The Science of Us-Care

Caregiving is one aspect of our lives about which many things can be true at once. It is simultaneously a beautiful privilege and a tremendous challenge. It is both formative and daunting; clear and yet profoundly confusing; generative of much love while also extraordinarily taxing.

In addition to its many positive features, healthcare providers are frequently witness to the profound burdens that many caregivers shoulder, day-by-day. Doctors and nurses see up close what research has consistently shown at the national level: caregivers often experience rates of mental illness at twice the rate of the general population. These challenges are often compounded in those who care for persons living with dementia. And these are just the mental health effects. Many who provide daily care for a loved one experience financial difficulties resulting from time away from work. Furthermore, several studies have noted that care partners experience worsening physical health – such as arthritis and heart disease – across their lifetimes.

What do we do about these profound risks? In my career, walking with many caregivers along their various journeys, I have found that the most important step is a fundamental change in perspective. We (quite naturally) tend to approach caregiving as a zero-sum enterprise: the caregiver sacrifices, while the care recipient gains. The more we do for our loved one, the better the outcome for that person. This is of course true to some extent. At some level, caregiving will involve loving sacrifice.

And yet this is far from the whole story. Research has shown consistently that the health of care partners is closely—indeed reciprocally—connected with the health of care recipients. Care partners of caregivers experiencing depression and anxiety are themselves significantly more likely to experience mental illness. The heavier one’s caregiver burden, the more likely it is that their care recipients will be hospitalized. There is even research that suggests that care recipients experience better cognitive outcomes when caregiver stress is lower.

Caregivers should therefore take heart in the knowledge that efforts to focus on their own health will positively impact the person for whom they care. This invites us into a more liberating, affirming perspective on our caregiving experiences. As caregivers, we should absolutely prioritize activities and arrangements that will support our own well-being. In so doing, we will actually care better for our loved ones.

In fact, for this reason scientists are increasingly dropping the term "care dyad" in favor of "care networks".” In order to improve both caregiver burden and care outcomes, we need to think in terms of optimizing the network of care for our loved ones and for ourselves, in the context of our communities, and the supportive resources they provide. Each network will look different. Some may be small, others large. Some may be simple, others more complex. At Alula, our goal is to be a facilitator and a catalyst – helping you optimize your specific care network for those you love, and for yourself. Our hope: better health for all who care.