The ‘Invisible Second Patient’: Understanding the Role of Dementia Caregivers

Updated: June 5, 2025

The ‘Invisible Second Patient’: Understanding the Role of Dementia Caregivers

More than 11 million Americans care for a loved one with a form of dementia today. Despite the group’s sheer size, they are widely known as the “invisible second patient” — because the effect caregiving has on their own health and well-being is all too often overlooked.

For one, navigating the complicated healthcare system on behalf of their loved one is a major source of frustration for many. Seventy percent of dementia caregivers say coordinating care for their loved one is stressful, according to a 2024 Alzheimer’s Association report.

That stress has a measurable effect on the caregiver’s health. The prevalence of anxiety among dementia caregivers is 44%, for instance. And caregiving can be isolating — they experience greater decrease in their social networks than non-dementia caregivers.

This strain, in turn, impacts the care of their loved ones, including a 73% increase in likelihood to use the emergency room when the caregiver is depressed.

Healthcare stakeholders are increasingly recognizing two-sided impacts of caregiver burden in cost, quality and experience of care — and they are making up for lost time by recognizing, engaging and empowering this invaluable group.

The Centers for Medicare and Medicaid Services (CMS) launched the Guiding an Improved Dementia Experience (GUIDE) Model in July 2024, focused on supporting people with dementia and their unpaid caregivers. And several health plans are adding targeted support for dementia caregivers as a supplemental benefit.

Uncovered Dementia Caregiver Needs and Barriers

To truly empower dementia caregivers, we must understand their needs as well as what barriers they face in their caregiving efforts.

Carallel offers an evidence-based dementia caregiver engagement program that provides 24/7 access to educational content and caregiver support resources combined with unlimited access Carallel’s Care Advocates via phone, email, or chat. These highly credentialed experts are all Certified Dementia Practitioners and provide compassionate support and practical guidance to caregivers.

Data from the first year of the program shows caregivers’ top expressed need is their loved one’s health, but the top need uncovered by Care Advocate interactions is for self-care and managing new relationship dynamics with their loved one.

Top self-reported barriers getting in the way of performing caregiving duties or making those duties more challenging:

• Lack of awareness of available resources and benefits (22% self-reported)
• Lack of support system (12% self-reported)
• Lack of understanding of their loved one’s condition (11% self-reported)

These barriers align with the most common actions taken in the dementia care program:

• Emotional support and validation (addressed with 97% of participants)
• Education on specific disease topics and interventions (addressed with 77% of participants)
• Accessing benefits and community resources (addressed with 63% of participants)
• Coaching on strategies to expand a “circle of care” (addressed with 47% of participants)

Do you want your dementia caregivers to be seen and supported? Contact Carallel today to learn how to best support caregivers of people with dementia.

More on Dementia Caregiving
How to Support Caregivers Through the 4 Stages of Dementia Caregiving
Caregiver Diaries: Spousal Caregiving and Dementia