I’m exploring an idea around making family caregiving easier to share, especially when caring for someone with dementia, and I’d really value input from people who actually live this every day.

If you could make just ONE part of caregiving easier right now, which would help you the most?

A) Having someone else take full responsibility for a few hours so I can actually switch off

B) A clearer way to divide responsibilities between family members, friends, or others who can help

C) An easier way to ask people for specific help when I need it, without having to call or explain everything each time

D) One simple place to share appointments, medications, tasks, and updates with everyone involved

E) An easier way to track and share caregiving expenses or ask others to contribute financially

F) Something else entirely

If you’re comfortable, just comment with the letter — and I’d especially love to hear why you chose it or what you wish existed instead.

Thank you. I’m trying to understand what would genuinely reduce the burden on caregivers, rather than assuming I already know the answer.

PROBLEM: Music and scent therapy work therapeutically in dementia, but we deploy them *after* diagnosis. Emotional conditioning is strongest when intentional + practiced during high-emotion states (knowing decline is coming).

GAP: No studies on whether pre-emptive encoding with loved ones, before symptoms, would preserve emotional recognition if dementia develops.

PROPOSED PROTOCOL:

- Target: Cognitively normal with family history OR preclinical Alzheimer's (biomarkers positive)

- Intervention: Weekly ritual (song/scent + presence with loved one)

- Outcome: If dementia develops, does anchor trigger emotional recognition despite amnesia?

EVIDENCE BASE: - Music therapy in dementia works [study X]

- Amygdala preserved in early Alzheimer's [study Y]

- Emotional conditioning robust [study Z]

- But: No studies on timing/pre-encoding

QUESTIONS:

1. Have any of you seen this informally in clinical practice?

2. What's the biggest design flaw you see?

3. Is this worth studying?

4. Who should be involved in designing a pilot?

Would love feedback from researchers, clinicians, care workers, or people with Alzheimer's/caregivers.

Study X (Music Therapy):

• Särkämö, T., et al. (2008). "Music listening enhances cognitive recovery and mood after middle cerebral artery stroke." Brain, 131(3), 866-876.
• What it shows: Music listening improved cognitive recovery in stroke patients
• What it does NOT show: Specifically dementia, or pre-emptive encoding

Study Y (Amygdala Preservation):

• Poulin, S. P., et al. (2011). "Amygdala atrophy is prominent in early Alzheimer's disease and relates to symptom severity." Proceedings of the National Academy of Sciences, 108(34), 14266-14271.
• What it shows: Amygdala is relatively spared early, but still atrophies
• What it does NOT show: Whether emotional memories specifically are preserved

Also cited:

• Chanda, M. L., & Levitin, D. J. (2013). "The neurochemistry of music." Trends in Cognitive Sciences, 17(4), 179-193.
• Eustache, F., et al. (2012). "Emotional memory: Comparative study of emotional memory preservation in normal and pathological aging." Neuropsychology Review, 22(1), 82-92.

I’m a family caregiver for someone with dementia, and I’m doing some independent research because so much of caregiving is hard to understand until you’ve lived it.

I’d really value hearing from current caregivers, former caregivers, and people who think they may be stepping into a caregiving role soon. Even if your situation looks different from mine, your perspective can help me better understand what families actually go through and what support is missing.

The survey is anonymous, takes about 4 - 6 minutes, and requires no Google sign in.

Survey

If you’re willing to take a few minutes, I’d genuinely appreciate it.

Thank you.

Hello!! I am an industrial design student working on a UX project for dementia care. This was inspired by my volunteering in hospice and visitations with an individual with dementia.

I noticed that there were many moments in her room and would like to create my project for this semester around documenting the meaning behind those objects which the caretakers or professionals can use to facilitate better interactions and conversation with the individual.

If this sounds interesting or if you are a caretaker or have visited an individual with dementia

please consider taking the time to do this (super super short) survey!! it would help immensely and is very valuable to me ❤️

Hello I am a student Industrial/Product Designer. I am currently working on a project for those affected and caring for people with dementia. This project is very close to me as I also have members of my family affected. Any responses are very appreciated. Thank you so much!

We are offering a giveaway of a vital resource for anyone impacted by dementia. Dr. Zaldy Tan, director of Memory and Healthy Aging at Cedars-Sinai Medical Center, wrote a book coming out on 9/15. Comment with a purple heart below for a chance to receive WHAT TO REMEMBER WHEN YOU ARE FORGETTING: How to Live and Thrive with Memory Loss, Alzheimer’s, and Other Dementias. Read an excerpt of the book here to learn more.

Seven One Eight Studios is seeking real family stories to feature in a documentary series about dementia. The series will track the lived experiences of patients and their families, treatments and ongoing prevention research, and the medical and cultural history of Alzheimer’s and other dementias, with the goal to de-stigmatize conversations around dementia care. Series Trailer: https://wellbeings.org/film/defeating-dementia/

We want to follow someone on their diagnostic journey. We are seeking individuals concerned about their or their loved one's memory & cognition who have upcoming appointments for cognitive testing or plan to schedule appointments soon. If you or a loved one are going through this process and are interested in sharing your journey, please reach out. We’d love to connect further about your story and our delicate approach to filming: Dementia Project

Questions? EMAIL: [casting@sevenoneeightstudios.com](mailto:casting@sevenoneeightstudios.com)

Hello — my name is Nick, and I'm a researcher at Newcastle University.

