Family Caregivers’ Experiences With Health Care Workers in the Care of Older Adults With Activity Limitations | Geriatrics | JAMA Network Open | JAMA Network
[Skip to Navigation]
Sign In
Individual Sign In
Create an Account
Institutional Sign In
OpenAthens Shibboleth
[Skip to Navigation Landing]
Figure 1.  Family and Unpaid Caregivers’ Experiences With Older Adults’ Health Care Workers
Family and Unpaid Caregivers’ Experiences With Older Adults’ Health Care Workers

Estimates are weighted and reflect the experiences of family and unpaid caregivers of being listened to, being asked about understanding of treatments, and being asked about needing help always, usually, sometimes, or never. Data are from an unweighted sample of family and unpaid caregivers who interacted with older adults’ health care workers within the prior year and who reported on their experiences of being listened to (913 participants), being asked about understanding (912 participants), and being asked about needing help in managing older adults’ treatments (906 participants).

Figure 2.  Family and Unpaid Caregivers’ Experiences With Older Adults’ Health Care Workers, Stratified by Dementia Status
Family and Unpaid Caregivers’ Experiences With Older Adults’ Health Care Workers, Stratified by Dementia Status

Estimates are weighted and reflect the experiences of family and unpaid caregivers to older adults without and with dementia of being listened to, being asked about understanding of treatments, and being asked about needing help always, usually, sometimes, or never. Data are from an unweighted sample of family and unpaid caregivers who interacted with older adults’ health care workers within the prior year and who reported on their experiences of being listened to (581 caregivers for patients without dementia, 332 caregivers for patients with dementia), being asked about understanding (581 caregivers for patients without dementia, 331 caregivers for patients with dementia), and being asked about needing help managing older adults’ treatments (578 caregivers for patients without dementia, 328 caregivers for patients with dementia).

