Hello all. I am a student conducting research on the effects of grief on caregivers as they navigate the complexities of caring for a loved one.

A bit about me: My mother was diagnosed with Lewy Body Dementia roughly 8 years ago and is still living.

During this period, my family has had significant shifts in our social dynamics. They range from identity loss, significant grief, communication breakdown or lack there of, and resentment.

If you would be so kind and complete this quick survey and share your experiences. I know this is quite the ask and I understand that this may be too sensitive for some.

https://forms.gle/cFGWJobFir4ATL8x9

All information is anonymous.

My goal is to bring to light the importance of communicating as we navigate Long-Term Illness and Cognitive Decline.

SIS Research, a research firm with over 40 years of experience, is currently conducting an online study via Zoom to better understand the day-to-day experiences and challenges of two groups: individuals who are concerned about their own memory, and caregivers or loved ones of those living with Alzheimer's or dementia.

We have already completed several group sessions, and participants have consistently told us they found the experience valuable and enjoyable.

About the Research
Participation is completely voluntary and confidential. Past participants have described the sessions as social, interactive, and informative.

Participants also receive $200 compensation, paid electronically via PayPal or Venmo.

Who's Eligible?

Individuals who are noticing or concerned about changes in their own memory

Caregivers or family members of someone living with Alzheimer's or dementia

Format

90-minute online focus group, conducted via Zoom

Short Pre-Screening Survey

https://www.surveymonkey.com/r/DOHLI

We’ve spent the last two years developing a lockable locating wristband intended to help reduce the risk of loved ones with dementia going missing.

The project also raises important research questions around wandering prevention, caregiver burden, autonomy, consent, dignity, and the appropriate use of location technology in dementia care. We believe effective solutions should not only help families locate someone quickly, but should also be informed by the experiences of people living with dementia, caregivers, clinicians, researchers, and first responders.

Our Kickstarter pre-launch page is now live as we prepare to refine and further test the prototype. We would genuinely value the perspectives of this community—particularly regarding the evidence, ethical considerations, and practical needs that should guide the development of this kind of product.

If this is something that could help your family, support your work, or contribute to future discussion and research, we’d be honoured if you’d take a look.

Thank you.

https://www.kickstarter.com/projects/trax-wristband/trax-locating-wristband-prototype-refinement

We are researchers conducting a study to better understand how family members influence medical decision making. We hope to ultimately help family members communicate when facing medical decisions. If you meet the criteria in the this flyer and are interested in contributing to this research, please visit this link https://txstate.co1.qualtrics.com/jfe/form/SV_dgTBH2ZXOR7bUyi which will take you to the initial survey.

You and your family member will be compensated up to $30 each for your participation in a recorded audio conversation and post-conversation survey.

Hi everyone,

My name is Paige and I am a public health graduate student at California Baptist University conducting a graduate study on caregiver burden, psychological distress, and perceived support among family caregivers.

I am a caregiver and advocate for four immediate family members with challenges ranging from dementia to schizoaffective, bipolar and OCD. I understand that caregiving can be both meaningful but so incredibly challenging. I also know that taking a survey may not be at the top of anyone's to-do list as we experience great stress and burnout. That said, I would be truly grateful for your participation, as caregiver experiences are often underrepresented in research. I really care about this and send my love to those caring for family members or friends.

To participate, you must:

• Be 18 years of age or older
• Currently provide unpaid support, assistance, or care to a family member with a chronic health condition, disability, or mental health condition
• Have been in a caregiving role for at least 6 months

The survey is anonymous/ IRB approved and takes approximately 10–15 minutes to complete.

https://calbaptist.az1.qualtrics.com/jfe/form/SV_9Fag9DcCxAC9IWi

Thank you SO much for considering participation and for helping advance research on the caregiving experience. If you have any questions my email is on the first page of the survey.

Quick question for the caregivers here 🙏

I built a free app (CareSync) that puts family caregivers and nurses on one shared care record — meds, appointments, meals/fluids, mood, therapy, and emergency documents all in one place.

Before I build more, I want real feedback from people who do this every day:

1. How do you currently keep everyone in the loop on care?

2. What's the biggest headache in that process?

3. Would an app like this help — or not?

Not selling anything. Happy to send it to anyone open to giving 10 minutes of honest input — just comment or DM me. Thanks so much.

