PCA dementia

kat69

Registered User
Jun 16, 2017
7
Hi I'm new to the forum and not sure if I doing the right thing. My partner was attacked 3 years ago and suffered a brain haemorrhage a year on he was diagnosed with dementia through the trauma of the attack. Since the attack he has gone downhill in stages (quite rapid) stages - he was recently admitted to hospital to try and get his medication right but very difficult as with his brain injury certain medication could cause a bleed on the brain. He was eventually put on airpirazole which I feel has made things worse - he is having a SPECT scan next week to confirm their diagnosis of PCA dementia - his eyesight has deteriorated and his visual concept is very poor. Just wondering if anyone has any information on this type of dementia. He came home on Monday from hospital but struggling as he cant find the toilet all the time and does not respond when I try to show him where it is. So most of my days are mopping and scrubbing carpets - any help or suggestions would be much appreciated.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,491
Yorkshire
hi kat69
a warm welcome to TP
there are members here who are caring for someone diagnosed with PCA, so given time they may see your thread and respond with suggestions

I wonder whether this site may be helpful
http://www.raredementiasupport.org/pca/

apologies if this isn't helpful - maybe try a sign for the bathroom/toilet, the type used for public conveniences - and a red toilet seat - most bathrooms are predominantly white so everything 'disappears'; the red helps to distinguish the toilet bowl
also consider different flooring eg rhino lino
and maybe start to use pull-ups for your husband instead of his usual underwear - ask to chat with the continence nurse at your GP surgery

was a care package put in place before your husband was discharged, as these often include a visit to the home from an Occupational Therapist to suggest aids and adaptions - maybe have a chat with your GP and your husband's consultant for a referral - and contact the Local Authority Adult Services for an assessment of your husband's care needs, and a carer's assessment for yourself (you both have a right to these) as support may be available through those - tough as it may be, be brutally honest with medics and Social Services when contacting them, as otherwise it'll be assumed that you are coping and you'll be left to get on with it

and have you looked into Attendance Allowance, and contacting the Council for a disregard of Council Tax in respect of your husband, so you at assessed at the single person's rate - both will help with finances
https://www.gov.uk/attendance-allowance/how-to-claim

you definitely did the right thing joining TP - there's lots of support and understanding here - so keep posting about anything that's on your mind
best wishes
 

kat69

Registered User
Jun 16, 2017
7
Thank you so much for your reply/help sorry for late reply been up to met elbows in in lol it has been so helpful thank you
 

Sammyjo1

Registered User
Jul 8, 2014
194
Hi Kat

Welcome to TP. My husband was diagnosed with Alzheimers disease 3 years ago and in the last year or so it was confirmed to be PCA. I'm so sorry that you are having to face the consequences of this, especially as it started from such a tragic incident. This is a really supportive place to find out more and to get support

If you are on Facebook, there are a couple of groups on there which are useful for getting information from carers of people with PCA and people with PCA themselves. The groups are Posterior Cortical Atrophy Awareness and Posterior Cortical Atrophy Early Stages . If you can get access to the groups, they have a very useful document outlining the stages of PCA which you might find useful (if a bit scary)

There is also a Rare Dementia Support Group (http://www.raredementiasupport.org/) which includes PCA and they have regional groups in some parts of the country (assuming you are in the UK).

it is quite challenging living with someone with PCA as their symptoms are so unusual and the inability to recognise their surroundings or see things in front of them can be quite distressing both for them and for their carers. Losing the ability to read is also typical of PCA; my OH describes it as being unable to join the words into sentences although he can recognise individual words

Good luck with everything and please don't hesitate to ask any questions - we're all in this together
 

Rich PCA Carer

Registered User
Aug 31, 2015
108
North Gloucestershire, UK
Hi Kat, I really feel for you and your husband having to cope with this as a result of an attack. Most PCA is caused by Alzheimer's and this results in a relatively predictable slow progression. It is far more difficult to understand how the PCA will develop when it has been caused by a trauma, with the potential for further vascular problems. The SPECT scan should help the clinicians understand the extent of the damage.
The spatial disorientation is part of PCA and you need to find a way to help your husband navigate your home. He will be very difficult to reassure since the onset of his problems has been so rapid. It will be very difficult for him to understand why he can't remember the layout of your home, or how to accept help. He will fight every step to retain his independence, but he has to learn when he needs help and how to accept help.
Please keep posting the issues you face and we will try to help you.
Best Wishes, Rich
 

kat69

Registered User
Jun 16, 2017
7
Hi Kat, I really feel for you and your husband having to cope with this as a result of an attack. Most PCA is caused by Alzheimer's and this results in a relatively predictable slow progression. It is far more difficult to understand how the PCA will develop when it has been caused by a trauma, with the potential for further vascular problems. The SPECT scan should help the clinicians understand the extent of the damage.
The spatial disorientation is part of PCA and you need to find a way to help your husband navigate your home. He will be very difficult to reassure since the onset of his problems has been so rapid. It will be very difficult for him to understand why he can't remember the layout of your home, or how to accept help. He will fight every step to retain his independence, but he has to learn when he needs help and how to accept help.
Please keep posting the issues you face and we will try to help you.
Best Wishes, Rich
Thank you so much for your support unfortunately the situation has spiralled out of control and I had to call the doctor out to him yesterday as he became violent - the doctors have referred him to the crisis team and I am now waiting on an assessment from the mental health team and then he will be going to hospital so very sad as I know he would be horrified at his actions. I will keep you posted and thank you again for your help.
 

kat69

Registered User
Jun 16, 2017
7
Thank you for your kind words and help unfortunately my partner is due to be admitted to hospital due to a violent outburst. I will try to update the forum when I know what is happening.
 

Rich PCA Carer

Registered User
Aug 31, 2015
108
North Gloucestershire, UK
Thank you so much for your support unfortunately the situation has spiralled out of control and I had to call the doctor out to him yesterday as he became violent - the doctors have referred him to the crisis team and I am now waiting on an assessment from the mental health team and then he will be going to hospital so very sad as I know he would be horrified at his actions. I will keep you posted and thank you again for your help.
I am so sorry to hear this. He must be terribly disoriented to act so out of character. The loss of understanding and control is very difficult to accept.

Thinking of you both and hoping for the best.
Rich
 

Sammyjo1

Registered User
Jul 8, 2014
194
I'm so sorry to hear this Kat69. What a very worrying time for you. I hope you are able to get some support while all this is going on.

Take care of yourself and i hope the medical staff will be able to take good care of your husband