172: The 'D' Word with Pete Hill and guest Susan Koen!

172: The 'D' Word with Pete Hill and guest Susan Koen!

How do people find hope in the darkest times? This conversation on The D Word follows writer Susan Koen as she talks with host Pete Hill about life, love and loss in the shadow of genetic frontotemporal dementia (FTD). Susan shares the story of her partner Barbara, a vibrant singer, gardener and knitter whose family carried the GRN FTD gene. They spent 42 years together, always aware that dementia might strike.

Susan admits, "This is one time in my life I don't want to be right," as she recalls spotting the subtle early changes Barbara tried to hide: stopping hobbies, struggling with complex cooking, and a growing apathy that felt nothing like the woman she knew. The conversation makes clear how different FTD can look from Alzheimer’s. Barbara kept her memory and language, yet lost social inhibitions and planning skills.

Standard dementia tests often missed what was really going on, and even once Susan persuaded Barbara to seek help, they faced an eight‑month wait to see a neurologist. Susan talks frankly about anticipatory grief and the quiet weight carers carry, calling caregiving "a marathon, not a sprint" as you lose parts of the person you love while still looking after them day to day.

She also explains why Barbara joined a clinical trial and why their family donates brains for research, urging others affected by FTD to take part so treatments have a chance to move forward. Her book, *Dancing in the Face of Death*, written at Barbara’s request, honours a relationship that held on to joy and humour even as dementia advanced, with all proceeds going to FTD research.

If you’re affected by dementia or caring for someone who is, this gentle yet honest conversation might leave you asking: how could sharing your own story help others too?