how to tell others of my diagnosis
I was diagnosed with mild Alzheimers last month. I told my immediate family members (none of them were surprised). They are incredibly supportive. But I feel like I'm in a pressure cooker. I want to tell others and did tell two lifelong friends. Their responses were not helpful—one said tough diagnosis. She clearly didn't know what to say. The other minimized it like she didn't believe the diagnosis. She went into cheerleader mode. I am not going to tell others because it's too painful. Of course, they'll eventually know. I've read all the material about when and how to tell people. I'm happy to have found this website so I can talk with people with the same diagnosis and hopefully release some of the stress of having only immediate friends and doctors to talk about this with. Who have you told and what kind of response did you receive?
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Hello. I was diagnosed with MCI/Alzheimer’s in December 2025. It is mild at the moment. I’ve told my family and two close friends. Both my family and friends were very supportive. It was actually my PCP who responded, “Oh my God, I’m so sorry!” Encouraging, no? I don’t feel it is necessary to tell others I meet or know who are not close to me. It is a private matter that affects each person on its own timeline. I wish you all the best.
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OMG, I feel so much for you - and I've had such a mixed and difficult experience myself, and it hurts on a daily basis. One friend said "everything's going to be OK" and when I said it wasn't, she said "yeah, I said that for me and not for you" and that was the last I've heard from her. Others minimize, or ask me the same questions over and over, as if they can't keep in their minds exactly what this means today, and what it's going to mean for the future. Other. people contact me every 2 weeks and ask how I am, and/or ask for a Zoom, and I kind of feel like they are assessing my state, which doesn't feel great. Maybe the worst is those who say "I'm there for you, and when I say I've had something bad happen (cerebral swelling from Kusunla, or a scary test of some other kind or a symptom has gotten worse) and they don't respond to the text for a week. The best is an old friend I had kind of lost contact with, but who is the same irascible difficult person with me - she hasn't changed her approach to me - but I can call her and say I'm scared and she doesn't run away. My primary care doctor disappeared, and doesn't reply when I say I have symptoms . . . I've switched doctors and the new one is much better - that's essential. And I adore my neurologist, who answers emails . . .
Today I'm going to attend a group for people who have something to grieve - apparently it can be either a death or the loss of something in their lives. I haven't attended before, but I'm hoping I'll be able to say all the grieving I'm doing for my future, for the happy retirement I won't have (I wanted to open a restaurant), for my fears of who I'll become. Because we are all grieving, as well as just trying to survive in this new reality.11 -
Most of my friends just said like, nothing, when I told them. They still do not speak about it or ask me questions about how I feel about things or how my daily life is going or ask if Leqembi treatments might be helping. I have no blood relative family but my friends have always been my family, one of which I have know for over fifty five years. I find it all a very curious reaction. Not at all how I think I might act in a similar situation. So I just pretend, like them, that all is okay. I do all the things possible to read everything I can about Alzheimer's. I have a great neurologist who is open to try anything. Very supportive when I come to her asking for a prescription for a drug I researched and thought might be helpful. I am currently taking thre supportive drugs along with the Leaen I infusions. Preparing for the inevitable while doing everything I can to lengthen the time between now and the inevitable. I have tried to find a support group to meet up with but all I have found require that a caregiver attends with you. Not telling you all of this to be whiny, but rather just state the frustration with the rigid requirements that surround being a single person navigating to world of an Alzheimer's diagnosis.
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thank you so much for this response. It helps so much to know I'm not alone. Just hearing from people like you who are living with the godawful disease is helpful. And I am so, so sorry you have this diagnosis.
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I know. This is the club that nobody wants to belong to! But it's so helpful to hear from others in similar situations. Keep writing on this forum - there's lots of useful information, and it's a place to share the hard stuff.
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I was diagnosed 2 weeks ago, my dad had it- My DH took news as usual- full into research, creating a plan, etc. Not sure he really realizes what will be involved , but he will take care of it. I have a friend who hasn't responded to my texts but once. Once I told her my diagnosis. I worked parttime as an RN with disabled adults and was asked to resign. My world fell apart- Grandsons live out of state, As does only sibling, who is dealing with another variety of dementia. I feel like I am floating in an empty void. Any helpful ideas? Thank you!
