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Patient Care

An often overlooked aspect of this is the role of caregivers in the decision-making process. For many of the older patients, there is a great reliance on spouses, adult children, or others in the unpaid provision of care.

Estimates for the prevalence of informal (unpaid) caregiving (proportion of those 18 and older who provide care to one or more adults) show that between 20% and 30% Americans are currently providing care, with wide variation by region and level of care provided. This is a large segment of the population, to say the least.

Over the past 15 years, I have worked with manufacturers and service providers in the healthcare markets, helping them to both generate and put into place insights about their constituents. I am often struck by how little attention is paid to the role of caregivers in decision-making processes. It is highly relevant and appropriate to understand the caregivers’ perspective on many aspects of patient care. Several ambulatory and inpatient therapy areas come to mind including oncology, nephrology, respiratory; just to name a few. As many older adults can simply not live independently at home, the role of the caregiver in facilitating transitions to either assisted living or long-term care facilities is crucially important.

In several of our own studies, we use caregivers as proxies for patients, with some patients unable to physically or mentally provide feedback about preferences, unmet needs, and desired outcomes. It is the caregiver, in fact, who is most important in these cases, as we distill patient preferences into their own, as the caregiver ultimately makes the decisions.

Caregiving Population

Earlier this month (March 12, 2014), at the American Society of Aging Conference3, two of my colleagues (Thomas Richardson, PhD and Jessica Spilman, MPH) shed light on this topic, with their presentation entitled Caregiving in the USA. Leveraging the results of a study with more than 5,000 completed interviews, there are some key statistics about the caregiving population that are especially important:

• More likely to be women • Most often providing care to a parent • They are the primary caregiver in about half of the cases • Other children or grandchildren are also providing care in more than half of the cases • Decision making: 31% say that they make the final decision about health insurance • More than half spent as much as $1,000 in caring for the adult in past year • 83% do not receive caregiving support services



Thus, this special constituent class can be extremely important from a messaging and delivery perspective with regard to inpatient, ambulatory as well as home care services. But what do we know about them, how can we tap into what makes them tick, and how can we, especially in the service provision side leverage their influence to optimize the delivery and net impact of the health care we provide?

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