Treating symptoms in the early stages of dementia, as the gateway to supporting disabilities, not managing them in ways that restrict and hinder, and managing emotional changes with counselling and positive engagement, rather than treating the symptoms with drugs, have become paramount to my well being and perceived longevity.
If the symptoms of dementia were treated as a disAbilities, the negative impact on the person, their family, and society would be far less; we would be given assistance to remain employed, which in turn would increase our social inclusion and social equality. This would decrease the isolation, stigma, and discrimination. This in turn would decrease the economic impact on person and society.
We would be given strategies to assist us to live with the unique challenges of dementia; Counselling to remain engaged with our pre-diagnosis activities, a disAbility plan, assisted technologies, disAbility equipment, mentoring, and even note takers or memory loss reading logs to help us function fully. This would ensure we are treated with dignity and as whole and individual human beings. At the ADI conference in Taipei last week, these things are now being recommended as slowing the progression of dementia:
- Positive psychosocial interventions
- Non pharmacological interventions
- Neuroplasticity training
- Exercise and cognitive fitness
- Authentic brain injury rehabilitation
- Focus on well being and QoL
I’m not sure why the researchers took to long to catch up to me!!!
probably because they aren’t living with it so therefore their research is based on visual ‘evidence’ and I suspect as well you know people can hide it for a period of time thus making it more difficult after diagnosis to remain engaged and viable. Not that this should be a barrier but sadly it is for people around them. People get angry rather than ask for help so this too drives away people who can assist. I agree with above comments you are way smarter than most and way prettier 🙂
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All those things don’t happen because patients go to neurologists but it’s not their job to do all of the above. And there isn’t any “case worker” to help with all the other services that might be useful.
I’ve done all of the above, but I did them because I – ME – instigated them. I took myself to some memory courses. I myself started keeping detailed logs of all my medical and personal historical information (so the other day I could show my GP some test results of tests done in 1999) ……….
Obviously things haven’t improved in the 15 years since I was diagnosed til now 😦
The public itself will continue to act strangely because it’s how they behave when they’re scared of the disease …. ….. plus maybe there isn’t compassion like for people with cancer because they don’t see it as a terminal disease . having said that some people are scared of people who’ve been diagnosed with cancer too …. probably for many reasons like brings back memories of others who have died, because they fear talking and facing up to death …… etc
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You are out front my friend and most are not fast enough to catch up! Keep on keeping on and life will make great change! Happy weekend Kate….Love & Hugs..VK
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Such a good point. Perspective is everything, Social construction has to recognised, Malignant positioning must be eliminated.
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………..Dear Kate…….you are just too smart for your own good…..
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Probably because they aren’t as smart as you, not as pretty either.
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