Gretchen Relva, PT, of the Neuromuscular Center at the Hospital for Special Care in New Britain, Conn., talks to her patient Susan about the role of her caregiver.
The role a healthcare practitioner plays in managing the care of a patient with ALS is challenging, overwhelming, and at times, disheartening. Yet this role pales in comparison to the job the main caregiver assumes when a loved one is diagnosed with ALS. With new responsibilities and limited time, it's easy for a caregiver to lose sight of his own needs and health.
An ALS diagnosis is often met with devastation, alarm and confusion by the patients and family members. As time goes on, the shock and grief of the disease can be just as profound for the caregiver as it is for the patient. The healthcare practitioners who staff the ALS Association-certified ALS Centers across the United States have been trained to recognize and address the needs of family members caring for patients with ALS.
"Caregivers are an important part of the support system for patients, but this horrible disease takes its toll on them, too," observed Kevin J. Felice, DO, chief of the Neuromuscular Center and director of the ALS Clinic at Hospital for Special Care in New Britain, Conn. "We remind our patients that their family members are going through the disease as well, just in a different way."
The Neuromuscular Center invites caregivers to attend appointments with their loved ones to become more knowledgeable about the disease. According to Felice, family members and caregivers are invited to attend support groups that address issues specific to their role, such as fatigue and respite.
"Providing services and support to the caregiver is just as important as providing services to the patients," shared Wendy Barnes, LSW, social worker, ALS Association, Greater Philadelphia Chapter. "ALS has a tremendous physical and emotional impact on the caregiver."
Social workers provide support to persons with ALS (PALS) and caregivers by providing counseling, assisting in obtaining community resources, facilitating support groups and providing education.
"We work with social work on guiding our patients to accept home care assistance to reduce the burden on the caregivers," explained Zahira Paul, MS-OTR/L, staff level II therapist, ALS Association, Greater Philadelphia Chapter, ALS Center at Penn State Hershey Medical Center.
The daily tasks of caregivers, according to Paul, often include bathing, cooking, cleaning and dressing. Having a home care aide provide assistance a few times a week can help the family better manage the diagnosis.
Paul suggests caregivers seek out some of the same resources that are available to the patients themselves. Online communities, such as www.patientslikeme.com, which was started by the family of a patient with ALS, can help caregivers understand what their family members are going through and to feel more connected, Paul shared.
Identifying the Caregiver's Needs
"We don't know the trajectory of the disease, but we can connect patients and caregivers with the resources and tools they need to maintain quality of life as the disease progresses," said Susan Walsh, RN, MSN, ACNS-BC, regional nurse coordinator for the Greater Philadelphia Chapter of the ALS Association and program coordinator at Penn State Hershey Medical Center's ALS Clinic, an ALS Association Certified Clinic. The ALS Association Greater Philadelphia Chapter serves Central and Eastern Pennsylvania, Central and Southern New Jersey, and Delaware.
Nurses from the Hershey Medical Center ALS Clinic join the physicians each time ALS is diagnosed to provide support for family and caregivers throughout the progression of the disease. Based on an increasing need, the clinic developed an evidence-based caregiver assessment.
"We are caring for the patient and the caregiver so we need to assess their health as well," Walsh said. "We assess anxiety levels and depression and address their fears and concerns. ALS impacts everyone involved and can manifest in a variety of ways."
In addition to the caregiver assessment, the Hershey Medical Center ALS Clinic has developed a quality of life ALS tool for the patient.
By addressing the issues caregivers face, the healthcare team is able to improve the patient's circumstances as well. "This is an illness that affects the whole family unit so we try to take good care of our caregivers," shared Gretchen Relva, PT, neuromuscular PT, Neuromuscular Center at Hospital for Special Care.
Relva makes sure caregivers know the proper techniques for lifting or rolling a patient so they are not susceptible to injury. She teaches family members how to assist in guarding to prevent falls and recommends equipment that will help them stay safe so they may continue to care for the patient.
"A family member may reveal a problem the patient is encountering so that I can tactfully discuss the issue," Paul shared. "It's often a safety issue such as not using a walker when needed. Sometimes I need to be the bad guy so the caregiver doesn't have to be."
Paul will explain the importance of using the walker at all times to prevent a fall and potential broken bones. "The caregiver has enough battles throughout the day, if I can help with just one, then I've done my job," she explained.
Like Paul, Relva often addresses concerns expressed by a family member. "I step in to advocate and help circumvent the problem," she said.
Supporting the Whole Family
With an illness as comprehensive, profound and devastating as ALS, there will be significant ramifications for patients and families, said Jennifer Klapper, RN, MSN, CNS-BC, mental health nurse, ALS Association, Greater Philadelphia Chapter and the Penn Medicine Neuroscience Center at Pennsylvania Hospital ALS Center.
With a background in family mental health and psychiatric nursing, Klapper provides much needed support to patients and family members. "I figure out how we can support the family while they are trying to find a new normal and deal with the challenges of the diagnosis," she said. "My job may be to figure out how to help a family whose breadwinner is now in a wheelchair with a communication device."
Klapper's primary objectives are to find breaks in the family's communication system that can be addressed; help reduce the stress from caregiving; address sibling issues and imbalances; identify mood disorders and anxiety; and devise a plan to treat the patient and meet his goals.
"We approach the diagnosis as a crisis and planning situation," Klapper shared. "We want to address issues before they become crises, so the family is equipped to face circumstances over time."
In addition to her role in the ALS Clinic, Klapper does home visits in 18 counties throughout Pennsylvania, New Jersey and Delaware. "Each home visit is different," she said. "I may work with an individual, a couple, the entire extended family, or every neighbor on the street."
Klapper, who has been working for the ALS Association since 1999, is passionate about educating everyone she can about the mental health ramifications of an ALS diagnosis. She instructs teachers and hospice staff about how to work with people with ALS and their family members; she runs support groups for patients' families and caregivers both in person and online (via Skype), and conducts Webinars on topics such as addressing anger stemming from the ALS diagnosis.
"Many of these patients were healthy and active in the prime of their lives when they were struck down by this disease," Klapper shared. "It's our job to make sure the patients and their caregivers know they are acknowledged, cared for and supported."