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Helping caregivers & families with a dementia diagnosis turn "What's next?" into "Next steps"

Updated 12/26/17 (uploaded new home page pic w/condensed menu bar & p/user feedback, added a tagline, updated doc/videos)

Photo of Tonia Porras
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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?

Gloria's Way memory care, http://www.gloriaswaymc.org, is designed for 1) individuals living with early stage dementia, their caregivers and families. Specifically families who need help with caring for their loved one but do not have the means to afford the current high costs of care and are not applicable for low income subsidies; 2) Community residents and business owners.

Recent research presented at this year's 125th annual meeting of the American Psychologial Association revealed that loneliness and social isolation pose a great public health threat and their impacts have increased and will continue to grow. * 

As part of this impact, a growing number of caregivers being diagnosed with dementia without having a history of it in their family is growing due to these very issues - isolation, lack of activity, falling into depression, among others.  It is imperative that people with dementia and their caregivers continue to live out in the world, in the communities in which they know, to interact and stay connected.

*Julianne Holt-Lunstad, professor of psychology at Brigham Young University, noted that "being connected to others socially is widely considered a fundamental human need - crucial to both well-being and survival."


The Mission:

The mission of Gloria's Way is to serve as a one-stop dementia resource bringing necessary services at an affordable cost, directly to our members in their homes and communities. 

Gloria’s Way aims to support this growing population of caregivers and families by promoting and providing family-centered education, wellness, support and respite services at an affordable cost. 

Gloria's Way will provide caregivers with a team of empathetic professionals and volunteers who will assist caregivers in navigating the complex landscape of information and resources to help their loved ones achieve best quality of life possible.

http://www.gloriaswaymc.org


Business model:    

For a nominal membership fee, Gloria’s Way will coordinate and offer an array of service programs in its key mission areas; social, wellness and education - Through regular social events, caregiver and education classes, support groups, assistance with errands, respite and more.

Gloria's Way will seek not to compete or provide redundant services that are currently being offered in the communities in which we choose to work, but intends to work with and complement existing service providers through use of an integrated community-based model that combines the efforts of members and volunteers with the services of local vendors and community organizations to offer services at very affordable prices or for free.


Value of Gloria's Way:

Caregivers:  Through our Memory Care Navigation program - members will receive 1:1 personal assistance in creating and implementing a care plan focused on members financial, healthcare, and wellness needs. A better understanding of the landscape, a support network, and an organization you can trust for answers to most of your needs.

Person's living with dementia: Through our Memory Care Navigation program - 1:1 personal assistance to live life more fully with dementia;  Developing a support network in community.  

Health sector:  Acting as a landing pad for recently diagnosed patients.

Community members, businesses and organizations:  A deeper understanding of the disease, how to identify and interact, a flow of information and services between all the organizations working in community

 


Person-centered:   Gloria's Way member programs ease the burden and enhance the quality of life for families struggling with this overwhelming journey.  As part of being a valued member of Gloria's Way, members will receive our concierge services.   

Concierge services:  

  • Care coordination and Navigation services to support personal independence - (The foundation program of Gloria's Way)
    • Each family who becomes a member will be assigned a Care navigator  to assist caregivers in creating and implementing a care plan focused on financial & estate planning, end of death documents, organization of bill pay, understanding medicare and medicaid, and answering questions about the disease.  
  • Respite services for the caregiver - provide non-medical companionship and supervision so the caregiver has some time away.
  • Tech services - lessons on 'how to' with phone apps, iPad & computer usage
  • Health and medical information resources
  • Transportation 
  • Home maintenance including light yard work and minor home repairs.


Public programs:  In addition to above, our public programs are designed for individuals living with dementia, family members and caregivers to experience together or individually.  All public programs will be offered in partnership with outside organizations running dementia specific programs. For example: The Alzheimer's Association could provide much of our education & support group programs.  GW will facilitate finding and scheduling the space to hold these programs.  

1) Education events - Disease and caregiver education, tech workshops (how to's, new apps available for use, etc),  research trials

2) Support groups - for persons living with dementia, their families' and caregivers to attend together or individually

3) Fitness & Wellness activities - yoga, meditation, other forms of exercise, 

4) Socialization - events out and about in the community 


We often get asked:  "How does it work?"


