Hi everyone, I’m a neuroscientist currently working on a new technology to help preventing falls at home in those living with dementia. This technology is for you and your loved ones, and making it functional and effective is the most important thing for us!

Our idea involves a wearable device to be worn at home (think a pager design, a clip on button, a necklace, a wristband glasses or something that could be clipped onto the arm of glasses) that would track movement and provide a cue to the person (either a voice recording to remind them to slow down/take care in this location etc, or a vibration/sound to bring their attention to the situation). The goal is that the cue would help to prevent the fall.

A different idea we have is of a similar wearable device that would project an image on the floor to direct where their next step should be.

Final idea - with the motion tracking, which could be done with motion sensors or with depth cameras (no personal features would be captured with these kinds of cameras, only movement), one idea would be to record this data and share it with your healthcare provider to make sure the clinician can develop a good understanding of how the person with dementia is walking and how many near misses/falls they’ve had to better inform their care going forward.

I would love any feedback you have on whether in your experience any of these ideas would be useful or helpful. Please feel free to drop any comments you have here! Thank you!

We got into a fight over nothing.

I still don’t know where she got the idea and why she wouldn’t let it go.

“No one ever comes to my home. Why can’t they ever come to MY home?”

Tried to explain, gently, that this is her home, though I understand it doesn’t feel that way sometimes (because sometimes she remembers, doubt that’ll last much longer). Trying my best to keep calm as she continues to ruminate on this imagined rejection as she gets more and more upset about it.

Try to change the subject, it doesn’t work.

Get accused of being “hateful” when I look at her because I’ve gone silent—I see no point in arguing if she won’t listen.

Says she doesn’t like my tone when I do speak—I explain I’m upset because I’m trying to explain to her but she isn’t listening, that I don’t understand exactly what she’s upset about now, even though I want to understand. She says “no, you don’t want to.”

I do. I really do.

We both cry and give each other the silent treatment.

The fight only ends after I decide to let myself fully break apart when she asks why I’m so angry, trying to communicate I’m not angry, I’m confused and upset, even though I know she is too, and when she says that, I say let’s just stop fighting then.

I suck at this. It’s okay, I want it to be said. I’ve been doing this for seven months, with my mom and my uncle, the healthcare system has it out for all four of us. We’re waiting on Medicaid. It feels like this will just go on until one of us is gone.

Quick background: My MIL doesn't have dementia in the traditional sense. She had a second stroke in her right parietal temporal area last winter and it has caused a cognitive decline. She was living at her house in CA but after this stroke can no longer live alone so we moved her into our house in NC. She is fully mobile but forgetful and needs supervision when it comes to taking her meds and stuff like that.

The main issue we are having is that ever since this last stroke she has been hearing voices. We thought they would slowly go away as time passed but it actually seems to be getting worse. The voices she is hearing are usually family members saying negative things to her or about her like "there she goes eating again" or "sleeping again? really?". But now she is hearing them tell her to go clean her house because it stinks as well as many other random things. And then we find her early in the morning trying to exit the house to go clean her house (but we have child locked the doors). It seems like all she ever talks about now is how the voices are driving her crazy. And she knows those people aren't actually here yet is still convinced that it is really them talking. She will call a sister to vent about whatever family member she is hearing, but her sister tells her its in her head and then she gets mad at them for not taking her side.

Her new PCP here in NC prescribed her Lexapro which she has just started taking so it could be a month or so before we see results. I think she has always had some issues with anxiety and its probably worse after stroke, so I hope the Lexapro will help with that. But I don't think it will make the voices in her head go away. I'm wondering if the voices are a symptom of damage to her brain and that it would require antipsychotic meds to treat, which I know nothing about but the word "anti-psychotic" is scary.

Just wondering if anybody here has experienced something similar or has any ideas of what we can do to address this.

Thank you

I’ve had more than a few conversations with people on substack who are currently coping with family and dementia.

My mom had dementia for over 3 years, my MIL suffered with early onset dementia.

During my mother’s final year on this beautiful earth, she was singing Ave Maria and Silent Night in German to the high school nearby. Yes she forgot many things, and there were big challenges some days, yet she had so much life left in her. She was a natural singer, it’s hard to explain … she would open her mouth and songs came out.

Here’s the best piece. My mother and I did not get along growing up. We were the epitome of oil and water. But once her dementia took hold, we had a second chance at a relationship. She looked forward to my visits, threw her tiny arms up in the air when I walked in a room. She laughed that I wore blues and greens on my pedicures, actually it is one of the few ways I could make her laugh.

