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

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

There are 16 million Americans caring for a loved one with Alzheimer’s disease or a related 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.

A study from the University of Michigan found that caring for a spouse with dementia led to a 30% increase in depressive symptoms. And nearly three-quarters of dementia caregivers are concerned about maintaining their own health. 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, 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.

Partnered with providers and payers (Medicare Advantage, Special Needs and Long-Term Services and Supports plans) data from 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.