Nurse or caregiver with patient at home
How respite care can help
by Francesca Rinaldo

For 85% of older adults in the United States, as estimated by the Centers for Disease Control and Prevention, coping with a chronic condition is a way of life. This also applies to the one in five adults that AARP estimates serve as unpaid family caregivers.

Among these conditions, Alzheimer’s disease and related dementias (ADRD) are a devastating and costly challenge that are slowly robbing millions of people of their abilities and independence. As of this year, 6.5 million U.S. adults have been diagnosed with Alzheimer’s, and this number is expected to reach 12.7 million by 2050. Medicare spends three times more annually on beneficiaries with dementia than those without the diagnosis in the same age group ($41,757 vs. $14,026 per patient, respectively).

For these patients, functional challenges such as difficulties with bathing, feeding and mobility can be significant drivers of morbidity and mortality. In fact, fainting due to dehydration, falls and other forms of accidental trauma are reported to be the leading cause of hospitalization in Alzheimer’s patients—even though they are often preventable. Opportunities to support these patients and their family caregivers in their home environments stand to improve outcomes and reduce total cost of care.

In response to this impact on patients and caregivers, CareLinx by Sharecare partnered with a large national insurance provider to intervene with respite care to enable not only effective care partnerships between patients, families and their care teams, but also to optimize physical and mental health for the greater family unit. Through a tailored program and benefit designed for patients and caregivers managing ADRD, the partners established a valuable framework for respite care tailored to any disabling condition, with the goal of minimizing long-term costs and maximizing their outcomes.

A Person-Centered Approach to Care

As standard practice upon deploying support, the program matches professional caregivers with families and care recipients on multiple dimensions beyond the skill set needed to provide care. These include the language spoken by the individual, their cultural background and understanding, and how they connect with families during an interview process.

For individuals living with dementia—which significantly impairs memory, thinking and social abilities—considering the patient’s preferences, dislikes and interests is an important opportunity to establish a successful, sustainable respite care plan. The goal is to match families with caregivers who will create strong and lasting interpersonal connections beyond the transaction of providing in-home care. In this model, knowing the person and understanding what is important to them guides every interaction between the patient, their caregiver and the
homecare professionals.

With this consideration given
pre-deployment, caregivers can identify activities that positively engage the patient and embed them into the care approach. As common examples, the caregivers often lead the patients to play favorite card games and help the care recipient apply makeup, brush their hair, or attend to other grooming needs, in addition to supporting them with their activities of daily living (ADLs). By helping fulfill both social support and health care needs, they also give the unpaid family caregiver an opportunity for respite in both areas while still ensuring their loved one’s needs are met.

The progression of dementia also is accompanied by the need to increase assistance for ADLs such as bathing, dressing, toileting, mobility and eating. As done in this ARDR respite program model, support should take into consideration the level of cognitive decline presented as well as the patient’s remaining abilities. This allows them to maintain a sense of dignity and gives them the ability to make choices.

Targeting Condition-Specific Risks From Home

A single hospitalization can drive significant cognitive and functional decline, so it is imperative to minimize the risk of avoidable acute care utilization. Through this disease-specific respite care model, caregivers working in the home collaborate with clinical teams to help to facilitate focused tasks that can reduce the risk of hospitalization.

For example, studies show that among people with dementia, medication adherence can vary significantly (between 17% to 42%), with medication nonadherence being associated with hospitalization and increased mortality risk. Furthermore, in patients with dementia, polypharmacy is a strong predictor of avoidable hospitalizations—even more so than the severity of the dementia itself.

In response, caregivers deployed under the ADRD respite care program support medication adherence initiatives by providing medication reminders, assisting patients and their families by picking up prescriptions or providing transportation, and facilitating medication reconciliations in collaboration with clinical or care management teams.

Addressing the Social Determinants of Health

Observing a patient at home also can reveal characteristics of their environment and other social factors that can’t be determined at their regular appointments, but may play a significant role in clinical outcomes. In fact, an estimated 60% to 80% of health outcomes can be attributed to social determinants of health (SDOH), such as socioeconomic factors, home safety and individual behaviors.

In-home caregivers can act as the “eyes and ears” of clinical and care management teams by helping identify unmet needs associated with patients’ physical and social environments. For instance, caregivers can identify hazards in the home that increase fall risks or factors such as social isolation or food, housing or transportation insecurities that impact patient well-being and the results of the care plan. In the ADRD program, once these needs are identified, caregivers serve as a bridge between the patient and other resources, services and covered benefits to address these needs—especially when the caregiver-family relationships are longitudinal and built on trust.

Easing the Family Caregiver Load

According to estimates from the Alzheimer’s Association,
11.3 million family and other unpaid caregivers of people with ADRD provided over 16 billion hours of care in 2021 (an average of 27 hours per caregiver per week). Supporting the complex needs of a loved one with dementia (often over years of care) can take an enormous mental and physical toll. As a result, family caregivers experience higher rates of serious health conditions, such as obesity, hypertension, anxiety and depression. Caregivers for individuals with dementia more often report emotional, financial and physical difficulties due to their caregiving responsibilities. In turn, this can impact outcomes for the family caregiver and the patient. In fact, studies show that high levels of emotional distress in family caregivers can lead to increased falls, avoidable emergency department visits and hospital admissions for individuals with dementia.

By taking this tailored approach in response to patients with ADRD, the model not only has matched patients with the in-home care providers needed to navigate ADLs, but also yielded positive feedback from their caregivers regarding their own well-being and that of their care recipients. As a respite program, a primary success metric is satisfaction among the caregiving family members. To date, these caregivers have reported:

  • Direct enablement of aging in place and independent living for the care recipient
  • Increased cooperation with the patients’ assisted ADLs
  • Reduced absence time from work
  • Enhanced social interest and engagement observed between patient and family members as well as the home care provider
  • Strong levels of patient and family satisfaction with the insurance provider

Further, the blended net promoter score for the new model stands above the industry average at 88.

As outcomes continue to be evaluated and other condition-specific applications are considered, the model offers a valuable foundation for delivering tailored care that supports both patient and family well-being.A 

Francesca Rinaldo, MD, Ph.D.,  is the senior vice president of clinical product and innovation at Sharecare. As a physician-scientist, her clinical interests include end-of-life care and the impact of loneliness, social isolation and other social determinants on the health of the rapidly aging global population.