According to the World Health Organization, around 55 million people suffer from dementia globally. As the proportion of older populations is increasing in nearly every country, the number of those affected by dementia is said to rise to 78 million in the next thirty years. With no confirmed cause or cure, dementia continues to be one of the biggest challenges we face worldwide. The month of September marks World Alzheimer’s Month, which aims to recognize, raise awareness, and highlight issues faced by people affected by dementia. This month, we are highlighting people like Maddy Huggins, who are doing what they can to recognize the gaps in their community and make a difference for those living with dementia and their caregivers.
During Huggins’s undergraduate studies at the University of Saskatchewan, her grandparents were getting older and she began to understand what it meant to age, lose some freedoms, and suffer cognitive memory loss. Huggins’s grandmother was suffering from dementia, which allowed her to experience first-hand the reality of such a terrible disease. Once Huggins moved on to her graduate studies at Simon Fraser University, she worked on advance care planning, which allowed her to be involved with patients’ decisions regarding end-of-life care. Within this work, she saw many areas and opportunities for improvement for older persons and specifically those living with dementia. From then on, she found herself extremely passionate about working with that population.
After she graduated, she worked at Vancouver General Hospital (VGH) doing a study with robotic animal-assisted interventions and patients with dementia, which was a dream project for her. That truly solidified her interest in working with older persons with dementia and allowed for her to explore her desire to enter a Ph.D. program to learn more about research methods and to gain more confidence in her knowledge in the area. From there, her involvement with Nav-CARE began.
Nav-CARE (Navigation-Connecting, Advocating, Resourcing, and Engaging) is a volunteer navigation program that seeks to improve the quality of life of persons living with declining health and is currently being implemented across Canada. Huggins and Dr. Barbara Pesut and Dr. Wendy Duggleby, co-founders of Nav-CARE, decided her research would be a great fit for the program.
After working at VGH, Huggins recognized a significant gap in community supports. “There was one woman in particular I remember who her family doctor was doing home visits and she had no family around, and [the doctor] was actually grocery shopping for her here and there because he said, ‘if I don’t do it, there’s nobody else’,” stated Huggins. “I just saw the need for community support in particular and the lack of that often results in hospitalizations or more strain on the health care system and I thought that the Nav-CARE program would be the perfect way to help address some of those gaps I experienced through my other jobs.”
Not only do people with dementia have unique needs, but their caregivers do as well and are oftentimes forgotten about, underappreciated, and undersupported. Through her integration with Nav-CARE, Huggins’s goal is to adapt the program to support caregivers of older persons with dementia that are living in the community.
In order to do that, Huggins and fellow Nav-CARE researchers engaged with previous research and consulted with caregivers, experts in dementia, and experts in navigation programs to decide on the curriculum they would need in order to train volunteers and to determine what needs are really important to caregivers. Now that these factors are determined, they will be used to launch a 6-month pilot project in April 2022 with a group of ten caregivers and ten volunteers. Sequentially, they will be following the program closely to evaluate what is going well and where they can improve. After that, they will have a good idea of how the program will work and will be able to implement it in the community on a more widespread level.
“The focus of Nav-CARE is to have a volunteer as a consistent ‘friend’ in some ways who can come into their home, visit with them and really get to know their unique needs as a human being and caregiver,” states Huggins. “The volunteer really needs to be in-tune with who that person is and what they might be struggling with at the time, so they can tailor the support to the specific need.”
As her research and implementation of the Nav-CARE project continue, Huggins hopes to continue raising awareness of the lack of supports for caregivers of those with dementia. Her dream is to be able to teach and do research on the components of aging, with the main focus on helping those in need.