Home Alone: Family Caregivers Providing Complex Chronic Care Title text here Susan Reinhard, RN, PhD AARP Public Policy Institute Katz Policy Lecture Benjamin Rose Institute on Aging September 28, 2012
Objectives Describe the "new normal" for family caregivers. Debate what ADLs and IADLs tell us about the work of family caregiving, and the new focus on medical/nursing tasks Discuss a "call to action" to meet the challenges of family caregiving. 2
Family Caregiver Broad Definition Any relative, partner, friend or neighbor who has a significant relationship with, and who provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition. In Person-Centered Planning, if the consumer includes a family member in the plan for HCBS, the family caregiver needs to be seriously considered 3
Valuing the Invaluable In 2009, about 42.1 million family caregivers in the U.S. provided care to an adult with limitations in daily activities at any given point in time The estimated economic value of their unpaid contributions was about $450 billion in 2009 from an estimated $375 billion in 2007 4
How Much is $450 Billion? $600 $500 $400 $509 $450 In Billions, 2009 Data $300 $361 $200 $203 $100 $0 Total Medicare Family Caregiving Total Medicaid Total Formal LTSS 5
Family Caregiving in the Old Days 6
Family Caregiving The New Normal 7
What s Different About Caregiving Now Than in the Past? Serve as both care coordinators and service providers o Navigating an increasingly fragmented and confusing health care and LTSS delivery system Monitor chronic and sometimes acute medical conditions as well as provide LTSS at home o Impact of shorter hospital stays; discharging sicker and quicker 8
Family Caregivers Fill Big Gaps in Health Care and LTSS Family members are part of the delivery of health care o Influencing health care decisions, treatment, and outcome o Serving as continuity connectors and the eyes and ears -Especially for persons with dementia o Assuming a health management role in the home 20-year trends in family caregiving and LTSS show that: o Until the mid-1990s, family care was augmented by some paid help o That trend has reversed and more families are carrying the load alone o Family caregivers are assisting older relatives/friends with higher rates of disability than in the past Source: Trends in Disability, Community Living, and Caregiving: Analysis of Data from the National Long-Term Care Survey by: Donald L. Redfoot, Ari Houser, Mary Jo Gibson, AARP Public Policy Institute, September 2010 9
Families Are Deeply Worried For many families in the midst of caregiving, there is deep worry and quality of care and quality of life o Families don t know who to call or where to go, to get the right kind of affordable help when they need it Deep frustration and a sense of hopelessness about our health care and LTSS system when you are going through it 10
In Their Own Words Overall, I am fearful of being able to handle all of her needs. I am fearful that she could fall again. I am fearful that she could get hurt again and that I won t be able to help her. More than anything it s the constant fear. -Spanish-speaking Latina Caregiver, Los Angeles Source: AARP Public Policy Institute Focus Groups with Diverse Family Caregivers, Los Angeles, 2011 11
What do ADLs and IADLs Tell Us about the Work of Family Caregiving? Katz started it all in the 1950s at Benjamin Rose with Activities of Daily Living (ADLs) o Designed to measure course of recovery in older adults who had hip fractures o Published in 1963 Earliest measure of Instrumental Activities of Daily Living (IADL) published in 1969 o o Designed to measure aspects of independent living Included money management and medications from the perspectives of the 1960s Over 40 different clinical and survey indexes of functional status now 12
What do ADLs and IADLs Tell Us about the Work of Family Caregiving? Researchers in the new field of family caregiving in the 1980s o Applied ADLs and IADL scales to family caregivers o Assumption that what caregivers provide is the mirror image of the functional limitations of the care recipient o Although there is intuitive appeal as an indicator of care demands, ADLs and IADLs fail to consider many aspects of the work of family caregiving 13
What do ADLs and IADLs Tell Us about the Work of Family Caregiving? ADL and IADL scales moved into public policy in the 1980s o 1982 National Long Term Care Survey of Medicare Beneficiaries, caregiver supplement o Now, application of the care recipient s ADL/IADL scores to eligibility for both private and publicly financed support for family caregivers -Respite care -LTC Insurance payment for personal care 14
Some Problems in Applying ADLs and IADLs to the Work of Family Caregiving? Contextual issues some examples o Does the care recipient weigh 300 pounds? Makes a difference in all ADLs o Does the care recipient have dementia? o Does the care recipient resist, like bathing and dressing? o Does the need for standby assistance count as a scorable limitation? 15
Some Problems in Applying ADLs and IADLs to the Work of Family Caregiving? Contextual issues some examples o Does the care have to be provided at a specific time every day? o Is the care considered intimate, even taboo o Is the care tiring, difficult or upsetting (Poulshock & Deimling, Benjamin Rose, 1984) o Does the family caregiver need to shop because the person lives on the third floor without an elevator but could have been able to shop if she lived in accessible housing? Is this an IADL limitation for the care recipient? 16