Table 1.  Characteristics of Family and Unpaid Caregivers by Frequency of Interactions With Older Adults’ Health Care Workersa
Characteristics of Family and Unpaid Caregivers by Frequency of Interactions With Older Adults’ Health Care Workersa
Table 2.  Characteristics of Family and Other Unpaid Caregivers Who Interacted With Older Adults’ Health Care Workers, Stratified by Experiences With Carea
Characteristics of Family and Other Unpaid Caregivers Who Interacted With Older Adults’ Health Care Workers, Stratified by Experiences With Carea
1.
National Academies of Sciences, Engineering, and Medicine.  Families Caring for an Aging America. Washington, DC: National Academies of Sciences, Engineering, and Medicine; 2016.
2.
Wolff  JL, Spillman  BC, Freedman  VA, Kasper  JD.  A national profile of family and unpaid caregivers who assist older adults with health care activities.  JAMA Intern Med. 2016;176(3):372-379. doi:10.1001/jamainternmed.2015.7664PubMedGoogle ScholarCrossref
3.
Wolff  JL, Roter  DL.  Family presence in routine medical visits: a meta-analytical review.  Soc Sci Med. 2011;72(6):823-831. doi:10.1016/j.socscimed.2011.01.015PubMedGoogle ScholarCrossref
4.
Wolff  JL, Roter  DL.  Hidden in plain sight: medical visit companions as a resource for vulnerable older adults.  Arch Intern Med. 2008;168(13):1409-1415. doi:10.1001/archinte.168.13.1409PubMedGoogle ScholarCrossref
5.
Laidsaar-Powell  RC, Butow  PN, Bu  S,  et al.  Physician-patient-companion communication and decision-making: a systematic review of triadic medical consultations.  Patient Educ Couns. 2013;91(1):3-13. doi:10.1016/j.pec.2012.11.007PubMedGoogle ScholarCrossref
6.
Price  EL, Bereknyei  S, Kuby  A, Levinson  W, Braddock  CH  III.  New elements for informed decision making: a qualitative study of older adults’ views.  Patient Educ Couns. 2012;86(3):335-341. doi:10.1016/j.pec.2011.06.006PubMedGoogle ScholarCrossref
7.
Wolff  JL, Boyd  CM.  A look at person- and family-centered care among older adults: results from a national survey.  J Gen Intern Med. 2015;30(10):1497-1504. doi:10.1007/s11606-015-3359-6PubMedGoogle ScholarCrossref
8.
Kitko  LA, Hupcey  JE, Pinto  C, Palese  M.  Patient and caregiver incongruence in advanced heart failure.  Clin Nurs Res. 2015;24(4):388-400. doi:10.1177/1054773814523777PubMedGoogle ScholarCrossref
9.
Silveira  MJ, Given  CW, Given  B, Rosland  AM, Piette  JD.  Patient-caregiver concordance in symptom assessment and improvement in outcomes for patients undergoing cancer chemotherapy.  Chronic Illn. 2010;6(1):46-56. doi:10.1177/1742395309359208PubMedGoogle ScholarCrossref
10.
Mitnick  S, Leffler  C, Hood  VL; American College of Physicians Ethics, Professionalism and Human Rights Committee.  Family caregivers, patients and physicians: ethical guidance to optimize relationships.  J Gen Intern Med. 2010;25(3):255-260. doi:10.1007/s11606-009-1206-3PubMedGoogle ScholarCrossref
11.
Levine  C, Zuckerman  C.  The trouble with families: toward an ethic of accommodation.  Ann Intern Med. 1999;130(2):148-152. doi:10.7326/0003-4819-130-2-199901190-00010PubMedGoogle ScholarCrossref
12.
Wolff  JL.  Family matters in health care delivery.  JAMA. 2012;308(15):1529-1530. doi:10.1001/jama.2012.13366PubMedGoogle ScholarCrossref
13.
Swan  BA.  A nurse learns firsthand that you may fend for yourself after a hospital stay.  Health Aff (Millwood). 2012;31(11):2579-2582. doi:10.1377/hlthaff.2012.0516PubMedGoogle ScholarCrossref
14.
Azoulay  E, Chevret  S, Leleu  G,  et al.  Half the families of intensive care unit patients experience inadequate communication with physicians.  Crit Care Med. 2000;28(8):3044-3049. doi:10.1097/00003246-200008000-00061PubMedGoogle ScholarCrossref
15.
Torke  AM, Petronio  S, Purnell  CE, Sachs  GA, Helft  PR, Callahan  CM.  Communicating with clinicians: the experiences of surrogate decision-makers for hospitalized older adults.  J Am Geriatr Soc. 2012;60(8):1401-1407. doi:10.1111/j.1532-5415.2012.04086.xPubMedGoogle ScholarCrossref
16.
Torke  AM, Sachs  GA, Helft  PR,  et al.  Scope and outcomes of surrogate decision making among hospitalized older adults.  JAMA Intern Med. 2014;174(3):370-377. doi:10.1001/jamainternmed.2013.13315PubMedGoogle ScholarCrossref
17.
White  DB.  Strategies to support surrogate decision makers of patients with chronic critical illness: the search continues.  JAMA. 2016;316(1):35-37. doi:10.1001/jama.2016.8691PubMedGoogle ScholarCrossref
18.
National Academies of Sciences, Engineering, and Medicine.  Accounting for Social Risk Factors in Medicare Payment. Washington, DC: National Academies Press; 2017.
19.
Alzheimer’s Association. Cognitive assessment and care planning services: Alzheimer’s Association Expert Task Force recommendations and tools for implementation. https://www.alz.org/careplanning/downloads/cms-consensus.pdf. Published 2017. Accessed March 15, 2018.
20.
Willink  A, DuGoff  EH.  Integrating medical and nonmedical services: the promise and pitfalls of the CHRONIC Care Act.  N Engl J Med. 2018;378(23):2153-2155. doi:10.1056/NEJMp1803292PubMedGoogle ScholarCrossref
21.
Freedman  VA, Kasper  JD.  Cohort profile: the National Health and Aging Trends Study (NHATS).  Int J Epidemiol. 2019;48(4):1044-1045. doi:10.1093/ije/dyz109PubMedGoogle ScholarCrossref
22.
Kasper  JD, Freedman  VA, Spillman  BC.  National Study of Caregiving (NSOC) User Guide. Baltimore, MD: Johns Hopkins University School of Public Health; 2013.
23.
National Quality Forum. Priority setting for healthcare performance measurement: addressing performance measure gaps in person-centered care and outcomes. https://www.qualityforum.org/Publications/2014/08/Priority_Setting_for_Healthcare_Performance_Measurement__Addressing_Performance_Measure_Gaps_in_Person-Centered_Care_and_Outcomes.aspx. Published August 15, 2014. Accessed October 15, 2014.
24.
Family Caregiver Alliance; National Center on Caregiving. National consensus report on caregiver assessment: volumes I & II. https://www.caregiver.org/national-consensus-report-caregiver-assessment-volumes-1-2. Published 2006. Accessed May 6, 2010.
25.
Van Houtven  CH, Miller  KEM, O’Brien  EC,  et al.  Development and initial validation of the Caregiver Perceptions About Communication With Clinical Team Members (CAPACITY) measure.  Med Care Res Rev. 2017;76(6):784-806. doi:10.1177/1077558717747985PubMedGoogle ScholarCrossref
26.
Vick  JB, Amjad  H, Smith  KC,  et al.  “Let him speak:” a descriptive qualitative study of the roles and behaviors of family companions in primary care visits among older adults with cognitive impairment.  Int J Geriatr Psychiatry. 2018;33(1):e103-e112. doi:10.1002/gps.4732PubMedGoogle ScholarCrossref
