Jordan Adams, one half of the popular Instagram duo the FTD Brothers, is using his platform to raise awareness about Frontotemporal Dementia (FTD), a form of dementia also known as frontotemporal degeneration disease. At just 30 years old, Jordan is living with the knowledge that he will develop familial MAPT FTD in his 40s, a condition he has also seen affect his mother. In a heartfelt video, he shared five pieces of advice he wants people to remember when he becomes symptomatic — advice grounded in personal experience, empathy, and a deep understanding of living with dementia.
Frontotemporal dementia is a rare but serious neurological condition that primarily affects the frontal and temporal lobes of the brain. It can lead to changes in personality, behaviour, and language, often appearing earlier than other forms of dementia, typically in a person’s 40s or 50s. Symptoms may include social withdrawal, impulsivity, difficulty communicating, and challenges in planning or decision-making. Unlike Alzheimer’s disease, memory may remain relatively intact in the early stages, but emotional and behavioural changes can be particularly challenging for families and caregivers.
Jordan lays out his five guiding principles for how he hopes to be treated in the near-future:
1. See me. Jordan stresses that even if his personality or abilities change, he is still the same person inside. “Don’t look past me or talk about me like I’m not here. I’m still me — I might change, but I’m still inside somewhere. Treat me the way you do now: with respect, humour, and love.”
2. Don’t argue with me. He asks loved ones to accept his reality rather than correcting him, understanding that his perception may differ from theirs. “If my reality looks different to yours, let me live in it… Meet me where I am, not where you wish I was.”
3. Keep me part of life. Jordan highlights the importance of remaining socially engaged and connected to the world around him. “Don’t keep me inside because it feels easier. I still love being out in the world — hearing laughter, feeling fresh air, watching football or a race.”
4. Be patient with me. He reminds people that memory lapses or repetition are not personal, and simple reassurance can make a profound difference. “Just tell me who you are and remind me I’m safe.”
5. Love me as I am. Above all, Jordan emphasises that care and companionship matter more than trying to fix him. “Hold my hand, share a coffee, put the match on the TV, play me some music. What I’ll need most is the feeling of being loved.”
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The video has resonated widely, with users in the comments sharing moving testimonies. One healthcare professional wrote, “You are incredible Jordan, I’ll be using your advice at the hospital if that’s ok with you? It will really help our teams and other patients understand.”. Another user, joining in spreading awareness and ressources, commented, “The Butterfly Approach by Dementia Care Matters is amazing for people living with dementia. I’ve seen first hand the positive impacts!”
Through his openness, Jordan Adams is not only educating the public about FTD but also providing practical guidance on compassion and empathy for those affected. His message is clear: while dementia may alter lives, love, respect, and patience remain essential, and people living with the condition deserve to be seen, heard, and included — exactly as they are.
