Celebrating the Tireless Efforts of Family Caregivers

Recognizing and honoring the invaluable contributions of family caregivers.
· 10 min read

November is a special time when families come together for the holidays, and it's also National Family Caregivers Month. This is a time dedicated to recognizing and honoring the invaluable contributions of family caregivers across the country. The national observance is led by Caregiver Action Network (CAN), a nonprofit organization that provides free education, peer support and essential resources to family caregivers. CAN designates this month to acknowledge the reality that family caregiving is not always convenient or expected. It's a reminder that as families unite during the holiday season, there are unsung heroes among us, quietly providing care and support to their loved ones in times of need.

Caring for Loved Ones: The Unsung Heroes

More people than ever are taking on the role of caregivers. In fact, statistics reveal that approximately one in three adults in the United States has become an informal or family caregiver, providing essential assistance to an ill spouse, a child with a disability or an aging friend or relative. Despite the vital nature of this role, caregiving often remains a challenging and largely unexpected endeavor. Extensive research underscores the significant emotional, physical, and financial toll that caregiving takes. Many family caregivers must navigate the intricate balance between their caregiving duties and other daily responsibilities, including work and personal commitments.

Caregiving for a Child with a Rare Disease

At AscellaHealth, our focus revolves around providing patient-centric services to individuals coping with complex, chronic conditions or rare diseases that necessitate specialty medications and, in some cases, cutting-edge cell and gene therapies. This unique vantage point has given our team a profound understanding of the world of caregiving. When parents find themselves shouldering a greater burden due to caring for a child with a rare disease, it prompts a transformation in the typical parental role. Research has identified four core areas in which the parent/caregiver of a chronically ill child with a rare disease operates:

  • Managing the Illness: This encompasses vigilance, monitoring symptoms, hands-on care, decision-making and problem-solving.
  • Identifying, Accessing and Coordinating Resources: It involves forging relationships with institutions and medical professionals to ensure the child receives the best possible care.
  • Maintaining the Family Unit: This requires integrating the management of the illness into the fabric of daily family life.
  • Maintaining Oneself: Caregivers must attend to their own physical, emotional and spiritual well-being.

Recognizing Caregiver Stress

Caregivers shoulder a multitude of responsibilities, from administering medications to assisting with everyday tasks like dressing and bathing. The signs of stress among caregivers can manifest in various ways:

  • Persistent feelings of burden and worry.
  • Frequent fatigue and disrupted sleep patterns.
  • Noticeable changes in weight.
  • Heightened irritability or anger.
  • Loss of interest in activities that once brought joy.
  • Pervading sadness.
  • Frequent headaches, physical discomfort or health issues.

Support for Caregivers

AscellaHealth and our Specialty Pharmacy, Optime Care provide groundbreaking patient and caregiver engagement programs that extend far beyond conventional information hotlines, call centers or static web resources. Our individualized care plans address the ongoing concerns of patients, caregivers and families with outreach initiatives implemented at critical stages in therapy. We employ a range of technological tools, including phone, email, text messaging and mobile apps, to streamline communication and enhance response rates.

Our comprehensive support structure for patients and caregivers encompasses the personalized assistance of specialty pharmacists and highly-skilled patient care coordinators (PCCs) who passionately assist patients and caregivers by delivering continuous education and support throughout the healthcare journey. These PCCs build strong relationships with patients and their families, offering a wealth of specialized therapeutic expertise supporting patients with rare, orphan, and ultra-orphan conditions, and includes our deep understanding of the unique needs and challenges of all those who live and work with these conditions. We recognize that these ongoing duties can be overwhelming for even the most dedicated caregivers. That’s why our high-level coordinated support services help to ease the pressures placed on caregivers. Furthermore, our PCCs harness the resources of comprehensive patient engagement tools and a user-friendly app that facilitates seamless ongoing communication with patients and caregivers.

Join Us in Celebrating Caregivers

National Family Caregivers Month provides a meaningful opportunity to recognize the multitude of challenges that caregivers face, educate our communities and bolster support networks for caregivers. This year, the theme for National Family Caregivers Month is #CaregiversConnect, highlighting the importance of fostering connections among caregivers and their communities. It underscores the significance of solidarity and the power of coming together to share experiences and provide mutual support.

National Family Caregivers Month also introduces a set of hashtags to promote awareness and encourage dialogue around caregiving issues. You can use #NationalFamilyCaregiversMonth, #NFCMonth and #familycaregivers to join the conversation and raise awareness about the vital role caregivers play in our society.

At AscellaHealth, we take great pride in participating in this vital awareness campaign. We invite you to join us in honoring the dedicated caregivers who provide unwavering support and care to their loved ones each and every day, making an immeasurable impact in their lives.

For more information on how AscellaHealth supports patients and their caregivers, visit www.ascellahealth.com

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