27.
Hinton  L, Franz  CE, Reddy  G, Flores  Y, Kravitz  RL, Barker  JC.  Practice constraints, behavioral problems, and dementia care: primary care physicians’ perspectives.  J Gen Intern Med. 2007;22(11):1487-1492. doi:10.1007/s11606-007-0317-yPubMedGoogle ScholarCrossref
28.
Galvin  JE, Roe  CM, Xiong  C, Morris  JC.  Validity and reliability of the AD8 informant interview in dementia.  Neurology. 2006;67(11):1942-1948. doi:10.1212/01.wnl.0000247042.15547.ebPubMedGoogle ScholarCrossref
29.
Kasper  JD, Freedman  VA, Spillman  BC.  Classification of Persons by Dementia Status in the National Health and Aging Trends Study: Technical Paper #5. Baltimore, MD: Johns Hopkins University School of Public Health; 2013.
30.
Wolff  JL, Mulcahy  J, Roth  DL,  et al.  Long-term nursing home entry: a prognostic model for older adults with a family or unpaid caregiver.  J Am Geriatr Soc. 2018;66(10):1887-1894. doi:10.1111/jgs.15447PubMedGoogle ScholarCrossref
31.
Vick  JB, Ornstein  KA, Szanton  SL, Dy  SM, Wolff  JL.  Does caregiving strain increase as patients with and without dementia approach the end of life?  J Pain Symptom Manage. 2019;57(2):199-208. doi:10.1016/j.jpainsymman.2018.11.004PubMedGoogle ScholarCrossref
32.
Kasper  JD, Freedman  VA, Spillman  BC, Wolff  JL.  The disproportionate impact of dementia on family and unpaid caregiving to older adults.  Health Aff (Millwood). 2015;34(10):1642-1649. doi:10.1377/hlthaff.2015.0536PubMedGoogle ScholarCrossref
33.
Freedman  VA, DeMatteis  J, Kasper  J. National Study of Caregiving (NSOC) I-III Weighting Guide: release 1.0. https://www.nhats.org/scripts/documents/National_Study_of_Caregiving_(NSOC)_I_III_Weighting_Guide.pdf. Published February 2019. Accessed November 15, 2019.
34.
Freedman  VA, Skehan  M, Wolff  JL, Kasper  JD.  National Study of Caregiving I-III User Guide. Baltimore, MD: Johns Hopkins Bloomberg School of Public Health; 2019.
35.
Council on Scientific Affairs, American Medical Association.  Physicians and family caregivers: a model for partnership.  JAMA. 1993;269(10):1282-1284. doi:10.1001/jama.1993.03500100080032PubMedGoogle ScholarCrossref
36.
Kelly  K, Wolfe  N, Gibson  M, Feinberg  L. Listening to family caregivers: the need to include caregiver assessment in Medicaid home and community-based service waiver programs. https://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2013/the-need-to-include-family-caregiver-assessment-medicaid-hcbs-waiver-programs-report-AARP-ppi-ltc.pdf. Published December 2013. Accessed December 10, 2019.
37.
National Quality Forum.  Addressing Performance Measure Gaps in Home and Community-Based Services to Support Community Living. Washington, DC: National Quality Forum; 2015.
38.
Adelman  RD, Tmanova  LL, Delgado  D, Dion  S, Lachs  MS.  Caregiver burden: a clinical review.  JAMA. 2014;311(10):1052-1060. doi:10.1001/jama.2014.304PubMedGoogle ScholarCrossref
39.
Perry  M, Drasković  I, van Achterberg  T,  et al.  Development and validation of quality indicators for dementia diagnosis and management in a primary care setting.  J Am Geriatr Soc. 2010;58(3):557-563. doi:10.1111/j.1532-5415.2010.02726.xPubMedGoogle ScholarCrossref
40.
Shugrue  N, Kellett  K, Gruman  C,  et al Progress and policy opportunities in family caregiver assessment: results from a national survey.  J Appl Gerontol. 2017;38(9):1319-1341. doi:10.1177/0733464817733104PubMedGoogle ScholarCrossref
41.
Reinhard  SC, Levine  C, Samis  S.  Home Alone: Family Caregivers Providing Complex Chronic Care. Washington, DC: AARP and United Hospital Fund; 2012.
42.
Abadir  PM, Finucane  TE, McNabney  MK.  When doctors and daughters disagree: twenty-two days and two blinks of an eye.  J Am Geriatr Soc. 2011;59(12):2337-2340. doi:10.1111/j.1532-5415.2011.03700.xPubMedGoogle ScholarCrossref
43.
Srivastava  R.  The power proxy.  N Engl J Med. 2010;363(19):1786-1789. doi:10.1056/NEJMp1003221PubMedGoogle ScholarCrossref
44.
Curtis  JR, Engelberg  RA, Wenrich  MD, Shannon  SE, Treece  PD, Rubenfeld  GD.  Missed opportunities during family conferences about end-of-life care in the intensive care unit.  Am J Respir Crit Care Med. 2005;171(8):844-849. doi:10.1164/rccm.200409-1267OCPubMedGoogle ScholarCrossref
45.
Bodenheimer  T.  Coordinating care: a perilous journey through the health care system.  N Engl J Med. 2008;358(10):1064-1071. doi:10.1056/NEJMhpr0706165PubMedGoogle ScholarCrossref
46.
Press  MJ.  Instant replay: a quarterback’s view of care coordination.  N Engl J Med. 2014;371(6):489-491. doi:10.1056/NEJMp1406033PubMedGoogle ScholarCrossref
47.
Bute  JJ, Petronio  S, Torke  AM.  Surrogate decision makers and proxy ownership: challenges of privacy management in health care decision making.  Health Commun. 2015;30(8):799-809. doi:10.1080/10410236.2014.900528PubMedGoogle ScholarCrossref
48.
Levine  C.  HIPAA and talking with family caregivers: what does the law really say?  Am J Nurs. 2006;106(8):51-53. doi:10.1097/00000446-200608000-00022PubMedGoogle ScholarCrossref
49.
Apatira  L, Boyd  EA, Malvar  G,  et al.  Hope, truth, and preparing for death: perspectives of surrogate decision makers.  Ann Intern Med. 2008;149(12):861-868. doi:10.7326/0003-4819-149-12-200812160-00005PubMedGoogle ScholarCrossref
50.
Roter  DL, Hall  JL.  Doctors Talking with Patients, Patients Talking with Doctors: Improving Communication in Medical Visits. 2nd ed. Westport, CT: Praiger Publishers; 2006.
51.
DiMatteo  MR.  Social support and patient adherence to medical treatment: a meta-analysis.  Health Psychol. 2004;23(2):207-218. doi:10.1037/0278-6133.23.2.207PubMedGoogle ScholarCrossref
52.
Frentzel  EM, Sangl  JA, Evensen  CT,  et al.  Giving voice to the vulnerable: the development of a CAHPS nursing home survey measuring family members’ experiences.  Med Care. 2012;50(suppl):S20-S27. doi:10.1097/MLR.0b013e31826b1068PubMedGoogle ScholarCrossref
53.
Roter  DL, Hall  JA, Aoki  Y.  Physician gender effects in medical communication: a meta-analytic review.  JAMA. 2002;288(6):756-764. doi:10.1001/jama.288.6.756PubMedGoogle ScholarCrossref
54.
Agency for Healthcare Research and Quality. About CAHPS. https://www.ahrq.gov/cahps/about-cahps/index.html. Published 2019. Accessed August 3, 2019.
55.
Institute of Medicine.  Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press; 2001.
56.
Interprofessional Education Collaborative.  Core Competencies for Interprofessional Collaborative Practice. Washington, DC: Interprofessional Education Collaborative; 2011.
Limit 200 characters
Limit 25 characters
Conflicts of Interest Disclosure