The need:  Coordinating these efforts at this level is crucial because local communities are not currently fully equipped to provide support networks for this vulnerable and rapidly-growing population. Although an arduous task, we believe Gloria's Way can make a measurable and sustainable impact through meeting these needs.

Market opportunity:  Done right, dementia villages could potentially prolong independence for those with Alzheimer's disease, boost workforce productivity by helping their caregivers, and take part in building age-friendly cities, all while increasing revenues for local businesses, other non profits and innovators. 

Affordability:  The cost comparison of services charged annually by Gloria's Way vs hiring individual companies to perform the same services is considerably less.  

Profitability:   Because of Gloria Way's focus to keep costs affordable, I do not foresee profitability being extremely high (we are researching revenue sources to make GW more profitable and interested in hearing from the IDEO community!).  However, businesses who partner with Gloria's Way could potentially see an uptick in profits due to Gloria's Way serving as a hub for all businesses providing services or consumer goods to the dementia population.  


How can existing technology help create and sustain dementia villages?  

  • Help to connect caregivers to each other in community
  • Help to keep GW organized internally
  • Help to connect our clients with our service providers
  • Help to keep our clients connected to out of state family members and their care partners
  • Help to create buzz, add additional programming, stay engaged, & provide opportunity and education
  • In-home safety and providing alerts to our staff


Benefits for our members: 

  • Lower costs for families
  • A way to learn, educate, and empower oneself 
  • Respite for the care partner
  • Social events that are fun, accepting, caring, and inclusive of everyone within the community
  • Activities that encourage an active life style through social connections and active engagement  
  • Services such as transportation, light grocery shopping or light yard work
  • A way to age well in one's community and home


Benefits for our volunteer workforce: 

"In July the Corporation for National and Community Service released new data showing further evidence that consistent volunteering can improve the health and well-being of people older than age 55."*

Our workforce will consist of both paid staff and volunteers local to the area.  Our focused volunteer age group are retired residents over the age of 65.  Our second largest volunteer group are college and high school students.  

User Journey: (UPDATED 12/26/17) There are many scenarios, but below is link to videos that help to explain user journeys (and links to our youtube page with more videos).

https://www.youtube.com/playlist?list=PL2faZTp7UO0JKbm3uMVUyOGcLB5bJ12Zf


Potential Partnerships:   Updated 12/19/17

  • Working with local gerontologists & neurologists as a referral service
    • I met with a gerontologist at two of our major hospitals who are interested in discussing a collaboration with Gloria's Way to provide a program where 5th yr residents of the hospital provide respite services to our members.  
  • Local Universities and High schools
    • In talks with a two local universities for providing interns and/or students for service opportunities along with being included in curriculum for the 2018-2019 school year
  • Local non profits supporting the dementia population
    • I have met with many of the local organizations and have received positive feedback to participate
  • Alzheimer's Association chapters
    • Spoke to a local chapter and we are in talks in providing education and navigation for our members for the pilot program
  • Local businesses  
    • receiving positive feedback to participate once up and running
  • Assisted living facilities
    • We've met with 3 now and all are starting to recognize our benefit to them and vice versa.
  • Senior centers
    • Have scheduled two public meetings to "introduce" GW to the community.  Also partnering with another local organization to get the word out
  • Local municipalities 
    • have spoken to all but 1 of the municipalities that we are working in.
  • Faith communities
    • Starting conversations with 3 so far.


Prototypes used for user research / feedback (UPDATED 12/26/17)

View this link for details:  https://docs.google.com/document/d/18bTYALZyRTvIz_8-B4-an686tKSTJXtmouRqYtKBE6E/edit?usp=sharing


Resources: *

Aging Today - Nov/Dec issue 2017

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

Most of the business and logistical structure, participating businesses and services are in place to conduct an initial pilot within four bordering communities. The plan is to conduct a three-month program during which, measures will be tracked to assess impact, outreach, and success of programs. We also plan to assess tech apps that connect our network members and our supporting staff/volunteers.

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

Support and expertise in fund-raising; app support: - guidance with information technology and application to reach dementia population and care givers, how to use geo fences to alert or find families in the areas in which we work who are on the internet looking for caregiver services (or Im not sure what, but using tech to help the caregiver find us and us them. There is so much on internet that it can get overwhelming). price sensitivity models for elderly population; marketing and promotion.

