Collecting data from 1,406 adult caregivers of people of all ages, the Rare Disease Caregiving in America study describes the experiences and challenges of this targeted group of caregivers in a holistic way across more than 400 different rare diseases.
As many as 30 million Americans have a rare disease, condition, or disorder – a health condition affecting fewer than 200,000 people nationwide. In many cases, the person with the rare disease isn't tackling the condition alone. They often receive unpaid, volunteer support from a friend or family member, the family caregivers. To study the impact of family caregiving on families of choice and families of kin, the National Alliance for Caregiving partnered with patient advocacy group Global Genes to research how rare disease impacts the family unit. Collecting data from 1,406 adult caregivers of people of all ages, the Rare Disease Caregiving in America study describes the experiences and challenges of this targeted group of caregivers in a holistic way across more than 400 different rare diseases. Here are some highlights.
Who Cares for People With Rare Disease?
Most rare caregivers are providing care to a child under the age of 18 (62%), with the average age of the care recipient – that is, the person who had a rare disease, condition, or illness – being 20.9 years old. Most rare caregivers are immediate relatives, with 59% caring for their own child under 18, 17% caring for their own adult child, and 14% caring for a spouse or partner. Nearly all rare caregivers live in the same household as their care recipient (89%). Rare caregivers tend to provide care to someone whose rare condition or disease is genetic in nature (71%), though the list of conditions for which care is provided in this study is over 400 unique conditions long. Only 43% report there is a treatment available for the underlying disease or disorder and most (82%) report that treatments or therapies are used for symptom management rather than actual disease treatment. Rare caregivers rely on doctors and medical professionals to help them and their care recipient through the experience of rare disease.
Caregivers Working With medical professionals
More than eight in ten rely on medical professionals for information (82%). However, adequate medical and support services can be difficult to access. Fewer than two in five rare caregivers feel their care recipient's local hospital can handle the underlying rare disease or condition (38%). Roughly one out of every three rare caregivers report having difficulty in accessing treatments or herapies for symptom management (34%) or treatment(s) for the underlying disease (31%). Rare caregivers may need more support from the doctors and care professionals they interact with. Fewer than half (48%) 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.
Most rare caregivers have been providing care for a significant period of time, 8.9 years, on average – more than double the caregiving commitment found among caregivers more generally. Rare caregiving is also time-intensive. Rare caregivers of adults spend about 37 hours a week providing care on average – about 12 more hours a week than general caregivers. Even more striking is the amount of care provided by rare caregivers of a child: 53 hours a week, on average, compared to 30 hours for general child caregivers.
Rare Caregivers as experts
A defining feature of rare caregiving seems to be one of expertise. Rare caregivers have to function as nurses, performing medical/nursing tasks: 84% help their care recipient with medical/ nursing tasks. These tasks are a defining feature of rare caregiving: as rare caregivers face barriers to service support and care access, they are being called upon to do these complex medical/nursing tasks for the duration of their role as caregiver. The majority "become" teachers, educating health-care professionals about their care recipient's rare disease or condition (89%). Rare caregivers can also find themselves researching and accessing clinical trials. One in four report their care recipient has participated in a clinical trial and when that occurs, the rare caregiver often has to help with things like paperwork (77%), transportation (65%), trial response documentation (62%), and care coordination (59%). Surprisingly, only one in three rare caregivers report using paid help or aides (33%). Support service use is also not common, with just 22% having used respite and 14% relying on an outside transportation service. This day-to-day responsibility means that other immediate and extended family members may be called upon to help provide care, with 59% reporting help from at least one other unpaid caregiver. This domino-effect of care can extend to youth in the family, with 24% reporting their care recipient receives unpaid care from at least one youth under age 18.
The Ripple effect on the whole family
Rare caregivers note the ripple effect of rare disease on their family, with 74% struggling with a sense of loss for what their care recipient's life could have been and fewer than half feeling their role has had a positive impact on their family (44%). This ripple effect does have some positive results, as most rare caregivers report feelings of pride in improving the understanding of their recipient's condition (94%) and feeling close to their care recipient (85%). More than half (56%) feel a sense of purpose due to their caregiving role. The day-to-day impact for rare caregivers is pervasive in all aspects of their life, with no areas untouched: the effects are seen in the workplace, school, and on their physical and emotional health. Two out of three rare caregivers have worked while providing care (65%) and nearly all report a bleed over into their work life, more so than general caregivers who work. Nearly all have gone in late or left work early to provide care (91%). One in ten rare caregivers are also students and, as with work, they often struggle to fulfill their school responsibilities.
Rare caregivers say providing care to their care recipient is emotionally stressful (67%), twice as high as that of general caregivers. Four in ten report having fair or poor emotional or mental health (41%). To a lesser degree, rare caregiving can be a physical strain to caregivers, with 37% reporting high physical strain. Those who do more hands-on care, like medical/nursing tasks and Activities of Daily Living, experience greater physical strain. Rare caregiving takes a clear toll on the physical health of caregivers, with 30% rating their physical health as fair or poor, and 58% finding it difficult to take care of their own health.