Identify all potential conflicts of interest that might be relevant to your comment.

Conflicts of interest comprise financial interests, activities, and relationships within the past 3 years including but not limited to employment, affiliation, grants or funding, consultancies, honoraria or payment, speaker's bureaus, stock ownership or options, expert testimony, royalties, donation of medical equipment, or patents planned, pending, or issued.

Err on the side of full disclosure.

If you have no conflicts of interest, check "No potential conflicts of interest" in the box below. The information will be posted with your response.

Not all submitted comments are published. Please see our commenting policy for details.

Limit 140 characters
Limit 3600 characters or approximately 600 words
    Original Investigation
    Geriatrics
    January 24, 2020

    Family Caregivers’ Experiences With Health Care Workers in the Care of Older Adults With Activity Limitations

    Author Affiliations
    • 1Roger C. Lipitz Center for Integrated Health Care, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
    • 2Institute for Social Research, University of Michigan, Ann Arbor
    JAMA Netw Open. 2020;3(1):e1919866. doi:10.1001/jamanetworkopen.2019.19866
    Key Points español 中文 (chinese)

    Question  What are family and unpaid caregivers’ experiences with health care workers in the care of older adults with activity limitations?

    Findings  In this national survey study, most caregivers reported that older adults’ health care workers always (70.6%) or usually (18.2%) listened to them and always (54.4%) or usually (17.7%) asked about their understanding of the older adult’s treatments, but fewer caregivers reported being always (21.3%) or usually (6.9%) asked whether they need help managing older adults’ care.

    Meaning  These findings reinforce the need for health system strategies to support family and unpaid caregivers, who are the main source of assistance to older adults with physical and/or cognitive limitations.

    Abstract

    Importance  Family and unpaid caregivers often play an active role in managing the care of older adults with activity limitations.

    Objective  To examine caregivers’ experiences with older adults’ health care workers.

    Design, Setting, and Participants  This survey study constitutes a secondary analysis of a sample of 1916 family and unpaid caregivers to 1203 community-living older adults with activity limitations who participated in the 2017 National Health and Aging Trends Study. Data analysis was performed January to August 2019.

    Exposures  Caregiver sociodemographic characteristics, caregiving intensity, and frequency speaking with or emailing older adults’ health care workers.

    Main Outcomes and Measures  Caregiver-reported experiences when interacting with older adults’ health care workers in the prior year, including being listened to, being asked about understanding of treatments, and being asked about help needed in managing older adults’ care.

    Results  Caregivers (mean [SE] age, 59.4 [0.5] years; 63.7% women) assisting community-living older adults with activity limitations reported that they never (56.3%), sometimes or rarely (33.0%), or often (10.7%) spoke with or emailed older adults’ health care workers in the prior year. Most caregivers who interacted with older adults’ health care workers reported being always (70.6%) or usually (18.2%) listened to and always (54.4%) or usually (17.7%) being asked about their understanding of older adults’ treatments. Fewer caregivers reported being always (21.3%) or usually (6.9%) asked whether they needed help managing older adults’ care, and nearly one-half (45.0%) were never asked. Caregivers who interacted with older adults’ health care workers often (vs sometimes or rarely) were more likely to report being always or usually listened to (94.8% vs 86.9%; P = .004), being asked about understanding treatments (80.1% vs 69.5%; P = .02), and being asked about needing help (40.8% vs 24.1%; P < .001). No other exposures were consistently associated with caregiver experiences. Measures of caregiving intensity, including caring for an older adult with dementia, were not associated with being listened to or asked about understanding, but were associated with being asked about needed help. Although caregivers of persons with dementia were more likely than caregivers of persons without dementia to report always being asked about needed help (26.9% vs 19.0%), a high percentage in both groups were never asked (41.2% vs 46.5%) (P = .007).

    Conclusions and Relevance  These findings reinforce the need for strategies to better support family and unpaid caregivers, who are the main source of assistance to older adults with physical and/or cognitive limitations.

    Introduction

    Family and other unpaid caregivers provide most of the assistance to community-living older adults with disability.1 In addition to helping with household and self-care activities, nearly one-half of caregivers assist with health care activities, such as managing medications, coordinating care, or attending medical encounters.2 Although caregivers often participate in the exchange of patients’ health information and in medical decision-making,3-5 supporting their involvement in health care interactions is not straightforward. Patients vary in their preferences for communication assistance,6,7 and caregivers vary in their knowledge of patient health conditions and priorities.8,9 Interacting with caregivers poses challenges for health care workers (eg, physicians, nurses, other clinicians, and social workers), who are responsible for ensuring patient privacy and promoting patient autonomy but are not reimbursed for additional time spent educating or counseling family and unpaid caregivers or nurturing productive partnerships.10-12

    Available evidence—largely anecdotal and setting specific—has described interactions between family and unpaid caregivers and health care workers as being tense or adversarial.11,13 Although the communication challenges of surrogate decision-makers are well documented,14-17 little is known about the experiences of family and unpaid caregivers during routine interactions with older adults’ health care workers. Having a better understanding of caregivers’ experiences during interactions with older adults’ health care workers is especially timely given the growing interest in the contribution of social risk to outcomes of care.18 Recent changes to Medicare conditions of participation and reimbursement models that set forth an expectation and the possibility of more explicit caregiver support heighten the importance of better understanding critical elements of person-centered and family-centered care.19,20

    This study draws on 2 linked nationally representative, population-based studies21,22 that are uniquely able to provide insight regarding the experiences of family and unpaid caregivers to a well-characterized sample of community-living older adults with physical or cognitive impairment. Our study has 2 broad objectives. First, we assess the frequency and nature of family and unpaid caregivers’ interactions with health care workers, including whether these interactions are associated with characteristics of older adults, family and unpaid caregivers, or caregiving circumstances and appraisal. In doing so, we examine caregivers’ perceptions of aspects of communication that have been identified as important in person-centered and family-centered care, including being listened to, being asked about understanding of treatments, and being asked about the need for help in managing older adults’ care.23-25 Second, we comparatively examine family caregivers’ experiences by whether they assist an older adult with or without dementia, recognizing that family caregivers’ interactions with health care workers are likely to be both more frequent and important in the context of impaired memory and judgment.26,27

    Methods
    Data

    This study was approved by the institutional review board at the Johns Hopkins Bloomberg School of Public Health. This study follows the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guideline. Data for this study are drawn from the 2017 National Health and Aging Trends Study (NHATS)21 and the National Study of Caregiving (NSOC).22 The initial NHATS sample was drawn from the Medicare enrollment file in 2011 and replenished in 2015; written informed consent was obtained from participants.21 In 2017, the study was conducted with surviving beneficiaries aged 67 years and older. In-person interviews were conducted with NHATS study participants or with proxy respondents if the participant was unable to respond. Study participants were asked whether and how they performed daily activities in the month before the interview. Among those receiving assistance, a detailed roster was created that lists the relationship of each helper and the specific activities with which they provided help.

