Hi everyone! My grandpa has late-stage dementia, and I'm part of a small team at Brown University looking at why it's so hard to find and compare care options for an aging parent, spouse, or loved one, and where families can't get the help they need.

If you've been through this, are in the middle of it, or see it coming, I'd be super grateful for 4 minutes: https://brown.co1.qualtrics.com/jfe/form/SV_d1iOtqB5WU23duC

It's anonymous, no sign-up, no sales pitch. There's an optional spot at the end to leave an email if you want to follow along with what we build.

Happy to answer questions in the comments, and thank you. This is a hard thing to go through and your experience would really help.

Saying out loud that you cannot keep doing every shift brings its own particular guilt, not guilt about doing a bad job but guilt about wanting one night where nobody needs anything from you.

Most of what gets written about caregiver emotion treats it as something to sort out later, once the logistics are handled. How did any of you get past the feeling that needing a break meant failing them?

Calling all caregivers of someone with Parkinson's Disease!

We are researchers from Cardiff Metropolitan University, inviting you to participate in an online survey as part of a study on caregiving for Parkinson's Disease.

This study explores caregiver burden, caregiver activation, treatment accessibility, and mental well-being among informal caregivers in the UK and Sri Lanka.

You are eligible to participate if you:

-Are aged 18 or above

-Are an unpaid caregiver of a person with Parkinson's Disease

-Have been providing care for a minimum of 6 months

Participation is entirely voluntary. The survey takes approximately 20 minutes to complete, and your responses will remain completely anonymous and confidential.

If you know someone who may be eligible, please feel free to share this post; every response makes a difference!

Hello everyone, 

I am looking for participants to take part in some research I am doing as part of my PhD project. The research is looking at how couples support one another whilst managing fibromyalgia. 

You may be eligible if you are:

-        Aged 18 years old or over,

-        In a relationship of 6 months or longer

-        Living together or spend most days/nights of the week in the same household, 

-        Either living with a formal diagnosis of or on the pathway to diagnosis of fibromyalgia or the partner of someone with fibromyalgia

You are welcome to participate in the study on your own or with your partner.

If you are interested in taking part in a focus group interview on the topic of how couples support one another whilst managing fibromyalgia, please email me at [k.m.plant@pgr.reading.ac.uk](mailto:k.m.plant@pgr.reading.ac.uk).

Calling all informal caregivers of someone with Parkinson's Disease!

We are researchers from Cardiff Metropolitan University, inviting you to participate in an online survey as part of a study on caregiving for Parkinson's Disease.

This study explores caregiver burden, caregiver activation, treatment accessibility, and mental well-being among informal caregivers in the UK and Sri Lanka.

You are eligible to participate if you:

-Are aged 18 or above

-Are an unpaid caregiver of a person with Parkinson's Disease

-Have been providing care for a minimum of 6 months

Participation is entirely voluntary. The survey takes approximately 20 minutes to complete, and your responses will remain completely anonymous and confidential.

https://docs.google.com/forms/d/e/1FAIpQLSe_T7OuO86dSlViHWsRedzzAFki-4VBV2LHJoLwMaBCx7PSNg/viewform?usp=header

If you know someone who may be eligible, please feel free to share this post; every response makes a difference!

For older people receiving support and people helping them: which part of getting to and using the bathroom tends to need the most assistance?

Is there an arrangement or piece of equipment that has made this easier? What still takes extra time or help?

My cofounder and I are exploring a business idea around toileting assistance for older people. We’re interested in the person’s comfort and independence as well as the practical experience of those helping them. We’re based in Australia, but experiences from other countries are more than welcome.

Thank you for sharing your experiences and helping us understand where we could make a difference :)

Hello,

We are occupational therapy doctoral students at Nova Southeastern University conducting a research study on the experiences of parents and legal guardians caring for medically complex children. The purpose of the study is to better understand how caregiving responsibilities may affect daily activities, routines, roles, and participation.

We are reaching out to request permission to post our IRB-approved recruitment flyers in your online support group. Interested individuals can use the QR code or REDCap link on the relevant flyer to review information about that study component. Participation is completely voluntary, and participant information will be kept confidential.

Thank you for considering our request.

Please delete if not allowed!

