RLS in older patients with dementia

[Joolsg]

acrobat.adobe.com/id/urn:aa...

A salutary study from Brazil shows that 15% of older patients with dementia have RLS.

That is my greatest fear. That I become unable to tell anyone of the torture.

If you have elderly relatives with dementia- ensure that doctors look out for signs of RLS and test for low serum ferritin.

[Huntingleroy]

That has always been my fear. Surely we could get a red flag put on our medical records ?

[Joolsg in reply to Huntingleroy]

But would ANYONE pay attention? My recent hospital stays showed me that nursing staff were unable to give me my RLS meds on time. And I'm a stroppy scouser! Gawd help anyone who is too unwell to speak up for themselves.

[Huntingleroy in reply to Joolsg]

No probably not ! It seems to me no one cares , after all its only your legs jumping around a bit !!!!!!

[Kakally]

this is massively important. . 😔

Thank you Joolsg

[Pippins2]

My number 1 fear too.I am so glad I was able to help my mum as she was in a care home due to dementia and had RLS all her life .I was able to stop the care home GP giving her Amitriptyline and press for opiates when she was dying due to Covid .I knew her legs were comfortable at the end and that gives me some peace.

[Joolsg in reply to Pippins2]

That is a blessing Pipps. UK doctors are still so out of date.

[ziggypiggy]

Here's a positive spin. I've mentioned before my mom suffered with severe RLS her whole life. She developed dementia and was diagnosed with early onset Alzheimer's. The last few years before she died she was at the most peace with her RLS and never complained. I would inquire every time I saw her how her legs were doing. She would say oh fine, they don't bother me much anymore. I was totally perplexed by this as they were always tortuous for her. My best guess is this. Her short term memory was hit the worst. She simply just couldn't remember what had just happened a few minutes ago. Otherwise she was sharp and had great long term memory.

I think her RLS in her legs would start to get bad but then she would forget they were. The flare ups could never gain any traction. It was the ultimate form of the distraction technique. I always was/am a believer in distraction. I could be in full flare up but if an emergency popped up that needed my attention for a bit the flare up would often be gone afterwards.

All the other shit that goes on with seeing someone go through dementia aside, the peace on her face from finally having relief from RLS I will never forget. It gives me hope that I too may have peace at the end without RLS.

One of my worst anxieties is being at the end of life in a nursing home under the care of a resident doctor with no knowledge of RLS. Not having any access to medication as needed without making a fuss and getting a nurse to agree to it. Confined to a bed or wheel chair. Yikes. Sound miserable.

I digress.

[Joolsg in reply to ziggypiggy]

Thanks ziggy. That gives me some hope. You are so right about the short term memory. And if that means forgetting how you were suffering a few moments before. Brilliant.

[BocaMom in reply to ziggypiggy]

Thanks for this perspective - what a silver lining for your Mom.

[Lolly53]

My neurologist told me several years ago that in his experience, elderly people have fewer and fewer problems with RLS as they continue to age. I am 71 and this has given me hope for the future. Maybe others will be glad to hear this. This was Dr. Ondo in Houston who told me this.

[SueJohnson in reply to Lolly53]

With all due respect to Dr. Ondo as he is certainly an expert, that is not the case. However if one is able to get it under control, it should stay under control, although it might require a slight increase in medicine.

[Qalba]

I was so scared about rls flaring with my last surgery because it had happened twice before. I took every possible precaution with my surgeon, anathesiologist, other personell, insisted on nig notes on my chart, insisted the presurgery team actually speak to the postop nursing staff, etc. It failed. The postop staff did not think rls was a big deal and treated me like I was just aggressive and looney. Once I was on a floor it was the same with every caregiver that entered my room. They smiled and blew me off.

Yes, our fear is real.

[Merny5]

This has always been my biggest fear too. No one understands this except people on this forum.

I have told my daughter that if I ever become incapacitated to please make sure that I am given my methadone.

[Joolsg in reply to Merny5]

Yep. I have written instructions for my husband & children. AND I always carry an alert card in my bag- everywhere

[HipHop1972]

Oh wow, Joolsg, that is something that had never crossed my mind. It’s a truly horrific thought especially if you don’t have family who are aware of your RLS and can intervene on the patient’s behalf.

Best wishes HipHop1972