How long has your idea existed?

  • Over 1 year

This idea emerged from

  • An Individual

Tell us about your work experience:

Prior to moving home to care for my mother, I worked in the non profit sector. Since moving back home and meeting a group of respected physicians & executives in the field, Ive found my entrepreneurial spirit and started Gloria's Way.

How does your idea demonstrate our Criteria of Accessibility?

Costs do not depend on more users to cut costs. Costs do not fluctuate. Because we are simply a networking space, once a cost is created, they are not dependent on external market pressures. However, our

How does your idea demonstrate or plan to demonstrate scalability?

Gloria's Way plans to launch in four bordering communities, creating a dementia-friendly "village"- the first of its kind in the region. However, the need extends far beyond. Gloria's Way has great potential for growth, and the demand for its services is widespread. Once our initial village is up and running, we will spread our umbrella to the surrounding communities/states setting up additional dementia villages. We envision the spread to be done through both physical and tech based tool kits

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

Through feedback and tracking measures that will assess impact and outreach. For instance: Number of caregivers and family members served within community; Navigation service provided to caregiver and identification of barriers that impact outcomes; Number of referrals to Village network of service providers and volunteers; how many services were used or accessed by caregivers and what was satisfaction with quality and scope of service(s) provided; etc (more to data to be collected)

What are your immediate next steps after the Challenge?

Take ideas offered from the IDEO community, results from our prototypes and implement them into our pilot program.

30 comments

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Photo of Tonia Porras
Team

To begin - I do not know if here is where I am supposed to be putting my updates, but I thought I remembered reading an email mentioning editing updates in the comments section since we will not be able to make any changes....Not sure if this is correct, but here is where Im putting my updates.

Radio silence has been due to planning for two events GW hosted, in partnership with another local organization that is providing similar services, but to active older adults. We realized where are synergies lie are in the idea that one family unit can benefit from both of our services. We both understand the two very likely scenarios we will face with our members - 1) The majority of my family members, will be dealing with a spouse who is does not have dementia, while their partner does. 2) vice versa for the organization whom I have partnered with on certain programming, and who is providing support services to healthy and active older adults. In both of our opinions, it was a no brainer.

Re: Events - the purpose of our first event to was 1) introducer our organizations to the community 2) to gather local thought leaders, community and faith leaders, and business professionals to discuss the importance of starting serious discussions on how the communities plan to support the aging population. Our second event was specific to inviting community residents to learn about our services.

Our first event was filled to almost capacity with approximately 110 attendees. Of that amount, we had three Mayors, councilmen and women, CEO's of local area agencies focused on Dementia and Aging, representatives from three of the local universities, medical professionals and the like. Our second event was attended by 35 local residents. For our first planned events, we expected turnout to be considerably less. Good news is that we are not the only community members recognizing the importance of the future of our aging population. The events happened this past Thursday & Friday. From those events, besides countless follow ups on discussions had at the event, we have two planned invites to speak in front of our city boards to speak about our organizations and future integration into the community.

Re: marketing, updates on GW programming - for the events, I created the postcards - content and design. I find myself enjoying the creative / design end more and more. The more and more I get into developing programming and in the case of the trash program, running programming, I am understanding how the importance of tech to support our work in a number of different areas - i.e. work flow organization, alerts, mapping, etc...

Re: Our trash program for seniors has proven to be a success. We started out with 75 homes and three weeks later are up to 105. We are constantly being told by our customers what a wonderful service we are providing. One couple, specifically said that 2yrs back the husband and fallen and hit his head- causing him to get surgery and the dr told him that if he fell again, it could lead to death. They had been paying a costly amount to pay for someone to take their trash up and down the curb. They expressed their excitement that we were providing that service instead.

Photo of Tonia Porras
Team

I had a meeting with the local Alzheimer's Association and they are coming around to understanding the advantages to working together. They mentioned my organization potentially acting as a "bridge" between local org's providing support to families living with dementia in our area. We are looking into cross-pollination programming - specifically for our pilot program.

