Brotherhood of Caregivers

Welcome to another edition of the Doctor’s Note where we talk about what’s on our minds when it comes to your health.

This week I had the honor of sitting down with Bob McCollum, an inspiring patient and friend who is tackling one of the toughest challenges any of us could face: caring for a loved one with dementia. Bob shared his deeply personal journey of serving as the primary caregiver for his wife, who has vascular dementia. For over a decade, he’s navigated everything from the early signs of the disease to the emotional weight of accepting its progression, the practical need for additional help, and the agony of transitioning his wife to long-term memory care when it became necessary. Through his story, Bob highlighted not only the struggle and heartbreak but also the isolation and lack of resources that male caregivers often experience.

In this episode, Bob describes how his experiences led him to establish the “Brotherhood of Caregivers”—a support group specifically for men who are in similar situations. We talked about why men are less likely to reach out for help, how many feel unprepared for the demands of caregiving, and the critical need for community and education among male caregivers. As we discussed, the emotional and physical toll on caregivers is significant—and neglecting support and self-care can actually increase the risk of declining health or even dementia in the caregiver. But there is hope and help to be found: through sharing stories, fostering camaraderie, and providing targeted resources, we can better support those who give so much of themselves every day.

PODCAST NOTES

• The burden of caregiving for someone with dementia extends far beyond the daily tasks of helping with medication, meals, and personal care. Bob laid bare the emotional and psychological impact that caregivers shoulder, including the initial denial many feel when strange symptoms appear, the overwhelming sense of responsibility as a spouse’s condition worsens, and the heartbreaking realization that sometimes the safest option is moving a loved one to a memory care facility. He highlighted how this process is never linear. It involves difficult decisions and persistent self-doubt that can leave even the most committed partners feeling isolated and emotionally raw.

• Men often have additional cultural and psychological barriers that block them from reaching out for help—from longstanding beliefs about masculinity to a lack of community traditions around asking for assistance. Bob described how his initial reluctance to accept outside resources caused him to navigate much of the early caregiving journey completely alone, something all too common among male caregivers. This reluctance leads not just to emotional isolation, but also a dangerous lack of practical support—putting both the caregiver and the person with dementia at risk.

• A central problem for many male caregivers is that they know very little about the unique symptoms and stages of dementia. As Bob pointed out, even seasoned husbands and fathers can be completely unaware of terms like “sundowners,” mistaking agitation or confusion as behavioral issues rather than medical symptoms, which adds frustration to already trying circumstances. Without education and the opportunity to share experiences, caregivers may continue to use trial-and-error approaches that actually increase their own stress and their loved one’s suffering.

• The phenomenon I call “caretaker syndrome” is all too real and present among caregivers in situations like these. Chronic stress, lack of sleep, and unrelenting emotional strain cause caregivers—especially those going it alone—to gradually lose their own health and wellbeing. From cognitive decline and depression to increased rates of mortality, the dangers of unaddressed caregiver stress are severe. Bob echoed what I’ve seen so often in practice: without the right support, the caregiver’s decline can parallel the person they are caring for.

• Social isolation is both a byproduct and exacerbator of caregiver stress. As responsibilities mount, social opportunities narrow, and caregivers often lose vital connections that could buffer them against loneliness and despair. Bob and I discussed research showing that in older adults, loneliness can be even more detrimental to health than heavy smoking—underlining just how vital it is for caregivers to maintain and seek out meaningful connections beyond their role as a caregiver.

• By creating the Brotherhood of Caregivers, Bob is helping break down the wall of silence that can surround male caregivers. The group offers a truly safe, non-judgmental space for men to talk about their struggles, share insights, and realize—sometimes for the first time—that they aren’t alone. The confidentiality, camaraderie, and empathy at the group’s core is deeply therapeutic, providing emotional relief and the strength needed to continue caring for their loved ones.

• Access to effective, easy-to-use resources is crucial for navigating the unpredictable journey of dementia care. Bob stressed the value of sharing practical tools, like the renowned book “The 36-Hour Day,” which serves as a guide for both new and seasoned caregivers. By assigning specific readings and integrating them into group discussions, the Brotherhood transforms knowledge into action—helping men develop confidence, problem-solving skills, and hope for coping with the everyday challenges they face.

• There is an urgent and unmet need to expand caregiver support efforts even further. Bob outlined how building additional groups for special populations, such as veterans, and partnering with doctors, hospitals, and senior centers, could dramatically extend the reach of this life-changing work. He highlighted that, with the right advocacy and structure, we could create a regional or even national brotherhood—one that ensures no caregiver ever faces this journey without friendship, knowledge, and meaningful support.

Caregiving is both a gift and a challenge, especially when it comes to supporting a loved one with dementia. My conversation with Bob McCollum was a powerful reminder that seeking help isn’t a weakness—it's an essential part of sustaining both our loved ones and ourselves. If you or someone you know is caring for a family member with dementia, I encourage you to seek out support groups like the Brotherhood of Caregivers, educate yourself about the disease, and remember that your own health must be a priority. 

Let’s keep spreading the word about the importance of community and connection in the caregiver journey. Reach out, get involved, and remember: you are not alone.

Stay educated. Stay healthy. 

Till next week.