Please give me advice/experiences with early onset Alzheimers

[FeelingUnsure99]

I've namechanged just because some people know me irl on here and I don't want this thread to be outing - for the privacy of the other person concerned.

My oldest friend told me in August 2023 that she has been diagnosed with EO Alzheimers. I've never seen her all that often - once or twice a year - but it still came as a huge shock and I would say it's been the saddest news I've ever been given, way over-shadowing the deaths of both my parents.

She was 61 then. Since then I've seen her twice and the illness wasn't much in evidence but some signs were there (and infact, thinking back, the signs were there in our previous recent meet-ups over the past couple of years but she wasn't diagnosed then).

When she told me, I was one of only two people who knew apart from her immediate family. I have tried to step up and make the most of the time we have left while she is still OK and have messaged and WhatsApp'd a few times suggesting dates. The messages are marked as read but she hasn't got back to me (whereas she always would with enthusiasm before, we had a fairly equal relationship in terms of getting in touch and arranging lunches/nights out).

So now because there has been silence for months, I am worried that things are going downhill very fast for her.

My question is obviously, how fast does the disease progress in EO? Will I be bothering her by continuing to message? Will she find it overwhelming? Is she likely to still know who I am? Feeling very uncertain about what to do now! My instinct is to phone her, my fear is that she won't know who I am or that it will cause her anxiety.

I don't know exactly when she got her diagnosis (I asked in August 2023 but I don't think she remembered the date or exactly how long it had been) but I reckon it was up to 9 months before then.

Thank you if you can offer any insight.

It may not be the same for your friend as everyone is different but my dad was diagnosed last year, he has progressed so fast he can't string a sentence together anymore and he no longer knows who I am 😞

Does she have any family/friends you could get an update from?

So sorry to hear that about your Dad @MegaClutterSlut (I could share your username tbh!!). Is his early onset? As in, is he young?

I don't think I can answer your question and I think everyone is different, but for my DM it was 6 years between diagnosis and when she died. I understand she was diagnosed "late" as she was particularly young and they thought the memory issues were menopause/depression until it was significant. The last couple of years she wasn't "there" at all, couldn't walk, had to be fed etc. So really only a few years where she was obviously severely affected but would still appreciate seeing people and doing things (even though sometimes there would be problems, like not being able to work out how to use the hand drier in the loos and getting confused and upset).

He was diagnosed at 70. The doctor did say he was quite young for it and most of the patients he sees are in their 80s. My dads the youngest in his dementia care home. Hopefully your friends managing ok and you get to speak to her soon

There's a dementia and Alzheimers section on MN that may be able to give you more info x

I don't know what the normal course of EO Alzheimer's is, but the husband of a friend was diagnosed a few years ago in his late 50s. As with your friend, in hindsight there had been signs for a few years before that.

He has sadly progressed very quickly and I would say that it's entirely possible that your friend hasn't replied for reasons related to this. Does she have a partner? If so if you struggle to make contact with her then it is probably a good idea to get in touch with him/her and chat with them about how to proceed. I'm sure they would appreciate knowing that you are there to offer friendship and support to your friend.

I'm so sorry. It is such an incredibly cruel disease.

Thanks for your replies. My heart goes out to both of you.

I'm aware that Bruce Willis has declined rapidly. I just feel such overwhelming sadness for my friend, her children (still in their 20s) and her partner.

I don't know what to do now.

Giver her a call. Or if no answer message her family and ask if she would appreciate a visitor?

Seeing someone I know go through dementia, most friends dropped them, but the one or two who made the effort made the person with dementia smile and remember the good times. They were heaven sent and I will never forget them.

All the best!

My mum had early onset and it was 6 years from diagnosis to her dying

No-one can say how fast it will progress- everyone's experience of dementia is different. Some people will be stable with little change, others may progress q quickly. I would suggest calling her and seeing if you can speak to her. If you can't get anywhere does she have a partner you could speak to?

