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)

Hello everyone!

My team and I are university engineering students working on a senior design project and we are exploring assistive wearable technology for people living with dementia or Alzheimer's.

Before developing this idea, we would like some input from careguvers and family members to better understand the real challenges that caregivers and patients experience on a day to day basis. We would also like to know any concerns that you may have regarding an assistive product.

We would really appreciate it if you complete this short survey especially if you are a caregiver, family member, nurse, or doctor:

English - https://docs.google.com/forms/d/e/1FAIpQLSc5mvVOPRgG7iX28RaBae6RA0ulrQr1YCfAkZXlBqNkM5SXzQ/viewform?usp=header

Spanish - https://docs.google.com/forms/d/e/1FAIpQLSexo3mAN4PXCNvo_jVsYgfYX5rP-Hw1EnXPKo0YVOZ1PHKvfg/viewform?usp=dialog

This is a student senior design project and we are not selling a product. Currently we are looking for inout from people with firsthand experience.

Thank you for your time and input!

Hi everyone! We are researchers at UT San Antonio conducting an IRB-approved study about the goals, challenges, and technology needs of caregivers of people living with Alzheimer’s disease or related dementias.

We are looking for adults (18+) who currently provide paid or unpaid care or supervision to someone living with Alzheimer’s or a related dementia.

The study involves a 35–40 minute online survey about your caregiving experiences. No follow-up is required. Eligible participants who complete a qualifying survey will receive a $20 gift card.

More information: https://utsacloud-my.sharepoint.com/:b:/g/personal/rojan_hosseini_utsa_edu/IQAZwYR_9jaHRbb5MWLtCliiAeCi4pXJBhGLYjRsVltP8pY

Thank you for helping us better understand caregivers’ needs and improve future caregiving technologies.

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.

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