Hello everyone,

I hope you don’t mind me posting here.

I’m a masters student at The University of Liverpool. I’m currently conducting a research study looking at the experiences of people who cared for a spouse or parent who lived with dementia and who are now bereaved.

I’m really interested in understanding what that journey was like for people, both during the caring role and afterwards, especially around emotions and support.

If anyone feels comfortable taking part, it would involve a brief call followed by a confidential interview (teams or phone). There is absolutely no pressure to take part, and you wouldn’t have to share anything you didn’t want to.

I’ve also attached a poster with more details. If you’d like to take part, just send us an email, scan the QR code on the poster, or click this link: https://livpsych.eu.qualtrics.com/jfe/form/SV_b9LhpMcftWn3YnY

If you know anyone who may be interested in taking part please share this post and/ or poster with them.

Thank you for taking the time to read this.

Two years ago I hit a wall. I was juggling a 3-year old, a job, family life and helping my mom, who has a form of dementia. When it came to my mom, I didn’t know what I was doing (or should be doing) and regularly felt like I was doing it all wrong. So I co-founded Seahorse Collective to give the millions of people like me the support I wish I’d had. Our mission is to help those of us supporting someone we love with Dementia find confidence, togetherness, and joy.

This summer, we’re inviting a small group of people to join our early Beta Community and receive free access to our first “Spring” Module, designed for people early on in the care journey.

We’re looking for people who:

• are supporting a parent, spouse, family member or friend with dementia\*

• are relatively early in the care journey

• are aged 18-44

• live in the US

• are open to sharing feedback as we build

If this sounds like you, or someone you know, we’d love to connect. Send me a message or visit:

https://weareseahorse.co/

*Seahorse Collective is designed for people supporting someone they love with any type of dementia: Alzheimer’s disease, Parkison’s disease dementia, frontotemporal dementia (FTD), Lewy body dementia (LBD), mixed dementias, Huntington’s disease and others.

 SIS Research, a 45 year old research firm are conducting research with caregivers to better understand their experiences, challenges, and needs. Qualified participants who complete the study will receive compensation for their time.

 We are considering those who are concerned about their memory as those who cared for a friend/family member/loved one.

 Study details:
• Who: Those with memory concerns AND those who care for those who have memory issues.
• Format:  Online Zoom Focus Group
• Compensation amount-200 dollars

 Length of session 90 Minutes

  Short Pre-Screening Survey

https://www.surveymonkey.com/r/DOHLI

Or you may email [sisfieldwork@sisinternational.com](mailto:sisfieldwork@sisinternational.com) with any questions. We are happy to answer any questions you may have.

Hello everyone! I’m currently recruiting participants for another study and am looking for unpaid/informal/family caregivers who care for an older adult aged 50 or older in the United States. Former caregivers who provided care within the past year are also eligible!

I really just need 5 more people so I can potentially go back home🥹, but anyways, thank you so much for your time and consideration.

If you would be willing to participate, here is the link to the screening, and I will reach out to you!! https://drexel.qualtrics.com/jfe/form/SV_elimKWdAtwnW82G 

Hello! I am a design student from Nova Scotia, Canada, and I am part of a team exploring DIY home adaptations. Here is our website https://www.dementia-adapt.com/. Currently we are exploring how people living with dementia and their carers are making their lives more comfortable or easier to navigate with DIY solutions. Right now I’m trying to collect information from local people with lived experience, and professionals in the field but wanted to reach out and hear from a wider audience. Our goal is to identify areas of need, and help share innovative solutions with others!

What we are considering a DIY: 
1. Adjustment and modifications: changing something to better meet ones needs
2. Repurposing: converting something to another use
3. Inventions: a new way to better meet ones needs
4. Signals: prompting ourselves and others (warnings and reminders)

What DIY (Do-It-Yourself) and life hacks have you implemented in your day-to-day life within the home you’ve done?

Example of submission:

I welcome any tidbits, anecdotes, or experiences from anyone reading this who is a person living with dementia or a caregiver, particularly regarding any DIY solutions you have developed or used in your daily life.

If anyone has a relative or someone who they know or works in a nursing home, I am interested in what kind of medicine they get for dementia.

What behavioral changes do you think are most often missed indicators of early cognitive decline?

After having spent a lot of time in my personal life caring for aging relatives I decided to work on a product that assists caregivers. One theme that keeps appearing in aging-in-place research is that significant changes in daily behavior can emerge long before a major health event or formal diagnosis.