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I don't know if this is helpful. But I have a similar situation. I was diagnosed some months ago. I know I have MCI.What I've chosen to do is is to say to some friends, colleagues, and family that I've had tests that indicate that I have the biomarkers of Alzheimer's, that these are good predictors of a disease that is progressive, but that at least for now, I'm doing OK, and continuing to do the things that I enjoy. And how long will "for now" continue? If I get follow-on questions about what the future holds I've responded that i don't know, as the rate at which the disease progresses is quite variable. So far that's worked reasonably well. Saying that I have biomarkers for the disease, rather than that I have the disease, seems to have been useful because people associate the disease with dementia, i.e. don't fully get that there are early stages of the disease at which point people affected do not act demented.
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This is a tough subject to share and to hear. That's because its so very personal. No one wants to have this diagnosis and no one wants their family member or friend to have the diagnosis. Which leads it back to how do you share the news? You share it with whom you chose when you chose to share it. There isn't a timeline on telling people. Yes, others may have some suspicions something is happening, but that is about them & not you.
Sadly you will more than likely have some people whom slowly disappear out of your life. However, if you get involved in support groups, etc. you will immediately have people who not only understand what you are going through, but will be there. Thus new friendships will form. You will find you now have friends who knew you before the diagnosis and those you've met after the diagnosis. The key is becoming involved in support groups and being active in those groups.
It isn't an easy journey. You need friends, do not isolate yourself. We are here to help guide you along the way.
eagle
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Welcome to the "Alzheimers Club" I've been in it for almost 3 years now .where in it deep not the plague but by others response you think it might be, oh well i guess we find the real friends. our state alzy group put on a state wide art show forpeople with alzy, i put in 4 works that were excepted, gave a little speech about famous artists who had alsy its who we are now a huge number of people whose job it is to teach others what the challenges and changes our new world contains, we are a proud group in shock but we have each other and hopefully a kind care partner to help carry the flag. yes i have alzheimers and it will kill me one day but right now here i am so take it or leave it or give a hand there's no middle ground any more for me. take a moment and i will speak of the alzy road!!!!!!!!!…………..
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Oh dear Watson it is beautiful!!! Thank you so much for sharing a part of yourself with us. ❤️ Ge
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Good you found a group and that you are using your art. I like alzy road. I think I will adopt it as newly diagnosed and alternating between acceptance/treatment or do nothing/stop all other meds/research legality in my state of assisted suicide once I start loosing myself. Just reading and posting here. As an artist I find some relief while painting. But sitting down to start is mind challenging. Good luck in your road.1
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Hi..My name is Nancy (nancyre)Sounds like we were diagonsed about the same time. I just posted a note below wanting to start a group of "us" that have experienced like or different situations. I want to help bring this diease out of the darkness!
Are you interested?
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I was diagnosed through a blood test and MRI about a month ago. I go to a neurologist for tremors and usually see his PA (haven't seen him in 3 or 4 years!). The PA is awesome! I mentioned to her that I've been having trouble finding words. She scheduled blood work and the MRI. I told family members and a few close friends. After reading some of these messages, I don't feel so alone. I am being proactive though. I am going to a support group of people in the early stages next week. I have an appointment set with a therapist because I know I will need that. Most of the people I've told do not want to talk about it. I talk about it when I feel I need to. Some of the people I've told said, "I never would have guessed!" Well, I only have the word finding problem so far! I am trying to learn as much as I can. My mother had Alzheimers so that and the support group I went to are my only experiences with it. I am glad to have found this!!
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I was diagnosed about a year ago. Maybe this stage 1 - 2 more years. I've only told family and a few very close friends. I think it's harder to share this diagnosis…. I'm afraid I will be treated differently or be looked at differently. I appreciate this support.
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This is lovely! It represents how I feel even though I am only 8 months into my MCI/Alz diagnosis. Thank you. Wishing you only the best!
