AARP Public Policy Institute INSIGHT on the Issues Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions Susan C. Reinhard AARP Public Policy Institute Sarah Samis and Carol Levine United Hospital Fund Produced by the AARP Public Policy Institute and the United Hospital Fund with support from the John A. Hartford Foundation Family caregiving is difficult and stressful. Providing care and support to people with cognitive or behavioral health conditions is doubly challenging. This paper reports on results from a national survey showing that caregivers of family members with challenging behaviors were more likely to perform more than one medical/nursing task, such as managing medications, and often do so with resistance from the person they are trying to help. Yet they receive little or no instruction or guidance on how to do this important work. This analysis offers recommendations for assisting family caregivers who play this dual role. Overview with activities of daily life, such as bathing or eating. More than 5 million people in the United States are living with cognitive A large and growing literature addresses health issues such as Alzheimer’s the challenges facing family caregivers disease or another form of dementia,1 of people with cognitive or behavioral and the numbers are growing as the conditions. Much of it,3 however, focuses population ages. Behavioral health on management of the specific condition, conditions are another pressing public with a nod to caregivers’ having to also health problem. In 2012, an estimated take care of themselves, rather than on 9.6 million adults age 18 or older in the special challenges of providing care the United States had a serious mental for these family members. illness in the past year. As many as 20 percent of adults over 50 who live Methodology in the community have depression, and approximately 11 percent suffer This Insight on the Issues looks broadly from anxiety disorders.2 Providing care at the effect of cognitive impairment for people with these conditions can and behavioral health conditions be particularly challenging. Family on caregiving. It also examines the members with cognitive or behavioral cumulative effect on caregivers of health issues may, for example, resist providing care that involves medical/ taking medications or reject assistance nursing tasks in addition to other Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions caregiving responsibilities. The data they cared for had cognitive impairments are derived from a national survey (defined as memory problems, dementia, of a representative sample of family or Alzheimer’s disease) or behavioral caregivers conducted by the AARP health conditions (such as depression, Public Policy Institute and the United anxiety, or mental illness). These Hospital Fund (UHF). The full report caregivers were similar to caregivers of and the methodology for the entire family members without challenging survey panel, Home Alone: Family behaviors in age, socioeconomic status, Caregivers Providing Complex Chronic and education level (see table 1.) For the Care, can be found at http://www.aarp most part, they were female (63 percent), .org/homealone or at http://www.uhfnyc 50 to 79 years old (63 percent), married .org/publications. (67 percent), and without college degrees (70 percent). One-half (51 In the full survey, nearly one-half percent) had annual incomes less than (46 percent) of the 1,677 caregivers $50,000. performed medical/nursing tasks (such as medication management, wound care, Family caregivers of people with and monitoring of medical equipment) challenging behaviors were more in addition to assisting with activities of likely to be adult children (43 percent), daily living (ADLs, such as bathing and compared to caregivers of people without dressing) and instrumental activities of challenging behaviors (32 percent). They daily living (IADLs, such as shopping had also provided care for longer periods and transportation). Of this group, about of time. About one-half (53 percent) had one-half (48 percent) provided care been caring for their family member for for a family member with at least one at least 3 years, compared to 37 percent cognitive or behavioral health condition. of those caring for family members This analysis examines the caregiving without challenging behaviors. experience of family members of people with cognitive conditions, behavioral How Are Care Recipients with health conditions, or both, collectively Challenging Behaviors Different? called challenging behaviors. The study The survey showed no major then compares the experience of these demographic differences between care family caregivers with that of family recipients with challenging behaviors caregivers performing medical/nursing and those without such conditions. Care tasks for people without challenging recipients in both groups tended to be behaviors. female (62 percent and 56 percent, This is the third in a series of further respectively) and nearly half live in analyses of the Home Alone survey data. the same household as the caregiver Two companion AARP/UHF reports (49 percent and 46 percent, respectively). compared employed and nonemployed The care recipients with challenging caregivers, as well as spouses and behaviors were more likely to be older nonspousal