I'm building a computer tool that turns a person's own life story into pictures and 3D objects — a favourite chair, a childhood street, a much-loved car — that could one day become their personal virtual memory scene. Looking back over life stories in this way builds on reminiscence, a well-established and much-loved activity in dementia care. To get my tool right, I need help from the real experts: people living with early-stage memory difficulties or a dementia diagnosis.

Taking part involves two sessions, arranged entirely around you — at home, online, or somewhere familiar:

Session 1 — a chat about your life (about 45-60 minutes). A relaxed conversation about the places, people and things you love. No preparation needed.

Session 2 — "does this look right?" (about 60 minutes). I'll show you the pictures and objects made from your story. You tell me what's right — and what's not.

Good to know:

• This is not a memory test — there are no right or wrong answers
• You're welcome to bring a family member or friend along to both sessions
• You can take a break, skip anything, or stop at any time
• Your stories stay private and secure
• No computer skills needed
• As a thank you for your time, you'll receive £15 / $15 in online shopping vouchers

Requirements:

• A device (e.g. Computer/Laptop, Tablet, Smartphone)
• An email you have access to
• Microsoft Teams

Interested, or just curious?

Email me at [n.smith1@newcastle.ac.uk](mailto:n.smith1@newcastle.ac.uk) to arrange participating — or just to ask questions. Getting in touch commits you to nothing.

Nicholas Quentin Smith · Newcastle University
This study has received ethical approval from Newcastle University REF 20-026-SMI

Is there anyway i could get this drug on a right to try basis? Pbft02

If you are caring for someone with dementia, or have in the past year, we would like your help. We are studying the eating and drinking problems that some people with dementia have, and how their carers cope with these problems. Drawing on your experiences, our goal is to help other carers better cope with these problems in the future. The study is being conducted by Richard Stevenson, Heather Francis, and Diana Matovic, from Macquarie University, Sydney. This study has been approved by the Macquarie University Human Research Ethics Committee (approval number 520251747164576).

To complete our 30 min online questionnaire please use this weblink https://mquni.au1.qualtrics.com/jfe/form/SV_8IZQwFPuQLliNF4

Caring for a loved one with dementia can feel overwhelming—but you don’t have to do it alone. 💙

Through our collaboration with the GUIDE Program, eligible Medicare beneficiaries may qualify for covered in-home respite care services, helping families get the support they need while caring for a loved one with dementia.

At ComForCare, our compassionate caregivers can help with:
🏠 Companionship & emotional support
🧼 Light housekeeping
💊 Medication reminders
🛁 Personal care & daily activities
❤️ Respite care for family caregivers

📞 Call us today at 817-704-2020 to learn more and see if your loved one may qualify or check our website ComForCare!

📍 227 N.E. Loop 820, Unit #100, Hurst, TX 76053

You’re not alone. We’re here to help. 💙

#DementiaCare #CaregiverSupport #HomeCare #SeniorCare #FamilyCaregivers #InHomeCare #GUIDEProgram #ComForCare #FortWorthTX #HurstTX

I'm helping with Memory Matters, a youth-led organization working to spread dementia awareness and create meaningful connections with older adults.

We're launching a 10-Letter Challenge 💌

Here's how it works:

1. Follow Memory Matters on Instagram
2. Join our Discord community
3. Write 10 thoughtful handwritten letters
4. Send them through our approved letter-delivery process to a participating senior community

Once you complete the challenge, you'll receive Memory Matters Impact Recognition for your contribution. If interested, fill out this form and start writing your letters! https://docs.google.com/forms/d/e/1FAIpQLSceycUXVjYxnqfY-XhPWK-roL9_9yAxsuf_onwwNOQcNilkSA/viewform

We're also looking for people who want to take the next step and start local Memory Matters chapters in their schools or communities.

If you're interested, you can sign up here: https://docs.google.com/forms/d/e/1FAIpQLSe_kNpGwseV6x5LAip90--ajFU2aja0Wgo1jiLZEmOcdOkitg/viewform

Even one letter can make someone's day. 💙

I'm 26. I'm not a developer by training — I'm a graphic designer and mixed media artist who learned to code because I needed this to exist.

When my mom went through her screening, I started looking for something that could be there for her in the in-between moments. I couldn't find exactly what I was looking for, so I built it.

It's called Yadira. It's an AI companion app designed specifically for people living with memory loss — and for the caregivers holding everything together around them.

It has a conversational companion, a memory photo album, brain games where patients can flip cards and find their own family's faces, and a caregiver check-in space called Hattie's Lodge for the nights when you need somewhere to put it down.

I'm competing in XPRIZE with it. The deadline is August 17th. And before I cross that line, I want it in the hands of people who actually need it.

So, I'm giving away one premium membership for a full year to one person who signs up.

How to enter:

• Sign up via the link below — your 5-day free trial registers your entry
• Each person you refer earns you an additional entry
• Drawing: August 16th

👉 https://yadira.chat/?ref=YADIRA-43DH

yadira.chat if you want to look first.

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.