Tusk: Care Navigation Tool

Build Her Business
Edmonton

C$0

Failed
Funded Of C$5,000 Goal
0% Raised
Build Her Business Category
Non-Profit Organization Type
0 Time left

Select Rewards

Make a boost without a reward

Thank you so much for supporting us! We'll share our progress and news with you!
CAD
Thumbnail of: BONUS REWARD- Book Giveaway - 24 hours ONLY

BONUS REWARD- Book Giveaway - 24 hours ONLY

BONUS REWARD- Book Giveaway - 24 hours ONLY

Pledge: C$25.00
In addition to the Tusk level rewards, obtain a copy of Johnna Lowther's 2014 book "Through the Eyes of Dementia: a Pocket Guide to Caregiving." Here's a synopsis: SURVIVE and THRIVE in the world of dementia! This is your personal guide from an industry insider to give you all the tips and techniques that professionals use every day while working with this painful disease. This knowledge can lead you into a relationship that is more peaceful, loving and fulfilling.
In addition to the Tusk level rewards, obtain a copy of Johnna Lowther's 2014 book "Through the Eyes of Dementia: a Pocket Guide to Caregiving." Here's a synopsis: SURVIVE and THRIVE in the world of dementia! This is your personal guide from an industry insider to give you all the tips and techniques that professionals use every day while working with this painful disease. This knowledge can lead you into a relationship that is more peaceful, loving and fulfilling.
Pledge: C$25.00
Estimated Delivery: 2020-03-11
0 of 10 Boosted
Thumbnail of: BONUS REWARD- 30 min meeting with Heather Barnhouse to talk IP and Business Strategy ***Available Feb 7, 2020 20:00 until Feb 9, 2020 at 15:00 only ***

BONUS REWARD- 30 min meeting with Heather Barnhouse to talk IP and Business Strategy ***Available Feb 7, 2020 20:00 until Feb 9, 2020 at 15:00 only ***

BONUS REWARD- 30 min meeting with Heather Barnhouse to talk IP and Business Strategy ***Available Feb 7, 2020 20:00 until Feb 9, 2020 at 15:00 only ***

Pledge: C$50.00
Entrepreneurs! What burning questions do you have that you want to discuss with a lawyer who helps women entrepreneurs grow and scale their businesses? In addition to the TUSK level rewards, for 2 days only, get a free 30 minute consult with Heather Barnhouse.
Entrepreneurs! What burning questions do you have that you want to discuss with a lawyer who helps women entrepreneurs grow and scale their businesses? In addition to the TUSK level rewards, for 2 days only, get a free 30 minute consult with Heather Barnhouse.
Pledge: C$50.00
Estimated Delivery: 2020-03-13
0 of 5 Boosted
Thumbnail of: SAGE

SAGE

SAGE

Pledge: C$10.00
Your donation will be used to make the platform available to individuals in need who are unable to fund a subscription on their own. We use the honour system for anyone indicating that they are unable to afford it, and we will make the platform available to those people, in first come, first served manner, for a period of one month. We are a not for profit, that is aiming to provide support and awareness for caregivers, no matter their financial position.
Your donation will be used to make the platform available to individuals in need who are unable to fund a subscription on their own. We use the honour system for anyone indicating that they are unable to afford it, and we will make the platform available to those people, in first come, first served manner, for a period of one month. We are a not for profit, that is aiming to provide support and awareness for caregivers, no matter their financial position.
Pledge: C$10.00
Estimated Delivery: 2020-03-04
0 of 80 Boosted
Thumbnail of: TUSK

TUSK

TUSK

Pledge: C$20.00
Two month access to Tusk Platform : Users at this level will get access to the Tusk platform for 2 months, which is 50% of the regular monthly price.
Two month access to Tusk Platform : Users at this level will get access to the Tusk platform for 2 months, which is 50% of the regular monthly price.
Pledge: C$20.00
Estimated Delivery: 2020-04-01
0 of 250 Boosted
Thumbnail of: IVORY

