An Illness in the Family: Accounting for the Complex Effects of Illness on Other Family Members

Anna Karenina

Leo Tolstoy's observation in that"happy families are all alike, but every unhappyfamily is unhappy in its own way"¹ is an importantreminder to both health services researchers andhealthcare providers to recognize the often complex"ripple effects" of an illness throughout a family. Anacute or chronic illness in a spouse, parent, or a childwill almost certainly affect how one spends one's time,for instance missing work or giving up leisure activitiesin order to provide direct care, emotional support, ortransportation to the doctor. In addition, a growingbody of research suggests that illness in one familymember may also have important effects on the healthand happiness of other family members.

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In this issue, Stang and colleagues2 report the resultsof an interesting study that specifically analyzes thecost of illness from the "family perspective," that is, thesum total of healthcare and productivity costs forpatients their families, when at least 1 family membersuffers from migraine headaches. Using administrativedata that allowed the linking and aggregation ofhealthcare utilization for all family members, theauthors found that total unadjusted annual healthcarecosts for families with at least 1 migraineur were about70% higher ($11 669 vs $6838) than in a comparisonsample of matched families with no migraine sufferers.Outpatient and pharmacy costs for both migraine andnon-migraine-related healthcare and medications wereidentified as the main source of increased healthcarecosts for migraine families. The possible ripple effect ofmigraine in 1 family member on the health of others inthe family is suggested by the 25% increase in healthcarecosts that was found for the spouse or mother ofmigraine sufferers, although these unadjusted estimatesdid not account for significant differences in the characteristicsof migraine and non-migraine families. Whenadjusting for differences in household size, geographicregion, total number of comorbidities, and specificcomorbid conditions, families with a migraineurincurred approximately 36% higher total annual healthcarecosts compared to families without a migraineur,although we are unable to assess whether these additionaladjusted costs are due to healthcare for themigraine sufferer or other family members.

Given the complexity of family interactions, oneshould be cautious in drawing firm conclusions oncausality from this cross-sectional study. As the authorsnote, migraine headache may simply be an indicator ofother medical conditions that are the "true" cause ofthe increased healthcare costs in families with amigraineur. In addition, it is possible that greater levelsof illness in other family members led to increased ratesof migraine headaches in those at risk for the condition,rather than the migraine headaches in one family memberleading to greater illness and subsequent healthcareutilization in others.

Stang and colleagues make an important contributionby emphasizing the family perspective, as the impact ofillness on other family members is likely to grow inimportance in the coming decades. The aging of thebaby-boom generation will lead to an increasing numberof older individuals with chronic disease who will requiredaily help with disabilities. For instance, the prevalenceof Alzheimer's Disease (AD) in the United States is projectedto more than triple (from about 2.3 to 8.7 millioncases) in the next 50 years due to aging of the populationand a large increase in the "oldest-old" (age 85 or older)who are at highest risk for AD.^3,4 The time demands onfamilies of providing care to this increasing number ofolder individuals will be significant. We have used thenationally representative Health and Retirement Study⁵(http://hrsonline.isr.umich.edu) to estimate the time andsocietal costs associated with caregiving for variouschronic diseases.^6-10 The additional time that familiesspent providing care to older individuals with chronic illnessranged from about 4 hours per week for diabetesrelatedcare to more than 40 hours per week for severedementia. Using conservative estimates for the value ofan hour of a caregiver's time, the total annual societalcost for this caregiving time was approximately $60billion per year, including about $6 billion per year fordiabetes, $6 billion per year for stroke-related disabilities,$10 billion per year for depression, and $18 billionper year for dementia. Given the magnitude of the costof informal caregiving for chronic disease in older individuals,it is important to include estimates of thesecosts when evaluating the cost effectiveness of clinicaland policy interventions aimed at improving care forthese increasingly common conditions.

In addition to the significant time associated withproviding care to ill family members, a number of studieshave identified negative health effects associatedwith caregiving, especially among caregivers for elderlyindividuals with dementia and cancer. The negativehealth effects that have been shown associated withdementia caregiving include increased rates of depressionand anxiety,^11-13 and poorer self-rated health status.¹² These negative health effects may be due, in part,to poorer health behaviors (less physical activity, sleep,and rest) among dementia caregivers.^12,14,15 A recentstudy showed that individuals who reported "strain"associated with their caregiving had significantly higherrates of mortality over 4 years of follow-up.¹⁶

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However, the complex social interactions within families,in general, and families with an ill member, in particular,are made clear by a number of studies that havefound evidence for physical and mental healtheffects (for instance, lower rates of anxiety, depression,and mortality) associated with caregiving.^12,17-19 Potentialexplanations for these positive health outcomes associatedwith caregiving include stress reduction resultingfrom mutual affection, interdependence, and companionshipthat may protect individuals against the adverseconsequences of caregiving.^17,19 Future research aimedat identifying key variables that mediate when familycaregiving leads to positive rather than negative healthoutcomes for caregivers will be extremely important foraging baby-boomers, their families, and policy-makersaddressing the design of the Medicare and SocialSecurity programs.

