BME Inclusion in National Dementia Strategy

Discussion in 'Dementia-related news and campaigns' started by arun, Jan 31, 2008.

  1. arun

    arun Registered User

    Nov 10, 2007
    London, UK
    #1 arun, Jan 31, 2008
    Last edited: Jan 31, 2008
    I am interested in finding out if persons of Black Minority Ethnic (BME) are being reached by the institutions such as the Alzheimers Society.

    Is the information and services being provided for persons with Dementia and their carers sufficiently relevant to them?

    Should there be consultations carried out within all communities.

    Where would it be best to carry out these consultations?

    Would anyone reading this thread be interested in participating in such consultations?
    This thread was edited to include the description of BME after Brenda and Brucies comments.
  2. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    What does 'BME' stand for please? :confused:
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Arun

    it is always a good rule of thumb to expand acronyms the first time they are used in a post - even if they have been used before elsewhere. People often come to a certain post without having seen an acronym even a few replies before.

    I have no idea, like noelphobic, of what this one means -a quick Google brings up "Black and Minority Ethnic", which is presumably what you mean?
  4. arun

    arun Registered User

    Nov 10, 2007
    London, UK
    #4 arun, Jan 31, 2008
    Last edited: Feb 2, 2008
    Setting aside the BME acronym which cannot be translated into the Indian language.
    I was surprised to discover that there is no word for Dementia in the Indian language too.
    So how is it and the symptoms being translated to other family members for whom English is a foreign language?
    How is Dementia perceived by Asian families?

    In our culture it is the duty of children to care for their parents when they grow old.
    Parents live in the same household as their childrens families.
    Dementia is not being necessarily being recognized and is being treated as part and parcel of the ageing process within these communities.

    The situation is not being helped with GP's not being able to perform early assessments or having experience to diagnose for Dementia.

    Some of us (from personal experience) are aware of how trying the symptoms can be with support and guidance provided by professionals.

    However if this support and guidance is simply not sought after. How detrimental must it be for families?
    Does this not impact the quality of care being provided to the person with Dementia?
    What is the reaction by other family members and friends?
    Are families being isolated and behavior of persons with Dementia being categorized as bizarre.

    We need to know more?
    Persons of BME communities should be encouraged to take the initiative for their voices to be included in the National Dementia Strategy.
    Thanks for the guidance on Acronyms Brucie.
    I am learning as I go along.
    BME is new to me. I thought I was Indian before I came to the UK. I then fell into a category of South Asian. Now I find out that I also fall under the BME umbrella.
    This being of less concern.
    The plight of persons from BME communities need to be heard.
  5. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    The Alzheimer's Society have fact sheets translated into many languages.
  6. arun

    arun Registered User

    Nov 10, 2007
    London, UK
    Thank you for bringing that to my attention.
    That would be a good start in the discovery process for a carer/person with Dementia.
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Arun.

    My husband is Indian, I was born in the UK.

    He has lived in the UK for over 50 years, and had UK nationality for 45 years, but is still a cultural Indian in many respects.

    And part of this culture causes him to refuse to accept carers into the home, refuse any outside help in the form of Support Groups or day care, and rely on me as his sole carer.

    Although he is very close to our son, he has only dropped his guard a handful of times, when he was unable to control himself.

    My husband will accept the attention of a uniformed female nurse but not one dressed in mufti. I think he would have been more accepting of the CPN had she been in uniform, but her lack of uniform, together with her lack of tact, caused her visit to be a disaster.

    My husband sees Alzheimers as a mental illness to be ashamed of.

    If you wish to take this further, please PM me.
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    #8 Margarita, Feb 1, 2008
    Last edited: Feb 1, 2008
    I went on a day course of diversity of culture with my local AZ day centre , They showed a video of Indian community they attitude how they perceive dementia, they also have a group in London , can't remember the Name .

    also a video of Black community attitude in how they perceive dementia , they also have a group in london .

    people from both Community , who run the groups in London where at the Course

    If you phone the AZ help line , they can tell you your local AZ group is and I am sure they must have the video they, the course was free . so you could ask if they running one near where you live.
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    #9 Margarita, Feb 1, 2008
    Last edited: Feb 1, 2008

    This is the group that run in London .

    I found that the Alzheimers Society where encouraging
    both community to use they day center , as So was both the other Groups .

    The videos would give you a good insight , answer all the above question


    found the thread that I posted about it, back in 06

    You may find this an interesting thread to read .
  10. arun

    arun Registered User

    Nov 10, 2007
    London, UK
    #10 arun, Feb 1, 2008
    Last edited: Feb 2, 2008
    I just wanted thank you all for the support by sharing your thoughts and insights with me. This is a great channel for information share. Here is something I need to share with you all.
    I have an aunt in India who devoted 17 years of her life towards fulltime care of her husband.
    Upholding traditional values of devotion to her husband.
    This though her husband had a history of abuse.
    After he passed away. Her issues were not over.
    She had to deal with irreconcilable differences that had formed between her son and daughter.
    They could not handle the difficulties thrown their way.
    These are the sort of issues that are hidden away.
    My aunt is now 75+, in financial difficulty and cannot look to her immediate family for support.

    There are no services or avenues for support in India.
    However it is not the same in the UK.
    We have the infrastructure for support.