IVORY

IVORY

Pledge: C$50.00
Fifty (50%) off for 3 month subscription fee on conversion to paid member. Users will get two months free access to the platform. Following the two month free access, they will be able to convert to being a paid member at half price for the duration of their subscription, for the first three months. Regular pricing will apply beyond the two months of free access, and then three months of 50% off.
Fifty (50%) off for 3 month subscription fee on conversion to paid member. Users will get two months free access to the platform. Following the two month free access, they will be able to convert to being a paid member at half price for the duration of their subscription, for the first three months. Regular pricing will apply beyond the two months of free access, and then three months of 50% off.
Pledge: C$50.00
Estimated Delivery: 2020-04-01
0 of 100 Boosted
Thumbnail of: BOOST without reward

BOOST without reward

BOOST without reward

Pledge: C$25.00
Thank you for your generous support. We will keep you updated on news and milestones. Be sure to follow up on social media.
Thank you for your generous support. We will keep you updated on news and milestones. Be sure to follow up on social media.
Pledge: C$25.00
Estimated Delivery: 0000-00-00
0 of 100 Boosted

Campaign Description

The business provides awareness and support for caregivers of people living with dementia. It uses a proprietary platform to help caregivers navigate the system, to most effectively and efficiently allocate resources and service providers to meet the identified needs of caregivers. The platform has a wellness tracker (focused on the caregiver's wellness) and a symptom tracker (focused on the symptoms of the person living with dementia), where the caregiver update at their leisure. Based on the self-reported findings, the platform curates a list of recommended resources and service providers to provide additional support and awareness for the caregiver. The caregiver can glean the big picture of what the journey might look like over the life of the degenerative disease, and be supported throughout that journey.

What is Tusk?

Tusk is a platform that allows caregivers who provide care in the community to people living with dementia to be able to access resources (education and information) and service providers in the community.

Tusk focuses on the caregiver, and on providing support and awareness to the caregiver who is providing care for their loved one.  We believe that caregivers who are empowered to find resources at the right time, and access services that are helpful to them will be more resilient, better able to cope and experience fewer episodes of caregiver burnout.

Tusk has two unique trackers, which are subjective, and therefore customized for the caregiver.  The first tracker, a wellness tracker, focuses on the caregiver.  Caregivers report their feelings of how well they are managing, coping and how overwhelmed they feel.  Based on their self-reported findings, Tusk recommends specific resources that may help them better cope or reduce their feelings of stress.

Secondly, there is a symptom tracker, which focuses on the person living with dementia.  The caregiver reports the symptoms, to better understand which stage of the disease the person living with the condition is in, so that they have a better wholistic understanding and can manage expectations and demands on them.  The platform also recommends specific resources for the caregiver based on the reported symptoms, again with the goal of maximizing support and understanding for the caregiver.

 

What was the Genesis for Creating this Company?

Carolyn, a caregiver to her husband Clarence, who has vascular dementia, has always been an able caregiver.  Considerably younger than her husband, and is extremely organized and efficient with her tasks.  Four and a half years ago, Carolyn was unexpectedly diagnosed with breast cancer, and faced her own health challenges as a result of the severe negative consequences she faced from that. Clarence unfortunately had a massive stroke at approximately the same time, which resulted in a sudden escalation in his symptoms and needs, at the very time when Carolyn was unable to provide for herself, let alone him.

Carolyn’s daughter Heather was the go to in terms of calling on a daily basis to provide additional support to the person living with dementia (Clarence) and the primary caregiver (Carolyn), while the primary caregiver was unable to provide care for herself.  Heather has a busy full time day job as a corporate/commercial lawyer with the world’s largest law firm, and was strained to figure out how to access resources and service providers to provide relief and support to her mother.  In her day job, Heather helps entrepreneurs and organizations navigate the ecosystem in which they find themselves, trying to simplify the process for access to capital, resources or transactions that will assist them.  It was mind boggling to her that there was not an equivalent navigation process for caregivers of people living with dementia to access resources and find service providers in an efficient and effective manner.

