Rare Dementia

[SueS72]

Hi everyone, I'm a carer for my mum who has Frontotemporal Dementia and Primary Progressive Aphasia. I'm the only child of two only children. It's a tricky Dementia to navigate. I wondered if anyone else is supporting someone with these conditions? Thank you

 

[Kevinl]

Yes and thank you for posting, you'll kind a lot of help on here. K

 

[SeaSwallow]

Hello @SueS72 and welcome to the Dementia Support Forum. It must be difficult to care for your mum and also looking after two children, I do hope that you have good support. If you have not already done so it might be an idea to arrange a needs assessment for your mum and a carers assessment for yourself.

I do not have any experience of FTD or PPA but hopefully some of our members will come along to share their experiences.
There is a Rare Dementia Support website and I have attached a link which you might find useful.

About RDS – Rare Dementia Support

www.raredementiasupport.org

You might also find it useful to start a thread on our 'I care for a person with dementia' area as there you can discuss how you feel, ask any questions that you may have or just have a rant if needed.

I care for a person with dementia

This forum is for people who are involved in the care of a person with dementia.

forum.alzheimers.org.uk

Please keep posting on the forum, you will get lots of support from our members.

 

[Grannie G]

Welcome @SueS72

I hope you will be able to get some answers to your questions.

I don't have personal. experience of PPA and FTD but from what I`ve learned, people with FTD often lose their language skills in particular their expressive language. This links with PPA which I am familiar with since working with children with speech and language disorders.

If you can manage to add gestures to the spoken word when communicating with your husband, it might help. Also, is your husband still able to write to express his needs? This could make life a bit easier.

My father had dementia caused by fluid on the brain. It damaged the area of his brain connected to his throat, swallowing, and speech. He was still able to write to express his needs. Nothing elaborate or fluent but basic expressions of need which helped a little.