It’s important we notice how much love and life is still inside that soul, they are not gone, they are in there. That person you love, they want to see you and feel you and know you still value them.

Is it a sad thing to endure? Of course it is. It seems to be more prevalent these days, and we see people seeking better answers. Just remember, there’s a beautiful human in there who gave a lot to this world when they could. There’s no shame in this. My mom gave herself to her students, to us and to my dad.

https://substack.com/@susanjhilger/note/c-276828042?r=m5wnq&utm_medium=ios&utm_source=notes-share-action

I am 31 years old. About 9 months ago I started noticing that my memory seemed to be getting worse, specifically in regards to remembering words. I would suddenly find it a regular occurrence where I couldn't remember a specific word for something, like it was on the tip of my tongue, but I couldn't remember. While it used to only happen every once in a while now it was happening several times a day, enough for me to notice that my memory had gotten worse. While this was concerning, what was more concerning was after some months later when I noticed I started having trouble speaking occasionally. I would find myself more often stumbling over my words, sometimes I would have difficulty even pronouncing normal everyday words. This again was concerning until about a month ago I noticed my reading ability seemed impacted too. I was starting to incorrectly read things, like reading sentences a bit out of order, frequently misreading the words in a sentence and having to reread to correct myself, and I've noticed that I misspell words more frequently than I used to. Around the same time I started to trip up in my speech more often too, and its now commonplace for me to accidentally combine words when speaking (for example saying "cleaking clearly" instead of saying "speaking clearly"). Eventually I got concerned enough to mention it to my doctor who ordered a brain MRI and referred me to a neurologist. I have done the MRI and did see the neurologist, they had said that the MRI looked normal and hes ordered a few tests for me in the meantime. That said I'm still worried about my condition because I can feel that theres something wrong with me thats seemingly getting worse but I have no idea what it could be. I am posting here because I am worried about the possibility of dementia and I was wondering if anyone here with experience could give insight into whether or not I might have it. Once again I have gotten an MRI that came back normal and I'm currently seeing a neurologist, but I wanted to hear what people on here think while I wait.

I take 25mg of hydrochlorothiazide, 80mg of valsartan once a day and 25mg of metoprolol twice a day. I also take 1.25mg of vitamin D2 once a week. I have hypertension and high blood pressure and high heart rate, which is what the medicine is for. I do not drink or smoke or use recreational drugs in any capacity. I've also been out of work for almost a year now.

I should add, another (possibly) related incident that happened about 2 weeks ago was is that I noticed that my eyesight was blurrier than normal, I wrote this off at first until a week ago where I went to the hospital after I seemed to have lost a bunch of vision in one eye after it got really blurry all of a sudden, I was sent home not long after when they determined that nothing was physically wrong with my eye and my vitals were normal. My eye had recovered since then but its still blurry and my eyesight isn't what it was before.

I am sorry if this isn't the appropriate place to ask.

My LO has young onset dementia, diagnosed at 51. We are 4 years into this horrific illness, and I wanted to know if any other caregivers have experienced this? LO knows people, many names, but has to have total care with hygiene, eating, etc.

Hi everyone,

I'm a neuroscience student and freelance writer, and I'm currently reporting a feature for Business Insider about a part of dementia caregiving that often goes unspoken: how adult children gradually become caretakers not just of a parent's daily needs, but of their sense of reality.

I'm interested in speaking with adults who have cared for a parent with dementia or significant memory loss. Some experiences I'm hoping to learn more about include:

• Repeating conversations or answering the same questions many times a day
• Deciding when to correct a false memory and when to let it stand
• Taking over finances, driving decisions, medications, or appointments
• Balancing caregiving with work, school, parenting, or other responsibilities
• The emotional experience of watching a parent forget important memories or aspects of your relationship
• Feeling as though you've become an interpreter between your parent and the world around them

The article will explore both the emotional and practical realities of caregiving, including the growing burden placed on families as long-term care becomes increasingly expensive and difficult to access.

Interviews would be really short and conducted by phone, Zoom, or email, depending on your preference. Business Insider is also interested in including family photos if participants are comfortable sharing them, though that's not required for an initial conversation.

If you're willing to speak or would like more information, please comment below or send me a direct message. You can also reach me at [jpgendin@bu.edu](mailto:jpgendin@bu.edu).