caregivers. These reports are than 65 (72 percent and 66 percent, available on the websites previously listed. respectively). As shown in table 2, most of the care Key Findings recipients with challenging behaviors (71 percent) were cognitively impaired. Family Caregivers of People with Twenty-eight percent had behavioral Challenging Behaviors health conditions without any cognitive In the Home Alone survey, family impairment, 46 percent had cognitive caregivers reported whether the person impairment without behavioral health 2 Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions Table 1 Demographics of Family Caregivers (percent) All Challenging No Challenging All MN* Behaviors Behaviors N = 777 N = 374 N = 403 (% total) (% total) (% total) Gender Male 38 37 39 Female 62 63 61 Age 18–34 14 14 14 35–49 19 21 16 50–64 40 42 38 65–79 24 21 27 80+ 3 2 4 Mean 54 53 55 Median 57 55 58 Race White 71 71 72 Black 12 12 11 Hispanic 9 3 3 Other 8 14 13 Marital Status Married 68 67 69 Not married 32 33 31 Employment Status Employed 46 44 47 Not employed 54 56 53 Education < High school 10 10 9 High school 32 30 33 Some college 29 30 29 Bachelor’s degree or higher 29 29 29 Household Income <$25,000 23 26 20 $25,000–$49,000 26 25 28 $50,000–$74,000 18 18 18 $75,000–$99,000 13 12 14 $100,000–$124,000 7 7 7 ≥ $125,000 12 12 12 (continued) 3 Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions Table 1 Demographics of Family Caregivers (percent) (continued) All Challenging No Challenging All MN* Behaviors Behaviors N = 777 N = 374 N = 403 (% total) (% total) (% total) Relationship with Care Recipient Child 37 43 32 Other relative 23 23 23 Spouse or partner 28 21 34 Friend or neighbor 12 13 11 Period of Time Providing Care < 1 year 31 21 40 1–2 years 24 26 23 3–5 years 19 23 15 > 5 years 26 30 22 Note: BH = behavioral health. Percentages may not add up to 100 because of rounding. * All MN refers to all caregivers who performed medical/nursing tasks. conditions, and 26 percent had both. without; diabetes affected 28 percent of Depression was the most common persons with challenging behaviors versus behavioral health problem, affecting 22 percent of those without. 92 percent of people with behavioral health conditions. Serious mental illness, Care recipients with both cognitive and such as schizophrenia, was less common, behavioral health conditions had the affecting 13 percent of care recipients highest burden of illness, with the highest with behavioral health issues. rates of the top four chronic conditions: stroke/hypertension (68 percent), Larger differences emerged when looking musculoskeletal (58 percent), cardiac at the health of the two groups: people disease (45 percent), and diabetes (32 with challenging behaviors were generally percent). They also had the highest rates of sicker than their counterparts. Nearly 9 in sensory impairment: hearing problems (41 10 people with challenging behaviors also percent) and vision problems (40 percent). had chronic physical health diagnoses, sometimes at higher rates than those Given this high burden of illness, care without cognitive or behavioral conditions. recipients with both cognitive and More than one-half (55 percent) of behavioral health conditions were the people with challenging behaviors had most likely to use acute care services. a history of stroke or hypertension, Among those with challenging behaviors, compared to 34 percent of those without this subgroup was the most likely to use those behaviors. Forty-five percent had ambulatory surgery services, to visit an musculoskeletal problems, such as arthritis emergency department, and to be admitted or osteoporosis, compared to 32 percent of as an inpatient in the previous year (see their counterparts. Cardiac disease affected table 3). Those with behavioral conditions 34 percent of those with challenging but no cognitive impairment also had high behaviors, compared to 24 percent of those rates of acute care use; 26 percent had at 4 Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions Table 2 Care Recipients’ Chronic Conditions (percent) All No Challenging Challenging Cognitive Behaviors Behaviors Cognitive BH + BH N = 374 N = 403 N = 171 N = 107 N = 96 (% total) (% total) (% total) (% total) (% total) Stroke, hypertension 55 34 51 50 68 Musculoskeletal (arthritis, 45 32 40 40 58 osteoporosis, etc.) Cardiac disease (heart attack, angina, 34 24 29 34 45 congestive heart failure, etc.) Diabetes 28 22 25 31 32 Cancer 9 22 9 7 10 Lung disease 19 13 11 20 33 Kidney disease 9 9 9 7 11 Movement disorder 6 3 7 4 6 (Parkinson’s, etc.) Trauma 1 4 0 3 1 Physical Health Neurological disorders (ALS, 2 3 1 4 1 epilepsy, Epstein- Barr, etc.) Congenital conditions (CP, 1 2 0 3 1 autism, Down, etc.) Traumatic brain 3 1 1 3 5 injury Gastrointestinal 1 3 0 2 3 problems Paralysis 3 2 2 6 2 Multiple sclerosis 1 2 1 2 1 Transplant (kidney, 0 1 0 0 0 liver, stem cell) HIV/AIDS 1 0 0 2 0 Memory problems, Cognitive including dementia 71 0 100 0 100 or Alzheimer's Depression or Behavioral anxiety 52 0 0 92 99 Health Mental illness 8 0 0 13 17 Hearing problems 32 14 34 20 41 Sensory Vision problems 29 15 25 28 40 Note: ALS = amyotrophic lateral sclerosis (Lou Gehrig’s Disease), BH = behavioral health, CP = cerebral palsy, HIV/AIDS = human immunodeficiency virus/acquired immune deficiency syndrome. 