Non White/British Culture & Dementia

[Auntiep]

I'm sorry if this has been discussed elsewhere, but I couldn't find anything. I mentioned it in another post of mine, but got no response on this issue (lots of help on other issues, which I am grateful for )

Is there anyone who has experience caring for someone with dementia from another culture? I know in our culture use of outside carers and care homes is frowned upon for people who have children who can look after them. Just wondering if anyone else is facing this problem. My Mum has Vascular Dementia, and at the moment I'm looking after her at home, but struggling.

Is there any data about other ethnicities accessing support from Alzheimers Society/Social Services, etc.

Thanks in advance

P x

 

[MERENAME]

I don't have any experience of this but I would look into getting direct payments through social services and employing a helper/carer who spoke your mothers native language. You would also have more control over what the carer did and didn't do.

 

[Brucie]

Hi Auntiep

You ask an interesting question.

It is simply my opinion, but I think that ethnicity tends to go out of the window when mid term and advanced dementia come in the door. As an example, we are overseeing care for a 92 year old Welsh lady at the moment. While in the assessment ward, where she was until just before Christmas, the carers, nurses and doctors were a total mixture from all parts of the globe. Now she is home, she has carers come in, morning and evening, and they are always of different ethnicity from her own.

It is possible that you will find that the ethnicity of the carers on offer may better match that of your Mum than you may think.

When we see anyone who is involved in the care of our lady who also has vascular dementia, it is the ability to do the job that we consider first, but then, almost more importantly, how they - at a personal level - can relate to the person for whom they are providing care. That determines to a large degree whether the person will accept their care.

In my experience this last point is one of the most important, and, bizarrely, it is another case where it is the person, not their ethnicity that is paramount.

 

[sue38]

You might find >>this report<< helpful. Page 21 onwards talks about 'community persepctives' on care of the elderly, essentially the view in some communities that families should look after their own.

If you go to the main AS website and type 'BAME' in the search box it brings up a number of articles.

 

[Grannie G]

Hello AuntieP

My husband was Indian but had lived in the UK for 50 years and married to me , white British, so was quite Anglicised.

Even so, he still retained his cultural conditioning.

He didn`t like support groups nor could he join in the old time sing songs, nor would he have wanted to even if he had known the words.

The first home visit we had from an Occupational Therapist made him so angry he walked out of the door and stayed out for a couple of hours. This might give you an indication of how resentful he was to invasion of his privacy.

I looked after him at home and when anyone visited , from Social Services or even his Community Psychiatric nurse , I spoke to them in the kitchen so he would be left in peace.
I made sure all visitors agreed to this and respected his privacy.

When the caring became too difficult, I managed to get agency carers in on the pretext they were there to help me, not him. I was lucky with the care agency who were flexible and adaptable . My husband was happy I had help with the housework and the skill of the `carers` meant they slowly earned his trust. They began by offering to make him a cup of tea and eventually he allowed them to help him with personal care.

I managed to get some time out by telling my husband I was embarrassed sitting around while others did my housework so he would stay at home and make sure everything was all right while I did the shopping.

As his dementia progressed he became more accepting of strangers helping him and when the time came for residential care he accepted it . It did help that his care home was owned by two people from Mauritius and the care staff were a multi cultural mix.

I`m sorry this query was not addressed the first time you raised it and hope I have been of some help.

 

[ohno!]

My husband is HK Chinese, once most families kept dementia affected members at home within the family unit. Over the last ten or so years we have seen more daycare facilities popping up in HK, the shift to this type of care seems to be fitting in with the change in acceptance of the condition as a whole. While out in HK this summer I was shocked to see how well integrated elderly care had become.
Here in the UK we have friends that run a few residential homes that have seen an increase of clients from Asian cultures.

 

[Auntiep]

Direct Payments?

I don't have any experience of this but I would look into getting direct payments through social services and employing a helper/carer who spoke your mothers native language. You would also have more control over what the carer did and didn't do.

Thanks, I would love to get a carer of the same nationality - how do direct payments work? Would this be possible?

 

[Auntiep]

Thanks Granny G and Ohno, it's good to hear from those who have similar experience.

How did the 'extended family' respond to use of outside carers/nursing home?

P x

 

[Auntiep]

You might find >>this report<< helpful. Page 21 onwards talks about 'community persepctives' on care of the elderly, essentially the view in some communities that families should look after their own.

If you go to the main AS website and type 'BAME' in the search box it brings up a number of articles.

Thanks this was a very interesting ready - some points made a lot of sense, especially about times Mum might remember easily. Maybe this explains some of her aggression when in hospital, etc.