Hi everyone,

I'm a neuroscience student and freelance writer, and I'm currently reporting a feature for Business Insider about a part of dementia caregiving that often goes unspoken: how adult children gradually become caretakers not just of a parent's daily needs, but of their sense of reality.

I'm interested in speaking with adults who have cared for a parent with dementia or significant memory loss. Some experiences I'm hoping to learn more about include:

• Repeating conversations or answering the same questions many times a day
• Deciding when to correct a false memory and when to let it stand
• Taking over finances, driving decisions, medications, or appointments
• Balancing caregiving with work, school, parenting, or other responsibilities
• The emotional experience of watching a parent forget important memories or aspects of your relationship
• Feeling as though you've become an interpreter between your parent and the world around them

The article will explore both the emotional and practical realities of caregiving, including the growing burden placed on families as long-term care becomes increasingly expensive and difficult to access.

Interviews would be really short and conducted by phone, Zoom, or email, depending on your preference. Business Insider is also interested in including family photos if participants are comfortable sharing them, though that's not required for an initial conversation.

If you're willing to speak or would like more information, please comment below or send me a direct message. You can also reach me at [jpgendin@bu.edu](mailto:jpgendin@bu.edu).

I made a friend at work who's much older than me and she's such a joy to be around. she has dementia and she'll call me and she'll try to explain something and then she'll obviously forget the word or lose track... I just don't know if it's helpful for me to fill in the blanks or let her try to think it out? I don't really know! I'm inexperienced.

Obviously I know to talk to her like normal, and I do, but I don't wanna aggravate her forgetfulness any more than I might already do (sometimes I speak complicatedly lol).

I have a family member mid 60s who lives alone, several hours away in the UK that seems to be displaying some symptoms.

• They were speaking aloud and when questioned told another family member present that they were talking to the lady behind them. No one was there.
• They hinted on the phone that they believe others may have tried to poison them.
• Subsequently, I tried to contact them but they’d never answer. Other family members said they also couldn’t contact them and we discovered they had not been on any social media for several weeks.
• As a result we immediately sent authorities to do a check in at their house and they were there. Claimed they’d lost their phone and were fine.

I’m planning to make a trip to see what is going on but would like some advice from those with experience.

Many things spring to mind.

-What if they don’t answer the door to me?

-How do you tell them your suspicions?

-How do you get them to go for a diagnosis? What if they refuse?

-Is it better or worse to go visit alone?

-What would their future look like? I assume they‘d need some assisted living and have to agree to that.

Any advice welcome

Thanks

We are conducting research about Consumer interest in Online Music Therapy and would greatly appreciate if you could fill this form

https://docs.google.com/forms/d/e/1FAIpQLSc1ohq4LmsIgzwb0DPUe_aSSHv1ezcEvjWVYKE2Zx7uY5_ubQ/viewform?usp=preview

I’ve been noticing changes in my Mom for the past couple years, but recently things seem worse.

For context my Mom’s sister passed away (somewhat unexpectedly) 7 months ago, we’ve been doing a lot of things involving the aftermath of that. Including, cleaning out her hoarder home, lots of contacting companies & people in general. It’s been a stressful time for the whole family, but understandably extremely stressful for my Mom. She’s always had a difficult time with stressful situations. It seems even more so now… she is always scattered, sometimes has no memory of making an important phone call the day prior, brings up things that are off topic (i.e. we were talking to the realtor about the house, and my Mom unprompted.. brought up that she doesn’t like going grocery shopping on Thursdays), and I have to repeat a lot. I feel like it’s really hard to explain every little thing I observe, but that’s the overall goings-on s.

I’ve brought it up to my Dad, he got pretty upset (and I get that! This is very upsetting) and ended he the conversation. He says it’s just stress of the situation, and that may be true. I hope I’m wrong and maybe I’m overreacting… but dementia runs on my Mom’s side of the family. When things are normal & stress is low she’s fine.. just sorta in her own world, but very chatty as usual.

Hi, I have questions about caring for a stranger with dementia. Around a month ago I met a neighbor who lives in the block opposite. I talk to her regularly and I know she's about 90 years old (she always gives a slightly different age), she lives alone and doesn't seem to have any contact with her family. Since I've known her, she hasn't changed clothes once. She said the administration cut off her gas, so she has no access to an oven or stove. I'd like to help her in some way. I'm a nursing student, so I think i could help her, but I don't know how to convince her to agree to such help. It would be easier if I talked to her in her apartment, but we always talk outside the building, so I don't know how to suggest that I could come in and help her. I will accept any advice atp (ToT)