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The Needs of Rare Disease Caregivers

A recent study looked at available research on the needs of caregivers who look after someone with a rare disease. The journal article identified seven areas that need attention, including communication and the way doctors deliver the diagnosis.

A caregiver helps a patient walk down a sidewalk.

Several hundred million people live with a rare disease, which means there are millions around the world who take on the role of a caregiver. Whether they’re partners or parents, they invest many hours into the well-being of their loved ones and help keep patients moving forward.

Researchers recently compiled the findings of 35 studies about caregivers to take stock of what’s known about this challenging work and how to better support them. Carers carry a heavy burden due to constantly placing others’ needs before their own, according to the analysis.

“Previous research has shown that informal caregivers do not have enough time for themselves, and that caring for someone with a rare disease can negatively impact on all dimensions of family life,” the authors wrote in Open BMJ.

The review identified seven categories of needs and several could be addressed through better communication, starting with diagnosis.

“Previous research has shown that families are often dissatisfied by the way in which a diagnosis is given, including an insensitive style of communication, not offering support or counselling, and inadequate provision of information about the disease,” the study authors wrote. Interventions and patient education in both hard copy and digital form would help address this gap, they said.

Rare disease caregivers often become experts on the rare disease and then must manage an upside-down relationship with their doctor, who might not be as well versed as they are.

“This often leads to poor communication and collaboration. Furthermore, a lack of coordination of care force carers to fill the gap by juggling multiple roles including that of advocate, case manager and medical navigator,” according to the study.

Other areas that need attention include social needs, financial needs, psychological needs and relief from the burdens of caregiving.

See the full study in Open BMJ, which considered research published between 2006 and 2021 in Australia, Canada, Germany, Ireland, Italy, Netherlands, Spain, the United Kingdom and the United States.

Self-care practices can recharge a caregiver’s body and mind, said Cristol Barrett O’Loughlin, the Chief Executive Officer of Angel Aid, which offers wellness meetups, retreats and a mother-to-mother network. She recommended these tips:

  • Schedule down time: “Just as you schedule meetings, carve out time for yourself,” O’Loughlin said. “Whether it's reading, meditating or simply unwinding, this time is sacred. Remember, you deserve a break.”
  • Connect with others: Human connections are like soul medicine, O’Loughlin said.

“Spend time with loved ones, friends or even new acquaintances,” she said. “Share laughter, stories and experiences – they're the threads that weave a colorful life tapestry.”

  • Take sleep seriously: “Your body is a temple, and sleep is its rejuvenating ritual,” O’Loughlin said. “Prioritize 7-9 hours of quality sleep each night, watch how your energy, mood and productivity soar.”