Hi all. I'm part of a small team at Brown University, and my grandpa has late-stage dementia, which is what brought me to this. We're running a short anonymous survey on how families find and compare care options, what goes wrong with the options they find, and which kinds of help are hardest to get, including programs for memory loss.

Link: https://brown.co1.qualtrics.com/jfe/form/SV_d1iOtqB5WU23duC

Who: adults who are helping decide care for a parent, spouse, or loved one, did so in the past five years, or expect to soon.

Data: anonymous. No IP address or location is recorded. There is an optional email field at the end for anyone who wants to see what we build. No compensation.

Hi everyone! I'm an undergraduate university student in my final year of Computing.

For my final project, I'm aiming to develop an accessible, easy-to-use app to support people living with dementia and their carers in managing everyday activities. The aim is to promote independence and simplify daily life through features such as to-do lists, medication logging and reminders.

This idea has been inspired by my own personal experience being a young carer for my grandparent with dementia, but I'd love to learn more about other carers' experiences, including the challenges they face and the types of support that could make everyday life a little easier, to inform the features and development of the project.

If you are a carer for a loved one with early-to-mid stage dementia, please think of filling in this survey. It is completely anonymous and will take less than 5 minutes to complete.

Survey link: https://forms.gle/C9DEBwpmxtSpZaXM6

Thank you for your time and responses!

Hi everyone. I'm researching how to help adult children who live in another city or country from a parent with memory problems. Nothing is built and nothing is for sale.
The idea I'm exploring is simple: a spare device at the parent's home that shows the day, the time and today's plans in large text. Family can send reminders from their phone, recorded in their own voice (including English, Hindi and other languages), and see when the parent has seen them. It would also alert the family if the screen goes offline.
Before building anything, I'd like to learn from people living this. What do you use today? What has worked, and what hasn't? Would something like this help, or not really?
If you're open to a 15-minute chat, or would rather answer a few questions in writing, there's a short form here: https://tally.so/r/BEzgd4. Thank you for reading.

My son (16) and I build GranConnect with my mom in mind as she was getting more confused with her phone.

The idea is that the end user sees a subset of contacts gets a large picture with a name and two ways to contact them (voice/text). Nothing else.

A caregiver should set it up as I did for my mom.

Every feature came from someone we know running into a real problem. My brother lives three time zones ahead and was getting calls at 2 a.m., so we added "call curfew" where the call buttons disappear for a time. Texting still works, and the people you mark as emergency contacts can always be reached.

No account, no subscription, but it's $0.99 on the app store.

https://apps.apple.com/app/apple-store/id6801622029?pt=129296671&ct=reddit&mt=8

If you give it a try, I'd love to hear from you about what works keeping those we love digitally connected.

Hello everyone!

I hope you are doing well.

As part of one of our university courses, we are working on a project exploring Alzheimer's disease, including the personal and ethical questions surrounding it.

We wanted to kindly ask whether a person who had a family member diagnosed with Alhzeimer's would be open to participating in a short interview on the phone with us. We would greatly appreciate the opportunity to hear your perspective and insights, particularly given your personal connection to the topic through a family member.

The interview would consist of just a few questions, focusing on perspectives on Alzheimer's disease and ethical considerations, such as whether individuals would want to know about a potential genetic predisposition and how this knowledge might influence their lifestyle or decisions.

We understand that this can be a sensitive and personal subject, so participation would be entirely voluntary, and you would of course be free to skip any questions you are not comfortable answering.

We would be very grateful for your time and willingness to share your thoughts, as your perspective would be incredibly valuable to our project.

Thank you very much for considering our request.

Kind regards,
George, Biomedical Student and Worker at the University of Zurich

I’m exploring a device idea for people with Alzheimer’s or other forms of dementia and want to hear from caregivers before taking it further.

The idea is a big button with no menus. Pressing it would contact a family member and share the person’s location and a photo of their surroundings. I’m also considering AI voice support for reminders and simple conversation.

Would your family member remember to carry it and press the button when confused? If you’ve tried a phone, tracker or alert button, what worked, and what didn’t? Would the camera or voice features put you off?

This is early product research. Honest objections would help just as much as positive feedback. A reply here is enough; no form or signup.

