As a former primary carer for my mother who received a very late diagnosis for Vascular/ Frontotemporal Dementia I can give the lived experience of the wider impact the diagnosis has on not just the person but the care partner/supporter and the wider community. The late diagnosis robbed my beautiful mother of many years of a productive, meaningful life, where she could have make decisions as to what her preferences were around her care when her dementia advanced [1-4]. Unfortunately for my Mum once the diagnosis was received her wishes were ignored and she was basically a non-identity in her community, some of her family and the clinicians in general dismissed it as the ageing process. Instead of having more control over her life, she and I lived in a glass bowl for over 3 years with constant fears, anger, confusion, feeling isolated and ignored.