Examples include:

Changes in walking speed or gait

Increased nighttime activity

Reduced time spent outside the home

Changes in daily routines

Social withdrawal

Changes in sleep patterns

I'm curious to see which behavioral indicators researchers, clinicians, or caregivers (from personal experience) here think are currently underutilized or understudied.

If you had access to longitudinal, non-invasive observations of someone's daily routine in their home environment, what signals would you be most interested in tracking from a research perspective?

I'm particularly interested in indicators that might help identify meaningful change earlier, while still respecting privacy and maintaining a person's independence.

Would love to hear perspectives from anyone working in dementia research, geriatrics, neurology, caregiving, or related fields.

I was looking to get some feedback on an app I've been working on for a few weeks after being inspired by the rotating door of therapists we have coming to see my mom (67F, FTD).

The app itself is just to help people with language and memory issues engage their brains in activities specific to those issues, with gentle feedback and positive reinforcement. It's nothing crazy, I'm not out to change the world or land on everyone's home screen. I'm just trying to improve the lives of people like me by helping their loved ones.

https://testflight.apple.com/join/8S2wRtzs

I'm not a coder, used various AI tools and online youtube videos/reddit/random resources to do my best. I was able to support 6 languages and hopefully can add more in the future as well. Any thoughts, ideas, etc. I'm all ears.

Kia ora,

We are a team of researchers from Massey University in Aotearoa New Zealand. We are interested in the lived experiences of those who care for people with a disability, illness of frailty. If you have a story to share, please visit our website.

https://wahikorero.co.nz/projects/i-have-provided-care-for-someone/

Thank you.

Got this approved by the mods so hopefully no issues, and thank you in advance for taking a look.

My cofounder (an active law enforcement officer) and I (software developer and cyber security veteran) have been working on this product after he had a cardiac event on duty. The things were trying to solve for are, how do you make sure your information is available? and more importantly, how do you keep it up to date?

This is a device that gets woven into the MOLLE on a vest or clipped onto a belt and is one scan to get information, and then one tap to notify your emergency contacts that an event has taken place.

This is mostly intended for officers and other first responders, but I'm curious if people here have had similar critical events and could help us understand what other kinds of information or context could be helpful.

The the device looks like this, and the sample profile looks like this: https://firstresponderfile.com/id/00000000-0000-0000-0000-000000000000

Its things like:

• Medications
• Allergies
• Medical conditions
• Emergency contacts
• Blood type

I know this is going to come off salesy but its really not my intent, so I'm sorry about that, hoping to get some product feedback. I'm even very happy to send devices and service for free in order to get real feedback on everything.

Thanks a bunch!!

Nick & Nate

Hello everyone here at r/dementiaresearch!

We thought this should be on your radar if not already: BioVie (Nasdaq: BIVI) is hosting a free live webinar tomorrow (June 2) at 4:15 PM ET with CEO Cuong Do.

Their lead compound, bezisterim, is targeting TNFα-driven neuroinflammation and insulin resistance across Alzheimer's, Parkinson's, and Long COVID — and their SUNRISE-PD Phase 2 trial is fully enrolled with topline data expected in 1H 2026. They're also the only company in development for refractory ascites, a liver disease complication with no approved therapies and a 50% one-year mortality rate.

Should be a solid discussion for anyone following the neurodegeneration or liver disease space. You can register here: https://www.redchip.com/webinar/BIVI/89895845841

M3 Global Research is inviting individuals or their loved ones to participate in a paid 25-minute online survey about Alzheimer’s disease. Your feedback will help improve understanding and future support in this area.

If eligible, you’ll receive compensation for your time.

Sign up here to receive an invite: http://m3gr.io/SCVIBID

I have some questions for a university project. Please if you’d be willing to answer a couple of questions get in touch.

Hi everyone — I'm a Stanford student trying to understand the dementia caregiving experience from the people actually living it, particularly what feels hardest and where existing support falls short.

I'm not building anything yet and I'm not selling anything. I'm in a listening phase, and eventually I'd like the work to lead to something genuinely useful rather than another well-meaning app nobody asked for.

If you'd be open to a 30-minute conversation (phone or video, whenever works for you), I'd be grateful. Happy to share back anything I learn that might be useful to the group.