Last Friday, September 21st, was World Alzheimer's Day and in keeping with recent tradition it was also the day that Alzheimer's Disease International released their 2012 Report. This year's report focused on the stigma of dementia and included results from an international survey of people with dementia and carers as well as a collection of essays from people in the broader Alzheimer's community, including myself. A reproduction of my essay can be found below and the full World Alzheimer Report 2012 can be downloaded here.
There are few things more frightening than the thought of losing your mind. Losing those last shreds of awareness that tether you to your life and the people around you. If you’re lucky this notion will remain just that, a fear. An abstract thought that acts to occasionally cajole you into exercising more or eating better. But for others, a diagnosis of Alzheimer’s disease or dementia can turn this fear into a reality, taking a healthy mind and slowly stealing it away as they watch it happen . There are currently an estimated 36 million people living with dementia worldwide . Thirty-six million people quietly slipping away from both themselves and the loved ones who surround them. In many cases these individuals are struggling with more than just their condition alone, they are struggling with the profound stigma that remains affixed to a diagnosis of dementia.
The stigma associated with dementia adds an additional burden to the already heavy load carried by all those who are affected. Emanating either externally, from the wider population, or internally, from the affected individuals and carers themselves , such stigma acts to reduce people affected by dementia ‘from a whole and usual person to a tainted and discounted one’ .
Until recently my father, Alan, was one of the many individuals living with dementia. He was diagnosed with younger-onset Alzheimer’s disease at the age of 54, although we would later discover that this diagnosis was complicated by also having Lewy Body Dementia. The diagnosis changed his life irrevocably, and over the course of nine years he went from being a prominent surgeon to a frail old man as the diseases took their course.
As with most dementias, the deterioration in his cognition did not occur overnight. However despite this, small changes in his social circles began to evolve soon after his diagnosis. Whilst a solid few remained, many of his friends, including those from the medical community, stopped calling. Some made excuses but most simply faded away. Before long a similar pattern of desertion could be seen in my mother’s circle of friends as well as my own and those of my siblings, leaving us all with a feeling of isolation as the social supports we had so carefully constructed slowly eroded away. This sort of social stigmatisation and isolation are commonly reported by people affected by dementia, with many relationships waning despite cognitive faculties remaining largely intact. It remains hard to know whether the shift in friendships arose from my own issues in dealing with the diagnosis or whether my friends had lacked the knowledge of how to cope during this hard time. In reality it was probably a little of both. Fear, anger, shame, guilt and a general awkwardness tend to hang heavily over the heads of both those diagnosed with dementia and their carers in the early stages of the disease, as attempts are made to reconcile the diagnosis with their everyday lives.
‘People become very clever at being able to avoid you. It becomes a very lonely experience for many years.'
‘Once diagnosed, friends soon disappear; they find it hard to see the decline in your loved one, and then once they have died, the carer has to start and make a new life and sometimes [new] friends’
In many ways, the early stages of dementia are the forgotten years. With only minor adjustments, diagnosed individuals are often able to retain a sense of normality in their daily lives. In his initial years with the disease, my father was able to continue enjoying the travel, films and friends in much the same way as he had prior to his diagnosis, albeit with a slight increase in help from those around him. He even acted as a member of the Consumer Advisory Committee for Alzheimer’s Australia (Western Australia) for over a year, passing on his insights on life after a dementia diagnosis. Despite this, I am ashamed to admit that a great deal of the stigma leveled at my father during this time emanated from me. In the early stages, it was easier to talk through him or not talk to him at all; to adjust to the loss that was to come rather than watching the disease slowly take its course. The heady mix of anger, guilt, shame and sorrow that his diagnosis had instilled in me resulted in my losing sight of who he was as a person, seeing instead the disease that would eventually claim his life. I lost a year to those wasted emotions. A year in which my father’s mind remained clear but in which my fear and shame kept him at arm’s length. In the end though it just took time; to adjust to the diagnosis and to realise that the time we could still share was more important than my own concerns.
As carers we are not immune to the stigma that continues to surround dementia and at times find ourselves perpetuating these notions rather than acting to halt them, particularly within those early stages. However, as time passes and our awareness grows, we are better able to see those affected by dementia as the individuals they are rather than the condition that afflicts them. Equally, it is imperative that we strive to challenge the stigma of dementia which pervades the wider community by ensuring that accurate representations of the condition are presented and an open discourse is established. Perhaps then the burden of dementia can in some small way begin to be reduced.
Sources1. Alzheimer’s Society, Dementia: Out of the Shadows, 2008: London.
2. Alzheimer’s Disease International, World Alzheimer’s Report 2011, M. Prince, R. Bryce, and C. Ferri,
3. Goffman, E., Stigma: Notes on the management of spoiled identity 1963, Englewood Cliffs, N.J.:
4. Alzheimer’s Australia NSW, Addressing the stigma associated with Dementia, 2010.