Caring for mum with Lewy Body Dementia

Hi everyone!

My name is Nabs, am 33yrs old and I am a Brit living overseas in the beautiful country of Kenya. I recently had my mum diagnosed with Lewy Body Dementia and was looking for ways to talk to people who have both experience with the disease and with caring for a loved one and came across this forum. Unfortunately, there is not much awareness or support for Carers in this part of the world, nor is there much information on care requirements as such a disease progresses.

Affordable home care is available here and so we have mum living with us at home and have a Live-In Carer, though I am finding my role growing in intensity as her symptoms have gotten worse in the past few weeks since her diagnosis (severe paranoia, delusions, visual and auditory hallucinations and sleep disturbance). Being an only child and having lost my dad (her hubby) over 25 years ago, I seem to be the only one who can calm her down and keep her at peace when she is agitated, which seems to be growing in frequency - now happening several times a day and a lot at night!

Would really appreciate if anyone who has experience with Dementia care would reach out to me, either on this thread or in private, to share their experience and give any advice as we start this journey.

Thanks in advance, and wishing you all the best.

Nabs

Hi Nabil,
welcome to the forum.

Caring for someone with Lewy body dementia is very difficult, although having a live in carer must help.

I don’t have experience of caring for someone with dementia but others on here do.

https://www.alzheimers.org.uk is a mine of information on all types of dementia and worth a visit.

Melly1

Communication and dementia with Lewy bodies
In this video, Dr John Paul Taylor and Professor Ian McKeith talk about some common communication challenges for people with DLB. These are visual hallucinations, fluctuating attention, apathy and sleep disturbance. Some of these symptoms may also be present in other types of dementia.

I am hoping you maybe able to access this online course.

I haven’t personally done this course. But I have access many others.