5 Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions least three emergency department visits ADLs, and IADLs. Moreover, 57 percent in the previous year, a rate similar to that of these caregivers were the primary care of care recipients with both cognitive and coordinator for their family member. behavioral health conditions (27 percent). These findings are consistent with Caregivers of people with challenging previous research showing that adults with behaviors performed the same range of behavioral health conditions have greater medical/nursing tasks as the full Home emergency department use than adults Alone survey panel, with medication without these conditions.4 management, help with assistive mobility devices, and preparation of What Kinds of Care Do Family food for special diets being the three Caregivers Provide? most commonly performed. Although Almost all caregivers of family members caregivers were more likely to assist with challenging behaviors—more than with medication management, they were 96 percent—provided both medical/ somewhat less likely to perform wound nursing and nonmedical support. Nearly care than caregivers of those without two-thirds of these caregivers did all cognitive or behavioral conditions (see three types of tasks: medical/nursing, table 4). Table 3 Care Recipients’ Health Service Use within the Past 12 Months (percent) All No Challenging Challenging Cognitive + Behaviors Behaviors Cognitive BH BH N = 374 N = 403 N = 171 N = 107 N = 96 (% total) (% total) (% total) (% total) (% total) Ambulatory Surgery None 72 61 78 71 65 1 18 24 15 18 23 2 6 10 4 8 8 3+ 3 5 3 3 4 Emergency Department None 31 30 40 26 21 1 23 27 22 19 31 2 25 21 25 28 21 3+ 21 21 14 26 27 No response 0 1 0 1 0 Inpatient None 43 35 49 37 38 1 22 25 17 25 27 2 19 19 22 17 16 3+ 16 20 12 20 20 No response 1 1 1 1 0 Note: BH = behavioral health. Percentages may not add up to 100 because of rounding. 6 Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions Table 4 Family Caregivers Performing Medical/Nursing Tasks by Cognitive and Behavioral Conditions (percent) All No Challenging Challenging Cognitive + Behaviors Behaviors Cognitive BH BH N = 374 N = 403 N = 171 N = 107 N = 96 (% total) (% total) (% total) (% total) (% total) Manage medications, including IV and 84 72 86 81 85 injections Help with assistive devices for mobility 41 44 44 29 50 like canes or walkers Prepare food for 42 40 35 45 51 special diets Do wound care (bandages, ointments, prescription drugs for skin care, or to treat 32 39 29 35 33 pressure sores or post-surgical wounds) and ostomy care Use meters/monitors (thermometer, glucometer, stethoscope, weight scales, blood pressure 37 27 32 30 52 monitors, oxygen saturation monitors), administer test kits, use telehealth equipment Use incontinence equipment, supplies, 29 21 31 16 41 administer enemas Operate durable medical equipment (hospital beds, lifts, wheelchairs, scooters, 21 21 21 15 26 toilet or bath chairs, geri-chairs, for example) Operate medical equipment (mechanical ventilators, oxygen, tube feeding 14 15 10 15 20 equipment, home dialysis equipment, suctioning equipment) Note: BH = behavioral health. 7 Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions These caregivers also were more likely What Medical/Nursing Tasks Did to assist with more than one medical/ Family Caregivers Find Hard? nursing task. Close to two-thirds (65 percent) performed more than two Family caregivers found some medical/ medical/nursing tasks, compared to nursing tasks harder to perform than slightly more than one-half (53 percent) others. When asked which two tasks of caregivers for family members without they found hardest, caregivers of family cognitive or behavioral health conditions. members with challenging behaviors And they were more likely to use meters, identified tasks at similar rates as monitors, or telehealth equipment; and caregivers of people without these to manage incontinence. These findings conditions. More than one-half said the are consistent with the higher rates of hardest things they did were helping chronic illness and the greatest use of with incontinence, wound care, and acute care services among care recipients medications and preparing food for with challenging behaviors. special diets (see figure 1). Figure 1 Medical/Nursing Tasks That Family Caregivers Find Hard to Do Use incontinence equipment, supplies, administer enemas Perform wound care (bandages, ointments, prescription drugs for skin care or to treat pressure sores or postsurgical wounds) and ostomy care Manage medications, including IV use and injections Prepare food for special diets Operate medical equipment (hospital beds, lifts, wheelchairs, scooters, toilet or bath chairs, geri-chairs, for example) Help with assistive devices for mobility, like canes or walkers All Challenging Behaviors 0 10 20 30 40 50 60 70 80 No Challenging Behaviors Percent 8 Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions Medication Management: A Common Those who cared for people with but Difficult Task challenging behaviors and found The vast majority (84 percent) of medication management difficult caregivers of family members with were more than 2.5 times as likely to challenging behaviors assisted with say that it was hard because of their medication management, a task that