and yes, it might get harder. But harder just means we need to support better.
Right now, we don’t offer enough support. There are very few dedicated services for people with young onset dementia in London. There are pockets of good practice around, and we heard about magnificent work from places like the Merton Dementia Hub, St George’s Hospital in Tooting, and the UCL Dementia Institute. But it is so patchy, and so poorly signposted that sometimes even the clinicians don’t know where they can find age appropriate help.
Providing support often falls on the voluntary and community sectors. People want to talk with someone who knows what they are living through, who understands. There are some great peer networks out there, but they are small organisations. It can be hard as smaller organisations to have the capacity to find and get together with other groups, and figure out what works as a collective. This is where the Mayor comes in.
The Mayor is quite rightly setting course for a dementia-friendly London. And as long as he doesn’t also fall into the trap of only thinking about dementia as an issue for older people, then there is real potential for change.
Getting around London is something we all do, and it is key to an independent life. A person with young onset dementia has the same needs and desires as someone without dementia, and will need to take the Tube to work, or cycle to the gym, or take the bus to go and see a movie. So, TfL’s services need to be as accessible as they can be. TfL already does a lot to support people to use public transport, but we need to make sure that people living with young onset dementia are not overlooked.
The Mayor can help in the job market too. Currently, only in five people living with young onset dementia manage to stay in employment after diagnosis. Like so many of the other health issues we explore in the Health Committee, it only takes small adjustments to make working life more accessible. An employee with young onset dementia still has so much to give. The Mayor is working on making work in London healthier through his Good Work Standard and the Healthy Workplace Charter. Young onset dementia needs to be part of this work.
Finally, the Mayor is currently working on his Culture Strategy.Part of that is to make London’s cultural life more relevant and accessible to all Londoners.. Many of London’s smaller cultural spaces are under-appreciated and under-used. We need to encourage these spaces to pioneer a wider range of dementia friendly activities and broaden what community life means.
Now is the time to understand that a dementia diagnosis doesn’t override a person’s identity. It’s not game over. Those living with young onset dementia still have passions, still have lives, and still yearn to be someone. That someone has a tomorrow, not just a yesterday.
Dr Onkar Sahota AM is Chair of the London Assembly Health Committee. You can find the Health Committee young-onset dementia findings here