Improving Outcomes for Alzheimer’s Disease Patients by Supporting Their Caregivers Via Telehealth

The number of aging Americans 65 years and older is projected to nearly double over the next 40 years, reaching 80 million in 2040. As the U.S. population ages, so too does the prevalence of medically complex patients with conditions that require ongoing medical attention, limit activities of daily living or both. Prominent among the conditions that will balloon with this demographic trend are Alzheimer’s Disease and Related Dementias (ADRD); it is estimated that 14 million Americans will be diagnosed with ADRD in 2060 (up from 5.8 million today).

ADRD is, by some estimates, the single-most costly disease in the U.S., totaling more than $300 billion in annual Medicare/Medicaid costs and growing. Claims analyses show that 50% of hospitalizations for those with ADRD are due to causes that are potentially preventable (e.g., falls and infections). The high rate of potentially preventable hospitalizations (PPH) among those with ADRD puts unnecessary financial strain on families, caregivers, healthcare providers and health insurance companies alike.

For most families, the burdens of caregiving are assumed by family members who are inexperienced and stressed. Caregivers frequently use words such as “frustrating,” “hard” and “stressful” when asked to describe their caregiving experience, typically due to a lack of personalized information to assist them.

A recent study states that the stress of caregiving leads to a “26% greater impact of health conditions” on caregivers. Furthermore, AARP reports that in 2020, more family caregivers (26%) have difficulty coordinating care compared to 2015 (19%). High-quality resources to support caregivers exist, but more can be done to provide personalized support for caregivers.

Interventions

Integrated care and support programs provide an enormous opportunity to enhance the quality of life for ADRD patients and their caregivers. More knowledgeable, skilled and confident family caregivers can identify emerging medical issues, thus reducing preventable healthcare utilization and costs. Telehealth provides a cost-effective platform for caregivers to receive personalized education, access to services (e.g., transportation), remote coaching and support that has been optimized for ADRD.

Catalyzed by the COVID-19 pandemic and the rapid adoption of telehealth, it is now possible to remotely support the family caregivers of vulnerable and expensive patients. One study examined persons with dementia and their caregivers supported by telephone-based collaborative care by a trained care team navigator. The intervention improved patient quality of life, reduced emergency department visits and decreased caregiver depression and burden.

Along with developing a more robust strategy to support all caregivers, one Medicare health plan provides a six-month caregiver support telehealth program as a no-cost supplemental benefit for family caregivers of loved ones with dementia or other cognitive impairments. Caregivers receive a tablet device that enables access to personalized educational and other content that addresses the unexpected challenges often faced by a spouse, child or other relative who has taken on increasing caregiving responsibilities. This telehealth program includes videos, tutorials and access to support by remote human coaches.

Caregivers who participated in this program engaged with the digital platform for an average of 40 minutes per week and completed an average of three daily assessments per week while demonstrating high user satisfaction rates. Consistently high engagement — a pre-requisite for cost savings — and high caregiver satisfaction ratings suggest that telehealth programs that provide personalized education, resources and support for family caregivers can improve the experience of living with dementia for both the health plan’s beneficiaries and their family caregivers.

COVID-19

The COVID-19 public health emergency has increased the demands placed on family caregivers of loved ones with ADRD. It has been well documented that COVID-19 has increased self-reported stress, isolation and loneliness, threatening caregivers’ quality of life. This circumstance underscores the importance of supporting family caregivers.

Conclusions

Integrated care and support programs, when aimed at family caregivers, can increase the quality of care for patients with ADRD while improving the quality of life of both patients and caregivers. Telehealth is a promising means of cost-effectively supporting family caregivers with personalized education, resources and remote coaching. Medicare Advantage and Managed Long-Term Services and Supports (MLTSS) plans, as well as Accountable Care Organizations and other providers incented to manage ADRD successfully, have new opportunities to leverage telehealth to empower and support caregivers to improve outcomes and lower costs for people with ADRD.

Michael Adelberg is the leader of Faegre Drinker Consulting’s healthcare strategy practice.

Dr. Amy Fendrich is a board-certified internist and a Senior Medical Director with Blue Cross and Blue Shield of Minnesota.

Dirk Soenksen, MS, MBA, is the Co-Founder and CEO of Ceresti Health, a digital health company that specializes in virtual care for persons living with Alzheimer’s disease and related dementias.