That led to a thought that there was perhaps an opportunity to create a platform that could match needs (identified by the caregivers) and the resources and service providers available to meet those needs.  This led to some focus group work, on other primary caregivers in the community (in Edmonton and Calgary) who are providing care to people living with dementia.  The results of the focus group studies revealed that caregivers lacked the knowledge of where to access resources and service providers to meet their needs, and that they were burdened with feelings of overwhelm at the prospect of continually having to adjust their routines in the face of a degenerative disease.  While they may have accessed the service providers needed for “today”, at this particular stage of disease, they were unsure of how they were, once again, going to navigate the system to access the relevant and necessary services at such time as the disease degenerated and progressed.  Knowing that dementia is a degenerative condition, and, as such, symptoms will worsen, and supports needed will increase, it was repeatedly identified as overwhelming and stressful to constantly be trying to figure out what was coming next, and what would be needed to cope with that stage of disease. 

Most caregivers identified that they were not experts, and that in the face of the diagnosis, they didn’t readily understand what that meant, and the implications.  For example, they indicated that they didn’t know intuitively when they should sign up on a waiting list to access long term care facilities, or at what stage of the disease they would need access to homecare, what level of service they were eligible for through homecare, and so the unknowns associated with living with the condition, and providing care for the condition was overwhelming and caused stress to the caregivers on a daily basis.

The solution seemed simple, in theory:  Heather decided to investigate developing a technology tool that would focus on a few key things:

1)     Bridge the gap between the cure (medical) sector and the care (social services) sector, and allow caregivers a place to go to access resources and service providers that would be useful to their caregiving journey.

2)     Plot out the possible pathway for a person living with dementia, to reduce the uncertainty associated with the diagnosis, and provide some guidance on the journey that the person living with dementia may experience.

3)     Support the caregiver of the person living with dementia, by creating the space and opportunity to interact with other members of a care team, to share information, and ask questions and be supported through the community.

4)     Track the wellness of the caregiver, through eliciting self-reported information about how well they are coping, how supported they feel, and whether they know where to turn to for answers to their questions. 

5)     Track the symptoms of the person living with dementia, through eliciting caregiver-reported information to the symptoms, and correlating it to various stages of the disease. 

6)     From the self-reported wellness and symptom tracker responses, curate specific content (resources and service providers) to inform, educate and support the caregiver, with where they are at on their caregiving journey.

From these goals, the Tusk platform was born.  The team worked to create a minimum viable product (MVP) to test with a small group of users in the fall of 2019 to determine whether the product was functional.  It was!  The reports of the beta testing were that caregivers appreciated the centralized repository of information available for caregivers, and were able to access various resources to help them better cope with their caregiving responsibilities.

 

Why Crowdfunding? What is the Goal?

We are thrilled to be part of the Build Her Business Campaign, and associated with such a great cohort of companies!

The goal of our crowdfunding campaign is to help us work toward creating more specific caregiver-focused content, to focus on creating better resources and content specific to the caregivers; assisting them with developing their specific care goals, to help them have the best quality of life on the caregiving journey.We are hopeful that we are generating awareness for our platform through this campaign. Since our reward structures involve access to the platform, we hope that we can expose the platform to more users.  

Our crowdfunding goal is $5,000.  This will allow us to work with world-renowned researchers studying caregiver burnout, caregiver support and technological interventions to support carers, and develop robust tools to better support the caregivers.  Additionally, we are focused on exploring some machine learning applications to determine whether there are any correlations and/or predictions that may be possible from the correlation of a transition from a particular stage of symptom and the caregiver’s self-reported feelings of wellness.

In order to do so, we need to match some research funds to the project, to ensure that the projects are funded, and prioritized for inclusion in the platform.  It is our hope that the projects lead to more robust resources targeting specifically the needs and goals of caregivers. 