Px

 

[MERENAME]

re direct payments

Hope this helps

http://www.carersuk.org/help-and-ad...rt/direct-payments/direct-payment-quick-guide

 

[Auntiep]

Hope this helps

http://www.carersuk.org/help-and-ad...rt/direct-payments/direct-payment-quick-guide

Thank you, that whole website looks really helpful, I've bookmarked it!

P x

 

[Grannie G]

How did the 'extended family' respond to use of outside carers/nursing home?
P x

I was thinking about this last night AuntieP and realised you hadn`t had an accurate answer to your question which was really about the influence and approval of the wider family.

My husband had no blood related family in the UK so we were not open to criticism. I`m afraid if he had had family here who weren`t happy with my care I would have asked them to either share the care with me or keep their opinions to themselves.

 

[Auntiep]

I was thinking about this last night AuntieP and realised you hadn`t had an accurate answer to your question which was really about the influence and approval of the wider family.

My husband had no blood related family in the UK so we were not open to criticism. I`m afraid if he had had family here who weren`t happy with my care I would have asked them to either share the care with me or keep their opinions to themselves.

I'm afraid I haven't built up the courage for that yet! I have enough problems with some of the relatives when I suffer with anxiety and depression and have to take medication



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[Auntiep]

I wonder if I ask those who have loved ones in care homes whether there are many non-whiite 'residents' it might give me an idea?

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[copsham]

I wonder if I ask those who have loved ones in care homes whether there are many non-whiite 'residents' it might give me an idea?

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The care home with nursing that my mother is in, is very predominantly white. When I spoke about this with a member of staff they said that it was because "we look after our own". I hope it is a genuine choice and not about the difficulty that it is to access the services. There is one woman resident who is from India and she does not seem to have any relatives visiting often. There is another "Asian" woman a permanent resident who goes home most weekends. There is a male resident from the middle east who my mother assumed was the owner because he was a man!

The staff at all levels are from different countries inc Zimbawe South Africa, Lithuania, Philipines, Mauritius and UK. My mother is always singing their praises, recently to CQC inspectors!

 

[Saffie]

I have to say that in a nursing home that can take 80 residents but has only 60 at present, I have not yet seem any from a non-British culture, non-white culture in nearly 4 years. In fact my husband is the only non-English person there at present and he is Welsh! The carers are from mixed cultures but many are English too.

 

[Witzend]

The care home with nursing that my mother is in, is very predominantly white. When I spoke about this with a member of staff they said that it was because "we look after our own". )

I had a conversation on this topic with Indian friends who mostly live in Mumbai but visit every summer. I said it was often bewailed in the media that we Brits are callous and selfish to put our frail and elderly in CHs, whereas other cultures look after their own. The woman has a very elderly mother with dementia, which is how the conversation arose. She said it was rubbish to suggest that in India, at least, people necessarily do the caring themselves. Her own mother lives some distance away, still in her own home, but with two permanent live-in carers. As she pointed out, such things are relatively far cheaper to organise in India, but for those who cannot afford it there is usually literally no other option but to do the caring yourself. She freely admitted that she could not possibly cope with her own mother full time.

Another factor I think, for certain cultures within the UK, is that extended families tend to stay together, either in one house big enough, or very close by, so that unlike for many of us the care can be shared. In white Brit culture families are so often widely scattered, and of necessity the majority of the care so often falls on one person, who may well eventually find that the strain and exhaustion are just too much. My own family and OH's are both widely scattered, and we have both been blessed in having no 'invisibles' , but the reality of geography has meant that there could in both cases (my mother and his father) not be much sharing of care at all.

 

[BR_ANA]

I live on Brazil. So maybe my career breakdown could help you.

I had a 8hrs help to let me work. I was working 20/7 on job and to mom. Sleeping lass than 3 hrs every day. Luckly a friend visited and found a CH for mom.


On CH there was old immigrants from several countries. Ie Japan and Italia. The most challange to the residents seemed to be food and language.

 

[Auntiep]

Thanks everyone I really appreciate your input. As you say some cultures have larger families and/or extended family close by. Unfortunately I'm Mum's only child.

As I thought not many black/asians seem to make up CH residents. Care at home would be an ideal solution, but expensive possibly? without direct payments/funding.

P x


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[Auntiep]

Then invisibles attacked. I said I didnt want care anymore. If they wanted mom out of CH all I could do was sit with her 2 hrs per week. Then I hide from them for 2 months - I moved to an hotel. They visit mom 2 times a year.

Thanks for this, you understand exactly how I feel! Some family members are thousands of miles away yet still have no hesitation in sharing their opinion and criticism :banghead:

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