What is Missing or Needs to Move into Another Measure? The realities of 2012 for family caregivers call for a new job description not imagined 50 years ago when Katz and Lawton developed ADLs and IADLs Few pills in 1960, never mind injections and IVs o Now Polypharmacy o Crushing pills, some with food, some without food o Many side effects, adverse reactions leading to hospitalizations o Knowledge and monitoring very important and worrisome Is helping with medications really an IADL? 17
New Research Home Alone: Family Caregivers Providing Complex Chronic Care Partnership between the AARP Public Policy Institute and the United Hospital Fund Funded by The John A. Hartford Foundation We ask family caregivers to do things that would make first-year nursing students shudder ----Susan C. Reinhard 18
New Research on Medical/Nursing Tasks Part of a larger initiative, Professional Partners Supporting Family Caregivers, which seeks a better understanding of what family caregivers are expected to do and how health care professionals can better support them in their work. Conducted in partnership with Carol Levine and colleagues at the United Hospital Fund Released next week and presented for the first time at the Benjamin Rose Institute for Aging 19
Methodology and Sample Survey questions were based on a review of other national family caregiver surveys, literature on caregiver tasks, review of tasks delegated by registered nurses to unlicensed direct care workers and the authors experiences interviewing family caregivers and health care professionals. Knowledge Networks (KN), a survey research firm, was engaged to field the survey. Initial screening question: In the past 12 months, have you provided unpaid care to a relative, partner, or friend age 18 years or older to help them take care of themselves because of a chronic illness or disability? 20
Methodology and Sample The respondents were then asked Beyond emotional support and companionship, caregiving may include many different types of specific help. Did you help with: o Personal care tasks (such as bathing, dressing, grooming, eating, moving from bed to chair, or going to the toilet); o Household tasks (such as shopping, managing personal finances, arranging for outside services, or providing transportation); or o Medical or nursing tasks (such as managing medications, changing dressing on wounds, monitoring equipment like oxygen tanks)? 21
Almost Half of Family Caregivers Perform Medical/Nursing Tasks Distribution of 1,677 Caregivers by Task: Medical/Nursing, ADL, IADL Tasks M/N only 30 M/N and ADL/IADL 747 ADL/IADL only, 900 ADL/IADL only 900 M/N and ADL/IADL 747 M/N only 30 Columns do not sum to 100 percent because respondents could select multiple options 22
Almost Half of Family Caregivers Perform Medical/Nursing Tasks Distribution of 747 Caregivers Performing Medical/Nursing, ADL, IADL Tasks M/N Tasks + ADL, 35 M/N Tasks + IADL, 211 M/N Tasks+ ADL + IADL, 501 M/N + ADL 35 M/N + ADL + IADL 501 M/N + IADL 211 23
Almost Half of Family Caregivers Perform Medical/Nursing Tasks Distribution of 900 Caregivers Performing ADL, IADL Tasks ADL, 46 IADL + ADL, 249 IADL, 605 ADL 46 IADL + ADL 249 IADL 605 24
Family Caregivers Find Some Tasks More Difficult than Others Some tasks not generally considered difficult by professionals like meal preparation were hard to do because of special diets and feeding problems. Less surprisingly, half of family caregivers who operate mechanical equipment, such as mechanical ventilators, feeding tubes, or home dialysis equipment, found this work hard to do. And two out of three (67 percent) of those who managed incontinence (as distinct from helping a person to the toilet) found this very hard to do. 25
So Many Meds, So Little Training Three out of four family caregivers who provided medical/nursing tasks were managing medications, including administering intravenous fluids and injections. Almost half were administering 5 to 9 prescription medications a day; one in five was helping with ten or more prescription medications a day. Most of these family caregivers learned how to manage at least some of the medications on their own. I constantly monitor drugs -Family Caregiver Many found this work difficult because it was timeconsuming and inconvenient, they were afraid of making a mistake, and/or the care recipient would not cooperate. 26
Wound Care is Very Challenging and Training is Needed More than a third (35%) of family caregivers who provided medical/nursing tasks reported doing wound care. While fewer caregivers performed wound care tasks than medication management, a greater percentage of them (66%) identified it as difficult and many (38%) would like more training. Of these caregivers, close to half (47%) were afraid of making a mistake and/or harming their family member. 27
Family Caregivers Feel Pressured 28
Family Caregivers are the Coordinators Family caregivers of chronically ill persons frequently serve as care coordinators. Family caregivers who performed medical/nursing tasks were more than twice as likely to act as care coordinators as those who mainly provided personal care. 29
Few Home Visits by Health Care Professionals Type of Health Care Providers Making Home Visits ALL M/N Tasks ADL/IADL Nurse 70 74 66 Physical Therapist 33 34 31 Licensed Social Worker 28 28 27 Occupation Therapy 14 16 11 Doctor 13 16 11 Respiratory Therapist 6 8 4 Other 2 2 3 Sixty-nine percent of the care recipients did not have any home visits by health care professionals. Of those who did have home visits, roughly seven in ten were visited by a nurse 30