Why the focus on caregivers?

We know that caregivers are critical in the health care sector to provide hundreds of thousands of unpaid caregiving hours every year.  Almost everyone that we know is either a caregiver, or knows someone in their immediate circle who is, or has provided care to a loved one.  We know the burden that it can create.

We know that caregivers are people with their own lives, their own responsibilities and their own goals and needs.  We want to shine a light on them, and we hope that our tool will help ease the burden slightly for them, and enable them to continue to provide excellent care while minimizing the negative repercussions on them.

We also know that it is not just dementia care that is tough for caregivers.  Providing 24*7 care to anyone is overwhelming.  But we want to start somewhere, and we hope to expand beyond dementia care soon!

Meet the Team

Heather Barnhouse

Heather Barnhouse

Director

Heather is the founder of this initiative, which was started as a result of her personal journey. Her mother provides full time care for her step-father, who has vascular dementia. Until about 4.5 years ago, she was very able to provide the care; however, she was unexpectedly diagnosed with breast cancer and suffered her own health crisis at the same time as her husband experienced a significant stroke. The result was an enormous amount of logistics falling to Heather to complete, during business hours, to arrange for service providers, medical appointments etc. with no clear path forward for where to turn to obtain assistance. In her day job, Heather is a corporate/commercial lawyer with Dentons, focused on helping entrepreneurs grow and scale their companies, in all industries. She has experience with digital health, software, medical, AI and other technology based initiatives.
Read More
Johnna  Lowther

Johnna Lowther

Director

Johnna Lowther is always looking for opportunities to join forces with people and projects who are putting good things out in the universe, those who believe in work for a greater social purpose. Johnna joined Caregivers Alberta in May of 2019, as their Provincial Program Lead, overseeing programs and services to the almost one million family caregivers across Alberta. She has a personal history caring for persons living with dementia and has spent her career developing creative community engagement programs that inspire and empower participants, family/friend caregivers, and professional caregivers at large. Joining to work with Heather Barnhouse and Beth Mansell in November 2019, she helped form the Dementia Association for Awareness and Support (DAAS), an organization that seeks to promote innovation in dementia caregiver supports. DAAS does this by using and promoting Tusk: The Care Navigation Tool and producing the Life With Dementia podcast. She believes firmly in the power of education to impact community based services, has published a book for community caregivers entitled Through the Eyes of Dementia, and also hosts the Life With Dementia podcast sharing resources and solutions for living well with dementia. With 2 children under the age of 4 she defines herself as a woman of action, unless you put a glass of good wine in hand and the perfect sunset to drink it to, in which case you’ll find her soaking up the leisure life for as long as the moment lasts.

Read More
Beth Mansell

Beth Mansell

Director

Beth is a dynamic, young entrepreneur with a passion for social innovation. From a young age, Beth has always enjoyed investing time into giving back, starting with co-founding an independent fair trade coffee store within her high school where all profits would be donated to local and global charities. Beth has worked in non profit organizations since graduating from McGill University in 2014 and currently works on strategic projects for Sage Seniors Association. She was responsible for coordinating the organization’s introduction of its health services clinic in 2018 and has a deep understanding of the importance of the integration of health and social services. Her knowledge and understanding of the struggles faced by caregivers of people living with dementia comes from witnessing family members experience guilt from living overseas as parents declined with their dementia diagnosis. Beth is currently completing a Masters in Public Health at the University of Alberta with a specialization in health policy and management and looks forward to bringing this knowledge to Tusk and the Dementia Association for Awareness and Support.
Read More
Todd Carson

