Daniel S. LevieCaregivers—the parents, children, spouses and other unpaid people who provide care to a loved one with a medical condition that makes it impossible for them to care for themselves—have long been among the least visible and most critical elements of the healthcare system. A new study suggests their needs are not only often ignored by providers and drugmakers, but by themselves.

Though there have been efforts in recent years to call attention to the important contribution caregivers make, much of the focus has been on caregivers of the elderly dealing with chronic conditions late in life. Now, a new report commissioned by the National Alliance for Caregiving in partnership with rare disease patient advocacy organization Global Genes (the publisher of Rare Daily), seeks to understand the rare disease caregiver, the issues they face, and what policy steps can be taken to address their needs.

The first-of-its-kind national study is based on an online survey of more than 1,400 caregivers of individuals with more than 400 different rare diseases conducted in late 2017 by Greenwald & Associates. The report comes just weeks after President Donald Trump signed the RAISE Family Caregivers Act, which requires the federal government over the next 18 months to develop a national strategy to address the needs of family caregivers. The new report could offer insight into the particular needs of this segment of caregivers.

The study found that three out of five rare disease caregivers are a parent who provides care to their own child under the age of 18 (59 percent), while another 17 percent are a parent caring for an adult child (age 18 or older).

Caregiving in many cases is a full-time job. On average, rare caregivers of adults spend about 37 hours a week providing care (12 more hours a week than general caregivers). Even more time is spent in caring for a child. The survey found caregivers spent 53 hours a week on average to care for a child with a rare disease, compared to 30 hours for general child caregivers.

When it comes to rare diseases, caregiving is also a long-term commitment. Rare caregiving lasts 8.9 years on average, more than double the caregiving commitment found among caregivers more generally. The majority of rare caregivers (63 percent) has provided care for longer than five years and 36 percent have provided care for ten years or longer. Nearly two out of every five rare caregivers of adults (37 percent) have provided care for 15 years or longer.

The toll caregiving takes are both emotional and financial. Some 74 percent of the respondents reported that they struggle with a sense of loss for what their care recipient’s life could have been and 67 percent say providing care to their recipient is emotionally stressful (twice as high as that for general caregivers).

Nearly three in five respondents (59 percent) reported that they had exhausted their personal savings, and nearly one in ten (9 percent) said that they have filed for bankruptcy. More than half (53 percent) report feeling alone and that they have difficulty maintaining friendships (51 percent).

The report makes a number of policy recommendations including suggesting steps to provide greater workplace protections and financial security to caregivers, ensuring training and information for caregivers, and expanding caregiver support and services at the community level.

But if there’s a theme to emerge from the report, it’s not just that caregiving for an individual with rare disease is among the most demanding forms of caregiving, but that providers, drugmakers, and caregivers themselves should do a better job of paying attention to the needs and insights of caregivers.

One in four rare caregivers report that the person they care for has participated in a clinical trial. In those cases, the rare caregiver often completes paperwork, provides transportation, fills out trial response documents, and coordinates care. The report suggests drug and device manufacturers should consider how the presence or absence of a family caregiver impacts the development process and consider caregivers as partners in clinical trial recruitment. As patient-reported outcome measurements are developed, the report also says innovators should identify ways to capture the perspective of the caregiver, including both the role of the caregiver in medication or device management and the impact of disease on unpaid caregivers.

In the provider arena, fewer than half of the respondents (48 percent) report that they have had a doctor, nurse, or social worker ask what was needed to provide care to the recipient, and just one in four have had these discussions about their own care needs. They often are required to perform medical and nursing tasks without training. The report recommends that paid medical care teams should identify the primary caregiver and ensure they are documented and included in plans for treatment.

Last, caregivers do a poor job of caring for their own needs. Only 33 percent use paid help or aides, and only about one in five (22 percent) have used respite care, professional support to provide the regular caregivers a break from their responsibilities. Two-thirds of rare caregivers say they find it difficult to maintain their own health. The report recommends policymakers should fund respite care services and counseling options for rare caregivers.

Caregivers are advocates too. Some 94 percent of caregivers serve as advocates for the person with a rare disease for whom they care. It may be that they need make a little time to advocate for themselves too.

February 28, 2018