The More tasks, the Greater the Consequences for Family Caregiver Well Being Family caregivers who performed five or more medical/nursing tasks were most likely to believe they are making an important contribution. Compared to those who performed one or two tasks, they were also most likely to report feeling stressed and worried about making a mistake. More than half reported feeling down, depressed or hopeless in the last two weeks More than a third reported fair or poor health. In the last year and a half I have developed high blood pressure, diabetes, and weight gain so now I have sleep apnea -Family Caregiver 31
These Caregivers Help Avoid Institutionalization The more medical/nursing tasks family caregivers perform, the more likely they reported helping the care recipient avoid nursing home placement. Three out of four family caregivers who provided assistance with five or more medical/nursing tasks reported they were helping their family member avoid institutionalization. The same was true for those caring for people with five or more chronic conditions. Those who had some training were more likely to say they were able to help avoid nursing home placement. 32
Recommendations The report findings highlight an urgent need for both individual and collective action. This effort requires the coordinated efforts of all sectors hospitals, home care agencies, community agencies, nursing homes, hospices, and physician and other clinician practices. Based on the findings in this report, ten recommendations for action were made. 1. A consensus-building body should revisit measures of activities of daily living (ADLs) and instrumental activities of daily living (IADLs). 33
Recommendations 2. Individual health care professionals must fundamentally reassess and restructure the way they interact with family caregivers in daily practice. 3. Health care provider organizations (hospitals, rehabilitation centers, home care agencies, nursing homes, and hospices) must support health care professionals in their efforts through adequate resources and strong leadership. 34
Recommendations 4. Professional organizations should lead and support professionals in their efforts to improve communication and training for family caregivers. 5. Leaders in medical, nursing, social work, allied health professional training, and continuing education should examine their curricula to determine where and how the importance of acknowledging, supporting, and training family caregivers can be added or strengthened. 6. Accrediting and standard-setting organizations must take seriously their evaluation of how well institutions incorporate family caregiver needs and require corrective steps to address deficiencies. 35
Recommendations 7. Federal policymakers should proactively consider family caregivers in developing new models of care that focus on coordination and quality improvement. 8. State policymakers should proactively consider family caregivers in funding and policy development. 9. Caregiver advocacy and support organizations should include in their service and policy agendas resources that address the needs of family caregivers who have taken on the triple burden of personal care, household chores, and medical/nursing tasks 36
Recommendations 10. Academic and government researchers should conduct further studies to understand medical/nursing tasks performed by different types of family caregivers and their needs for training and support. We encourage further research in these areas: Diverse populations, particularly ethnic minorities, family caregivers whose primary language is not English, and other groups whose experiences may differ from a national sample Spousal caregivers, who are likely to be of the same age as the care recipient and at risk for chronic health conditions Family caregivers of people with cognitive or behavioral conditions that may make performing medical/nursing tasks more difficult 37
Caregiving Gains Recognition Among Policymakers, Health Professionals AARP Public Policy Institute Initiatives LTSS Scorecard: Framework for High-performing LTSS System o Among four other key dimensions, includes recognition of and support for family caregivers as a key component of state systems of LTSS o Funding from The Commonwealth Fund and The SCAN Foundation 38
AARP Public Policy Institute Initiatives Long Term Services and Supports Scorecard: Framework for Highperforming LTSS System o Support for Family Caregivers includes recognition of and support for family caregivers as a key component of state systems of LTSS Support for Family Caregivers: o Paid and unpaid family medical leave, paid sick days, protection against caregiver discrimination in the workplace, caregiver assessment o Registered nurses provide delegation of health maintenance tasks to non-family members. 39
Take Aways Investing in better recognition of and support for caregiving families can reduce higher expenditures later Families are increasingly charged with the responsibility of performing all levels of health-related tasks for those they care for often without the training and support from professionals that they need Family caregivers need more recognition and support from professionals across settings 40
Questions? Susan Reinhard sreinhard@aarp.org 202-434-3872 41