Navigating the beginning of the dementia journey

[JettyJ]

Hi. I’m new here annd glad to have found this resource 😊.
My father has recently been diagnosed with mixed dementia after a long battle with the nhs to get a diagnosis. He’s on rivastigimine patches and has recently dropped the dose after having a suspected TIA directly after increasing his dose. He had an mri just before diagnosis which revealed a number of new small bleeds on his brain. The dr did not offer any explanation for these but now we wonder if he’s been having tias without us knowing, culminating in the latest one which affected his speech and comprehension for half an hour or so.
We’re struggling to get any cohesive support from the dementia drs or his gp. No one has discussed his mri results with us. It’s a really confusing and worrying time and and we’re struggling. We’re doing our own research but not sure if it’s all correct.
I guess I’m wondering if anyone else has had these kinds of side effects on rivastigimine and also if they have experienced the same issues with support, and how they navigated through it? He seems to be deteriorating quite fast now, more so since he’s been on the meds.
Any advice about the beginning of the journey would be very welcome.
Thanks so much.

 

[Grannie G]

Welcome @JettyJ

Dementia drugs do not agree with everyone.

My husband tried two of the drugs, Donepezil and
Galantamine and both had such severe side effects we had to stop them completely.

I accept these drug have been most helpful for many people with dementia and glad we tried them, they might have helped, but our experience made us realise they do not suit everyone.

Provision has deteriorated since our days. My husband was diagnosed in 2005 and I`m afraid carers may need to push harder to get the medical support they need.

My husband was diabetic and did not have the medical complications your father has so there`s little to gain from comparing side effects. All you can so is continue to seek medical advice.

It`s really tough and I can tell how worried you are.

 

[JettyJ]

Thanks for your reply and for sharing your experience with me