    The NSOC22 is a nationally representative survey of family and other unpaid caregivers to older persons with activity limitations. Participants in the NSOC were eligible if they were family or other unpaid helpers to NHATS study participants receiving help with mobility, self-care, or household activities for health and functioning reasons or living in a residential care facility with supportive services. Upon obtaining oral consent, a telephone interview was conducted with up to 5 eligible helpers for each older adult. For older adults with more than 5 eligible helpers, 5 helpers were selected at random for interview.

    Of 6312 older adults who participated in the 2017 NHATS, 2214 were included in the NSOC cross-sectional sampling frame, and 4676 of their helpers were eligible for the NSOC. Nonresponse to the NSOC can arise from the NHATS participant (who may refuse to provide contact information for helpers) or caregivers (who may refuse to participate). Participants in the NHATS did not provide contact information for 359 eligible family caregivers, and 1665 of the remaining 4317 eligible family caregivers could not be located or refused to respond. In total, 2652 family caregivers to 1697 older adults responded to the NSOC,22 yielding 92.4% and 61.9% first-stage and second-stage response rates, respectively. We excluded caregivers to 291 older adults who died and caregivers who were helping 323 older adults living in residential care or 101 adults living in nursing facilities because the nature of caregiving is likely to vary according to availability of services.

    Measures

    Our main exposure measure is the frequency of caregivers’ interactions with older adults’ health care workers. Caregivers were asked to respond yes or no to the question “In the last year, did you ever speak to or email any of [older adult’s] medical providers about [his/her] care?” Those responding “no” were categorized as never interacting with older adults’ health care workers. Those responding “yes” were asked, “In the last year, how often did you speak to or email [older adult’s] medical providers about [his/her] care (often, sometimes, rarely)?” We grouped caregivers reporting they interacted with health care workers sometimes or rarely together and examined mutually exclusive categories of never, sometimes or rarely, and often.

    Measures of caregiver-reported experiences when interacting with older adults’ health care workers were derived from 3 questions that were fielded to caregivers who reported interacting with older adults’ health care workers in the last year. These caregivers were told to think about the medical professional with whom they communicated with most often and were then asked, “In the last year, how often did that provider listen to what you had to say, ask if you understood [older adult’s] health treatments, and ask if you needed help managing [older adult’s] health treatments?” For these 3 dimensions of communication, we contrast caregivers responding “always” or “usually” with caregivers responding “sometimes” or “never.”

    Additional measures included caregivers’ sociodemographic characteristics, caregiving intensity, and caregiving-related appraisal. Caregivers’ sociodemographic characteristics included age, gender, educational attainment, and relationship to the older adult (spouse, adult child, or other). Caregiving intensity included hours of care provided in the previous week, caregiving for 4 or more years, and types of assistance. We examined provision of help with types of assistance that have special relevance for interactions with health care workers, including medical tasks (tracking medications, administering injections, providing ostomy care or intravenous line care, and providing skin care, such as for wounds or sores) and health system logistics of care coordination.

    We examined 2 measures of older adults’ physical and cognitive functioning, which have distinctive outcomes on the need for care: self-care and mobility limitations and dementia. We recognize that self-care and mobility limitations may impose the need for transportation or logistical assistance to access medical care, whereas the outcomes of dementia on memory, understanding, and reasoning may impose the need for help in the exchange of medical information and decision-making. We constructed a composite measure of self-care or mobility disability that reflects whether the older adult received help in the prior month with 1 or more self-care (eg, eating, dressing, bathing, and toileting) or mobility (eg, getting outside, getting around inside, and getting out of bed) activities. We used a composite measure of probable dementia constructed from self-reported physician diagnosis of Alzheimer disease or dementia, the AD8 dementia screening interview (administered to proxy respondents),28 and cognitive tests to evaluate memory, orientation, and executive function.29

    Caregiving appraisal refers to a composite measure of caregiving strain (range, 0-9), constructed from 6 items that encompass appraised emotional, physical, and financial difficulty; having no time for oneself; being overwhelmed; and exhaustion. To assess caregiving-related difficulty, caregivers were first asked “Is helping emotionally/physically/financially difficult?” Those responding “yes” were then asked to rate the difficulty of helping in each domain on a scale from 1 (a little difficult) to 5 (very difficult). These items were scored as follows: no difficulty, 0 points; 1 to 3 (some difficulty), 1 point; and 4 to 5 (a lot of difficulty), 2 points. Affirmative responses to questions about having no time for oneself, being overwhelmed, and being exhausted were coded as 1, and negative responses were coded as 0. The composite measure has previously been found to have clinical relevance.30,31

    Statistical Analysis

    We first assessed the frequency with which family and unpaid caregivers interacted with older adults’ health care workers in the prior year. We estimated the number and characteristics of family and unpaid caregivers reporting they never, sometimes or rarely, or often interacted with older adults’ health care workers. We then described family caregivers’ experiences during interactions with older adults’ health care workers. We compared family and unpaid caregiver sociodemographic characteristics and their caregiving intensity and appraisal by whether they reported that older adults’ health care workers always or usually listen to what they have to say, ask about understanding of older adults’ treatments, and ask about help needed by caregivers to manage older adults’ treatments, in comparison with those reporting that such interactions occurred sometimes or never. Finally, because family caregivers’ interactions with health care workers are particularly important in the context of impaired memory and judgment,26,27 and the care needs of persons with dementia are particularly demanding,32 we comparatively examined family caregivers’ experiences by whether they assist an older adult with or without dementia.

    All analyses were conducted in SAS statistical software version 9.4 (SAS Institute) and Stata statistical software version 14 (StataCorp). Between-group differences were examined from P values associated with the Rao-Scott χ2 test for categorical measures and the adjusted Wald test for continuous measures, with 2-sided P < .05 considered statistically significant. We weighted our analytic sample to account for caregivers having different probabilities of selection and different probabilities of responding to the NSOC. To make accurate statements about the variance of those estimates, we applied design variables to account for NSOC’s complex sample design. Additional details about NSOC survey weights and sampling procedures have been published elsewhere.33,34 This secondary analysis was conducted between January and August 2019.

