Q&A

On Cancer: Caring for Caregivers

By Christina Pernambuco-Holsten, MA  |  Monday, November 18, 2013
Pictured: Allison Applebaum Allison Applebaum directs Memorial Sloan Kettering’s Caregivers Clinic.

When clinical psychologist Allison J. Applebaum arrived at Memorial Sloan Kettering as a fellow in 2010, her work focused primarily on individual cancer patients receiving therapy through the Counseling Center. She had been encouraged to “take a broader look at our offerings,” however, and soon she was struck by another group who might benefit from her expertise: people caring for loved ones with cancer.

As she tells it, “I began to really take notice of the caregivers who remained behind in the waiting room, and then one day it dawned on me: There were literally hundreds of distressed caregivers walking around our hospital who might not be getting the help they need.”

To address this gap, Dr. Applebaum started Memorial Sloan Kettering’s Caregivers Clinic in November 2011, with the support of her mentor, Acting Chair of the Department of Psychiatry and Behavioral Sciences, William S. Breitbart. The first of its kind in the nation, the clinic provides individual and group psychotherapy, using a variety of approaches, to people caring for Memorial Sloan Kettering patients.

In this Q&A, Dr. Applebaum, who completed her fellowship and joined the staff in August 2013, talks about the complexities of caregiving, support available to caregivers and families, as well as several of her research initiatives for caregivers.

What are some of the common challenges caregivers experience? When is it time for a caregiver to seek help?

Providing care to a loved one with cancer is a full-time job, one that is often performed in addition to paid employment and other important responsibilities, such as child care. As a result of the multiple demands caregivers face, many experience what we call caregiver burden, a term that refers to the multidimensional distress experienced by caregivers.

Symptoms of burden can range from mild distress and fatigue, to feeling overwhelmed, exhausted, or irritable, to severe anxiety and depression. Notably, rates of anxiety and depression are often higher among cancer caregivers than among the patients for whom they provide care. Many caregivers feel that they did not have a choice to take on the caregiving role, and as a result, experience feelings of guilt, resentment, or remorse.

It’s important for caregivers to recognize the signs and symptoms of caregiver burden. All caregivers will likely experience some symptoms of burden during the caregiving trajectory – such as feeling fatigued, overwhelmed, or sad – but if these symptoms begin to impair their ability to provide care for the patient or themselves, it’s time to seek professional support.

Which types of therapies do you commonly use, and how can they benefit caregivers?

In my work with cancer caregivers, I use a variety of psychotherapeutic approaches, with an emphasis on cognitive behavioral and existential therapies. Cognitive-behavioral therapy (CBT) is the most-effective therapy for targeting anxiety and depression among caregivers.

CBT is based on the premise that our emotional experiences are linked to our thoughts and behaviors. Through an exploration of and adjustment in how caregivers are thinking about various situations, the intensity of negative emotions experienced during the caregiving trajectory can be lessened. I use CBT techniques to help caregivers manage symptoms of anxiety, whether they manifest as worrisome thoughts, physical symptoms such as shortness of breath, or depression, which could involve feeling hopeless about the future. CBT is also particularly effective in treating insomnia, one of the most common and distressing difficulties experienced by cancer caregivers.

I also draw on meaning-centered psychotherapy, an existential therapeutic approach developed by William Breitbart and colleagues. Meaning-centered therapy helps caregivers remain connected to what they find most meaningful in life despite the demands of caregiving. This approach is particularly effective in helping caregivers to recognize the critical role of self-care in successful caregiving and their potential for growth, resilience, and even benefit from this important yet difficult job.

What are some of the focuses of your research?

My research goals involve the development of psychosocial interventions for patients with cancer and their caregivers. I am particularly interested in understanding how cancer caregivers make meaning of the caregiving experience, and ways in which mental health professionals can help caregivers see how the caregiving role may be connected to their larger sense of identity and purpose, their history, and their values.

Caregivers often have demanding schedules, and so one of my interests is in creating interventions that are flexible and accommodating. Many of the interventions that have been found to be effective require in-person visits that take place over the course of many sessions, and I am looking at ways to adapt these into shorter interventions that do not require an in-person visit to the office. For example, I am currently collaborating with the American Cancer Society to develop a web-based version of meaning-centered psychotherapy that can be self-administered.

I am also investigating the unique experience of burden in caregivers of patients with particular cancer diagnoses and treatment regimens, such as bone marrow transplant patients and patients with brain tumors. My hope is to develop targeted psychotherapies that are tailored to their specific needs.

Any family member or friend who is involved in the care of a patient and desires support at any point in the caregiving journey is welcome to make an appointment with the Caregivers Clinic by calling 646-888-0200. Additional support for caregivers is also offered through programs such as the Virtual Groups.

Comments

Thank you for your work, it is well needed!

Thanks for all you are doing. Great Work!

Interesting to note that The Duke University Cancer Center provides each patient and their families ( particularly the care giver) a therapist who is available to guide them through the Cancer diagnosis, treatment and process. This service is available free of charge due to an established grant made to DUMC. My therapist, Ben Weast, has been an amazing source of information and advice and a much needed advocate and friend to me as a caregiver of my husband who has lung cancer mets to the brain along with an implanted Left Ventrical Assist Device ( LVAD). Ben has saved my life which has allowed me to care for my husband.

Thank you, Jacqueline, for your detailed description of the DUMC services. I am exploring such services for families of Alzheimers' patients as a professional MSW. I wish you and your husband the best in life which can be and hope you find continued relief, education and growth with your therapist.

it would be nice if MSKCC offered assistance to those caregivers that was both timely(not afternoons only in nyc) and free of charge.

Susan, we offer a virtual caregivers support group that meets online every fourth Wednesday, from 1:00-2:00 PM. Unfortunately, that's in the afternoon, which you said isn't good for you, but you can e-mail virtualgroups@mskcc.org for more details.

Our online community Connections also offers a caregivers' group where you can post questions and search and read through previous discussions. This is the info on how to participate: http://www.mskcc.org/cancer-care/counseling-support/connections-online-community

If you are caring for someone who is in active treatment at MSK, you can ask your loved one's physician for your social worker’s contact information or contact the Social Work Department at 212-639-7020. They may be able to arrange something over the phone.

You may also wish to consider participating in the Caregiver-to-Caregiver Support Group, which matches caregivers with other individuals who have gone through a similar caregiving experience. For more information, contact Jennifer Wang at 212-639-5007 or patient2patient@mskcc.org.

Finally, we offer an online writing group for caregivers. You can e-mail forcaregivers@mskcc.org or call Annamma Abraham Kaba, LCSW, at 212-639-2460 for details.

Other organizations outside of MSK where you might find support include Next Step in Care (www.NextStepinCare.org); Caring Bridge (www.caringbridge.org); and Cancer Care (www.cancercare.org), which offers a support group for caregivers that takes place over the phone.

Hope this is helpful!

I'm a bit late,but I do thank you for the information and I already know Annamma and will be contacting her very soon.

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