Stressors on Caregivers May Be Overlooked, Making Them ‘Hidden Patients’

December 1, 2003

This special supplement to Oncology News International presents 17 reports fromthe first annual Geriatric Oncology Consortium (GOC) multidisciplinary conference,‘‘Advancing Cancer Care in the Elderly.’’ Reports focus on issues in geriatric oncology,in particular team-based patient assessment and care delivery,adherence to medication, accrual to clinical trials, appropriate dosingthrough supportive therapy, radiation therapy, cognition problems, pain management,reassessment of outcomes, and caregiving issues.

TAMPA, Florida-Cliniciansneed to recognize the stress anddemands of caregiving, and shouldhelp minimize the practical hardshipsof this new and often unfamiliar role,according to William E. Haley, PhD."Caregivers can often make sacrifices,"said Dr. Haley, director of theSchool of Aging Studies at the Universityof South Florida, Tampa. "Weneed to do what we can not only toinsure that these caregivers get thesupport they need to provide care, butalso to minimize the impact of caregiving."Dr. Haley discussed thephysical and psychological toll thatcaregiving can take, at an Amgensponsoredsatellite symposium heldin conjunction with the GeriatricOncology Consortium.Caregiving can be a rewarding experiencefor some, Dr. Haley explained,even if the task proves to behighly stressful or financially burdensome.Some feel pride and self-esteembecause of their ability to manage theproblem. Older men, in particular,report a sense of personal growth foraccomplishing something theythought was not possible. Others saycaring for a loved one with cancergives their lives meaning and purpose.However, the caregivers are "certainlyat risk to be 'hidden patients,'particularly in a cancer setting," Dr.Haley warned. "We are concerned withthe patients, and may overlook prob-lems in the caregiver," he said.To address caregiver problems,minimal interventions such as rest,exercise, or being involved in church,synagogue, or other spiritual activitymay be sufficient. Some caregivers,however, may be candidates for formalcounseling or psychotherapy.Clinicians can help to reduce certainstressors on the caregiver througha variety of interventions: for example,telephone triage can reduce theinconvenience of frequent travel fortreatment, according to Dr. Haley."It's important for all of us on thehealth care team to try to be active inintervening," Dr. Haley said. "We oftengive people advice, like, 'take careof yourself, take some time off,' butsome sort of active intervention orprescription for change may be necessary,"he added."I recommend insisting that caregiverstake scheduled, regular breaksfrom caregiving, for exercise, socialactivities, and hobbies," he added."Such breaks will help caregivers sustaintheir ability to provide care whichcan be exhausting."The Toll of CaregivingCaregiving affects a broad range ofindividuals, as 80% of care for olderpersons with functional impairmentis provided by family members athome, rather than paid caregivers,nursing homes, or other sources, saidDr. Haley. An estimated 22 millionAmerican households are involved incaregiving to relatives over 50 years ofage; of that figure, about 7 millionhouseholds provide care for a relativewith impairments in activities of dailyliving, requiring a much greater degreeof sacrifice.The medical literature on caregivingfor cancer patients was summarizedrecently by Dr. Haley (Crit RevOncol Hematol 48:151-158, 2003). Inone article, Dr. Haley and colleaguesstudied families caring for relativeswith lung cancer who were in the endstages of hospice care. They found thatfamilies spent more than 100 hours aweek for in-home care of the dyingpatient. This research also found thatseverity of patient impairment was lessimportant in predicting caregiver depressionthan psychological and socialfactors, including family conflict, subjectivereactions to stress, and socialactivity. These factors can best be addressedby skilled counselors (J PalliativeMed 6:215-224, 2003).The Many Roles of a Caregiver"Caregivers in some sense have tobecome amateur nurses, social workers,and psychologists to manage all ofthe various symptoms that people mayexperience with cancer," Dr. Haleysaid, and juggling the physical, emotional,and mental demands of thisrole can generate a great deal of stress.Primary stressors, as identified byresearchers, include factors such asthe impact of taking the cancer patientto appointments, addressing the patient'sphysical or psychosocial needs,and dealing with end-of-life issues orgrieving over the death of the patient.Secondary stressors include "spillovereffects" related to financial issues (forexample, quitting one's job to providehome care) or social isolation resultingfrom the demands of caregiving.Perhaps as a result of these stressors,caregivers may be at increasedrisk of depression and mortality, studiesindicate.50% ShowElevated DepressionIn studies of highly stressed caregivers,30% to 50% show elevated depressionon self-report instruments;using stricter diagnostic criteria, about20% have clinically significant symptomsof depression. Dr. Haley and hiscolleagues found that spousal caregiversfor lung cancer patients had ratesof depressive symptoms at least twicethat of demographically matched, noncaregivingcontrols (Hosp J 15:1-18,2001).The burden of caregiving may alsoplace caregivers at high risk of death.The Caregiver Health Effects studylooked at stress and mortality in 392caregivers vs 427 noncaregivers aged66 to 96 years, over a 4-year follow-upperiod. After adjusting for other riskfactors, the investigators found thatmortality was 63% higher in highlystressed caregivers vs either noncaregiversor caregivers who did not reportmental or emotional strain (JAMA282:2215-2219, 1999).Risk Factors forPoor OutcomesMost bereaved persons return tonormal psychiatric function within 1to 2 years after the death of a lovedone, but 10% to 25% will have complicatedgrief, traumatic grief, orchronic depression, Dr. Haley said.Most bereavement studies do not considerthe influence of caregiving, headded, but they do suggest that highlystressed family caregivers may be athigh risk for poor outcomes."Part of that [bereavement complicationrisk]" for caregivers, Dr.Haley said, "is pre-patient death depression,a loss of social roles, anddecreased social activities or engagement-all problems highly stressedcaregivers can experience."Dr. Haley urged oncologists to recognizethe needs of caregivers, and tobe prepared to refer family membersfor supportive psychosocial intervention,including support groups andindividual counseling.