    Results

    Our analytic sample included 1203 older adults living in traditional community settings in 2017 and their 1916 family and unpaid caregivers (mean [SE] age, 59.4 [0.5] years; 63.7% women). Among an estimated 17.4 million family and unpaid caregivers, more than one-half (56.3%) reported they did not interact with older adults’ health care workers in the prior year, whereas one-third (33.0%) reported speaking or emailing sometimes or rarely, and 10.7% reported speaking with or emailing older adults’ health care workers often (Table 1).

    Compared with family and unpaid caregivers who interacted with health care workers sometimes or rarely or never, those who interacted with older adults’ health care workers often were younger (mean [SE] age, 57.5 [0.8] years vs 59.2 [0.7] years for never and 60.4 [0.7] years for sometimes or rarely; P = .02) and more likely to be female (81.0% vs 59.2% for never and 65.9% for sometimes or rarely; P < .001), better educated (education beyond high school, 74.2% vs 53.0% for never and 69.6% for sometimes or rarely; P < .001), an adult child (65.7% vs 35.0% for never and 45.2% for sometimes or rarely; P < .001), and to have been providing care for 4 or more years (66.4% vs 55.7% for never and 64.2% for sometimes or rarely; P = .01). Caregivers who interacted with health care workers often were providing care of greater intensity as measured by providing care 20 or more hours per week (44.7% vs 31.0% for those interacting sometimes or rarely and 23.3% for those with no contact; P < .001) and to be assisting with medically oriented tasks and care coordination. Caregivers who interacted with health care workers often were more likely to be caring for an older adult with dementia (36.6% of those interacting often vs 25.9% and 22.5% interacting sometimes or rarely and never, respectively; P = .001) and to report moderate or high caregiving-related strain (48.7% of those interacting often compared with those interacting with older adults’ health care workers less frequently vs 31.0% and 20.7% interacting sometimes or rarely and never, respectively; P < .001).

    Family and unpaid caregivers’ experiences with older adults’ health care workers varied markedly by type of communication support (Figure 1). Most caregivers reported that older adults’ health care workers always (70.6%) or usually (18.2%) listened to what they had to say (total, 88.8%) and always (54.4%) or usually (17.7%) asked about their understanding of older adults’ health treatments (total, 72.1%). Fewer caregivers reported that older adults’ health care workers always (21.3%) or usually (6.9%) asked about needed help managing older adults’ treatments (total, 28.2%). Approximately 1 in 4 (26.9%) reported they were sometimes asked, and nearly one-half (45.0%) were never asked.

    Caregiver sociodemographic characteristics and caregiving-associated appraisal were not associated with being listened to, asked about understanding, or asked about the need for help in managing care during interactions with older adults’ health care workers (Table 2). Those family and unpaid caregivers who interacted with older adults’ health care workers often (vs sometimes or rarely) were more likely to report being listened to (94.8% vs 86.9%; P = .004), being asked about understanding treatments (80.1% vs 69.5%; P = .02), and being asked about needing help (40.8% vs 24.1%; P < .001). No other characteristics were consistently associated with all 3 types of communication support. Measures of caregiving intensity were not associated with caregivers’ experiences of being listened to or asked about understanding but were associated with being asked about needed help. Those providing more hours of care per week (35.4% of those helping ≥20 hours vs 25.6% and 24.0% of those helping 10 to <20 and 0 to <10 hours, respectively; P = .01) and helping with medically oriented tasks, such as keeping track of medications (34.4% vs 16.7%; P < .001), administering injections (42.4% vs 26.8%; P = .02), and helping with ostomy or intravenous line care (40.7% vs 26.4%; P = .02), were more likely to report being always or usually asked about needed help. Caregivers assisting an older adult with dementia (37.3% vs 24.5%; P < .001) or self-care or mobility limitations (32.0% vs 22.5%; P = .02) were more likely than caregivers assisting persons without dementia or mobility limitations to report being always or usually asked about needing help.

    We compared the experiences of caregivers for persons with and without dementia during interactions with health care workers (Figure 2). Caregivers for persons with dementia were no more likely than caregivers for persons without dementia to report being listened to and being asked about understanding of treatments by the older adults’ health care workers, but were more likely to report they were always asked about needed help managing older adults’ treatments (26.9% vs 19.0%) and were less likely to report being never asked (41.2% vs 46.5%) (P = .007).

    Discussion

    To our knowledge, this study provides the first national information about the experiences of family and unpaid caregivers during routine interactions with older adults’ health care workers. We found that caregivers overwhelmingly reported positive elements of communication when interacting with health care workers about older adults’ health and treatment but were less often asked about their need for help in managing older adults’ care. Although our results depict a generally respectful and constructive family-clinician partnership, they raise important questions about the role of health care workers in supporting the needs of family caregivers, who are so critical in the context of serious illness and late-life disability.

    Professional societies,10,35 advocacy organizations,24,36 and consensus committees1,37 among others38,39 have called for routine assessment of family caregivers as an element of high-quality clinical care and robust systems of long-term services and supports. Our study portrays a mixed state of affairs: although nearly one-third (28.2%) of caregivers reported being always or usually asked by health care workers about whether they needed help in managing older adults’ treatments, nearly one-half (45.0%) were never asked. Our finding that caregivers providing more hours of care to older adults in worse health were more likely to be asked about needed help suggests that health care workers generally recognized that higher-intensity caregivers may especially need additional support. Although consensus guidelines regarding the circumstances under which an assessment should be performed do not now exist,1,40 our finding that more than 4 in 10 caregivers for persons with dementia were not asked about needed help suggests room for improvement.

