By Sherri H. Johnson, SVP, Business Development, American TelePhysicians

October 2024 – In-home caregivers for dementia patients often live in a world of constant stress, exhaustion, and emotional turmoil. I’ve been thinking about this a lot lately because of my own family’s experience. My brother-in-law has Lewy Body Dementia, and my sister has been his primary caregiver for over a year. Watching her struggle to manage his daily needs while trying to maintain her own well-being has opened my eyes to the immense challenges that caregivers face. This article isn’t just about sharing her story—it’s about starting a conversation on how we, as healthcare experts, can better support those who are on the front lines of care.

The Realities of In-Home Dementia Care

My brother-in-law’s condition is progressive, and the changes in his behavior and abilities have been heartbreaking. He can no longer operate a microwave, drive, or even remember to turn off the water or stove. These are small things that most of us take for granted, but for someone with dementia, they become insurmountable tasks. For my sister, these challenges mean constant vigilance. She has to watch him closely, never getting a moment to herself. It’s exhausting.

The frustration and anger that come with dementia further complicate the situation. My brother-in-law often becomes upset when my sister has to remind him of things or tell him what to do. He feels powerless and confused, while she feels overwhelmed and drained. It’s a cycle of emotional strain that is difficult to break.

Sleep deprivation is another major issue. My brother-in-law only sleeps for short intervals, which means my sister is constantly waking up to check on him or help him through the night. The lack of sleep takes a toll on her health, both physically and mentally, making it even harder to care for him during the day.

This is a reality that many in-home caregivers face. They are constantly on call, with no real breaks and little support. It’s not just a job—it’s a 24/7 responsibility that leaves them with little time for themselves or their own needs.

Finding the Right Balance in Treatment

One of the biggest challenges for dementia patients and their caregivers is finding the right balance of medications. My brother-in-law sees a neurologist, but the process of finding the right combination of treatments is slow and often frustrating. Medications can help manage symptoms, but they are not a cure. The journey to finding the right balance can be long and filled with trial and error, which only adds to the caregiver’s stress.

As healthcare experts, we know that dementia is a complex condition that requires personalized care. But we also know that the process of finding the right treatment plan can be overwhelming for patients and their families. It’s important that we offer support and understanding throughout this journey, helping caregivers navigate the healthcare system and connect with the resources they need.

How Can We Support Caregivers?

So, how can we, as healthcare experts, support caregivers like my sister? After researching the topic, here are a few ideas that I believe can make a difference:

1. Provide Respite Care: Caregivers need breaks, plain and simple. Offering respite care services can give them a few hours or even a few days to rest and recharge. Whether through in-home care providers or adult day care centers, respite care can be a lifeline for exhausted caregivers. For those acquainted with the CMS GUIDE program, it includes a valuable respite care component, and we should be proactive in recommending dementia patients for this support.
2. Offer Education and Training: Many caregivers are thrust into their roles without any formal training. Providing education or simply talking with the caregiver on how to manage dementia-related behaviors, administer medications, and handle emergencies can empower caregivers and reduce their stress.
3. Create Support Networks: Caregivers often feel isolated. Creating support networks—whether through in-person support groups or online communities—can give them a space to share their experiences, ask questions, and find comfort in knowing they are not alone. When speaking with caregivers, recommend that they seek out these communities.
4. Mental Health Support: Caring for someone with dementia can take a toll on a person’s mental health. Guiding them to online counseling services or connecting caregivers with local mental health professionals can help them manage the emotional challenges. It’s important that we acknowledge the mental health needs of caregivers and provide the resources they need to stay emotionally healthy.
5. Tailored Care Plans: Every dementia patient is unique, and so are their caregivers. Healthcare professionals should work closely with families to create individualized care plans that take into account the patient’s needs as well as the caregiver’s capacity. This could include adjusting medication schedules, offering telemedicine consultations, or providing home health services.

Conclusion: A Call for Compassion and Action

The experience of caring for a loved one with dementia is incredibly difficult. For my sister, it has meant sacrificing her own well-being to ensure my brother-in-law is safe and cared for. But it doesn’t have to be this way. We can do more to support caregivers, whether through respite care, education, support networks, mental health services, or tailored care plans.

As a healthcare community, we have a responsibility to not only care for patients but also for the people who are caring for them. It’s time to recognize the immense burden that caregivers carry and to take action to support them in meaningful ways. My hope is that by raising awareness of these issues, we can foster a system that truly supports both patients and their caregivers.

About the Author

Sherri Johnson is the Senior Vice President, Business Development for American TelePhysicians, a global digital healthcare company building technology and service ecosystems. American TelePhysicians has perfected its EMR and medical services platforms, and built its own physician network providing specialty telemedicine services to clients. Ms. Johnson is a member of the American TelePhysicians leadership team focused on strategic planning, working with current and potential clients, and initiating partnership discussions.

Prior to transitioning to American TelePhysicians, Ms. Johnson was Group Vice President, Internal Communications for Time Warner Cable where she created and implemented strategies to educate and engage 52,000+ employees in the company’s goals and priorities. Ms. Johnson has also served as Executive Director, Internal Communications for Cox Communications where she set the strategic direction for Cox’s internal communications function and supported key groups/initiatives, including Cox Business, Cox Media, video products, high speed Internet, and Cox Wireless.

Her other positions include Director, Communications for AT&T; Vice President, Business Development for Summit Marketing Group; and Employee Relations Manager for Coca-Cola USA.

Ms. Johnson holds a Juris Doctor, Cum Laude, from Georgia State University, an MBA from the University of Georgia, and a BBA from Georgia State University.