Who are the real experts in dementia?
This Dementia Action Week, I have reflected on the past 30 years that I have worked with people and families living with dementia and how the recognition of dementia as a disease rather than a symptom of old age has changed (for the better!).
A measure of how dementia was viewed back in the early 90’s is reflected in my experience as a newly qualified RMN (Registered Mental Health Nurse). I was placed on the Older Peoples Mental Health Ward, with a pat on the knee from the manager “don’t worry love we’ll move you in 6 months”. That interview was the start of one of the most rewarding and enriching career pathways that anyone can have.
Dementia care in those days was mainly around carer support and physical care.
Thankfully with the introduction of the dementia medication in the 90’s formal consent from people experiencing dementia was needed to enable prescription of medication. What a difference this made – the introduction of Aricept gave hope as well as giving people with dementia a voice to be heard. Thankfully the outcome of this was the opening lines of communication and the developing of bodies of evidence about whet it actually feels like to experience dementia. The arrival of Aricept helped people receive a formal diagnosis and resulted wider recognition of dementia as a real disease.
I’m often introduced and referred to as Lynn – ‘The Dementia Expert’ and nothing winds me up more than seeing advertisements offering support and training with claims of dementia expertise.
The only ‘expert in dementia’ is that person and that family who are living with this unique experience.
It’s true that I have a lot of knowledge and experience and will try my best to help anyone navigate this complex journey, but I think the word ‘expert’ is too widely used and almost a little arrogant.
This Dementia Action Week, Alzheimer’s Society are raising awareness about the importance of getting a
Dementia Action Week 2023– It’s not called getting old, it’s called getting ill.
Dementia diagnosis rates have stagnated, many are facing dementia alone, without access to the vital support that a diagnosis can bring.
This Dementia Action Week we’re encouraging individuals and their families to seek a timely diagnosis and avoid reaching crisis point.
Getting a diagnosis can be daunting, but we believe it’s better to know. And so do 91% of people living with dementia.
So, my name is indeed Lynn James and I have 30 years’ experience supporting people and families affected by dementia – Always happy to help.
Please don’t struggle on alone, give me a call and I will do whatever I can to make your experience easier.
Lynn James 07923157010 / firstname.lastname@example.org