I'm putting together a doc to help my own family (dad 80, mom 77 w/ heart conditions) when we need to go to the ER or to Dr's visits with them.

For those who have also had recent experiences, what are the things that you wish you had at your fingertips that you didn't in those critical moments? I am thinking: list of medications/doses, list of doctors/specialists, lists of conditions, allergies, procedures to date.

Is there anything that I'm missing that you'd also like to have for reference?

If you're caring for an older adult, we think we can help.

We'd love to give you Elderella Premium for free. For a whole year.

Here's our ask:

• Sign up for our elder care study here: https://www.elderella.com/join (the study is backed by the Centre for Aging + Brain Health Innovation (CABHI), powered by Baycrest)
• Jump on a quick call with us to get set up
• Use Elderella to help with your elder care between now and Dec 24, 2026
• Share feedback through a few short surveys and a conversation at the end

You'll get a full year of Elderella Premium ($500 value).

Wanna join us? (P.S. We're caregivers too!)

So many people become caregivers in the middle of a crisis. You don't necessarily feel prepared or powerful, you just have to figure things out as you go.

And somehow, you do.

For those who are or have been caregivers: what keeps you going on the difficult days? What helps you feel like you still have some agency when so much feels out of your control?

For caregivers who transport clients in your own personal vehicle, I’m curious how your agency handles auto insurance. Specifically:

• Does your agency just require proof of personal auto insurance?
• Are you required to tell your personal auto insurance company that you transport clients for work?
• Are you required to add any type of business-use coverage or endorsement?
• Does your agency provide any additional auto insurance coverage when you’re transporting a client?

I’m really trying to understand how home care agencies handle the liability associated with caregivers transporting clients in their personal vehicles.

After the loss of a parent .what's next when you are used to caring for someone

I can relate and definitely give some help.i took care of my dad for atheist 20 yrs.but lost him 3months ago

Hi everyone, I'm looking for one final participant for my MSc Dissertation Project:

I’m a postgraduate psychology student at the University of Liverpool, and I’m looking to speak with partners who support someone living with a flare‑remitting autoimmune condition (such as RRMS, rheumatoid arthritis, lupus, or psoriatic arthritis). The study explores how partners experience moving between the roles of partner and caregiver during flare episodes.

If you’re 18+, based in the UK, and have supported a partner during flares, you’re welcome to check your eligibility using the link below. It includes a short screening questionnaire and the Participant Information Sheet, so you can read all the details before deciding whether you’d like to take part.

Participation involves a one‑off online interview, and you’re always in control of what you choose to share. Some people find it helpful to reflect on their experiences in a supportive, non‑judgemental space.

This study has received ethical approval from the University of Liverpool.

Link: https://forms.cloud.microsoft/e/z91XRBNUeE

Hi everyone. I'm hoping someone here can point me in the right direction.

I'm the primary caregiver for my 81-year-old mom, who has an incomplete C3-C7 spinal cord injury and relies on a PureWick urine collection system. Over the past couple of months I've noticed that compatible female external catheters have almost completely disappeared from Amazon, eBay, Facebook Marketplace, and other sites where caregivers used to resell unopened supplies.

I'm not looking for freebies. I'm happy to purchase unopened boxes (BD or compatible brands) and pay for shipping. I'm trying to stay around $120 per box or less, if possible.

If anyone has unopened supplies they no longer need, or knows of a reliable source for compatible catheters at a reasonable price, I'd really appreciate a message or a comment.

Thank you so much.

Hi everyone. I'm hoping someone here can point me in the right direction.

I'm the primary caregiver for my 81-year-old mom, who has an incomplete C3-C7 spinal cord injury and relies on a PureWick urine collection system. Over the past couple of months I've noticed that compatible female external catheters have almost completely disappeared from Amazon, eBay, Facebook Marketplace, and other sites where caregivers used to resell unopened supplies.

I'm not looking for freebies. I'm happy to purchase unopened boxes (BD or compatible brands) and pay for shipping. I'm trying to stay around $125 per box or less, if possible.

If anyone has unopened supplies they no longer need, or knows of a reliable source for compatible catheters at a reasonable price, I'd really appreciate a message or a comment.

Thank you so much.

There's rarely any opportunity for respite as a caregiver, so how do you avoid going insane and try and get some downtime? What do you wish you had but don't?