Dementia

[LindaK12]

My husband has PSP and probably has done for several years. After a spell in hospital his symptoms have increased and I am needing help that I didn't need before and I can't leave him unattended. He is now getting symptoms of dementia, confusion and imagining things. Has anyone else experienced this? On top of everything else this is extremely hard to deal with.

[Dadshelper]

It is not uncommon for patients to have a quick downturn after a hospital stay or illness. Sometimes they will bounce back to "normal" baseline. I don't have much advice other then try to get extra help and wait to see what happens over the next few days/weeks.

Ron

[NanBabs]

My husband had dementia with his PSP too and I found that more difficult to deal with than his awful physical symptoms. I think PSP tends to plateau then `go off a cliff` at times, which is what we experienced. It is all a very harrowing experience, both for the patient and `the carer`. I never took well to being `the carer` - I was a wife !!

xx

[LindaK12 in reply to NanBabs]

I'm with you there!

[Hidden]

Larry has periods of delusions and confusion. So far they have passed. They seem to be occurring more frequently lately. When they happen I humor him. It’s all part of the disease. Some people get it some don’t.

[LindaK12 in reply to Hidden]

You are right but it also depends on how low you are feeling at the time. Its not easy to be on top of everything ALL the time.

[daddyt]

More and more people with PSP are experiencing dementia as areas in the frontal lobe region of the brain continue to degenerate. A few like myself, experienced significant cognitive decline prior to the other classic physical symptoms. You may want to consider cognitive testing. An OT can help with planning strategies for your husband in the home if he continues to decline.

Tim

[Servena03]

Hello lindak12, my husband has had dementia symptoms just recently, it's in the early hours waking up, eyes staring looking lost, I sleep next to him, and I am tuned in to his condition to wake when something is wrong, I jump to his aid, he says where am i, I gently reassure him, he ask questions like, whose house are we in, whose bed is this, why are we here, once he said, are you Jean, that scared me and I agree it's an awful feeling will he come out of this. It takes me quite awhile to convince him he is safe and can now sleep, once he woke in the morning just in the same confusion until the care staff arrived to shower him, he recognised them and started to come round. I mentioned this to his hospice advisor, wondering if he has dementia as well as psp, she says it could be th e pain killers he's on and refer to my doctor, but don't feel convinced that they know enough, So sorry to say but find it reassuring knowing that he is not alone in this , and believe it's the brain and psp playing their dirty tricks. I feel for you as I am really scared too. It's so hard to cope with, a toil every day, and no hugs back for me. Thank God for this blog only we understand how it is, love you all xxx jean

[MWLE]

Try adding Alpha GPC 2-3 times a day. This helped my father (Parkinson) and my uncle (PSP mother side) is taking it to ward off dementia.

[EricaE]

Hello,

My brother has PSP and dementia and I'm very sorry to hear that, on top of everything else, your husband is showing signs of dementia. I know from experience how distressing it is and how hard it is to deal with.

My brother began to show signs of very mild dementia in autumn 2016 (increasing forgetfulness and confusion as to the time - mistaking night for day, day for night - and increased anxiety).

Early 2017 his GP referred him to the local Adult Mental Health Team. He was assessed and sent for a brain scan but before he was given the result a near fall backwards into passing traffic whilst out shopping led to an MRI scan. This, together with further physical tests, led to the diagnosis of PSP in June 2017 which, we were told by his Consultant Neurologist, he's probably had for years.

Following this diagnosis he remained living alone in his own home for 16 months supported by my sister and brother-in-law, me and my husband. But, as his mental and physical condition deteriorated, the only way we could comply with his wish to remain in his own home was to bring in an ever increasing number of carers until eventually, when he reached the point of needing care 24 hours a day, a team of nine carers plus family was needed from last July to last October to cover all the hours.

Unfortunately by October his increased confusion and agitation, the hallucinations, paranoia, aggression, attempts to "escape" from his home and frequent requests to neighbours to call the police, reached a point where residential nursing care was the only and best option and, until the day he actually moved into the home he had chosen, was what he said he wanted.

He continues to deteriorate physically and mentally but his condition is monitored and he is well cared for and, after a distressing start when he would plead to be taken home, six months on he is relaxed with the staff and, if not entirely settled, when he speaks of "going home" now it is to the house he shared with our parents until they died in the early 1980s.

Sometimes he has what I call "happy flights of fancy" other times "dark imaginings". He often refuses to sleep in his bed preferring the armchair in his room or in the hall and sometimes doesn't sleep at all at night but roams the corridors knocking on the doors of the other residents rooms. When the staff ask or try to persuade him to return to his room or go to bed he is sometimes aggressive to the point of physical violence but most of the time he is the funny, polite, gentle man he has always been. And he's always pleased to see us and we can still enjoy a chat and a reminisce and listening to music and doing crosswords together. But it's heartbreaking to see how much PSP has taken and continues to take from him.

It seems no two people with PSP are the same. There is only one other resident in my brother's nursing home with PSP and he doesn't has dementia and so I hope your husband's confusion and his imagining things is temporary but, if it isn't, that you find the support and help you need.

This disease is devastating for the person with PSP but also for their carer especially if that carer is their wife or husband or partner - any loved one. I wish you all the strength you need to walk this path together.

Erica xx

[rriddle]

If the hallucinations and confusion are due to delirium, caused by the hospital stay, you might ask a neurologist as to when that will resolve.

If the hallucinations do not resolve, then perhaps your husband has Lewy body dementia, and not progressive supranuclear palsy. Speak with an expert neurologist about that. Medication is available to help with the dementia, confusion, and hallucinations of LBD.

[LindaK12 in reply to rriddle]

Definitely has PSP. The dementia symptoms have only recently started but I don't really blame the hospital stay, just coincidental. Could be Lewy body dementia also. At the moment we are waiting on a urine sample as he has a catheter and could have a UTI as well.

[rriddle]

Of course "definite" isn't known until death and an autopsy performed (as a result of brain donation, for example). In 700+ brain donations, we haven't seen PSP and LBD co-occur. But we've seen plenty of people misdiagnosed with PSP (or CBD) when they actually had LBD.

Certainly a UTI could cause hallucinations and confusion. (Like delirium.) Not dementia.

[Khartt]

We are starting to have some of these issue after a rib injury and hospital stay. Did they ever resolve or get better for you? We found out steve has the very beginning of UTI but three days on antibiotic and he is still delusional