Caregiving
Since our founding in 2007, The Sickle Cell Foundation of Tennessee has distinguished itself as a leader in advancing equity for individuals living with sickle cell disease. Today, we continue to raise awareness and support their cause in every way possible. An important part of these efforts are supporting caregivers as well. Caregivers are an important part of the day-to-day management for sickle cell warriors. Most sickle cell caregivers work while caregiving. Almost 40 hours per week on average and most reporting at least one impact on their work attendance due to their caregiving role. Sickle cell caregivers commonly stop saving, leave bills unpaid or take on more debt due to their significant roles that they play in the patient’s life. About half of sickle cell caregivers feel they had no choice in taking on their role, but the majority find a sense of purpose or meaning in the care giving role. Sickle cell caregivers less often report being in excellent or very good health than non sickle cell caregivers.
As a family caregiver of a love one with sickle cell disease, you can feel overwhelmed and hardly know where to start. That’s not surprising. Caregivers in the sickle cell disease community face some exceptional hurdles; their personal duties can often take a backseat to caring for the patient. Sickle cell disease caregivers often face a higher burden of very intense caregiving activities. They may even have faced the special challenge of having to be the one to educate the medical providers and others about the sickle cell disease itself. So they need information, education and tools that can help you manage the many daunting tasks you face.
Some facts on the impact SCD has on a caregiver’s life:
- Nearly 60% of sickle cell disease caregivers are the primary caregiver, with most being immediate relatives
- Roughly one in ten assist some other relative or a non-relative with their rare disease or condition
- More than one in ten rare disease caregivers are providing care to an adult age 50 or older
- Around 37% care for a child or family member
- More than eight in ten rare disease caregivers rely on medical professionals for information
- Three in five sickle cell disease caregivers help with at least one activity of daily living and more than half feel a sense of purpose due to their caregiving role
- Nearly all sickle cell disease caregivers monitor the severity of their care recipient’s condition, advocate for them, and communicate with care providers
- Three out of five sickle cell disease caregivers find it difficult to maintain their own health
- Long-term rare caregivers – those who have been providing care for 12 years or more are more likely to be in fair or poor health than shorter-term
- About half of sickle cell disease caregivers have difficulty maintaining friendships and even more report feeling alone
- Most sickle cell caregivers say providing care to their care recipient is emotionally stressful, two times as high as general caregivers
- Sickle cell disease caregivers of adults spend an average of 20 hours a week providing care
- Seventy-five percent of rare disease caregivers have experienced financial hardship because of their caregiving role
Please contact us regarding our FOUR POINT CAREGIVER PLAN
Access your health | The Plan | Implementation of Plan | Take care of my health and wellness
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