Asian Families and Dementia

[sweetmole]

Hello
I have what may be a rather bizarre topic to discuss.

So from the headline you will probably gather that my family is Asian. I just wanted to know if certain cultures treat dementia in different ways? Good and bad.

One of my aunts said that in our culture we have no word for 'dementia'. So you are either called normal or 'mad'!!!!!!!!!!!!!

I really detest this label and I know that people in my mum's 'former' circle of friends had been treating her badly and excluding her from social gatherings and so on. I used to think her increasingly argumentative nature was because she had few close friends and only had my dad, brother and me. But now clearly her brain doesn't work in the same way anymore.

So, does anyone know if the Asian community is like any other? My dad was reluctant to tell people she had been diagnosed. He said no people will take advantage. I screamed at him. I said people are doing that anyway. Being rude, excluding her, looking at her funny, not talking to her anymore, making fun of her odd behaviour. Seriously how worse could it get? My mum is so isolated.

I decided to start telling people myself when mum went into hospital recently and these same 'friends' were ringing the house and my mobile non stop to ask how she was. Yet not one person came for a cup of tea when she was out of hospital. I said to one Aunt I wanted to let you know that mum has been diagnosed with dementia. The reply 'oh yes I know'. And I thought well if you know then why do treat her like ****? I then realised that telling my mum's friends seemed to have little impact.

I asked my mum's Consultant how many Asian patients she has. She looked at me and said not many!!!!!!!!!!!!! HUH! How can this be?

This disease does not pick and choose which ethnicities to descend upon.

So, please anyone with some advice, knowledge, anything please reply. Are we under-educated, ignorant in this field? Or do we have parents with dementia left untreated and just at home. And no one talks about the changes in behaviour and care needs? I do not know any other relative, friend, friend of a friend who is in a care home, or has home care. Nothing?

 

[hollycat]

This link might be a place to start a little research and reading

http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=1815

Hope it helps

 

[sweetmole]

This link might be a place to start a little research and reading

http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=1815

Hope it helps

Wow, I love the link. So grateful for your post.

A few years ago mum would buy these dolls as presents for my cousins children. One child was frightened of the singing and noises from the doll. My cousin's husband got really angry and told my mum to take the doll away and never bring it back. My mum came home very upset, I tried to explain that not everyone likes these dolls but she just didn't get get it. Now I know why. So my mum stopped getting invites to this cousin's house.

Only last year was she diagnosed. But this happened like 3-4 years ago. I'm not expecting everyone to just suddenly be empathetic. But it is heartbreaking how some relatives have behaved.

 

[Christin]

Hello Sweetmole, while I suspect that different cultures may treat dementia in different ways, I also suspect that many do hesitate to step into the limelight. Certainly I have read many times on TP about families asking whether they should share a diagnosis or keep quiet. I believe that happens in all communities.

So much depends on individual attitudes. In my own opinion, I do think its best to share, to help others understand what is going on. I think that any family will have some who will understand and care, and others who feel unable to do so, for whatever reason.

I hope you feel able to share concerns you have on TP and that you will receive help and support here.

I also found this while searching the AS website, perhaps it might interest you.

Overcoming Obstacles

My very best wishes to you. x

 

[Contrary Mary]

I haven't stopped to read it yet, but you may find it interesting

http://www.scie.org.uk/publications/briefings/files/briefing35.pdf

 

[sweetmole]

Christin
Thank you so much. This forum has been invaluable. I was even talking to a Caribbean friend last night and discovered that both her parents had been care home nurses! I then asked how many people from her own culture were in the home and she said do you know what, none!

I do know that certain cultures look after their elderly at home. I am not for one minute saying at home care is better than care home. I just am really curious how many Asian families do take the decision to put a family member in a care home?

Here's to 2013 and breaking down barriers and stigmas.

 

[jan.s]

Here's to 2013 and breaking down barriers and stigmas

I'm with you there! Strangely, my husband would;t allow me to tell people about his dementia, I think because he couldn't accept it and if no one knew it might go away! It didn't, so I have just sat and written a letter to many friends who are unaware to update them. It has been a hard letter to write.

I am glad that you are addressing issues for your mum's sake. Keep going. You will be well supported on TP.