Todd Carson

Director

Todd draws on his background as a business consultant, director, investor, and professional engineer. He co-founded of Wave Engineering Consultants, for which he later received the Alberta Chambers of Commerce Young Entrepreneur Award. As an engineer, Todd has worked on projects across western Canada, and has been a member of various industry groups over the last 15 years. In his career, Todd has helped businesses thrive through in-house development of operational standards and best-practices. With a focus on team-building and collaboration, he has helped companies achieve their goals in growth, financial success, and community engagement. Todd believes in the value of sharing time and experience with others. He serves on the Board of Directors for the Lifesaving Society Alberta & Northwest Territories, and is a past director of the Royal Lifesaving Society Canada. He is a volunteer for Junior Achievement Northern Alberta and mentors local startups through the University of Alberta's Venture Mentoring Service.
Read More

Feb 11, 2020

BONUS REWARD: 24 hours only! $25.00 Reward- only 10 available

For 24 hours only- obtain a copy of Johnna Lowther's book "Through the Eyes of Dementia" in addition to the Tusk level reward.

Read More
Dec 16, 2019
Project launched

FAQs

What is Campaign goal, and what is purpose of funds raised?

We are hoping to raise at least $5,000 through out crowdfunding campaign.  The funds raised will be contributed towards the matching funds that we need to contribute for evidence-based research that we are hoping to complete.  We have a two specific areas of research that we're exploring, to enhance the tool as follows:
1) working with researchers focusing on caregiver wellness, to develop a targeted tool for caregivers to include in the platform to help caregivers prioritize their needs and goals throughout the caregiving journey.

2) working with researchers using machine learning to review use cases for incorporation of machine learning and algorithmic predictions to prevent caregiver burnout and curate relevant content for caregivers.

Who is the target user for Tusk?

Caregivers who are providing care to people living with dementia in the community. The platform is populated with community based resources and service providers who are positioned to provide care to their loved ones in the community.

Who can access the platform?

When we create a profile for a caregiver (who subscribes to Tusk), that primary caregiver has the ability to invite other caregivers (family, friends who assist in providing the care) to the care team, so that the members of the care team can all interact, message each other and access the same resources and service providers. As the primary caregiver, you have complete control over who to invite to the team.

How is Tusk unique?

Great question!  The Tusk platform is unique in a few ways:

1) Focuses on the dyad of the caregiver and the person living with dementia, as a unit, to meausre their collective wellness.  We know that the wellbeing of the person living with dementia is correlated to the wellbeing of the caregiver, and vice versa, and we want to measure both aspects for a complete picture.  We do this through the proprietary "wellness tracker" (focuses on caregiver) and "symptom tracker" (focuses on person living with dementia), and rely on the caregiver's self-reported findings.

2) It contains a central respository of information (resources) and service providers who provide service to people living with dementia and their care partners in the community, which is searchable.

3) The platform allows a caregiver to invite other members to the care team (siblings, family, friends), who are supporting the primary caregiver, to access the same information, communicate amongst each other and provide overall support to the primary caregiver.

4) The platform allows a primary caregiver to message his or her navigator directly and get additional resources or tailored support other than what may be curated specifically within the platform.

Why the focus on dementia?

There are several reasons: 1) We know that the prevalence of dementia is increasing. The population is living longer, and with better diagnostic and screening tools, more people are being diagnosed. 2) It is widely held to be a public health crisis. It is believed that one in three seniors die with a dementia. The risk of dementia doubles every five years past the age of 65. 3) Alberta Health has an "Alberta Dementia Strategy and Action Plan". It's vision is that "Albertans are committed to optimizing brain health and valuing and supporting individuals impacted by dementia from its onset through to end-of-life." 4) The direct health care costs related to dementia in Alberta were almost $650M. When social support costs and employment impacts on caregivers were included, the cost exceeded $1.2B.

Why does Tusk focus on caregivers?