family member’s lack of cooperation may have been more challenging (34 percent, versus 13 percent for for them than for other caregivers, caregivers of family members without in part because it was more likely to these conditions). Caregivers of involve administering non-pill forms of people with challenging behaviors medications. These caregivers were also also found medication management more likely to ask questions or look up difficult because it was time-consuming information and to monitor their family (44 percent) and because they were member for potential drug side effects afraid of making a mistake or causing (see figure 2). harm (30 percent). Figure 2 Caregiver Medication Tasks Order, pick up, and/or pay for medications Give my family member the pills or other drugs to take at the right time; prepare a pill box that my family member can use independently Ask doctor, nurse, or pharmacist questions, or look up medications on the Internet to see risks and benefits Monitor potential side effects of medications Perform other forms of medication administration (injections, inhalers or nebulizers, eye/ear drops, infusion pump) All Challenging Behaviors 0 20 40 60 80 100 No Challenging Behaviors Percent 9 Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions When asked what would make managing behaviors). A higher percentage of these medications easier, caregivers of people caregivers are an adult child of the care with challenging behaviors were more recipient, which may mean they have likely to say that “more cooperation more interactions with siblings and other by their family member” (31 percent) relatives. or “having another person to assist” (34 percent) would be helpful, compared Caregivers of family members with to caregivers of family members challenging behaviors who performed without these conditions (13 percent and medical/nursing tasks almost always 24 percent, respectively). Two-thirds reported higher levels of stress than (66 percent) of these caregivers reported caregivers of people without such that they had little or no training and behaviors who also performed medical/ learned how to administer at least some nursing tasks. Sixty-one percent said medications on their own. they “sometimes to always” felt stressed, between their caregiving responsibilities Little Help at Home and trying to meet other work or family obligations (see figure 3). Nearly Most care recipients with challenging one-half (47 percent) reported feeling behaviors (65 percent) did not receive depressed within the past two weeks, home visits by health care professionals, compared to one-third (34 percent) of and nearly a third (29 percent) of their their counterparts (figure 4). Forty-five caregivers did not receive any additional percent said they felt strained when help from nonmedical professionals in around their family member, while caring for their family member at home. only one-quarter of their counterparts said they felt this way. These results Caregivers of family members with suggest some of the challenges of caring challenging behaviors were more likely for a family member who may behave to have help from a home care aide unpredictably or resist their caregiver’s (28 percent) than those caring for family help. members without these conditions (19 percent). Within this group, But Family Caregiving Helps People caregivers of family members with Avoid Nursing Homes cognitive conditions got help from home care aides at higher rates than those On a positive note, many family caring for people with only behavioral caregivers taking care of people with health conditions. The advanced cognitive or behavioral health conditions age of care recipients with cognitive reported that they believed that their impairment may partially explain their efforts were valuable. Sixty percent of people caring for family members with greater use of home care aides. challenging behaviors who performed Providing Complex Chronic Care Is medical/nursing tasks believed that Often Not a Choice and Is Stressful their caregiving allowed their family member to avoid nursing home Most caregivers of family members placement, compared to 43 percent of with challenging behaviors (60 percent) medical/nursing caregivers of people did not feel that they had a choice in without these conditions. Moreover, performing medical/nursing tasks for caregivers who performed multiple their family member. These caregivers medical/nursing tasks or whose family were more likely to report pressure members had several chronic conditions from other family members (17 percent, were even more likely to say that their compared to 9 percent for caregivers of family caregiving activities helped keep family members without challenging their family member from moving to a 10 Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions Figure 3 Family Caregivers’ Reported Levels of Stress (percent feeling that way “sometimes to always”) 80 70 60 50 Percent 40 30 20 10 0 Stressed Between Care and Have No Time To Self Strained Around Family Uncertain About What to do Other Responsibilities Member About Family Member All Challenging Behavior No Challenging Behavior Figure 4 Negative Impacts on Family Caregivers’ Quality of Life 50 40 30 Percent 20 10 0 Depressed in Constantly Watching for Fair/Poor Health Stress of Talking to Many