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Firstly, I am so sorry to hear about your diagnosis. That "floating in an empty void" description sounds really familiar, I think it is shock, to tell you the truth. Be kind to yourself, have a pity party if need be, (I did for a bit, we probably all did). Then, when you are done, tell yourself, it will be okay and the start "kicking butt"!! For me that meant learning about the disease. I read everything i could possibly get my hands on. The next thing was to find a Dr. familiar with treating persons with Alz. I happen to be lucky enough to live only about 1.5 hours from near a Barrows Neurological Hospital and have found a great team there that work with me. Lastly, (sorry for yapping so long) I had to learn to advocate for myself. Something I had never been very good at. If your Dr's or medical team are not doing what you think they should, fire them and find new ones.
Thank you so much for sharing with us. Please keep us up to date on how you are doing. We are all here for you. Hang in there.
GE
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I would be interested in such a group.0
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This might be the group you are looking for. Please feel free to jump right in and introduce yourself. We would love to hear from you.
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This is wonderful. Everyone helping each other. Each journey is different, but yet the same. Share what your comfortable sharing.
eagle
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Greetings all. This is difficult to explain simply, but I have a form of Dementia called CADASIL that was passed on through my ancestors, directly from my mother, Natalie, from her father, Gus who died of a stroke as did her twin brother, Neil both in their near 40's. I've had little things wrong with me, but frankly never made a lot sense. My mother died of a UTI and previously had Dementia starting in her 40's. I was diagnosed through Ohio State University after being hospititalized with COVID IN 2024. I've been on Social Security Disability since March 2024. I admit that after learning I had it, one of the biggest aspects involve learning how to live with it, day by day.
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Natalie died when she was 69 in 2013; she was already in Wexner Heritage Village in Columbus, Ohio who she joined with her mother, Celia in her late 80's. I live south of this in Lancaster, Ohio, but I plan living the end of my life if it's all possible. My moto is to live actively, both physically and mentally. I feel like a pioneer in a way. ;) I was diagnosed by Ohio State University's neurology department. I'm probably the youngest person, here at 54, though. My grandmother, Celia, didn't have CADASIL as far as I am aware, she just had issues closer to Altzheimer's disease in her later days. CADASIL was diagnosed in the 1990's is what I was told by the neurologist. A lot of this is guesses comparing what I've experienced to my mother.
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No one can find the words for someone facing a death sentence so they avoid the truth. I am two years into the nasty Alz! I am still myself, so I approach the subject just like that. I am here, but . . .
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I would be interested. I am 75. Diagnosed 12/2025 with MCI/Alz. Wishing you all the best!
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The first person I told was my therapist. She told me that we would get through it together. She's incredibly supportive even though she has her own serious health issues. The second person I told was my husband. He asked me how I knew (I'd just gotten the results of my PET scan.), and he told me we'd go on just like we had been going on. He has problems expressing his emotions. I believe he's actually in a lot of pain about this, and unaware of exactly what AD is and how it progresses. I will have to be gentle in educating him. I plan on telling a good friend when I see her next month. And possibly a friend whose husband has Alzheimer's. I have a small group of close friends, and I don't know how, when, or if to tell them. I am afraid of unintentionally hurtful responses. It's an awkward diagnosis for friends and family to handle, I guess. I'm 73 and feeling very good presently. Wishing you all the best of luck in telling your friends and family.
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I’m sorry it’s been so hard and am inspired by your perseverance and commitment. Can you provide more information about the grieving group? It sounds great. I tested mildly high for amyloids but (so far) no cognitive impairment yet - except from terror. I don’t fit into most of the provided categories but definitely fit into grief. Grief seems to be the principal thing that helps me. I’m 78 and my mother had Alzheimer’s, as well as a very close friend who died in her early 50s. Thanks.
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Super helpful. I haven’t been diagnosed with cognitive impairment (yet!) and have mildly (?) elevated amyloids. I wonder where I fit in the Alzheimer’s world and what terminology to use. Your suggestions are super helpful. And supportive. Thank you.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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