We know that in 2008, caregivers provided more than 18 million hours of unpaid care to Albertans living with dementia. This is expected to increase to 68 million hours of unpaid care by 2038 (source: Rising Tide: The Impact of Dementia on Canadian Society, Alzheimer Society of Canada, 2010). No one volunteers for the job of caregiver; however, we believe that we all assume the role of caregiver, and/or know of someone who is in that role. It is a struggle for those individuals, and we hope that the platform will be one more tool in their toolkit to help them cope with their role. Also, from a practical perspective, we know that the primary caregiver to a person living with dementia is the one who is most knowledgeable and able to report on his or her symptoms, and the impact that it is having on the caregiver. Due to the decreased (and decreasing capacity) of the person living with dementia, that individual may not be the best advocate for his or her symptoms and needs, which falls to the caregiver.

Are there other applications for Tusk?

Yes! We believe there are, and we look forward to sharing other potential applications, and helping caregivers who are providing care for people with other illnesses or conditions as that evolves.

Can my organization use Tusk?

There is a role for organizations to use Tusk. In our beta testing, we had several organizations using the tool. They used it in the capacity as a "navigator", meaning that they were overseeing and supporting several caregivers.

What are your caregivers' experiences with using Tusk? How does it help them?

Great question! We're so grateful that we've had such loyal customers who have provided great feedback. Here's a sample:

"Hello my name is Mrs. Christine Hall and my husband is Michael he has 4th stage Dementia. After Michael was diagnosed I was so overwhelmed and his case manager introduced me to Caregivers Alberta, she also informed me of the Tusk Application and told me it was only experimental at this time but had asked if I could participate in the 4 month trial of the application I joined in right away.

I found that I could keep track on how Michael was doing, also how I was doing. I was able to click on the links that would help me out with mike and how I would be able to help Michael do the things we used to do like dinner or walking or watching tv. Although Michael has some good and bad days, I was informed that this was expected. The links that are on Tusk are very helpful in figuring out more about Michael's condition.

Tusk is designed around dementia and it gives me all kinds of sites that will help me with Michael and this is very important to me. Tusk has eased the burden on me as well as the stresses on me. In the evenings after Michael is in bed for the night I come into Tusk and read more.

The Tusk application does play a MAJOR factor in filling the gap for what is next. Without Tusk I would never have been able to help Michael out like I do. I can look up all kinds of information and I WOULD RECOMMEND TUSK FOR ANYONE WHO HAS A FAMILY MEMBER WITH DEMENTIA. I feel without Tusk I would be lost." Mrs. Christine Hall

What do organizations who have used Tusk report about their experience?

We are so pleased that they found it helpful! Here are two organizations who have used the product, and their report in their own words:

  1. "I used Tusk, to help me find appropriate and relevant educational resources for my clients. It was important to me that I could share vetted educational content with my caregiver clients who were experiencing dementia with a family member. They needed to know how to deal with frustration and anger; or how to make communication easier. I found the resources in the Tusk library professional and beneficial to share." Caregivers Alberta Staff
  2. "I believe that when stress, confusion, or anxiety are part of managing your health, it interferes with health and well-being. This is why I founded Navigate Your Health - to empower patients and their loved-ones with clear and reliable information, and to ensure they have the knowledge, resources, and support for overall well being on a health journey. As an organization that works with caregivers and people living with dementia, Navigate Your Health wholeheartedly recognizes the need for technological solutions to the growing needs in this sphere. As an early adopter of Tusk, I have used it to engage with my clients who are experiencing dementia with a friend or family member, and I'm excited to see continued development of this tool for public use. Navigate your Health is happy to endorse Tusk's development in consultation with targeted users, to ensure that its solutions address the real needs of caregivers and patients, and to see that it becomes wholly adopted by users. By contrast, many patient-targeted tools on the market are developed based on observations from an outside perspective, and these tools frequently miss important aspects of effective support; the result is that many of these tools are discarded after a brief period of use. Navigate Your Health is proud to ally with Tusk on this project to enable desired dialogue between developer and user and help bring this tool to a wider user base." Kirstin Veuglelers, PhD. Personal patient Navigator, Edmonton Alberta
Comments
List of supporters