Dementia with Lewy bodies / Parkinsons?

[LisaV]

Hello all
My poor Dad (82) was diagnosed with Alzheimer's just before lockdown. He is still just about hanging on with home-based care, while we wait for a place in a good care home to become available. He was in hospital a month or so ago after a fall, and treated for pneumonia we didn't even know was there. Since then he has become noticably more frail and has had some difficulties getting round the house. He's also getting some continence issues for the first time. All this in addition to ever worsening memory loss, anxiety, etc which just keeps getting worse.
A medical professional has now referred Dad for tests for Parkinson's because he is starting to tremor and he shuffles along much more than he did a couple of months ago. It's just one thing after another, and it's come as quite a shock.
If Dad were diagnosed with Parkinson's, or dementia with Lewy bodies, would this mean any change in his outlook or for the specialist care we should be making sure he gets? is there anything else we should know about this turn of events?
Grateful for any advice...
thank you.

 

[maisiecat]

Hi @LisaV, I am sorry to hear about your Dad's deterioration. My husband has Parkinsons and also Parkinson's dementia but not Lewy bodies.
May I ask was your Dad's alzheimers diagnosed with an MRI or scan. Its just Lewy bodies are very noticeable on a scan.
Lewy body dementia is usually characterised by hallucinations and delusions. Parkinsons itself will require medication and also its really important to maintain mobility as much as possible. A physio or better a neurophysio can help with this.
Hospital admissions are incredibly debilitating for an elderly person but a good Nursing home can help build their strength back up. Its worth checking if he is diagnosed with Parkinsons that the Home have experience with it. My husband's Nursing home is very good with dementia but not great with my husband's Parkinsons so it can feel a bit uphill.
Hope this helps,there are plenty on here with people with Lewy body so more insight will come along

 

[LouiseW]

Hi
Take a look at the excellent Lewy Body Dementa Association website it contains so much information and they even have a downloadable wallet card that warns anyone reading it not to administer certain meds known to make Lewy Body Dementia worse.

My Dad was diagnosed with LBD in 2020 - I would say that the main things to bear in mind are
- the liklihood of hallucinations - Dad has these pretty much all the time but for him they have never been scary or unpleasant, the delusions have been a problem for everyone else but not for him as he is of course right and everyone else is deluded
- cognition can wildly fluctuate almost from one minute to the next.

Take care

 

[LisaV]

Thank you for your kind responses. He wasn't diagnosed with Alzheimer's with a scan - just on the basis of symptoms. He is now being referred to a neurologist, so I guess they will do a scan?

 

[Chizz]

Hello all
My poor Dad (82) was diagnosed with Alzheimer's just before lockdown. He is still just about hanging on with home-based care, while we wait for a place in a good care home to become available. He was in hospital a month or so ago after a fall, and treated for pneumonia we didn't even know was there. Since then he has become noticably more frail and has had some difficulties getting round the house. He's also getting some continence issues for the first time. All this in addition to ever worsening memory loss, anxiety, etc which just keeps getting worse.
A medical professional has now referred Dad for tests for Parkinson's because he is starting to tremor and he shuffles along much more than he did a couple of months ago. It's just one thing after another, and it's come as quite a shock.
If Dad were diagnosed with Parkinson's, or dementia with Lewy bodies, would this mean any change in his outlook or for the specialist care we should be making sure he gets? is there anything else we should know about this turn of events?
Grateful for any advice...
thank you.

If you want to @LisaV you can get the Local Authority Adult Social Services to visit your dad to make a care assessment - to set out the care they think in his condition he needs. Some areas have a wait for this, so you may have to press them.
Meds for P's are usually pretty helpful these days. (One of my friends who has P's, and has just been told by DVLA that he can no longer drive, still comes and plays doubles tennis with our group once a week. He's careful and takes it easy, but it shows what can be done. He just a bit tired sooner than the rest of us, which is not surprising.)
Best wishes and hugs.

 

[Melles Belles]

@LisaV
Some medication can be dangerous for those with Lewy Body Dementia - I thinks it is antipsychotics that should not be prescribed. Please check any prescriptions with a pharmacist.

 

[LisaV]

Thank you!

 

[Jorbla]

Hi
Take a look at the excellent Lewy Body Dementa Association website it contains so much information and they even have a downloadable wallet card that warns anyone reading it not to administer certain meds known to make Lewy Body Dementia worse.

My Dad was diagnosed with LBD in 2020 - I would say that the main things to bear in mind are
- the liklihood of hallucinations - Dad has these pretty much all the time but for him they have never been scary or unpleasant, the delusions have been a problem for everyone else but not for him as he is of course right and everyone else is deluded
- cognition can wildly fluctuate almost from one minute to the next.

Take care

Hi Louise, I am going through dementia with my husband. People keep asking me if he has been diagnosed. He has lost his drivers license several years ago and is progressively getting
more confused. He is good physically for an 80 year old. Drs say dementia on reports but where is this diagnosis to come from. It seems LBD to me but so hard to know. I am so tired of it all

 

[LouiseW]

Hi Louise, I am going through dementia with my husband. People keep asking me if he has been diagnosed. He has lost his drivers license several years ago and is progressively getting
more confused. He is good physically for an 80 year old. Drs say dementia on reports but where is this diagnosis to come from. It seems LBD to me but so hard to know. I am so tired of it all

 

[LouiseW]

Hi, I'm so sorry that you and your husband are going through this and having to deal wit the ambiguity that comes with it.

My Dad was diagnosed with Lewy Body Dementia in July 2020 in a skype consultation with a private specialist, using information supplied by Dads Gp and a scan that happened by accident - he had been to casualty having sustained a head injury in a fall and the scan that showed abnormailities was part of the post fall investigation nothing to do with the Memeory Clinic who had ordered no scans.

I was lucky to have been able to stitch togethwr the scan from the hospital, the GP comments on it and the availablility of a private specalist.

We saw the private specalist every 6 months in person for a while and he maintained his initial diagnosis having had the chance to assess Dad in person.

This is our story - I think problems with diagnosis are the norm so you are not alone if that is any consolation to you at this challenging time for your family.

 

[Chizz]

As I understand it @Jorbla the diagnosis is usually issued by a letter from the doctor at the local Memory Clinic, following tests they carry out by the doctor or a consulting nurse, following referral to the Memory Clinic by the GP. Sometimes GP and/or memory clinic organise scans, but not always.
Nowadays, compared with when my OH was going through this some years ago, there is a waiting list to get an appointment at Memory Clinic and the length of this will depend on your locality, staffing levels, number of patients seeking appointments, etc.
Friends of mine living on the Isle of Wight have been told they will have to wait 9 months to get a Memory Clinic appointment!
Best wishes.