My journey into dementia advocacy began when my husband, Alan, was diagnosed with Lewy body dementia (LBD) in 2022, following more than four years of confusing, fragmented assessments and misdiagnoses. Looking back, the signs had been there since around 2016: REM sleep behaviour disorder, visual hallucinations, cognitive changes and Parkinsonian symptoms. Like many families, we found ourselves moving between services, with each symptom treated separately rather than recognised as part of the wider picture. Our experience reflects that of many people living with Lewy body dementia, where diagnosis is often significantly delayed despite it being the second most common form of degenerative dementia.