Worry about Employment Past 2 Weeks Something to Go Wrong Health Care Professionals Making Mistakes All Challenging Behavior No Challenging Behavior 11 Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions nursing home. Nearly 8 in 10 caregivers required, as well as the health care who performed five or more medical/ needs of the caregivers. nursing tasks gave this response, as did ■■ Special efforts are needed to set nearly 7 in 10 caregivers whose family up respite and adult day care members had five or more chronic programs for caregivers whose conditions. family members have both complex chronic illnesses and cognitive Recommendations and behavioral conditions. The programs should be tailored to the Family caregivers work hard to ensure specific needs of these caregivers that their family members maintain who may be most in need of a break dignity and independence. This but reluctant to leave their family analysis demonstrates that caring for member in the care of others. a person with cognitive or behavioral ■■ Family caregivers can benefit from health problems, or both, is especially challenging because these conditions evidence-based training that helps increase the difficulty of doing not only them understand what the sources the ordinary tasks of caregiving but of challenging behaviors are, how to also the complex medical/nursing tasks respond to challenges appropriately, that often are required. These are tasks and how to maintain their own health that all caregivers, even those whose and well-being. family members do not have cognitive ■■ Health care providers can benefit or behavioral health conditions, find from training in recognizing signs of difficult. The analysis also reveals that cognitive impairment and behavioral people with cognitive or behavioral conditions and guidance on health conditions (especially those working collaboratively with family with both) also suffer from a range caregivers when the care recipient is of physical ailments that add to the hospitalized.5 burden of care. In addition, the findings ■■ Policy makers should ensure show that caregivers of people with that educational and supportive challenging behavioral conditions are programs related to Alzheimer’s more likely to suffer from stress. disease, behavioral health conditions, or mental illness include Much more has to be done for family support and training for family caregivers in these particularly caregivers on managing care of the difficult situations. Here are five whole person, not just the specific recommendations: condition. ■■ Behavioral health programs must All caregivers need training and be better integrated with medical support; caregivers who are responsible care so that care is truly person- and for people with challenging behaviors family-centered. are among those most in need of ■■ Programs assistance. supporting caregivers whose family members have Acknowledgments cognitive or behavioral health conditions should include The authors gratefully thank the John assessments that examine the impact A. Hartford Foundation and the AARP of these conditions on the full Foundation for their generous support spectrum of caregiving activities, of this project. This report is part of a including any medical/nursing tasks larger initiative, Professional Partners 12 Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions Supporting Family Caregivers, which contributions to this paper and Miles seeks a better understanding of what Finley and Andrea Lucas for editorial family caregivers are expected to do and assistance. We are also grateful to Jordan how health care professionals can better Green, Ari Houser, Lynn Feinberg, and support them in their work. Rita Choula of the AARP Public Policy Institute for their assistance and support INSIGHT on the Issues The authors wish to thank David Gould throughout the ongoing partnership and Deborah Halper of the United between the AARP Public Policy Hospital Fund for their substantive Institute and the United Hospital Fund. Endnotes 1 See http://www.cdc.gov/features/alzheimers for more information. 2 “Mental and Behavioral Health of Older Americans,” American Psychological Association, 2014, https://www.apa.org/about/gr/issues/aging/mental-health.aspx. 3 “Alzheimer’s Disease Facts and Figures,” Alzheimer’s Association, 2014, http://www.alz.org/ downloads/Facts_Figures_2014.pdf; T. Aboulafia-Brakha, D. Suchecki, F. Gouveia-Paulino, R. Nitrini, and R. Ptak, “Cognitive-Behavioural Group Therapy Improves a Psychophysiological Marker of Stress in Caregivers of Patients with Alzheimer’s Disease,” Aging and Mental Health, no. 18 (6): 801–08. 4 National Survey on Drug Use and Health, “Physical Health Conditions among Adults with Mental Illness,” news release, April 5, 2012, http://www.samhsa.gov/data/2k12/NSDUH103/ SR103AdultsAMI2012.pdf. 5 See “Reducing the Stress of Hospitalization for Patients with Dementia and Their Family Caregivers: A Provider’s Guide,” Next Step in Care, http://www.nextstepincare.org/Provider_Home/Hospitalization_ and_Dementia. Insight on the Issues 93, August 2014 Written by Susan C. Reinhard, Sarah Samis, and Carol Levine AARP Public Policy Institute 601 E Street NW, Washington, DC 20049 www.aarp.org/ppi 202-434-3890, ppi@aarp.org © 2014, AARP. Reprinting with permission only. AARP Public Policy Institute 13