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Dementia Care Rapid Response Team

A phone call service for caregivers to call when they are seeing abnormal or challenging behaviors from their loved ones with dementia

Photo of Rachael Wonderlin

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Who is your idea designed for and how does it better support family caregivers as they care for a loved one with dementia?

Caregivers have a ton of questions related to dementia care. With this service, they have two options: one, set up a date and time to call with the dementia care response team. A trained dementia care consultant will talk to the family member for an hour over the phone or video chat, providing tips and advice related to community living placement, challenging behaviors, or communication ideas. The caregiver can also call during an emergency for on-call, ASAP advice related to a behavior.

Caregivers need answers to their questions, and they need to know where to find those answers. If they knew that tips and advice were only a phone call away, I think a lot of family caregivers would be relieved. This service would be available for emergency calls or pre-planned calls. Currently I offer a pre-planned phone call service through my website here

I know that The Alzheimer's Association offers a call service, but I have not heard the best things about it. We need something better. The other problem is that, for caregivers with loved ones who have other types of dementia, The Alzheimer's Association doesn't sound accessible: it sounds like it's only for people with Alzheimer's.

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

I offer a phone call "helpline" service where caregivers can set up a time to talk with me, pay $50 via PayPal, and then I will call and talk to them for an hour. I troubleshoot all of their questions and then send them a follow-up email with a summary of what we discussed. Families are able to talk to an expert in the field and get advice about anything related to dementia caregiving.

What skills, input, or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

I'd love to take my idea to a bigger platform and make it something viable that I could even do, in the future, full-time, with a team of people. I don't know how to get it there! The UK has things like this, but it doesn't look like the USA has followed suit.

How long has your idea existed?

  • 4 months - 1 year

This idea emerged from

  • An Individual

Tell us about your work experience:

I have a Master's in Gerontology and run my own dementia care consulting business, Dementia By Day, LLC. I'm a speaker and author in dementia caregiving, and my book on dementia care came out last year with JHU Press.

How would you describe this idea while in an elevator with someone?

"I'm creating a hotline for caregivers to call, in emergencies or otherwise, when working with someone who has dementia. Be it in the middle of a behavioral issue, or because they want to help someone move in to a community care center, they have somewhere to call to get expert help. The Alzheimer's Association has a hotline, but I have not heard great things about it. I want something better."

How does your idea demonstrate our Criteria of Accessibility?

This should be a federally or grant-funded program.

How does your idea demonstrate or plan to demonstrate scalability?

I already use this program via my website, and get calls from all over the country. I can help anyone, anywhere.

How do you plan to measure the impact of your idea?

Feedback and word of mouth from clients that we've worked with

What are your immediate next steps after the Challenge?

Build this program out: let people know more about it and that it exists to help them

14 comments

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Spam
Photo of Joanna Spoth
Team

Hi Rachael Wonderlin - we gathered some thoughts on your idea and would love to hear your responses!
First, we're curious about who you envision being part of your team of people. Will they be caregivers? experts? healthcare providers? We're curious if you've looked into UnitedHealthcare's Solutions for Caregivers - it's a case management service and ~10-20% of cases are Alzheimer's/Dementia related. We're working closely with UnitedHealthcare during this Challenge and heard from them that charging for a service when it's an urgent or immediate need is a tough model. In your work have you come upon on organization that's successfully modeled this, especially at scale? We'd love to hear any thoughts you might have at this early stage about how the Rapid Response Team is viable from a business perspective.
We're also curious how the Rapid Response Team is unique from organizations with case/care managers that people can hire.
Thanks and keep up your fantastic work!

Spam
Photo of Susan Jackewicz
Team

Rachel, congratulations on making the Short List of ideas! I wasn't familiar with the Admiral Nurses of the UK (mentioned by Jo Virgo) but looking at their website, aside from phone consultations there's an in-person visit by specially-trained "Admiral Nurses" https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/. It looks like a different organization than the UK Alzheimer's Society. The value here seems to be the development of a trusted relationship between the carer and the advisor, enabling a deeper conversation unveiling or defining perhaps hidden issues. Your idea of making sure people who call your help line have a follow-up, don't get lost in the system, and achieve an ongoing relationship-building with your service I think is key....aside from knowing what local resources are. It looks like maybe an opportunity to also develop a platform linking to local nodes of trained nurses like the Admirals (which is financed by a non-profit). Interestingly, altho it looks like the Admirals do great work, their website says they only have 85 of them trained in the country!

