‘You’re treated like this is the end’: Meet the dementia rebels – diagnosed and determined to change people’s minds

Few things are more feared than a dementia diagnosis. Now people living with the condition are fighting against damaging stereotypes and demanding proper medical support When Maxine Linnell, 78, a retired psychotherapist living in Leicestershire, learned that she had dementia four years ago, the diagnosis proved less challenging than some people’s reactions. “What was striking was how many people’s attitudes changed almost immediately … they stop seeing you as a person and see only dementia, some professionals included. Like this is the end and everything after will be devastating.” The assumption that you go overnight from diagnosis to late-stage dementia isn’t confined to family and friends. Julie Hayden, a nurse and social worker from Yorkshire, was diagnosed nine years ago at the age of 54, long after sensing that something was wrong but being constantly told that it was depression or menopause; her doctors still associated dementia with old age and didn’t consider that she might have had young onset. “At the point of diagnosis,” she recalls, “most of us are told: ‘Well, it’s dementia, nothing we can do about that. Best go away and get your end of life a