In light of the findings of Stang and colleagues, as wellas other studies of the potential negative health effects ofcaregiving, what should healthcare providers do for thefamilies of their patients? At a minimum, physicians andother healthcare providers should be alert to theincreased risk for depression in the family caregivers oftheir patients, and take note of their mood duringhealthcare visits. The American Medical Association'sCaregiver Self-Assessment Tool ²⁰ may help identifydepressed caregivers who could benefit from referral tocaregiver support programs.²¹ Physicians should also beaware of public and private resources designed to provideinformation and support for caregivers, and makereferrals to such programs when appropriate. Nationalorganizations such as the National Alliance forCaregiving (www.caregiving.org) and the Alzheimer'sAssociation (www.alz.org) can provide caregivers withinformation on support programs in their local communities.While healthcare providers are already challengedto provide high-quality care in the limited time theyhave to see their patients, understanding the possibleripple effect of a patient's illness across a family andbroadening their focus to include an assessment of thewell-being of family caregivers, will likely pay dividendsboth for the caregivers themselves, as well as the patient.

From the Division of General Medicine, Department of Medicine; Department ofVeterans Affairs Center for Practice Management and Outcomes; Institute for SocialResearch; Patient Safety Enhancement Program; Society for General Internal Medicine,Collaborative Center for Research and Education in the Care of Older Adults, University ofMichigan, Ann Arbor, Michigan.

Dr. Langa was supported by a Career Development Award from the National Instituteon Aging (K08 AG19180), a New Investigator Research Grant from the Alzheimer’sAssociation, and a Paul Beeson Physician Faculty Scholars in Aging Research Award.

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Address correspondence to: Kenneth M. Langa, MD, PhD, Division of GeneralMedicine, University of Michigan Health System, 300 North Ingalls Building, Room 7E01,Box 0429, Ann Arbor, MI 48109-0429. E-mail: klanga@umich.edu.1. Tolstoy L. Kent LJ, Berberova N, eds. New York: ModernLibrary (Random House); 2000:3.2. Stang PE, Crown WH, Bizier R, Chatterton ML, White R. The family impactand costs of migraine. 2004;5:313-320.3. Brookmeyer R, Gray S, Kawas C. Projections of Alzheimer's disease in theUnited States and the public health impact of delaying disease onset. 1998;88:1337-1342.4. Knickman J, Snell E. The 2030 problem: caring for aging baby boomers. 2002;37:849-884.5. Juster FT, Suzman R. An overview of the Health and Retirement Study. 1995;30(suppl):S7-S56.6. Hayman J, Langa K, Kabeto M, et al. Estimating the cost of informal caregivingfor elderly patients with cancer. 2001;19:3219-3225.7. Langa K, Chernew M, Kabeto M, et al. National estimates of the quantity andcost of informal caregiving for the elderly with dementia. 2001;16:770-778.8. Langa K, Vijan S, Hayward R, et al. Informal caregiving for diabetes and diabeticcomplications among elderly americans. 2002;57B(3):S177-S186.9. Langa K, Fultz N, Saint S, Kabeto M, Herzog A. Informal caregiving time andcosts for urinary incontinence among elderly individuals in the United States. 2002;50:733-737.10. Hickenbottom S, Fendrick A, Kutcher J, Kabeto M, Katz S, Langa K. A nationalstudy of the quantity and cost of informal caregiving for the elderly with stroke. 2002;58:1754-1759.11. Schulz R, O'Brien AT , Fleissner K. Psychiatric and physical morbidity effectsof dementia caregiving: prevalence correlates, and causes. 1995;35:771-791.12. Schulz R, Newsom J, Mittelmark M, Burton L, Hirsch C, Jackson S. Healtheffects of caregiving: the caregiver health effects study: an ancillary study of thecardiovascular health study. 1997;19:110-116.13. Covinsky KE, Newcomer R, Fox P, et al. Patient and caregiver characteristicsassociated with depression in caregivers of patients with dementia. 2003;18:1006-1014.14. Burton L, Newsom J, Schulz R, Hirsch C, German P. Preventative healthbehaviors among spousal caregivers. 1997;26:162-169.15. Ory M, Lee J, Tennstedt S, Schulz R. The extent and impact of dementia care:unique challenges experienced by family caregivers. In: Schulz R, ed. New York: Springer Publishing;2000;1-32.16. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiverhealth effects study. 1999;262:2215-2219.17. Beach S, Schulz R, Yee J, Jackson S. Negative and positive health effects ofcaring for a disabled spouse: longitudinal findings from the caregiver health effectsstudy. 2000;15:259-271.18. Krause N, Shaw B. Giving social support to others, socioeconomic status, andchanges in self-esteem in late life. . 2000;55:S323-S333.19. Brown S, Nesse R, Vinokur A, Smith D. Providing social support may be morebeneficial than receiving it: Results from a prospective study of mortality. 2003;14:320-327.20. American Medical Association. Caregiver Self-Assessment Tool. 2002.Available at: http://www.ama-assn.org/ama/pub/category/5037.html. Accessed April9, 2004. 21. Levine C. Depression in caregivers of patients with dementia: A greater role forphysicians. 2003;18:1058-1059.

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