Stigma is defined as ” a mark of disgrace associated with a particular circumstance, quality, or person.” Many people are hesitant to openly admit that they have a medical condition. In the case of Alzheimer’s, I think it is partially due to ignorance on the part of the public because they don’t understand it. It is not a communicable disease, I am not going to give it to anyone. But I think it goes a lot deeper than that.
We didn’t want the diagnosis. We wanted to blame something or someone. We really didn’t want to know what we didn’t know. Even though I knew something wasn’t right, part of me didn’t want to admit that I might have “something” other than residual stroke symptoms. I think part of the fear associated with this in the case or Younger Onset is the unknown in regard to the future of your employment, family, and financial security. We were not ready for retirement mentally, socially, financially and now our career is in jeopardy. So we ask ourselves, at what point in the future will we be committed to a long term care facility?
Diagnosis could test relationships. My family has been extremely supportive, open and ready to help in any way. My neighbors and friends are also supportive, open and in most cases, unaffected by my diagnosis. I have to admit though, that my case is probably rare. Understand that I am a very domineering person, type A personality, driven, opinionated, and at times aggressive personally and emotionally. I didn’t give people the opportunity to not understand what I was going through. I understand that others aren’t as comfortable talking about Alzheimer’s as I am. I feel very blessed that I have the support of family and friends that I do.
The “A” word. In some circles, Alzheimer’s is referred to as the “A” word because you can’t say it out loud. It is a horrific disease and I think we always go to the worst case scenario which in the case of Alzheimer’s is long term care ending in death and the brain withers away. Yes this does happen, however, I just visited with a nice young man today who was telling me about his father that was diagnosed with Younger Onset Alzheimer’s. He is now in his 70’s, still independent living at home which I thought was fantastic. The really good part of the story, he was diagnosed 16 years ago! That is our hope, for me to be blogging about our path for at least the next 16 years. Remember also, that they are just beginning to understand the significance of early diagnosis in Younger Onset. We do have the visual of the very elderly in final stage which is NOT the case with Early Stage where there is mild cognitive impairment and some memory loss.
Early diagnosis is critical. The last comment I want to make is how critical it is that we put aside the stereotypes and the stigma and focus on what is important. Just the word Alzheimer’s can radiate fear. Alzheimer’s cannot be reversed, that is a fact (as of today). Research shows that early diagnosis can lead to a better quality of life. If stigma prevents people from seeking medical attention they could be losing out on support programs along with therapies including drugs that can help with the symptoms like Aricept. There are also medical trials ongoing all over the world that they might be eligible for.
We need to lose the stigma so people can open up about their medical issue. The are myths about Alzheimer’s that I will address in a future post. If you are reading this and you or a loved one are suffering from any type of memory issue or mild cognitive impairment, you need to seek medical attention. Fortunately, I didn’t wait too long, but I could’ve acted much earlier. There are support groups out there, contact your local Alzheimer’s chapter for assistance. Again, thanks for the feedback.