    Our families uphold similar traditions. We face similar issues here.
    Our issues are universal.

    Should we drive ourselves and our families into the ground trying to cope with what Dementia throws our way? All this because Mental Health issues are a stigma in our community.
    We as a community have to understand that Dementia is from physical degeneration.
    There is no shame in it.

    The National Strategy for Dementia could be a pivotal begining into which we must try and get a foot in the door.
    Persons willing to provide their viewpoint into consultations for the strategy will only be helping those that are silent.
    They will be opening the door for silent sufferers (who are also possibly cutting themselves from friends and family),
    They need to realize they are not alone. There is help and support out there.
    They need not feel that they are posing a burden on their families.
    They will help make a difference to the quality of life for the generations to come.
  11. arun

    arun Registered User

    Nov 10, 2007
    London, UK
  12. KenC

    KenC Registered User

    Mar 24, 2006
    Co Durham
    Hi arun,

    It seems that there is a problem with some in the BME, because they tend to look after their own families in a close knit relationship, and do not always want to get involved with other groups for various reasons. I say this because in my volunteering work with the Society, I have met many who have said this, not because it is discriminating or for any other reason, but because it is tradition, and we have to respect that as a society.

    But as a member of the National Dementia Strategy, I think a lot of problems like this are being looked at to see how they can be fitted in with everyone else. This is going to be a very long process but we all hope that it will work for everyone who has a Dementia, no matter who they are or what culture they come from. I think it has to be said that as a person with Dementia I treat everyone the same no matter who they are or what their back ground is, and I think most people do the same.

    But as this is a Government run group we will have to wait and see what they come out with in the end.
    I know from my own experience that my own group is looking into Early Diagnosis and Intervention, which covers a vast area but it also covers everyone who has the illness. It is also taking up a lot of time at meetings and at home, so I personally hope that we will succeed in reaching everyone out there.

    The Alzheimers Society on the other hand does have many branches where we have a mixed population and that is brilliant, but I am not sure whether this happens across the country. It all depends on people coming forward and asking to become involved, because not everyone wants to, some still prefer to got it alone or keep it in the family, but I do know that the Society welcomes everyone.

    Like you we will have to wait a hope for the best.

    Best Wishes

  13. arun

    arun Registered User

    Nov 10, 2007
    London, UK
    #13 arun, Feb 3, 2008
    Last edited: Feb 3, 2008
    Hi Ken

    Thanks for your post.

    I was enquiring from my 82 year old uncle & aunt (who are part of a group of 60 South Asians 75+ , if they have any contact with persons/families with Dementia.
    They said that this was the first time they heard of Dementia.
    To their knowledge they are not aware of any person in their community with it.

    They suggested that sending a speaker to their group.
    Using news media as well as internet accessed by ethnic groups.
    May be the way to raise awareness.

    I agree with your view point about everyone being treated the same no matter what your back ground is.

    I wish your group great success. Have you heard of a new device called DETECT used to detect mild cognitive impairment in an easy to administer, inexpensive way in 10 minutes.

    Kind Regards

  14. Margarita

    Margarita Registered User

    Feb 17, 2006
  15. arun

    arun Registered User

    Nov 10, 2007
    London, UK
    Hi Margarita

    The biggest difficulty I faced was to convince my mother to undergo any sort of tests.

    My family tried to get Mum to see a Doctor about her issues for 20 years.

    Mum vehemently denied that there was something wrong.
    My Sis and I were accused of being influenced by and for ganging up with my Dad to have her institutionalized.
    Finally when she was weak from not taking her medicine, poor diet and not eating.
    We were able to get her diagnosed against her will.
    (Weak as she was, at the time somehow she found the strength to flee from hospital)

    Things were never the same with her and Dad after this.

    Mum must have known there was something wrong.
    I feel terrible that she must have suffered from shame thinking it was a Mental Disease she had.
    I am humbled by her strength of character in how she tried to cover it so that it would not stain our family reputation.

    I don't think DETECT is available in the UK.
  16. arun

    arun Registered User

    Nov 10, 2007
    London, UK
    Over the weekend met/emailed friends and some family about any interest in consultation

    Have discovered that Cancer, Heart Disease, MS and Schizophrenia are very much on the agenda of my friends and close family. Not Dementia....

    Any suggestions where else to try and generate some interest?
  17. arun

    arun Registered User

    Nov 10, 2007
    London, UK
    At an induction at the Alzheimers Society. I was introduced to an initiative called"Living with Dementia"

    There was a gentleman who in coordination with one of our branches that mentioned that "No one is in a position to determine what is best for a person with Dementia but the person with it."

    I think I am in full agreement with his words.
    There was so much he said that mirrored what my family went through.

    This is something that families face together.
    It pushes the very limits of what some of us can cope with.

    Perhaps there is no need to hear the voice of the BME communities.
    After all at the core of it all we are the same.

    Having said this. I can well imagine if my Mum and Dad lived here.
    My Sis and I would have encouraged my Dad to have used the services being provided.
    He would have stood a chance to have a fuller life than he did while caring for my Mum all alone.

    If there is no awareness amongst The BME. Families are going to have to continue to bear the pressure.
    Generations are going to feel it's effects.

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.