Why we don’t like the words “sufferer” and “carer”

It seems that every article written about dementia will call those with a diagnosis “dementia sufferers”. Yes, of course living with any form of dementia is difficult, every day throws up new challenges and currently there is no cure. But why does that mean you become a “sufferer” rather than a person living with a medical condition?

Our group have proved week after week that life can still be good even with dementia. Jill and her husband, who had dementia, went on trips all around the world even after diagnosis. Carri has found that her relationship with her mother has grown as her mother is able to say things she never would have before. Jeannette still visits care homes to sing for the residents even though she has been recently diagnosed with Alzheimer’s, music is part of her and she never forgets the words. Patrick still goes for a pint with the boys from the rugby club. Does any of his sound like suffering?

All of a sudden people with a dementia diagnosis are labelled “sufferers”, like they don’t have a choice to make the most of every day. Although there is currently no cure there is still hope for a fulfilling life and warm relationships. Let’s make the most of that, rather than focus on the negatives.

Jeannette and her husband David

Another term I personally take issue with is that of "carer". At what point does someone stop being a husband, wife, child or sibling and become a carer?  Why is that distinction made in official medical correspondence? As someone’s spouse you make a commitment to love and care for your partner ‘in sickness and in health’.

Throughout your life you will always care for those you love, why does a medical diagnosis make that care your only role? You can still have fun and do the things you have always done together. Your role in your loved one’s life is so much more than just that of care giver.

Although it may seem pedantic to pick apart these terms they are having a negative impact on people every day. Seeing yourself labelled as a “sufferer” or “carer” can change the way you feel about yourself. Obviously these terms aren’t intended to offend anyone but that doesn’t mean they don’t hurt.

Some of the aims of working on Memoria are to reduce stigma and raise awareness about the realities of dementia. By telling us how these terms have affected their lives our brave group have opened my eyes and I will be much more aware of how I discuss any medical diagnosis in the future. Let’s hope their stories have the same effect on our audiences.

Let’s support each other in the difficult times and celebrate every positive moment, no matter how small.