Dementia: Don’t call us sufferers

Mention the term ‘dementia sufferer’ to James McKillop and he visibly bristles.

For James, who has early-stage dementia, the term is something of a bugbear. He says its negative connotations – it’s easy to think of someone in a care home, unable to do anything unaided – do not reflect the situation for many people with early-stage dementia.

James is enjoying life to the full, pursuing his own interests and spending time with his family. In addition, he travels all over the UK speaking about dementia and talking at conferences as part of the Scottish Dementia Working Group, a campaigning organisation run by people with dementia with the aim of improving services for people with dementia and attitudes towards the condition.

The term ‘dementia sufferer’ also ignores the fact that for many people, being diagnosed with dementia is a good thing. Indeed, he refers to himself as a dementia enjoyer – because his quality of life has improved so much since he was diagnosed.

James is not alone. The selection of members of the SDWG I met last week in Glasgow all say they prefer their lives post-diagnosis.

Instead of thinking their lives were over, and giving up, settling back to wait for the inevitable decline, they have seen it as a challenge and a catalyst to move into a new phase of their lives.

For example, everyone in the group has developed new skills, from photography to sign language. They say it’s not about what you can’t do; it’s what you can do, which is just about anything. While learning new skills may take a little longer for people with dementia, they can still be done.

The SDWG is all about challenging the stereotypes and stigmas often attached to dementia, and shows what can be done. If more people had their attitude to dementia, then ‘suffering’ would never come into it.

More from my meeting with the SDWG will be appearing on Bettercaring.com in the coming weeks.