Photo of Tonia Porras
Team

I continue to update my website based on feedback sent out in the refinement phase, and from the website architect who volunteered to assist in refining my website. I have brought on two families (possibly three) who are interested in participating in our pilot program when it gets its start! I have also brought on a very part-time operations/admin person to start in March and have been accepted to join an accelerator program for funding - one of my main hurdles to overcome. stay tuned for more updates.

Photo of Tonia Porras
Team

Great news! We have partnered with one of our communities we plan to work in, to run a pilot program for them. They are interested in running a pilot program for seniors who live in their community and are not able (due to health) to haul their city sponsored trash bins down to the curb for trash day. They have asked us, along with one of our partner organizations to run this program for them. We start tomorrow and have already signed up 14 volunteers (some through our collaboration with one of our local universities) and 75 residents for this program! We have also partnered with two of the communities we plan to work in, their Chamber's of Commerce, to hold two events to introduce our organization to the communities senior population! They are both scheduled for the end of January. One event is for city and faith leaders in the community. The second is for community residents - who may either benefit from our services or interested in volunteering. We plan to bring in two speakers for each event. One speaker from the Cleveland Clinic Gerontology department and the second speaker from the Age Friendly Communities program at The Ohio State University.

Photo of Joanna Spoth
Team

Hi Tonia Porras . Loving your partnerships update! Thanks for the addition. Can you tell us a bit more about these? Which do you see as some of the most strategic, how did they form, and what do you see as next steps?
We're also curious to learn more about how you measure local impact. Can you give us some examples of how you've done that in the past?
Lastly (for now! :)) Can you share more about what your employee structure looks like?
Thanks - Brittany Margot tagging you in this, too!

Photo of Dianne L Chen
Team

Hi Tonia Porras ,
Hivemind - caregiver mentoring network could augment your platform as a resource to connecting with caregiver mentors.

Also, we're looking for feedback from new/former caregivers and would appreciate if you shared this survey: https://lnkd.in/gStFDEy

Thanks in advance!

Photo of Tonia Porras
Team

Ill look into it now and do what I can to help get feedback. And I am interested in speaking more in depth about your comment. Pls email me - tporras@gloriaswaymc.org to discuss.

Photo of Brittany Margot
Team

Hi Tonia Porras  - welcome to Refinement! It's exciting to see your idea grow and evolve. The links to your website are a great addition!

We also encourage you to develop a user journey map depicting Liz and/or Tom's experiences. Don't forget to add visuals! Images or hand drawings are attention-grabbing and often helpful in understanding the user experience. Check out the Refinement Toolkit for more information.

Start thinking about a small experiment you could test in the next few weeks. Perhaps inviting caregivers and care-recipients to try out the steps in "How it works"? Gathering feedback? Please reach out with questions! or feel free to email me at bmargot@ideo.com.

Photo of Joanna Spoth
Team

Hi Tonia Porras - we're loving your updates in the Refinement Phase so far. However, we noticed your idea is in "Draft" form. This means the OpenIDEO team can still see it, but not any other community members. We encourage you to republish your idea by hitting the "edit contribution" button and then the "publish" button. That way people can comment and collaborate with you!

Photo of Diane Tishkoff
Team

I agree with your supporters. Fabulous idea! This type of support is desperately needed by all the involved parties in every family affected by Dementia and Alzheimer's. Being a caregiver is difficult and often overwhelming — having this community support structure makes a lot of sense. I wish you the best of luck on developing this idea further. It’s certainly thoughtfully considered and respectful in tone. I will be following your progress.

Photo of Ruth Anne
Team

Congratulations on the development of Gloria's Way! How inspiring!! Our vision is similar! Where are you located? For clarity, is their a particular part of your organization you are looking for support with? Please check out my projects and give feedback! I want to learn as much as I can from others during this process! Thanks

Photo of Tonia Porras
Team

Hi Ruth Anne,

Lets touch base via email - feel free to email me at tporras@gloriaswaymc.org

Photo of Molly Oberholtzer
Team

Hi Tonia, congratulations on Gloria's Way, and thank you for your contributions to this open IDEO challenge. I think interfacing with community organizations, is a great idea. You may already be aware of this, but I think you might enjoy this webinar from the other week: https://livestream.com/wmht/nov16 specifically the work they do to help caregivers connect to the community, you may find inspiring.

