Mary Elizabeth Quig, PhD–MS Center, Neurology Center of Fairfax, Fairfax,VA; James Simsarian, MD–MS Center, Neurology Center of Fairfax; Gary Cutter, PhD–University of Alabama; Denise Campagnolo, MD–Barrow Neurological Institute;Tuula Tyry, PhD–Barrow Neurological Institute;Timothy Vollmer, MD–Barrow Neurological Institute; Ruth Ann Marrie, MD–Mellen Center of MS Treatment and Research; Carol Saunders, RN, BSN–Neurology Center of Fairfax.

Introduction

What impact does caring for a loved one with multiple sclerosis (MS) have on the MS CarePartner’s emotional health and physical wellbeing? In 2005, a group of researchers and clinicians from the Neurology Center of Fairfax, VA and the NARCOMS Registry joined forces to answer this question. For this study, approximately 12,000 registrants in the NARCOMS database were contacted. We asked them to request their CarePartners evaluate the impact of their role as a MS CarePartner on their stress levels, emotional well-being, and general physical health. This article will review the preliminary findings from this multi- disciplinary study.

Caregiving Stress in General

The role of caring for a physically-challenged loved one can be both rewarding, as well as a physically and emotionally hard experience. Multiple studies have reported that chronic caregiving stress increases morbidity and mortality for the CarePartner. The National Alliance for CareGiving estimates that caregiving spouses between the ages of 66 and 96 years who are experiencing mental or emotional strain have a 63% higher risk of dying than people the same age who are not caregivers. Additional research shows that stress from chronic caregiving negatively impacts the cardiovascular, immune, and endocrine functions. Caregivers have increased numbers of respiratory tract infections, a poorer response to influenza virus, and slower wound healing than wellmatched noncaregivers.

The Medico-Economics of Caregiving Stress

In addition to doing household chores, shopping, transportation and personal care, 37% of caregivers are involved in giving medications, injections and medical treatments to the person for whom they are caring. Reliance on family support networks has become a major part of national health policy. Demographic trends suggest an increased reliance on family caregivers in the future. It is estimated that 80% of community care is provided by familycaregivers, at an approximate economic value of $200 billion annually. Studies on the economic impact of Alzheimer’s disease (AD), for example, have found that the average caregiver with a full-time job misses more than three weeks of work per year, and that one fifth will quit their jobs altogether to provide full-time care.

The Unique Challenges of Being a MS CarePartner

There are several warning signs of CarePartner Stress, including those listed in Table 1 below. It is important to keep in mind that the level and extent of caregiver stress experienced by MS CarePartners is different from the caregiver stress experienced by AD CarePartners. First, MS is an inherently unpredictable neurological illness (as opposed to AD, which is progressively staged). Second, MS typically strikes at an earlier age than AD. As such, the period of caregiving stress is both quantitatively longer, and qualitatively different (i.e., not custodial in nature).

The NARCOMS MS CarePartner

For our study, approximately 12,000 registrants in the NARCOMS database were electronically contacted. We asked them to refer their CarePartners, if applicable, to a secure Web site (separate from the NARCOMS database) to complete a specific CarePartner survey. Electronic informed consent was collected. CarePartner responses were anonymous and confidential.

A total of 1,461 MS CarePartners participated in the survey and 62% were men and 38% were women. Their average age was 51.3 years, and the average number of years of education was 11.2 years. We asked participants to complete the Zarit Caregiver Burden Interview. The Zarit Interview asked 22 questions about the impact of their loved ones’ disabilities on their life. For each item, CarePartners indicated how often they felt a certain way–never, rarely, sometimes, quite frequently, or nearly always. Total Scores on the Zarit Burden Interview range from 0 to 88.

As illustrated in Figure 1, the overall Zarit Total score placed the group in the “Mild- Moderate Caregiver Burden” range. As expected, differences were found on the Zarit Total by MS sub-type: CarePartners for persons with Relapsing-Remitting MS (RRMS CarePartners) reported a lower burden than CarePartners for those with Primary Progressive MS (PPMS CarePartners) or Secondary Progressive MS (SPMS CarePartners).

Importantly, the Zarit Total Score did not increase over time. That is, years of caregiving did not predict increased caregiving burden. In contrast, the general health of the CarePartner did predict increased caregiving burden. In addition, a higher Zarit Burden Index was found to be associated with increased risk of sleep disturbance, as well as the presence of Mood Disorder for female PPMS CarePartners and female SPSMS CarePartners.

Health of the MS CarePartner

In our study, MS CarePartners reported the following health concerns: 28% of CarePartners reported high blood pressure, 26% reported high cholesterol, 13% reported chronic headache, 13% reported persistent trouble sleeping, and 17% reported depression or anxiety. High blood pressure rates tended to be higher for SPMS CarePartners than for RRMS CarePartners. As seen in Figure 2, nearly a quarter (23%) of the respondents indicated that their Primary Care Physician (PCP) was not aware of their role as a CarePartner. Within the RRMS Carepartner Group, 32% of male CarePartners did not tell their PCP of their role as a MS CarePartner compared to 23% of female RRMS CarePartners.

Top Stressors Reported by the MS CarePartners

Among the overall group of MS CarePartners 38% reported “restricted mobility” of their loved one as their #1 stressor (by MS subtype: 56% of PPMS CarePartners, 27% of RRMS CarePartners and 50% of SPMS CarePartners). Fatigue (18%), cognitive dysfunction (15%), and bladder/bowel issues (13%) were also reported by a high number of MS CarePartners as their #1 stressor.

Missed Work Days

Survey findings revealed that 53% of MS CarePartners had “missed work over the past year due to caregiving responsibilities.” Overall, the MS CarePartners surveyed missed an average of 7.3 days of work over the past year due to MS caregiving responsibilities. A total of 7% of MS CarePartners reported changing their employment altogether due to their role as a caregiver. CarePartners of patients with Primary Progressive MS missed three times as many days at work (16.5 days) and were twice as likely to change their jobs altogether due to their role as a caregiver (11%) when compared to CarePartners of patients with Relapsing-Remitting MS (4.7 days missed, 5% report employment change).

Summary

MS CarePartners who participated in this particular study reported interrupted sleep, higher levels of depression, increased rates of high blood pressure, and increased absenteeism in the workplace. Very importantly, years of caregiving did not predict increased caregiving burden in this study. In contrast, the general health of the CarePartner did predict increased caregiving burden. As such, wellness programs directed towards increasing and maximizing the general physical health of the MS CarePartner may help prevent the onset of caregiver stress.

Several sub-groups of MS CarePartners in this study were revealed to be differentially at risk for increased caregiving burden. First, PPMS CarePartners and male RRMS CarePartners were found to be differentially at risk for increased caregiving stress. Indeed, 32% of male RRMS CarePartners did not report their role as a CarePartner to their Primary Care Physician. Second, MS CarePartners (regardless of MS sub-type) experienced increased caregiver burden when their loved one had mobility limitations.

Our research team plans to complete the final analyses of this important data set and submit the first manuscript to a peer-reviewed neurological journal this winter. It is hoped that these findings will help promote the development and implementation of wellness programs for MS CarePartners who may be at risk for increased caregiver stress.

Although much work remains, we are excited about this important beginning. We are particularly grateful to those of you who took the time and spent the effort in completing our surveys. We are keenly aware and respectful of the critical importance of the role of the MS CarePartner in the care of their loved one. To this end, it has become our goal to help maintain (if not improve) the emotional and physical health of the MS CarePartner as well.

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