The people we still are by Kate Swaffer

Moving Your Soul, Another Way To Live With Alzheimer's

I believe nothing will change until we recognise it is imperative we all understand the human cost of dementia. It is people with their own stories that have the most impact on achieving change as it turns the whole area of dementia into reality, not just words on a document or report. Dementia care is caring for people who often do not know they need care, and don’t want to be in care; no wonder we may become angry and upset! The changes brought on by dementia are relentless, yet many people don’t see them as disabilities, merely as external symptoms. Many also think it is a mental illness, which it is not. And so, we are regularly defined by the symptoms of our disease – forgetful, confused, aggressive, odd behaviour, rather than the people we still are… mothers, daughters, lovers, husbands, wives, employees, aunties. It is a tragedy so many just see our deficits.

Reading blogs and forums written by carers and professionals in dementia often leaves me feeling sad and vaguely demeaned, as it is too often written that a person living with dementia is ‘demented’, rather than a ‘whole person’ living with the symptoms or disabilities of dementia. It feels discriminatory, and I wonder if people with dementia wrote publicly about how harsh they often felt the action of their loved ones, their medical specialists and their paid carers feels to them, if they would be so readily listened to. This beautiful site however, fills me with hope as the stories written by carers and loved one is so honourable and respectful of the people living with a diagnosis of dementia, it is one I want to contribute to. I feel thrilled to have been asked.