As a 30-something year old living in Lancashire in the North West of England, Beth has been living with the impact of her mum's diagnosis of early onset FTD (Frontotemporal Dementia) at the age of 65.
For the last year she's been sitting down with a friend and a microphone to go over everything that's happened along the way. Loving someone with FTD is a club nobody wants to be a part of but Beth hopes that talking about it and sharing experiences helps others to feel less alone.
This isn’t meant to be a shiny podcast that gives you all the answers.
For a lot of us, the answers don’t exist - we’re just getting on the best we can.
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This week I’m joined by Sam, whose son Andre was diagnosed with FTD at just 22. Sadly, he passed away at 24.
Andre was a cheeky, lovable rogue with a smile that could get him out of anything. Sam takes us through their journey together, from the first small changes at her wedding to Andre’s rapid decline and his final days in a hospice.
Sam talks openly about:
the first signs, and being told Andre’s scan looked like the brain of a 70-year-old
fighting for support when services didn’t know how to help someone so young
the decision to donate Andre’s brain to research
giving Andre the send-off he deserved, and grieving now that the whirlwind has stopped
setting up Andre’s Moments That Matter CIC, which helps families affected by young-onset dementia make memories together
This episode is a stark reminder that dementia isn’t only a disease of older people.
💛 Find out more about Andre’s Moments That Matter on Facebook and TikTok: https://www.tiktok.com/@andresmomentsthatmatter
🎉 Forever 24 Fest takes place on 3 July 2027 at Dereham Rugby Club in Norfolk, on what would have been Andre’s 26th birthday.
💬 Join the conversation: Instagram @ftdnavigatingthecrap or email ftdnavigatingthecrap@gmail.com (mailto:ftdnavigatingthecrap@gmail.com)
This episode includes discussion of the death of a young person and grief. If you need support, Alzheimer’s Research UK and Alzheimer’s Society are there to help.
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
13 Oct 2026
A Fellow Adventurer: Colin’s Story of Loving Someone with FTD
Last week we heard from Suzi, who is living with FTD. This week her husband, Colin, joins me to share the other side of their story.
Colin and Suzi met in 2007 and married on Christmas Eve 2008. Not long after, Susie was diagnosed with FTD at just 50, and their life together changed overnight.
Colin talks with warmth and humour about:
the early signs, from 2kg bags of jelly beans to buying five TENS machines
the day of Susie’s diagnosis, and why it felt like being strapped into a rollercoaster he never bought a ticket for
why he doesn’t like the word “carer”, and sees himself as a fellow adventurer instead
hitting burnout during COVID and how counselling helped him
fighting for the right care package, and why keeping your own identity is “life-saving”
how their relationship has become deeper and more meaningful since Susie’s diagnosis
If you missed it, we'd recommend going back and listening to Suzi’s episode first.
💬 Join the conversation: Instagram @ftdnavigatingthecrap or email ftdnavigatingthecrap@gmail.com (mailto:ftdnavigatingthecrap@gmail.com)
If you need support, Alzheimer’s Research UK and Alzheimer’s Society are there to help.
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
6 Oct 2026
Living Well with FTD: Suzi's Story - The FTD Warrior
This week I'm joined by Suzi Barton - the FTD Warrior. Suzi was diagnosed with FTD at just 50 and has been living with it for 11 years.
She's a former social worker, a mum, a nana to 11, a rock chick and a miniature maker, and she's proof that a dementia diagnosis doesn't mean life has to stop.
Suzi talks with honesty and humour about:
the early signs; like hearing loss, impulse buying and sudden food cravings
being misdiagnosed, then having her diagnosis taken away and given back again
why she believes you can still learn new things, and how she taught herself to make miniatures
having to become your own advocate and then your own expert
her advice for anyone newly diagnosed and for the families caring for them
Next week, we'll hear from Suzi's husband, Colin - about loving and caring for someone with FTD.
🎧 Follow Suzi on TikTok: @dementiacraftingFTD
💬 Join the conversation: Instagram @ftdnavigatingthecrap or email ftdnavigatingthecrap@gmail.com (mailto:ftdnavigatingthecrap@gmail.com)
If you need support, Alzheimer's Research UK and Alzheimer's Society are there to help.
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
Who has been a guest on FTD - Navigating The Cr*p
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Eleanor Connelly
Lauren
Helen
Kirsty Roebuck
Hannah Gardner
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Apple Podcasts (US)
5.0 / 5
2 ratings
Spotify
5.0 / 5
13 ratings
Podcast Authority Score: 33 / 100
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65
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YouTube
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