Spam
Photo of Kate Rushton
Team

Hi Rachael,

It is good to see you in the ideas phase. I am going to start by tagging a few people in the caregiving for dementia space in North America to see if they know of any similar services - Joy Johnston Susan Jackewicz Jo Schneier and Susan who posted Free US govt care summit livestreaming today Oct 16 & tomorrow Oct 17 

Spam
Photo of Kate Rushton
Team

Is there any chance you could find an image to go along with it? Images help grab attention and tell a story. You should be able to use the Edit Contribution button on the top of your post and follow the instructions to add images from there. Looking forward to seeing more of your inspiring insights on OpenIDEO.

Spam
Photo of Joy Johnston
Team

I believe the Alzheimer's Association has a national hotline. The Alzheimer's Care Resource Center also offers a 24-hour helpline, but I think it's more local-based (Florida.) I'm not sure if the other services provide a detailed followup. That seems like a nice touch.

Spam
Photo of Susan Jackewicz
Team

Here's the Alzheimer's Care Resource Center link: https://alzheimerscareresourcecenter.com/
While it has disease-specific information, it serves the South Florida region for geographically-specific resources. One of the challenges is to keep location-specific information updated - in Florida there are region-specific public resources called "211" available via phone that can connect individuals with health and human service information.

Spam
Photo of Rachael Wonderlin
Team

Thanks, I will add my current logo for it

Spam
Photo of Rachael Wonderlin
Team

The Alz Association DOES have a hotline, but I want to create something a little different. It will be national and offer both crisis response behavioral tips and scheduled call features. I also want to have that follow-up so that people don't get lost in the system once they call in for help.

Spam
Photo of Susan Jackewicz
Team

Hi Rachel,
You're right on target identifying that family caregivers need help - WHEN they need help!!! Did you see any of the video from the US National Institute of Health and Human Services Research Summit on Dementia and Family Caregivers posted earlier this week? PDF's from session papers were posted today; the Family Caregiver Stakeholder Workgroup posted one on their Top Six research priorities. #2: Reduction in caregiver stress and burden through use of navigator services and #6: More effective use of interventions based on the caregiver’s needs at different points in the care partner’s disease progression seem to be very much in line with what you want to achieve. One of the other Summit recommendations was to work on breaking down research silos with partnerships - what if you were to connect with some of the people doing this targeted research to help scale your idea? https://aspe.hhs.gov/pdf-report/top-six-research-outcomes-family-caregiver-stakeholder-workgroup

Spam
Photo of Susan
Team

I think it's an excellent idea and it looks to me like it's already being done in the UK (as you said):

https://www.alzheimers.org.uk/info/20012/helpline

and the US, which is 24/7:

https://www.alz.org/we_can_help_24_7_helpline.asp

I called the US 800 line and was surprised to get through, despite the fact that I'm in Canada. Although I was on hold for about five minutes, the woman with whom I spoke was very helpful. She asked a number of screening questions, and when I said I wanted advice about my mom's behaviour, she offered to connect me with a consultant who could help me with that.

The best part is all of this free.

I was impressed. That said, I didn't go as far as the consultation, so I don't have experience of the quality of the advice. The website says the helpline offers "Confidential care consultation provided by master's level clinicians who can help with decision-making support, crisis assistance and education on issues families face every day." The proof of that pudding would of course be in the eating.

Rachael, I'm thinking the Alz.org hotline would be tough to best. How would your proposed idea differ and/or improve on what they have to offer?

Spam
Photo of Ruth Anne
Team

Susan, great feedback and an important question considering the resources Alzheimer's Association have. Let me add a thought- In a recent conversation with our local program director for AA she acknowledged that the calls go to a national receiver who then disseminates the calls to a local provider for follow up. I do not believe these connections offer immediate crisis support. The development of that would be awesome!

An additional thought- Rachel- do you have system set up to quickly connect you with the history of a caller. I would imagine understanding some of the background of the person and care support situation would be invaluable.

I would like to stay in touch with you as a resource for folks that I come in contact with. Can you send me an email to ristow@dementiaredefined.com for further collaboration?

Spam
Photo of Joanna Spoth
Team

Rachael Wonderlin we love seeing this collaborative string of comments! Thank you Ruth Anne , @Susan Jackewicz and @Susan. Rachael, we're eager to see how to integrate this knowledge into your idea and what experiments you might be interested in trying out in the next few weeks! Remember to let us know what you've added to your idea in the title so we can quickly see. Keep up the wonderful insights and knowledge-sharing, all!

Spam
Photo of lonnie
Team

interesting your service is called attention

Spam
Photo of Jo Virgo
Team

We have a free service in the UK similar to this. its run by the Admiral Nurses.