I was fortunate enough yesterday to spend an hour with Kate Swaffer who is globally known for her advocacy work with dementia and has been personally diagnosed with Semantic Dementia. (a rare form that affects how she interprets words a bit like dyslexia, plus several other debilitating symptoms).
I found her passion inspiring and was amazed at how we were on the same page with many dementia related issues. Kate does not ‘pull any punches’ and this is the way she creates change in a world that needs plenty.
Straight after our meeting I decided that I was ready to embark on a university diploma in ‘Dementia Care’, and enrolled. I believe that I can make a difference as a trainer and advocate in the future so I better start doing some homework.I was a bit stunned when Kate suggested I do some ‘light reading’ and pulled out 4 thick books for me to to get stuck into. (I fall asleep reading the newspaper!)
What I learnt from Kate:
- Sometimes you have to follow your passion and fight for those who need you to.
- you may not be liked by everyone when you speak up, but you have to be an activist if you feel strongly enough.
- the language used when talking about people with dementia is very important.
- you should never call a person with dementia a ‘sufferer’ as many people are suffering including family members and carers, plus if you get told all the time that you are suffering you will condition yourself that way.
- you need to keep things simple and easy to understand when advocating – talk the same language
- the impact of dementia on young family members needs to be heard
- we agreed that SA needs a centrally based, age appropriate facility for people with early onset dementia (with a suitable environment & music)
- people diagnosed with dementia need to surrender their car keys instantly,
as driving through one red light is one too many.
- doctors need to follow up every 12 weeks when prescribing anti psychotic medications to look for side effects. (Anti psychotics should be a last resort)
- you can change direction with your career if you want it bad enough.
- reading books is about to me my new hobby!
- be straight with people.
- In the late stages of dementia – spend quality time with your loved one. Just be there as a son. (not just a carer)