I am wondering if there any any African Americans on this site....everytime I go to different support groups there are always just one person there. I know Ftd AD and all the other dementia's are common across the board but it seems there are not on any message boards , etc. Just Wondering if someone can relate on certain issues I am dealing with being African American
angelb interesting point. I am a nurse (home health). My husband is in a dementia facility. I never saw an African American patient with AD and there are none in my husband's facility. I live in an area where there are many minority groups and I started to question this point. At one time I was in an AD caregivers group on line which was quite large. Only one black woman was in the group and she lived in Hawaii. After much research and many questions asked it seems Afro Americans in my area are not diagnosed because families don't consider dementia a treatable disease-thus it is not diagnosed as often. Marsh in our group is an MD in the state of Maine. I believe he once said he had seen only one Afro American in his practice. If you want more information or wish to persue finding other Afro American care givers let me know and I will try to help you.
Most patients in DH's facility were white, like us, but there were some blacks. Maybe, as bluedaze writes, it's an attitude toward dementia, but at the time I thought it was that they have more extended families to help w/the caregiving. However, if you go to alz.org, they have a lot of info on the subject, Donna Brazile is also active in AD. I do know that cultural differences in any group have a profound impact on diagnosis and medical care. I knew of at least two white families that would never take their loved one with dementia to the doc. They were in denial & embarrassed.
I think it's well known that where there is an African-American family or extended family, they will take care of their own. However, my Mom is in a NH in North FL, and I would guess that about 1/2 of the patients are African-American - most with some sort of dementia.
Thank you for bringing up this issue. This website reaches millions in at least 5 countries that I know about (there may be more), so it would certainly stand to reason that we would have a cross section of diversity, but we do not.
Much of it is cultural. Depending upon the culture, dementia is considered either a stigma not to be recognized or discussed, or something the family handles themselves without outside help.
According to our neurologist, many in the African American community have large extended families that take care of their LO with dementia by themselves. This is by no means standard practice with all African American families, but it is what he has observed.
There was one informational TV news video on an African American wife who was caring for her husband, and their daughter moved in to help. I will try to find it in my video section.
Since you have a spouse with dementia, (FTD, if my memory is correct) this is certainly the right place for support for you, but I would like to hear what issues are troubling you in relation to being African American. Maybe someone here can help.
If you recall the HBO Alzheimer Project, the young girl who was reading to her grandmother was African American...She touched my heart when she asked her grandmother why she was so angry with her. Do you remember her? Many of you know I was active internationally with the Girl Scout organization. In one trip to celebrate the Silver Jubilee of Scouting in the Philippines, we spent a long afternoon talking about the difference in our two cultures. I will always remember one question a Filipino college student asked our panel. She asked, "Why do so many Americans send their elders off to Old Age Homes when they are no longer useful in the home?" I could answer that in our culture, both the mother and father work away from home and there is no one left in the home to care for the Grandparents, but their families work outside the home as well. They take turns (within the family structure) caring for their elders, just as the elders had cared for them in years past. We can all think of answers to this girl's question, but it was interesting to know that they were so puzzled by the casual acceptance of this practice in the US.
Not to sidetrack - but life expectancy in the Philippines is about ten years less than here, so it's quite likely that the presence of dementia is probably much less as well.
I don't think the symptoms of AD are going to discriminate on the basis of ethnicity. Same problems, same questions, same species. Ask away. (or provide insight, as the case may be.)
Bluedaze, your memory is excellent. The only AD patient I saw after Aricept came out was African-American, cared for by his wife. There was no other family around that I knew of. I couldn't convince myself, or the wife, that the Aricept did anything.
The question of why other countries think Americans casually ship our elderly off to a facility has come up before. Those of us who have been FORCED to do so have not done it without great sacrifice and trauma. It may look easy to the outsider--it's anything but. Few of us have extended families and even when we do, everyone is either outside working, in college, has their own small children, etc. Often enough it is the BEST thing we can do for them. Most of us do not have any caregiver training--we just fly by the seat of our pants, doing what we think is right. But we cannot take the place of trained professionals 24/7--we just aren't there. Nor can we be expected to do EVERYTHING else that staff does that is not direct hands-on care. We have to shop, cook, clean, do laundry, drive to endless doc visits, paper work that never ends, change beds at 2a.m., on and on. Used to be that most people had extended family and often someone in the home to help, but we don't live that way today. Sometimes I wish we still did. I believe that most of us do the best that we can given the circumstances. I also know some Filipino families, Nancy, and they live in family compounds, as do other cultures. It's nice.
Betty and Nancy = I think another road block to family taking turns helping is that employers in the US are not very open to letting someone take time off every few months for their rotation. They will just fire you if that is what you want to do.
I read somewhere that the Asian continent has the highest rate AD and by 2050 (or somewhere around that) 50% of the Alzheimer's cases will exist in Asia. I thought that was strange since so much is made of their healthy diet of fish and vegetables.
Angel - the visual evidence of the black community being afflicted with AD and other dementias may also be due to medical insurance to cover medical care, so they do not even go to the doctor. That is sad and unfortunate because for many the AD drugs do slow down evidence of the symptoms.