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 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!