Jan x

 

[Saffie]

There are 80 beds in my husband's nursing home and not one is occupied by a person of any other ethnicity than white British. Some of the nurses are from other cultures as are a few of the carers, though mainly the male carers. I've just assumed that other cultures are happier to care for the relative amongst the extended family. So many families are spread far and wide these days.

 

[sweetmole]

I'm with you there! Strangely, my husband would;t allow me to tell people about his dementia, I think because he couldn't accept it and if no one knew it might go away! It didn't, so I have just sat and written a letter to many friends who are unaware to update them. It has been a hard letter to write.

I am glad that you are addressing issues for your mum's sake. Keep going. You will be well supported on TP.

Jan x

Hello Jan
Even my mum's sister is in denial! I thought she could be my mum's voice in the community as she seems to be well respected among the social circle. But oh no, her logic was 'how come, but your mum dresses immaculately from head to toe? Her earrings match her sari, to her shoes'. I tried to explain that this means nothing. I think I will write a letter with as much info as possible and just tell people.

One other thing, when they do the memory tests, why do they conduct all these in English? I remember my mum not understanding questions, and though she speaks English very well, when I explained in our language she got it.

When I was breaking down in tears one time because my dad and brother were of little support, another aunt said oh well no use crying, just got to get on with it.

Yeah, OK, so will she be coming to visit me when I am in hosipital?

 

[sweetmole]

There are 80 beds in my husband's nursing home and not one is occupied by a person of any other ethncity than white British. Some of the nurses are from other cultures as are a few of the carers, though mainly the male carers. I've just assumed that other cultures are happier to care for the relative amongst the extended family. So many families are spread far and wide these days.

Well, perhaps that is the case. But was talking to someone about this some time back. I said how do we deal with incontinence and behavioural issues. This person said well they are just left and changed once a day and abused at home. Broke my heart hearing this. I can see this happening at home. My dad has already started to shout at my mum, calling her all kinds of names. I know he can't deal with her screams and bashing things. But I do believe he hit her the other day. She was making loud noises and he could not take it. BUT hitting her? Really what do I do? If I see him being physically abusive I will lose it.

 

[wobbly]

My husbands family are Jewish and from Manchester and there they have quite a few Jewish carehomes. His grandma, two maiden aunts and his dad have all been cared for in one when their condition got too bad to be coped with at home.....

 

[sweetmole]

My husbands family are Jewish and from Manchester and there they have quite a few Jewish carehomes. His grandma, two maiden aunts and his dad have all been cared for in one when their condition got too bad to be coped with at home.....

Yes a friend of mine is a heating engineer and he does maintenance at several Jewish care homes. Its a great idea. I didn't understand what a Jewish care home meant at first, but it makes such great sense. Maybe one day we have Muslim care homes. Or maybe some exist and I have no clue

 

[jan.s]

Dear Sweetmole, Dementia is hard for anyone to accept. But I can see that you are caring and protective of your mum. Your mum needs you. Could you sit down quietly with your aunt and appeal for her help, explaining that dementia affects people in different ways at different times, and that both you and your mum need her support.

Your brother is, not doubt, following the lead of your dad, and I feel you may well have a battle to get them onside.

I think with the memory tests, you could ask for a translator to help your mum, or ask if you could translate for her. I can't see how anybody could object.

I feel you certainly need to contact Social Services for support, especially if you think your Dad may be hitting your mum; that is totally unacceptable. Before you have any meeting with them, make sure you have a list of the problems your mum has and how you would like SS to help you and her.

I have found it very useful to keep a diary of events. It is always helpful to be able to say what has been happening, as this can help consultants and SS to see a bigger picture.

I wish you well.

x

 

[nellbelles]

Yes a friend of mine is a heating engineer and he does maintenance at several Jewish care homes. Its a great idea. I didn't understand what a Jewish care home meant at first, but it makes such great sense. Maybe one day we have Muslim care homes. Or maybe some exist and I have no clue

Here in Leicester we have West Indian and Asian day care centres and care homes, not sure about Muslim ones though. Hopefully it will come, it must be so difficult if your second language slips away.

Helen x

 

[sweetmole]

Dear Sweetmole, Dementia is hard for anyone to accept. But I can see that you are caring and protective of your mum. Your mum needs you. Could you sit down quietly with your aunt and appeal for her help, explaining that dementia affects people in different ways at different times, and that both you and your mum need her support.

Your brother is, not doubt, following the lead of your dad, and I feel you may well have a battle to get them onside.

I think with the memory tests, you could ask for a translator to help your mum, or ask if you could translate for her. I can't see how anybody could object.

I feel you certainly need to contact Social Services for support, especially if you think your Dad may be hitting your mum; that is totally unacceptable. Before you have any meeting with them, make sure you have a list of the problems your mum has and how you would like SS to help you and her.

I have found it very useful to keep a diary of events. It is always helpful to be able to say what has been happening, as this can help consultants and SS to see a bigger picture.

I wish you well.

x

Hello
This is the joke. In the family I have had the worst relationship with mum. Yes I think when my head is clear I can sit down with my aunt. I think I haven't so far because I'm not sure what help to ask for. But it is become clearer as I spend time on this forum.

But to be honest, I feel that at some point I will be driven away and forced to let my dad and brother get on with it. I need to focus on myself as well, otherwise I will be 60 and wondering where my life went. But I'm not giving up without a fight.

I just need to deal with my disgust at my dad and brother. I just spoke to an aunt whose husband needed a carer as he was paralyzed. I thought she might point me in the right direction. Oh well you just have to get on with it? is what she said. REALLY.

 

[sweetmole]

Here in Leicester we have West Indian and Asian day care centres and care homes, not sure about Muslim ones though. Hopefully it will come, it must be so difficult if your second language slips away.

Helen x

This has to be the way to go right? For sure. Pity dementia is on the increase with austerity measures. Such a pity

 

[sweetmole]

I haven't stopped to read it yet, but you may find it interesting

http://www.scie.org.uk/publications/briefings/files/briefing35.pdf

Very useful many thanks

 

[LadyA]

In the last ten to fifteen years, Ireland has had such a huge amount of immigration, a lot from Eastern Europe, but many, many from Africa and Asia too. I do remember the question being raised in training classes several years ago, about care homes and residents of a different culture - or even day care centres. No conclusion was reached though, because so far, it just hasn't arisen. Yet, I see many quite elderly people among the Asian community here - always with younger relatives.

I do have maybe a little insight into the problems of one-culture care facilities though. I'm in Southern Ireland, which has always by tradition been Roman Catholic. My husband and I are not Catholic though - we aren't Protestant either. We fall into a very "minority" Christian group, and Wm was a Minister for all his adult life. Anyway, it was arranged for him to attend the local Alz. Soc. Day Centre one day a week. He went twice, and refused to go back - he hated it. And one of the problems was that they were saying prayers the days he was there, and they were Catholic prayers to Mary, and he was both unfamiliar with them, and would have been uncomfortable with them. But I could see that it would have been a very familiar and comforting ritual for the other clients at the Centre. So, the question is - how do we keep that comforting and familiar culture and yet make our Day Centres and Care Homes multi-cultural? And the problem of losing what would be a second language, and going back to the language of their youth is another one, isn't it? I was interviewed one time by a woman who wanted a home carer to live in with her mother, who had Dementia. She said her mother couldn't go to a Day Centre or a Nursing Home, as she was Swiss by birth, and as her Dementia had progressed, she had lost all her English, and reverted to her native language, and so couldn't communicate with people around her here anymore. I didn't take the job - I don't speak Swiss German, and don't do live-in work anyway.

Sweetmole, you have my sympathies and blessings as you proceed. Let us know how you are getting on. Once you cast your net out for information and support, you may (hopefully!) find that there is more out there than you know.

 

[garnuft]

I haven't read the posts in reply.

I hope you help to change any negative bias that is within your community,
as I seek to do the same myself.

Gwen XXX

 

[cragmaid]

My Mum has Dementia...it's an incurable illness but you can't catch it.

I have told everyone about my Mum....We and she need help from each and every person who can give it. I won't allow the word "Mad" meaning insane to enter the conversation and I tell Mum off when she has called herself stupid for forgetting something. She is not mad, she is not stupid....she is ill. She might behave in an evil way sometimes, ( and does regularly)she certainly can drive me potty, but she did these things before the illness too.
I know that there are people in all cultures who find the thought of mental illness to difficult to face, but it is a fact of life and refusing to acknowledge it is a far greater crime in my book than having a " daft" relative!
If the time comes that you think your input is not wanted, or that you are being driven out, you MUST report your concerns to the Social Services, using the words vulnerable, and elder abuse. Even if you cannot protect her, you need to be a voice for your Mum.
Keep posting and good luck.x.