If you have contact details for any of her relatives or other friends, get in touch and see if they know how she is. But it's likely she is no longer able to use her phone. My mother's Alzheimers progression was not particularly fast but she lost the ability to use her phone quite early on. And EO Alzheimers does tend to progress relatively quickly.

Oh this is killing me (but thanks all for replying). I don't have her partner's phone number even though I've known him for 30ish years. He's not been a good partner to my friend but she's basically been too cautious to leave him. Again, I am certain I am one of very few people she''s discussed this with - because I knew her long before he came into her life. They live very separate lives and have done for years.

I will message her again tomorrow when my head is clear and then decide on next steps depending on any/no reply.

So sad and stressful! Thank you for listening.

Thank you @Huckleberries73. I don't wan't to avoid her, no matter how she is. I want to see her, I'm not trying to avoid it. It's just setting it up might be tricky if she doesn't use her phone any more. She had already had to give up driving and her job a year ago 😥

And of course @Huckleberries73 I'm so sorry you are going through this, both of you.

Early onset is more likely that someone might have difficulty with language such as reading or writing / texting, so your friend might be ok but just struggling more with written communication. Try and phone , if it's difficult let them know you will call again at set time as it might help if they are prepared?

My relative used to work with people with Young Onset Dementia, the definition of that is being diagnosed before the age of 65.

He says that the illness does seem to progress more quickly in younger people. Quite often they’re still juggling work, families etc so I think they have less spare capacity to cope with less cognitive ability if that makes sense.

I really hope that you can contact your friend op.

It can progress fast, but be aware that social withdrawal can be one of the earliest impacts the disease has. So it's possible that she would be okay-ish if you saw her, and she might enjoy seeing you, but she wouldn't respond to texts or calls or actually arrange anything.

Do you have the details of her next of kin? I have a godparent (not a blood relative) with the disease and we have to arrange visits through them now. It's a fucking horrible illness, I'm sorry.

Ask her children, several people have suggested it?
Is she in a home go and see her?

She's not in a home and I don't have phone numbers for her children.

My thread really is about how quickly a person can change when they have EO alzheimers and what I should be expecting after not seeing her for 6 months (and not having a message from her for about 4 months).

I know it's hard to answer.

My mum has Alzheimer’s and is no longer using her phone. She receives and reads messages, but the mental effort involved in working out an answer and then remembering how to type and send the answer is too great. However she is still able to go out for coffee with friends, and still recognises and remembers them. She can have conversations, they might be a bit repetitive, but conversations about her past life are better as those memories are more secure. If you are an old friend then she will be more likely to remember you.
But you need to phone her, not message.
Are any of her children on social media? I’ve had a few Facebook messages from people who have been trying to contact mum.

FIL was diagnosed at 58. Quite advanced at that stage, seemed obvious to all but immediate family (who may have been in denial). He died at age 63. He was in a home two years by then.

Thanks for today's messages. Such sad stories to read, I'm getting more and more worried.

Does she live far away? Could you just go there? Or write to her DP or DC at her address? Phone them at their place of work?

My dad had Alzheimer's and on a bad day would have struggled to send a text message but then on a good day he'd have no problem. I'd always associated dementia with memory loss but assumed it was things like forgetting where you've put something when actually it was more of a case of forgetting how to do things. He forgot how to put a car seatbelt on, forgot how to use a shower, all things he'd done automatically every day without even thinking about it.
Looking back I think he knew himself something was wrong but he masked it very well up until the point he couldn't. The specialist told us that's not uncommon and the disease had likely been there for some time before the rest of us realised.

Socially things that caused problems was my dad couldn't keep up with conversations in a group, he couldn't use unfamiliar toilets without help (he couldn't work out which cubicle to use and how to get out again) and he struggled with changes in flooring so going from carpet to a hard floor or stairs really upset him. Part of the masking was avoiding social interaction but not because he didn't want to see friends, it was just too much effort.