• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

swmantic dementia

nummus

Registered User
Jul 29, 2005
1
Husband been diagnosed in the last year with SD. Have read and been told that AD treatments are not useful - does anyone have any experience of this? Am finding behavioural changes difficult to cope with especially with children in the family-any coping strategies would be gratefully received. Would just be good to talk to someone in same situation.
 

Matzu

Registered User
Jun 7, 2005
11
South Carolina
nummus said:
Husband been diagnosed in the last year with SD. Have read and been told that AD treatments are not useful - does anyone have any experience of this? Am finding behavioural changes difficult to cope with especially with children in the family-any coping strategies would be gratefully received. Would just be good to talk to someone in same situation.
Have read a lot about dementia over the years since my husband was dx with AD. SD is something I haven't seen before. I've always found this link to be informative. Hope you find a course of treatment that will help. God bless.

http://ci.columbia.edu/c1182/web/sect_5/c1182_s5_1.html

Matzu
 

Colin Cosgrove

Registered User
Mar 10, 2004
18
www.alzheimers.org.uk
Hi nummus,

Semantic dementia is a form of frontotemporal dementia. There is some concern that Alzheimer's drugs might worsen the symptoms of frontotemporal dementia, but I don't think that happens to everyone.

Have you seen the list of Alzheimer's Society factsheets? They might be able to answer some of the questions you have. Go to http://www.alzheimers.org.uk/Facts_about_dementia/factsheets.htm to view the complete list of sheets.

The Pick's Disease Support Group offers support to carers of people with frontotemporal dementia, including semantic dementia. If you haven't already, take a look at their website, www.pdsg.org.uk

I hope you find this group useful - there's plenty of people here who will help if they can.

All the best,
Colin
 

susie

Registered User
Nov 30, 2003
82
shropshire
Hello Nummus
My husband has fronto temporal dementia and AD. I agree that the behavioural changes are very difficult to cope with. I have found through trial and error that trying to ignore the childish behaviour is the best strategy - but I can't always and there is nothing wrong having a few quiet tears locked in the bathroom as it lets out some of the frustrations. One thing we have done is to tell as many people as possible about the illness so they will not be offended or upset by very direct comments or unusual behavior. If strangers are offended, a quick discreet explanation helps and often people are very understanding. If they take offence-tough because they would hate to feel how my husband does when he realises he's done something wrong. It is a tough illness and you need to take as much help and as many breaks as you can. If you are offered respite think about taking it as you need to keep your spirits up and your batteries charged, so keep posting and we'll try to help you.
Regards
Susie
 

zed

Registered User
Jul 25, 2005
76
London
I highly recommend the Pick's Disease Support Group. The next meeting is in London on 2 September.

My mum has frotal-lobe dementia. Her behavioural problems have been really hard to cope with. For example, she has trouble making sensible judgements. If I have to convince her that something is a good idea, I just have to be patient. For example, various people suggested she arranged for me and my sister to have power of attorney. She totally refused, and there was no convincing her. I just regulalry talked to her about it, and about 8 months later she finally agreed! The same with her banking, it took me a couple of months to convince her it was a good idea to let me look after her finances. When she digs her heals in, I just back down for a while so I don't stress her out too much. She agreed after about 3 months! At least know I can ensure that she doens't buy inappropriate things (like a car that bought not long before she was diagnosed, she is a small woman and the car was huge, she had trouble driving it!).

All her friends know about the illness so they understand why she might behave strangely sometimes, and they are all very understanding. But the other day I found out she had gone to a pub with the purpose of chatting up men (she has a boyfriend!). I just tried to explain to her that it was not a good idea to go to a pub on her own and talk to men that she doesn't know. I don't know if she understood though. Sometimes I wonder who is the daughter and who is the mother!

Once we found out she had frontal-lobe dementia, things started to make more sense. One of the symptoms can be lack of empathy for other people, not understanding their feelings. Once I realised that her extreme selfishness was part of the illness, it made me feel better. She has always been quite selfish in some ways, but the way she is now is much more extreme.
 

zed

Registered User
Jul 25, 2005
76
London
About treatments: we were told AD drug treatments such as aricept are of no use for frontal-lobe dementia.
 

susie

Registered User
Nov 30, 2003
82
shropshire
Hello Nummus and Zed
I thoroughly agree with the selfish part of the illlness. My husband has always been wraopped up in his sporting activities and now it is 100% worse with all he does. It seems as if Pick's disease magnifies certain character traits. Shame it's always the bad traits! As for empathy, my husband lacks any kind of emotion at all for anyone. This can be hard on the family at birthdays etc but we have learned to say "it's just the illness" a hundred times. For a wife to have your partner not responding can be very sad and lonely. I've found that trying to grow the skin of a rhinocerous can be useful and a sense of humour at some of the strange behavior. The Pick's disease Society has crafted some cards that you can carry to show people that your loved one's beavior is due to a brain disease so that may help you Nummus in bad situations.
Susie