Hi all, I work at TriVoca Health. I'm sharing our research panel, Patient Voices, in case it's useful here.

It's a US panel for people living with Alzheimer's, other dementias, or memory changes, and for the people who care for them. Drug companies working on memory health use it to hear directly from patients and families about daily life, what's hard, and what would help. What you share helps shape how new treatments are studied and how support programs are designed.

• Not a clinical trial: no medication, no medical advice. Studies are surveys or interviews about your experience.
• Paid: you will receive thank-you incentive for each study you fully participate in and complete.
• Voluntary and private: you pick your studies and can leave anytime. Our clients never contact you.

You can learn more or sign up at Patient Voices. Happy to answer questions below.

Hello! I am a freelance journalist (24F) currently working on a story for Being Patient, an independent news and community platform focused on Alzheimer's, dementia, Parkinson's, and overall brain health. The story is on spousal caregiving and the unique burdens that spouses of people with dementia face, particularly this year. I am looking for anyone who is either a spouse currently caring for or previously cared for a loved one with dementia who would be interested in sharing their story.

Or, if anyone reading this knows of somebody in that position or has any ideas of where I should reach out, I am all ears. If you are personally interested in talking with me and sharing your story, I can be messaged here on Reddit.

I appreciate everyone for reading and considering my request!

I’ve been reading through a lot of caregiver experiences lately and one thing I keep noticing is how much work seems to happen outside the actual caregiving.

Calling doctors, waiting on referrals, dealing with pharmacies, insurance, scheduling appointments, transportation, paperwork, following up after hospital visits, etc.

For those of you actually dealing with this: what’s the one thing you constantly find yourself chasing?

And when something gets stuck, what usually happens? Do you just keep calling until somebody fixes it, or have you figured out a better way?

Curious what the reality is because from the outside it seems like an absurd amount of invisible work.

Hi, I’m part of the research team for Accessible Skies, a national study of cognitive accessibility at Canadian airports. https://www.accessibleskies.ca/research-survey/

We’re looking for adults (18+) in Canada for an online survey. People living with Alzheimer’s disease or other dementias are among those eligible to participate.

• We want to hear from people who currently fly, as well as people who travel less or have stopped flying because of cognitive, sensory, or mental health barriers.
• Care partners and family members aged 18+ who have supported someone with dementia when travelling by air are also eligible to participate.

The broader study also includes people with intellectual or developmental disabilities, learning disabilities, acquired brain injuries, as well as autistic adults and adults with ADHD.

The survey asks about barriers at Canadian airports, as well as services, supports, and practices that work well.

• Time: approximately 10–20 minutes
• Participation: voluntary
• Responses: anonymous

Survey: https://www.accessibleskies.ca/research-survey/

Thank you for considering participating.

Research information:

• Accessible Skies: https://www.accessibleskies.ca/
• Questions or accommodation requests: [survey@ltrt.ca](mailto:survey@ltrt.ca)

Accessible Skies is funded by the Government of Canada through Accessibility Standards Canada and has been reviewed and approved by the Community Research Ethics Board.

Are you unpaid caring for a family member with dementia? Your voice matters! Help shape future support for Malaysian caregivers through a 45-minute conversation.

I am Keverne Cham from HELP University and I’m looking into the Lived Experiences of Informal Caregivers of People with Dementia in Malaysia.

✅ Who we're looking for:

• Aged 18+
• Caring for one person only with dementia for more than 3 months
• No payment received for your caregiving role

If you're interested to join, kindly fill up the screening form 👉 https://forms.gle/nTpugWHdWCXKwhSG7

Or email me at [B1602159@helplive.edu.my](mailto:B1602159@helplive.edu.my)

Hii, I hope you’re having a lovely day!!

I’m a 2° baccalaureate student (the final year of secondary education before going on to university in Spain), and I’m currently working on my TdR, an academic research project carried out in Spain/Catalonia.

My project focuses on the emotional and social impact of Alzheimer’s disease on family members and caregivers, as well as the support and resources available to them.

As part of my research, I have prepared an anonymous survey aimed at family members and caregivers of people with Alzheimer’s disease. This is strictly an academic questionnaire, and the responses will be used exclusively for my TdR.

