Produced in conjunction with the Population Aging Research Center at the University of Pennsylvania.

Managing medications, preparing meals, booking appointments, and assisting with bathing, feeding, and dressing are just a few tasks associated with caregiving for another person. Learning to do these tasks well can be difficult and takes practice, but once you’ve mastered the art of caregiving, you and the person under your care can benefit. 

Caregiver mastery – a positive perception of one’s efficacy in caregiving – plays a crucial role in the well-being of individuals with cognitive impairment, such as dementia. Prior research has established that mastery, akin to confidence in caregiving, positively influences the health outcomes of care recipients. In this context, a study led by LDI Senior Fellows Nancy Hodgson and Adriana Perez aimed to enhance our understanding by adopting a longitudinal approach. Published recently in BMC Nursing, it involved tracking 154 dyads of individuals with cognitive impairment and their caregivers over an extended period, with the aim of examining the relationship between caregiver mastery and anxiety. This approach provided a more nuanced perspective on the dynamics of this association over time.

According to the study’s findings, interventions that support and enhance caregivers’ skills and confidence may lower anxiety levels in individuals with cognitive impairment. For the nation’s 16 million family caregivers who care for individuals with cognitive impairments, these findings could help shape and improve the care dynamic.

We spoke to Hodgson and Perez to discuss the importance of this piece of research and the parent study, why they focused on anxiety, and what policymakers and clinicians might do to make a difference.

Why was anxiety a key challenge to address in this study?

Hodgson: As dementia progresses, individuals often exhibit symptoms, including anxiety, aggression, wandering, and sleep disturbances. Anxiety, in particular, poses a significant challenge for caregivers. It is especially difficult to alleviate anxiety in persons with dementia due to their cognitive impairment. Furthermore, medications for anxiety are not highly effective in individuals with cognitive impairment and have adverse side effects.

How does caregiver mastery influence anxiety in care recipients?

Hodgson: Our findings indicate that improved caregiver mastery is associated with reduced anxiety among individuals with cognitive impairment. This relationship might stem from caregivers with higher mastery possessing more extensive knowledge about addressing their care recipients’ needs and how to provide care effectively.

To provide some context, accurately assessing the needs of those living with cognitive impairment is crucial, especially since many may struggle to verbalize their requirements. Caregivers with lower levels of mastery might fail to connect their care recipients’ symptoms with indicators of unmet needs. If caregivers do not promptly identify and address these needs, it could lead to increased anxiety in their care recipients.

Another possibility for our finding is that caregivers with higher mastery likely possess better communication skills, contributing to reduced anxiety in their loved ones.

How did you adjust for potential bias in caregivers’ self-ratings of mastery?

Hodgson: Caregiver mastery reflects how caregivers perceive their efficacy in caregiving; thus, it is inherently self-reported. However, caution is required when correlating caregiver mastery with their actual caregiving skills. High confidence in caregiving does not necessarily equate to superior caregiving skills. Therefore, readers should be cautious in interpreting these findings. 

How can educational programs and resources support caregivers, and what implications do these strategies hold for healthcare providers and policymakers in enhancing the well-being of both caregivers and care recipients?

Hodgson: Dementia caregivers can benefit from psychoeducational programs in various ways. These programs should include information about dementia, aim to enhance caregivers’ skills in care and focus on improving the caregivers’ psychological well-being. It’s crucial to apply clinically proven effective interventions to as many of these caregivers as possible

Many studies in the past have focused on how the neuropsychiatric symptoms in persons living with dementia impact caregivers’ well-being, such as their burden and stress. However, our study has shifted the perspective: It suggests that the well-being of caregivers can also influence the neuropsychiatric symptoms in persons with dementia. Health care providers should consider that improved caregiver well-being has the potential to lessen these symptoms. Making educational programs available at the community level is crucial for the well-being of both caregivers and individuals living with dementia. Policymakers are encouraged to allocate grants for research into nonpharmacological interventions for dementia, such as sensory stimulation, reminiscence therapy, and meaningful structured activities, and recognize their potential impact on care. Additionally, they should support establishing community-based support networks to provide accessible resources for caregivers.

Can you explain the significance of the parent study being one of the largest samples of Black/African American individuals in the community with cognitive impairment and their identified caregivers and how you plan to use that in further research?

Hodgson: The parent study was a randomized controlled trial of a home-based activity intervention designed to improve sleep-wake disorders of people living with cognitive impairment. The parent study included approximately 200 dyads of people living with cognitive impairment and their family caregivers.  Including a substantial number (80%) of Black/African American participants in our randomized controlled trial is a notable strength. This diversity bolsters the external validity of our study’s findings. Including this underrepresented group contributes to a broader understanding of dementia care. 

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The study, “Better Caregiver Mastery is Associated With Less Anxiety in Individuals With Cognitive Impairment” was published in BMC Nursing on September 7, 2023 by Yeji Hwang, Miranda McPhillips, Liming Huang, Adriana Perez, and Nancy Hodgson.

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