All of 5 Brothers with early onset Dementia: Is it genetic?

Hi @dottie57, welcome. I moved your post to the Caregivers: Dementia group so that you can connect with other members caring for a spouse or family member living with Alzheimer's.

According to the Alzheimer's Association -
"Family history is not necessary for an individual to develop Alzheimer’s. However, research shows that those who have a parent or sibling with Alzheimer's are more likely to develop the disease than those who do not have a first-degree relative with Alzheimer’s. Those who have more than one first-degree relative with Alzheimer’s are at an even higher risk. When diseases like Alzheimer's and other dementias tend to run in families, either genetics (hereditary factors), environmental factors — or both — may play a role." Read more here: https://www.alz.org/alzheimers-dementia/what-is-alzheimers/causes-and-risk-factors/genetics

I'm sorry to hear that so many in your family have experience with dementia. Has your husband been evaluated and diagnosed with dementia? How are you doing?

I empathize with you. My brother passed away 12 years ago with early onset Alzheimer's. He was 62 years old. I now have 2 of my sisters in a nursing home with Alzheimers. One with close to end of life. Daily, I question whether I am next. I read the response article on the involvement of genetics. My mother passed away from congestive heart failure and my dad of colon cancer. Both in their right minds up until the end. No genetic connection. This disease is totally devastating and baffling. It is a long journey of caregiving. I often think of getting tested but then again there is no cure. I wish you all the best on your journey.

Hello there. I signed up to this website cuz of what I read from your comment. To be honest I was SHOCKED to see the little response or the actual responses. Your story is major. I’m happy you shared
My dad got dementia at 59 and now my poor younger brother just got diagnosed. He is 46. I think inset was probably when he was 42’ish.
How are things now for you?
How is your husband and nephews? I don’t like labeling the dementia with Alzheimer’s or FTD(frontotemporal dementia) I think that’s the way it’s spelled. Cuz we just don’t know. Are you in the States? And if so, have you thought or are involved in a clinical trial? Do you find that you are getting support from a society like for example Alzheimer’s society?
I hope you respond as I’m eager to hear your thoughts and information. Have a good week 🥰

Hello there/ I have read your comment and am amazed by your story as well. Same questions I asked the person who posted- are you in clinical trials- have you any support from society’s like Alzheimer’s society or others?
Are you able to share the age of the onset of your siblings? My brother has dementia and is 46. I’m sure inset started at 42. The poor guy has gone thru SOOOOOO much to get that diagnosis cuz he is so young. Nobody thought about dementia regarding medical personal. Any ways/ please let me know your thoughts. I am on a referral for genetics counseling/referral and to see a neurologist. Hope you are well and having a good week!!😊

I am so sorry you are going through this, too. I am not in a clinical trial. Almost daily I ask myself if I should be doing this. I do not mean to be selfish when I know I could be helping others, but I also know that that there is nothing I can do about it if I do have the gene. The fear of finding out is overwhelming for me. I have all my financial and funeral arrangements in place because I do not want my family to go through this. The medical world has been dealing with this for a very long time and I do not foresee a close future of finding a cure. I am 70 years old now ( the same age as when my two sisters were diagnosed.) My oldest sister just passed away 6 weeks ago. I was caregiver to her for 12 years and miss her so much. Right now I'm focusing on the mourning process, again. My brother was 55 when he was diagnosed and passed when he was 62. I empathize with you on the early onset of your brother. Early onset was more difficult for us to fathom. His speech was the first thing to go. My other sister is in the middle stages, now. I will say that after dealing with this ugly disease for so long, my faith has kept me going. Please let me know how you turn out. I wish you all the best. I did join several support groups over the years, but when Covid hit most of them were no longer. I would recommend you check into this. You meet people who you can connect with and are dealing with the same scenarios as yourself.

What has struck me about what you wrote is “my faith” and how it is carrying you thru. I totally agree with this. Even as I write this I have my worship music on ❤️ It is a great reminder of not being alone thru this crappy time in life. I recommend going and searching for I will Sing by Kari Jobe. She is singing my needs❤️
I just turned 49. We all have so much heaviness in life and this is another thing. I need to learn to let it go to Jesus. I hope this doesn’t get deleted cuz of the name Jesus but it’s worth it.
I think what you’ve done carrying for your sister is beautiful. I got to do that for my dads lady two yrs. Right up till he went into a care home in October. He died New Years Eve-2 months later-the week before he turned 70. His funeral was on his birthday! Who would have thought? I was terribly broken for months and years after he died. He was the only thing I had close to family. My mom and siblings have not been pleasant thru my life to me. My dad was always❤️ Anyways, things dramatically changed about two years after he died My mom and me along with my brother have beautiful relationships. Now my brother is sick 😞
They need to help him with good meds to control some of his symptoms. So far not so good. They are trying to find a proper facility. He has had one hell of a life. Now this..,,
Please keep in touch with me as much as you want. I can even give you my email if you want to. If not and you think I’m crazy that’s ok too😂

Within the last twelve years I have been going to local support groups. I live in a small community so I knew who I could trust because everything is confidential. I have connected with many social workers and people who have been caregivers and have become great friends, and I must admit that they were always there for me. Just a suggestion -perhaps this would be helpful to you. Sometimes when we talk openly about the caregiving process it makes us feel better and we gain a lot of wisdom knowing the "do's and don'ts" of the disease.

Since joining this group on Mayo, I have related to many caregivers like myself, and have gained a lot of knowledge and advice. Before being on here, I was all alone and feeling very anxious about my role and needed to talk with someone who was also going on this journey. Thank you to the Mayo Clinic and the caregivers in this group, I am having less confusion and more peace of mind,
God’s blessings to all of you!