Supporting family caregivers of people living with dementia

Categories: Care, Featured, and Research.

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 January marks Alzheimer’s Awareness Month in Canada which aims to recognize, raise awareness, and highlight issues faced by people affected by dementia. This month, we are highlighting people like Madison Huggins, a Ph.D. candidate at the University of British Columbia – Okanagan, who are doing what they can to recognize the gaps in their community and make a difference for those living with dementia and their family caregivers.

Huggin’s Ph.D. work focuses on the needs of family caregivers of people living with dementia and how volunteer navigators might be able to support those needs. Nav-CARE (Navigation-Connecting, Advocating, Resourcing, and Engaging) is a volunteer navigation program that seeks to improve the quality of life of persons in the community 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.

Huggin’s personal experiences with her grandma and her previous research at a local hospital highlighted significant gaps in community supports: “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.”

Huggins is leading three phases of research consultations with 36 experts in family caregiving, dementia, volunteerism, and navigation to determine a curriculum for volunteer navigators to support family caregivers along the dementia journey. Preliminary findings from the first consultation revealed significant agreement across a spectrum of needs for caregivers; for example, the need for more information about dementia, not only for caregivers themselves, but also information to share with their wider social networks, and different health care providers.

The needs that were identified in the first phase, informed the second round of consultations, which explored the knowledge, skills & abilities that a trained volunteer would need to support family caregivers. “We got pages and pages of responses – so many good ideas!”. The specificity that the experts articulated reflected their different roles. For example, the issue of stigma and promoting positive conversations were significant for those experts with caregiving experiences, which “reemphasized the importance of including different voices in this panel.”

The final phase of the consultations is just wrapping up, which will inform the development of the curriculum for volunteer navigators. Huggins explains that in addition to other aspects, she envisions volunteer navigator training to focus on supporting caregivers’ informational needs and giving them the tools they need to share relevant information with their social networks and health care providers. Another area the training would focus on is the development of relationships between caregivers and volunteers, especially teaching volunteers to identify the unique needs of family caregivers and how to support these needs along the disease trajectory. “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.”

“I’m looking forward to seeing this program come to life and being able to pilot it and learn more about what works and what doesn’t for this group.” In the upcoming months, Huggins will develop and refine the curriculum, which will be used to launch a 6-month pilot project 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.

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 ageing, with the main focus on helping those in need.

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