It's World Alzheimer's Day. A day to be aware of, rather than to celebrate. So, after a great morning teaching brain fitness to a wonderful group of people I headed off to Government House in Perth to attend a joint presentation put on by the McCusker Foundation and Alzheimer's Australia WA.
There were a number of speakers including Prof Ralph Martins who gave a fascinating update on where we are up to with lifestyle factors assisting in the prevention of dementia.
But the most poignant of the speeches came from Glenda and Bronte who spoke about their experience of living with dementia. Glenda has a rare form of dementia - posterior cortical atrophy, which means her ability to interpret what she sees is greatly impaired.
She also falls into the younger onset group, being younger than 65. Many of those with young onset dementia are in their thirties, forties and fifties. One of the main gripes Glenda and her husband had was about the medical profession, who are not very good at suspecting dementia being a possible diagnosis in someone younger. In fact they spoke quite harshly about the apparent lack of knowledge or education held by GPs in this area. I would probably suggest, it's probably not always just the GPs who are not up to speed and that some specialists would also fall short.
Glenda is poised, elegant and speaks with honesty and a fair degree of self -depreciation and humour about her condition. She refers to her husband as "her back up brain" and clearly the close bond between the pair is very evident: her husband softly prompting her when she got stuck for a word or was unsure of the next point she wanted to get across.
A former headmistress of a prestigious Perth school she is no longer able to read, can no longer distinguish colours and has difficulty recognising glass. Yet her life is clearly full and despite expressing her fear about what may lie ahead, you couldn't but help admire her feistiness, intelligence and warmth.
She and her husband have recently returned from Canberra where she been involved in the setting up of a new group, run entirely by people with younger onset dementia to address some of the many challenges they face and to work towards making our society a more dementia friendly place.
In a world where we will increasingly come to be either touched by dementia ourselves or know of someone else who has been, listening to Glenda made me think about just how much we take for granted, and how more we can do and must do, to make life that little bit easier for someone in the community who is living with dementia.