Caring for family members with dementia and other forms of Alzheimer’s disease is a difficult task, and it is common for caregivers to feel overwhelmed due to the physical and emotional demands of the role. Researchers at Baylor Scott & White Research Institute’s (BSWRI) Center for Applied Health Research (CAHR) are engaged in groundbreaking studies to understand how to improve the quality of life for these caregivers. This work has taken on even greater implications now as COVID-19 creates greater isolation for caregivers making their role even more challenging.
According to the US Centers for Disease Control and Prevention (CDC), nearly 6 million Americans are living with Alzheimer’s disease, and that number is expected to triple in the next 40 years. The Alzheimer’s Association reports that 83% of the help provided to Alzheimer’s patients comes from family members or other unpaid caregivers. Caregivers balance care and supervision within the family home with career and other family commitments. Most do so without any assessment of their needs and without formal training in daily care tasks, like dressing and bathing a person with dementia. Formal support programs from healthcare or social service providers are typically not available. Thus, family caregivers are often overwhelmed by high levels of stress and burden, which is made worse by social isolation.
According to Alan Stevens, PhD, director of CAHR, “Our research is focused on the experience of family caregiving, which is uniquely personal and variable. Caring for a family member, or friend, living with dementia causes a person to be subject to a wide range of emotional experiences. Some are positive, but many are not as the caregiver is the firsthand witness to the cognitive decline of a person with whom they share a significant relationship. We strive to better understand that experience so we can develop and make available formal support programs and flexible tools to improve the quality of life of families living with dementia.”
To address the need for innovative caregiver supports, CAHR has established the GamePlan4Care project, which is funded by the National Institute on Aging and includes an active clinical trial. Through community collaborations, this trial aims to recruit 240 adult caregivers of people with Alzheimer’s disease. These caregivers must be regular internet users and are randomized to receive either the experimental online GamePlan4Care system or a more limited online system called Resources4Care. Both are based on the Resources for Enhancing Alzheimer’s Caregiver Health II (REACH II) protocol, a multi-session, skill-building intervention that has been tested in a culturally diverse group of Alzheimer’s caregivers.
GamePlan4Care includes an online hub of educational resources and over 140 brief videos that help the family caregiver learn new skills, including ways to increase social support. The online webpage can be accessed at any time of day and is supplemented by sessions with a clinically-trained Dementia Care Specialist via telephone or web conference. Participants in theResources4Care arm receive access to online hub, which includes information on Alzheimer’s disease, caregiving, caregiver stress, and home safety, and can be accessed at the caregiver’s own pace.
According to Dr. Stevens, the principal investigator on the GamePlan4Care project, “this clinical trial tests the concept that online support can improve caregiver quality of life by providing access to a trained specialist to help the families sort through the online material and adapt the resources to their own lives.” The six-month study evaluates changes in multiple aspects of quality of life, including caregiver burden, depression, self-rated health status, social support, and interaction with healthcare providers.
Dr. Stevens says, “With the COVID-19 pandemic, telehealth and digital health services are now more important than ever before. We are seeing an increase in the number of older adults who are excited to engage online with their colleagues and loved ones, a process that could make them more likely to get value from online interventions like GamePlan4Care.”
Dementia Care Study
Researchers at CAHR are also key collaborators on a multicenter Dementia Care Study, which is funded by the Patient-Centered Outcomes Research Institute and the National Institute on Aging. The Dementia Care Study is recruiting 2,150 people with dementia and their caregivers to compare the cost-effectiveness and efficacy of a community-based dementia care program, a health system-based dementia care program, and the usual care provided to dementia patients. The 18-month study is evaluating dementia-related behaviors and caregiver distress, as well as a host of quality-of-life and cost-effectiveness outcomes. Their goal is to perform a pragmatic assessment of whether enhancing support through the healthcare system or through community resources can improve quality of life. According to Dr. Stevens, “We know caregivers are in challenging situations, which are intensified by the pandemic, and we want to see which support programs are most effective.”
Center for Applied Health Research
Researchers in BSWRI’s CAHR conduct innovative projects to support multiple vulnerable populations, including older adults, people with dementia and their caregivers, people with chronic illness, and veterans. Their highly collaborative program includes research with partners both inside Texas and nationwide.