Heather Barnhouse
Director
C$0
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.
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.
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.
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!
Heather Barnhouse
Director
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.
Beth Mansell
Director
Todd Carson
Director
Feb 11, 2020
For 24 hours only- obtain a copy of Johnna Lowther's book "Through the Eyes of Dementia" in addition to the Tusk level reward.
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.
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.
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.
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
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: