FTD - Navigating The Cr*p

This week I’m joined by Leanne, whose mum was diagnosed with behavioural variant frontotemporal dementia in 2018 and is now living in a care home.Leanne talks honestly about the early signs that something wasn’t right, like unexplained spending and a loss of empathy. She first thought her mum might be autistic, and she explains how a good GP led to a memory clinic referral even though her mum had no memory problems. She shares how she hit burnout after trying to “keep going,” and what counselling and a young onset dementia support group gave her.We also talk about something many carers face but rarely say out loud: having a sibling doesn’t always mean having support. Plus, Leanne’s top advice for newly diagnosed families: why getting power of attorney in place early is vital, and why you have to be ready to advocate for your loved one.If you’re struggling with anything discussed in this episode, support is available from Alzheimer’s Research UK and Alzheimer’s Society.Get in touch: Instagram @ftdnavigatingthecrap | ftdnavigatingthecrap@gmail.com

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-oldfighting for support when services didn’t know how to help someone so youngthe decision to donate Andre’s brain to researchgiving Andre the send-off he deserved, and grieving now that the whirlwind has stoppedsetting up Andre’s Moments That Matter CIC, which helps families affected by young-onset dementia make memories togetherThis 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.comThis 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.

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 machinesthe day of Susie’s diagnosis, and why it felt like being strapped into a rollercoaster he never bought a ticket forwhy he doesn’t like the word “carer”, and sees himself as a fellow adventurer insteadhitting burnout during COVID and how counselling helped himfighting 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 diagnosisIf you missed it, we'd recommend going back and listening to Suzi’s episode first.💬 Join the conversation: Instagram @ftdnavigatingthecrap or email ftdnavigatingthecrap@gmail.comIf you need support, Alzheimer’s Research UK and Alzheimer’s Society are there to help.

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 cravingsbeing misdiagnosed, then having her diagnosis taken away and given back againwhy she believes you can still learn new things, and how she taught herself to make miniatureshaving to become your own advocate and then your own experther advice for anyone newly diagnosed and for the families caring for themNext 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.comIf you need support, Alzheimer's Research UK and Alzheimer's Society are there to help.

Series 3 kicks off in FTD Awareness Week 2026 with Emily Harris.Her mum, Andrea, was a nurse for 35 years. She was first diagnosed with young onset Alzheimer's at 56, until a genetic test showed she actually has MAPT FTD.Emily talks openly about the early signs, the fight for answers, the heartbreaking decision to move her mum into full-time care, and her own decision to get tested for the gene.🎧 Follow Emily and Andrea on Instagram and TikTok: @mumsftdjourney💬 Join the conversation: Instagram @ftdnavigatingthecrap or email ftdnavigatingthecrap@gmail.comIf you need support, Alzheimer's Research UK and Alzheimer's Society are there to help.

In this special bonus episode of FTD: Navigating the Crap, Beth is joined by Natalie Carter, host of the Dementia Dialogues podcast.Earlier this year, Beth shared her own family’s experience of Frontotemporal Dementia on Natalie’s podcast, and now the roles are reversed as she joins Beth to share her story and reflect on what she’s learned through years of honest conversations with carers and families affected by dementia.Together, they talk about the shock of diagnosis and the devastating lack of follow-up support so many families face, the emotional weight carried by carers who don’t always recognise themselves as carers and the guilt, burnout and isolation that come up again and again in these journeys. They also discuss why forward planning, early conversations and peer support can make such a difference and why too many people still fall through the cracks, particularly older carers.If you need advice or support, you can contact:Dementia UK Admiral Nurse Helpline: 0800 888 6678Alzheimer’s Society Dementia Support Line: 0333 150 3456You can also listen to Natalie’s podcast Dementia Dialogues wherever you get your podcasts, where she continues these vital conversations with carers, professionals and people living with dementia.

In this final episode of Season Two, Beth takes a moment to pause, look back, and share where life - and her mum’s dementia journey - are now.She talks openly about the hardest moments of the past year: the sudden overnight decline that changed everything, learning to adapt to new routines with her dad and facing the reality that dementia is a progressive, life-limiting disease.Beth also reflects on the powerful conversations she’s had throughout this series - from Helen’s genetic testing experience to Eleanor’s discussion on living grief - and how they’ve shaped her own thinking about guilt, self-care and what the future might hold.The podcast will return in 2026, but for now, Beth is taking a much-needed break to spend precious time with her mum over the festive period.If you need support with anything discussed in this podcast, visit alzheimers.org.uk for the dementia support line.To learn more about dementia research and how you can get involved, email infoline@alzheimersresearchuk.org.To stay connected or share your story: 📸 Instagram: @ftdnavigatingthecrap ✉️ Email: ftdnavigatingthecrap@gmail.com

In this episode, Beth is joined by Eleanor Connelly from Tide (Together In Dementia Everyday) - a charity dedicated to supporting carers and former carers of people living with dementia. Eleanor opens up about her experience caring for her dad with vascular dementia, and how her own grief led her to the work she now does.Together, we explore one of the hardest and most hidden parts of dementia: living grief. The grief you feel while your loved one is still here - but changing. The weight of the lives you’re no longer living. The guilt. The silent thoughts. The things we don’t say out loud because we worry they make us bad carers or bad people. Eleanor shares how opening up about these feelings can be a lifeline. If you’ve ever felt overwhelmed, resentful, guilty or ashamed for the thoughts you’ve had on this journey -this episode will help you feel less alone.If today’s episode resonated with you, you can access Tide’s free events, resources, booklets and videos at Tide.uk.net.Tide isn’t just for carers and former carers - they also provide training and resources for professionals, helping everyone to better understand and navigate the dementia journey.If you need support with anything discussed in this podcast, visit alzheimers.org.uk for the dementia support line.To learn more about dementia research and how you can get involved, email infoline@alzheimersresearchuk.org

In this episode, Beth is joined by her friend Lauren, who shares the story of her Nana’s dementia diagnosis at 87, after years of slowly declining health. Lauren explains how her Nana’s diabetes complicated symptoms, delayed a diagnosis and masked what was really going on - and how dementia still hit her family like a shockwave, even at an older age.This episode is a reminder that dementia always hurts, no matter how old someone is. It still shakes families, it still changes everything and it still takes so much love, patience and strength to navigate it.If you need support with anything discussed in this podcast, visit alzheimers.org.uk for the dementia support line.To learn more about dementia research and how you can get involved, email infoline@alzheimersresearchuk.org