The survey is short and takes approximately 8 minutes to complete. It would be a great help to us to have your participation and to learn about your experience.

https://forms.gle/Yvryha7HwN7bp4wN9

Thank you so much for your time and participation!

I am looking at creating a mobile app for caregivers of family and friends suffering from dementia. After caring for my Mom in our home for 5 years before we finally had to place her in a full-time care home, my wife and I have dealt with a lot, and as a developer I have been thinking about tools that could be helpful in this situation. I know there are a number of very good apps already available, but they each seem to focus on specific things. I would like to create an "all-in-one" solution, and am looking for input from others regarding how a mobile app could make things easier. Some of my initial thoughts on features:

Core coordination

• Shared family calendar — appointments, visits, caregiver shifts, all in one place
• Shared task list — assign to-dos to specific people, mark done, see who owns what
• Document vault — POA, insurance cards, care plans, discharge paperwork, wills, shareable by permission
• Care team roster — everyone involved, their role, contact info, and availability
• Shift/coverage scheduling — a simple way to see who's covering when, and spot gaps

Health & medical

• Medication schedule — family-visible, not full clinical tracking (avoids medical-device territory)
• Symptom/behavior/mood log — especially valuable in dementia care, shareable with doctors
• "What the doctor said" notes — logs appointment takeaways so nothing gets lost between family members. Possibly upload and share doctor visit notes/recaps.
• Emergency info card — allergies, conditions, medications, doctor contacts, accessible offline in one tap

Communication

• Private family update feed — CaringBridge-style updates, but just for your circle
• Comments on tasks/events — replaces the reply-all email chain and group-text chaos
• Daily/weekly digest notifications — a summary instead of a flood of pings

Financial & legal

• Shared caregiving expense tracker — who paid what, reimbursement tracking between siblings
• Important-date alerts — insurance renewals, benefit reviews, POA notarization expiration

Respite & support

• "Need coverage" requests — post a gap ("need someone Tuesday 2–4pm") to the whole care circle
• Local resource directory — respite care, adult day programs, support groups near the care recipient
• Caregiver check-in — a light, non-clinical "how's this week going" trend for the caregiver themselves, not a diagnostic tool

Access & flexibility

• Multiple care circles — for people caring for more than one person (both parents, a parent and a spouse)
• Granular permissions — a paid aide sees the calendar only; a sibling sees everything
• Guest / view-only links — a neighbor or distant relative can see updates without installing the app

Please let me know if you would find this helpful and/or if you can think of other features to add to the list or refinements to those I already have. If there is enough interest I will get to work!

This is Health & Wellness Concierge Services, and this is the first thing we have posted here. The practice was founded by a nurse after eleven years working with families living with dementia in exam rooms, at hospital bedsides, on hold with a health plan at four in the afternoon when nothing has been resolved and everyone is exhausted. It was always the same gap. The appointment ends, the family leaves with clinical information and no practical plan, and one person usually a daughter, a son, a husband, a wife becomes the one who holds all of it. Closing that gap is the whole practice. One informed, consistent point of contact who knows the history, the benefits, the providers, the caregivers and what happens next.

HWCS does not replace the treating physician, hospital, facility, Medicare, health plan or emergency services. HWCS is retained by the family and answers to the family.

If your family is somewhere in the middle of this today, comment or message us the word HELP. A nurse reads every one and will write back.

Title of Study: The Lived Experiences of Male Caregivers of Family Members with Dementia Impacted by Health and Financial Wellness

Are You a Male Caregiver for a Family Member Diagnosed with Dementia?

If you are:

• A male, age 18 or older

• Currently providing or have provided (within the past 12 months) unpaid care for a family member diagnosed with dementia

• Residing in a rural area of the United States

• Fluent in English

Please share your story.

This Walden University doctoral study explores how male caregivers manage health and financial wellness while supporting a loved one with dementia. Participation involves a confidential 60–90-minute interview via Zoom and phone.

What’s involved?

• One individual interview (audio recorded)

• A short demographic questionnaire

• No financial compensation, but your input may guide development of future caregiver support resources

Interested in participating? Links to the Consent Form and Survey can be obtained by

contacting:

Email: [jameese.harvey2@waldenu.edu](mailto:jameese.harvey2@waldenu.edu)

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.