Photo of Tonia Porras
Team

Thanks for this info. Ill make sure to look into it!

Photo of Mike
Team

The village idea for this is great. I believe having this spread out to communities rather than just families will make it easier for people to feel not as isolated. That is huge when considering the work they have to do to help their loved ones. Great great idea. I love this approach.

Photo of Tonia Porras
Team

Hi Mike! I kind of love the idea too. Hoping the Ideo community does as well. So far there have been some really great ideas submitted. Its really incredible to see not only that there is interest in creating a better world for families with dementia, but that so many young people are getting involved and seem to truly care about this population!

Photo of Maria
Team

This type of support is needed by all the care givers of those with Dementia and Alzheimer's. being a care giver is and can be overwhelming and having this community support structure makes so much sense. I wish you the best of luck on this out of the box idea. well thought out and I will be following the progress of this.

Photo of Tonia Porras
Team

Thank you Maria for the kind words and votes of support! I will keep you looped in as we develop :)

Photo of Susan Hamilton
Team

Hi Tonia,
I love your idea and amazing resources for caregivers. Do you think we can talk about someone collaborating?
Susan

Photo of Tonia Porras
Team

Hi Susan,

Would love to discuss!

Photo of Susan Hamilton
Team

Great. Email me at susan_hamilton@carebetter.net and let's set up a time.

Photo of daniel
Team

I feel this is such a needed and great idea. Having a loved one with Alzheimer's and the. seeing my other parent deal with their own health issues as a result was really upsetting. We need more help within communities. There seem to be so few resources at the local community level that it's surprising. I see this concept as a way to address that.

Photo of ygnacio
Team

I currently run a school that focuses on students with social emotional challenges (anxiety, depression, substance abuse, learning differences etc.) and I know how important it is to work with wrap-around services in the community. As a school we can't really help support these students and their families on our own; we are most effective when we are working with organizations in our local area. Fortunately there are so many programs and services out there for kids and connecting to them is relatively easy. I am so happy to see someone doing this for the Alz and dementia community. The idea of a ALZ friendly "village" is amazing!! It is not only about connecting dots that already exist (which in and of itself it incredibly helpful), but when you add the multiplication of those dots it becomes truly transformative!!!! Good for you!

Photo of Tonia Porras
Team

Thank you! Interested in learning more about how you work to keep those connections.

Photo of Marisol
Team

Being a caregiver myself, I love all the app ideas, but just as important, if not more, is the community support so I can trust that my mom who has alzheimer’s has an in person support network close to where she lives.

Photo of Tonia Porras
Team

Thank you for your comment. To your point - there was a very important Government conference this fall that focused on caregiving, research, and how to more effectively and efficiently provide support programming. The summit was based around convening not only physicians, social workers, researchers and other professions in the Health sector, but also gaining insight from caregivers, persons with dementia, family members, etc. Comments coming out of that conference stated that it was interesting how there was so much talk about technology as being an answer to a lot of the issues. Their was disagreement and a statement that what contributors and the public can not look past is that although technology can in fact help to achieve much of the need in dementia support, it can't ever replace the natural and human need for personal connection & socialization outside of your home and with others. We can't forget - a growing problem with people who have dementia and their caregivers, is isolation, lack of activity, depression. You can only get so much from looking at and interacting through a screen. Its imperative that People with dementia and their caregivers continue to live out in the world, in the communities in which they know or at least in which they can interact with others and stay connected. I believe finding that balance of the two - community and technology is what is exciting to think about for the future of dementia caring.

Photo of leigh
Team

I have watched Tonia develop and grow this idea since it’s inception. Through the entire process I have been amazed with her dedication to her mother and determination to take what she has learned through this difficult journey and help others.

Photo of Tonia Porras
Team

Hi Leigh,

Thank you for your kind words and unwavering support of Gloria's Way.

Photo of Karen
Team

I see this as putting your oxygen mask on a plane, first, so you can help others. Having been close to family members with alzheimers and also dementia, I have a deep understanding of how these are truly a family condition that deeply affects everyone physically, emotionally and mentally. Putting emphasis on caregivers, it's crucial to ensure the better caring and quality of life of the patients themselves.

Photo of Tonia Porras
Team

Hi Karen,

Thank you for your support!