Caregiving is demanding, often involving physical, emotional, and mental challenges. Caregivers frequently manage the complex needs of their loved ones, all while balancing their health, personal lives, and other responsibilities. Despite the critical role caregivers play, they often lack access to essential resources, recognition, and support networks that can make their caregiving journey more manageable.
To shed more light on these challenges, we spoke with Danny van Leeuwen, caregiver activist and founder of Health Hats. Danny shared insights on the specific issues caregivers face, from the importance of self-care and information access to ways caregivers can advocate for their rights and seek support within their communities.
I’m working to address key challenges caregivers face, including neglecting their own health, lack of access to health information, unpaid caregiving work, and exclusion from healthcare teams. My goal is to advocate for better support, fair compensation, and inclusion of caregivers in decision-making processes.
I raise awareness about caregiver rights and needs as a podcaster/vlogger, a member of the Board of Governors of the Patient-Centered Outcomes Research Institute (PCORI), and an advisor to the Partnership for Quality Measurement, NQF, the Center for Innovation and Value Research, the Light Collective, and Open Notes.
– Danny Van Leeuwen
Caregivers can advocate for themselves by prioritizing self-care and building a support team for themselves and their caregivers. Next, they can assist their caregivers in selecting clinicians who appreciate their caregiving role and participating in caregiver advocacy organizations when their caregiver duties lighten.
Danny van Leeuwen’s responses emphasize a few key takeaways for caregivers: prioritizing self-care, building a support network, and actively seeking resources. Caregivers can enhance their advocacy by connecting with professionals who value their role and participating in caregiver-focused organizations. Danny’s insights serve as a reminder that accessing the right support and resources can make a meaningful difference in caregivers’ and their careers lives.
Danny van Leeuwen, founder of Health Hats, is a dedicated caregiver activist with a focus on health equity. A two-legged, cisgender, older white man of privilege who lives with multiple sclerosis, Danny is committed to leveraging his experience as a nurse, caregiver, data expert, and leader to open doors in healthcare for underrepresented communities.
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