The ripple effect of rare caregiving can extend past day-to-day tasks of providing care, the need for others in the family to pitch in, and the emotional and physical well-being of the caregiver. Rare caregiving can ultimately impact the finances of the rare caregiver and their family unit, and these financial impacts loom large. Half of rare caregivers face high levels of financial strain (51%) and three out of four worry about the ability of their own family or their care recipient's family to pay for care. Nearly all rare caregivers have experienced financial hardship because of their caregiving role (86%). Common areas of impact include cutting back on household spending (81%), not saving for long-term goals (62%), and using up personal savings (59%). Nearly one in ten have filed for bankruptcy (9%). Future planning is not the norm among rare caregivers: just 35% have a contingency plan in place in case they are unable to provide care and only 29% have plans in place for their care recipient's future care (i.e. financial, health, and living arrangements).
Not only does rare caregiving impact the caregiver's daily life, the family unit, their well-being, and their long-term finances, but the role of rare caregiver changes their social lives. About half of rare caregivers have difficulty maintaining friendships (51%) and 53% report feeling alone.
Parents Caring for Their own children
The study also highlighted the challenges facing parents caring for their own children. Six in ten rare caregivers surveyed are a parent caring for their own child under age 18 (59%). Parents who are providing care to their own child with a rare disease or condition often provide around-the-clock care and have been doing so for close to their child's entire life. Rare caregiver parents often face impacts on their well-being, reporting lower levels of emotional or mental health and struggles with maintaining friendships and feeling alone. Two out of three find it difficult to maintain their own health (66%), though just 30% report having been asked about their own self-care by a care provider. Many report financial impacts, such as not saving for the long term or using up personal savings at a phase in their lives of typical prime, working, and earning years in that parents caring for their own child are 40 years old, on average. This financial ripple effect is likely to be felt for many years to come.
Children as caregivers
In addition to the adults who provide care, one out of four caregivers (24%) reported that there were other children in the household under 18 who helped to support the person with the rare disease. Rare caregivers caring for a child more often report the presence of a youth caregiver (27%) than rare caregivers of an adult (17%).
The presence of other unpaid help is more common the younger the care recipient's age. About six in ten rare caregivers of an older recipient (age 30 or older) are the sole caregiver, compared to just 30% of those caring for the youngest care recipients. Although it may be easier to garner additional rare caregivers for the youngest recipients, this more often means that youth are pulled into providing rare care.
Students as Caregivers
In addition to providing care, 10% of rare caregivers are also students. Of note, 8% of rare caregivers are both enrolled in school and working while providing care. These caregivers are 39 years old, on average – about 6 years younger than the total group of surveyed rare caregivers (44.9 years old).
One out of every five Millennial rare caregivers (age 18-36) reports being in school while caregiving (19%), significantly more than Gen X (age 37-52; 9%) and Boomer or older (age 53 or older; 3%) rare caregivers. Rare caregivers who are of racial/ethnic minority groups more often report being a student while caregiving (18%) as compared to non-Hispanic Caucasians (9%).
Similar to caregivers in the workforce, are caregivers often struggle to fulfill their school responsibilities. Among student rare caregivers, roughly two out of three have taken more online classes (69%) or missed class to provide care (63%). More than half say they have missed an exam or assignment (58%).
Hope and frustration as a rare caregiver
Throughout the study, rare caregivers shared some of their perspectives on the caregiving journey: "For me, the most frustrating thing is having to educate doctors about her condition instead of them telling me what the problem might be. I am the one that researched [condition] and found a geneticist who confirmed my suspected diagnoses. I'm also the one who figured out that she has [other conditions] and found methods of managing her symptoms… We've never had a doctor who did any research to try to help her."
"There is little research being done in the U.S. for my daughter's condition, and few physicians know anything about it. I diagnosed her condition myself after she had been seen by multiple specialists over 15 years…I have to educate everyone we deal with, and I have to take the lead on all her care: doing the research, reading the studies, calling – even internationally – to speak with physicians and researchers who do work on her condition…Nonetheless, I am exhausted, sad, and discouraged." "My son gives me hope. I know that I am here raising him and caring for him myself. I have more knowledge now about many things I didn't have before. I have hope that he will grow up knowing all that I have sacrificed for him to have a longer life, to know that I am a great mother, and that I love him with all my heart." "[I feel hopeful] when I see my son connect with other kids that have [condition] and are leading full lives. When he meets young adults who go on to have successful careers, despite the disease. I wish we had more opportunities for him to meet and stay connected with people such as this." "The only good thing about a rare disease is the people you meet with the disease. It's a double-edged sword, though, because in some corner of your mind, you know they won't win either…will [a cure] come in time for my dear friends who have the disease now?"
Calling for help for rare disease families
With these unique challenges facing rare caregivers, the report offered some solutions to better support America's rare families:
• Enhance the health of family caregivers through access to respite and counseling.
• Achieve financial security and workplace protections for family caregivers.
• Ensure family caregivers receive comprehensive training and information.
• Improve care coordination between skilled home health providers, direct care workers, and family caregivers.
• Expand services and supports available to family caregivers on the community level.
level. • Include family caregiver as a vital member of the team in health care settings.
• Recognize the family caregiver's role in clinical trial research and innovation.
To learn more about the study, visit caregiving.org/rare. To find resources for yourself or others who are caring for someone with rare disease, visit globalgenes.org