Posterior caranal atrophy

[DBD1975]

Dear Mumsnet
Please could you help/advise.
I have a family member who was diagnosed with posterior caranal atrophy several years ago.
Since their original diagnosis they have not been under the care of a consultant and rely solely on their GP for ongoing medication.

I find this quite shocking and feel they should be under the care of dementia services and having regular reviews with a consultant in terms of progress of the disease, ongoing monitoring and medication review.

I am just wondering if my expectations are unrealistic and if anyone else has had a similar experience.

Any advice would be very welcome.

I wasn't aware that there was such a thing as dementia services. My mum got her diagnosis and was left to it.

Same with my dad

Diagnosed, given info to contact Alzheimer's UK and left to it. Alzheimer's UK went someone round said they'd send some info and were never seen or heard from again.

I guess it depends on where you live.

My grandma used to have checkups at the memory clinic and they advised and supported with dementia care. Perhaps you have similar in your area?

Depends on where you live and also how they were diagnosed sometime. Sometimes neurologist keep people on review but memory clinics often don't have post diagnostic service. If relative is interested in research several teaching hospitals have clinics for the rarer forms of dementia, UCL and addenbrookes that I know of.

Rare dementia support is also a great organisation for ongoing support and information https://www.raredementiasupport.org/posterior-cortical-atrophy/.