    Nearly 9 in 10 family caregivers (88.8%) reported that older adults’ health care workers always or usually listened to what they had to say and nearly 3 in 4 (72.1%) reported being always or usually asked about their understanding of older adults’ medical treatments. The favorable communication reported by family caregivers when interacting with older adults’ health care workers stands in stark contrast with the challenges that have been widely described by family caregivers when reporting on their experiences navigating health system demands.11,38,41 There are several explanations for the disconnect between our findings and the prevailing literature. First, prior studies have been largely anecdotal42,43 or specific to acute-care settings14,16,44 and may, therefore, not generalize to the experiences of family caregivers in routine care. Second, the challenges that have been reported may be less due to interpersonal interactions with individual health care workers than systemwide deficiencies, such as fragmented care,45,46 barriers to appropriate information access about the patient’s health or treatments,47,48 or issues specific to surrogate decision-making, such as knowledge gaps relating to patient treatment goals and wishes.17,49 Third, our study focuses on the experiences of caregivers who spoke or emailed with health care workers in the prior year and excludes perspectives of the more than half of caregivers who did not interact with health care professionals, some of whom may have experienced difficulties accessing care or who may purposefully avoid seeking out older adults’ health care workers because of prior experiences.

    Given the important consequences of interpersonal communication between patients and clinicians in the delivery of high-quality care, appropriate services use, and health outcomes,50 it is encouraging that elements of information exchange were rated especially highly in the subgroup of caregivers with particularly demanding responsibilities who interacted with older adults’ health care professionals most often. Although family caregivers commonly accompany older adults to medical encounters,3,4 actively participate in face-to-face discussion,3 and are influential in adherence and care coordination,1,3,51 surprisingly little is known about the frequency, nature, and consequences of these interactions. There is a growing appreciation that understanding what people view to be important is foundational to the measurement and delivery of person-centered and family-centered care.23 Findings from this study and others7,25 suggest a benefit to assessing family perspectives in the measurement of care quality. Because family caregivers are often heavily involved in the care of persons with diminished capacity to self-report on experiences with care,2,32 incorporating family caregiver-reported information may be especially important to ensuring that assessments of care quality incorporate all perspectives. Newly developing methods and instruments are encouraging in this regard.25,52

    Strengths and Limitations

    Several strengths and limitations of our study merit comment. Strengths of our study include drawing on nationally representative population-based data for a well-characterized sample of older adults and their family and unpaid caregivers. Although our study appropriately draws on caregiver-reported measures when reflecting on their experiences of care, self-reported information is subject to potential misclassification for measures such as the frequency of interactions. As a secondary analysis of a national survey, our study was constrained to available information regarding interactions with medical professionals, and we are unable to comment on factors such as the type or specialty of health care workers, their gender, their years in practice, the duration of their relationship with the older adult, and their communication style, all of which are known to be associated with interpersonal rapport and trust.50,53 We are unable to differentiate caregivers’ expectations or preferences for actively engaging with health care workers, or how patient expectations or preferences about the involvement of their caregiver are associated with these interactions. Although we examined specific elements of interpersonal communication, as opposed to a psychometrically validated multi-item instrument, the measures we assess are directly pertinent to aspects of care that have been identified as important to patients and families,25,54 as well as clinicians and policy makers who seek to improve care for those with chronic and disabling conditions.39

    Conclusions

    Well-coordinated, team-based care is an important element in the delivery of care that is safe, efficient, and high quality.55 Our study affords a novel perspective on such care by contributing insight regarding the experiences of family and unpaid caregivers when interacting with older adults’ health care workers. The high percentage of caregivers who reported being well supported when communicating with health care workers about older adults is indicative of their visible and better recognized role in maintaining the health and well-being of older adults with physical and/or cognitive limitations; that caregivers were less likely to report being asked about needed help reflects the greater ambiguity in clinician responsibility toward supporting family caregivers’ needs. These findings are directly relevant to the movement to recognize family as contributing members of an interdisciplinary care team35,56 and contribute benchmark information that may helpful in guiding and monitoring progress toward the advancement of person-centered and family-centered care.23

    Back to top
    Article Information

    Accepted for Publication: November 27, 2019.

    Published: January 24, 2020. doi:10.1001/jamanetworkopen.2019.19866

    Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2020 Wolff JL et al. JAMA Network Open.

    Corresponding Author: Jennifer L. Wolff, PhD, Roger C. Lipitz Center for Integrated Health Care, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, 624 N Broadway, Room 692, Baltimore, MD 21205 (jwolff2@jhu.edu).

    Author Contributions: Dr Wolff and Mr Mulcahy had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

    Concept and design: Wolff, Freedman, Kasper.

    Acquisition, analysis, or interpretation of data: All authors.

    Drafting of the manuscript: Wolff.

    Critical revision of the manuscript for important intellectual content: Freedman, Mulcahy, Kasper.

    Statistical analysis: Wolff, Mulcahy, Kasper.

    Obtained funding: Wolff, Freedman, Kasper.

    Administrative, technical, or material support: Wolff, Mulcahy.

    Supervision: Wolff.

    Conflict of Interest Disclosures: Drs Wolff and Freedman reported receiving grants from the National Institute on Aging in addition to the grants funding the study. No other disclosures were reported.

    Funding/Support: This study was supported by grants U01AG032947, R01AG047859, and R01AG054004 from the National Institute on Aging.

    Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

    References
    1.
    National Academies of Sciences, Engineering, and Medicine.  Families Caring for an Aging America. Washington, DC: National Academies of Sciences, Engineering, and Medicine; 2016.
    2.
    Wolff  JL, Spillman  BC, Freedman  VA, Kasper  JD.  A national profile of family and unpaid caregivers who assist older adults with health care activities.  JAMA Intern Med. 2016;176(3):372-379. doi:10.1001/jamainternmed.2015.7664PubMedGoogle ScholarCrossref
    3.
    Wolff  JL, Roter  DL.  Family presence in routine medical visits: a meta-analytical review.  Soc Sci Med. 2011;72(6):823-831. doi:10.1016/j.socscimed.2011.01.015PubMedGoogle ScholarCrossref
    4.
    Wolff  JL, Roter  DL.  Hidden in plain sight: medical visit companions as a resource for vulnerable older adults.  Arch Intern Med. 2008;168(13):1409-1415. doi:10.1001/archinte.168.13.1409PubMedGoogle ScholarCrossref
    5.
    Laidsaar-Powell  RC, Butow  PN, Bu  S,  et al.  Physician-patient-companion communication and decision-making: a systematic review of triadic medical consultations.  Patient Educ Couns. 2013;91(1):3-13. doi:10.1016/j.pec.2012.11.007PubMedGoogle ScholarCrossref
    6.
    Price  EL, Bereknyei  S, Kuby  A, Levinson  W, Braddock  CH  III.  New elements for informed decision making: a qualitative study of older adults’ views.  Patient Educ Couns. 2012;86(3):335-341. doi:10.1016/j.pec.2011.06.006PubMedGoogle ScholarCrossref
    7.
    Wolff  JL, Boyd  CM.  A look at person- and family-centered care among older adults: results from a national survey.  J Gen Intern Med. 2015;30(10):1497-1504. doi:10.1007/s11606-015-3359-6PubMedGoogle ScholarCrossref
    8.
    Kitko  LA, Hupcey  JE, Pinto  C, Palese  M.  Patient and caregiver incongruence in advanced heart failure.  Clin Nurs Res. 2015;24(4):388-400. doi:10.1177/1054773814523777PubMedGoogle ScholarCrossref
    9.
    Silveira  MJ, Given  CW, Given  B, Rosland  AM, Piette  JD.  Patient-caregiver concordance in symptom assessment and improvement in outcomes for patients undergoing cancer chemotherapy.  Chronic Illn. 2010;6(1):46-56. doi:10.1177/1742395309359208PubMedGoogle ScholarCrossref
    10.
    Mitnick  S, Leffler  C, Hood  VL; American College of Physicians Ethics, Professionalism and Human Rights Committee.  Family caregivers, patients and physicians: ethical guidance to optimize relationships.  J Gen Intern Med. 2010;25(3):255-260. doi:10.1007/s11606-009-1206-3PubMedGoogle ScholarCrossref
    11.
    Levine  C, Zuckerman  C.  The trouble with families: toward an ethic of accommodation.  Ann Intern Med. 1999;130(2):148-152. doi:10.7326/0003-4819-130-2-199901190-00010PubMedGoogle ScholarCrossref
    12.
    Wolff  JL.  Family matters in health care delivery.  JAMA. 2012;308(15):1529-1530. doi:10.1001/jama.2012.13366PubMedGoogle ScholarCrossref
    13.
    Swan  BA.  A nurse learns firsthand that you may fend for yourself after a hospital stay.  Health Aff (Millwood). 2012;31(11):2579-2582. doi:10.1377/hlthaff.2012.0516PubMedGoogle ScholarCrossref
    14.
    Azoulay  E, Chevret  S, Leleu  G,  et al.  Half the families of intensive care unit patients experience inadequate communication with physicians.  Crit Care Med. 2000;28(8):3044-3049. doi:10.1097/00003246-200008000-00061PubMedGoogle ScholarCrossref
    15.
    Torke  AM, Petronio  S, Purnell  CE, Sachs  GA, Helft  PR, Callahan  CM.  Communicating with clinicians: the experiences of surrogate decision-makers for hospitalized older adults.  J Am Geriatr Soc. 2012;60(8):1401-1407. doi:10.1111/j.1532-5415.2012.04086.xPubMedGoogle ScholarCrossref
    16.
    Torke  AM, Sachs  GA, Helft  PR,  et al.  Scope and outcomes of surrogate decision making among hospitalized older adults.  JAMA Intern Med. 2014;174(3):370-377. doi:10.1001/jamainternmed.2013.13315PubMedGoogle ScholarCrossref
    17.
    White  DB.  Strategies to support surrogate decision makers of patients with chronic critical illness: the search continues.  JAMA. 2016;316(1):35-37. doi:10.1001/jama.2016.8691PubMedGoogle ScholarCrossref
    18.
    National Academies of Sciences, Engineering, and Medicine.  Accounting for Social Risk Factors in Medicare Payment. Washington, DC: National Academies Press; 2017.
    19.
    Alzheimer’s Association. Cognitive assessment and care planning services: Alzheimer’s Association Expert Task Force recommendations and tools for implementation. https://www.alz.org/careplanning/downloads/cms-consensus.pdf. Published 2017. Accessed March 15, 2018.
    20.
    Willink  A, DuGoff  EH.  Integrating medical and nonmedical services: the promise and pitfalls of the CHRONIC Care Act.  N Engl J Med. 2018;378(23):2153-2155. doi:10.1056/NEJMp1803292PubMedGoogle ScholarCrossref
    21.
    Freedman  VA, Kasper  JD.  Cohort profile: the National Health and Aging Trends Study (NHATS).  Int J Epidemiol. 2019;48(4):1044-1045. doi:10.1093/ije/dyz109PubMedGoogle ScholarCrossref
    22.
    Kasper  JD, Freedman  VA, Spillman  BC.  National Study of Caregiving (NSOC) User Guide. Baltimore, MD: Johns Hopkins University School of Public Health; 2013.
    23.
    National Quality Forum. Priority setting for healthcare performance measurement: addressing performance measure gaps in person-centered care and outcomes. https://www.qualityforum.org/Publications/2014/08/Priority_Setting_for_Healthcare_Performance_Measurement__Addressing_Performance_Measure_Gaps_in_Person-Centered_Care_and_Outcomes.aspx. Published August 15, 2014. Accessed October 15, 2014.
    24.
    Family Caregiver Alliance; National Center on Caregiving. National consensus report on caregiver assessment: volumes I & II. https://www.caregiver.org/national-consensus-report-caregiver-assessment-volumes-1-2. Published 2006. Accessed May 6, 2010.
    25.
    Van Houtven  CH, Miller  KEM, O’Brien  EC,  et al.  Development and initial validation of the Caregiver Perceptions About Communication With Clinical Team Members (CAPACITY) measure.  Med Care Res Rev. 2017;76(6):784-806. doi:10.1177/1077558717747985PubMedGoogle ScholarCrossref
    26.
    Vick  JB, Amjad  H, Smith  KC,  et al.  “Let him speak:” a descriptive qualitative study of the roles and behaviors of family companions in primary care visits among older adults with cognitive impairment.  Int J Geriatr Psychiatry. 2018;33(1):e103-e112. doi:10.1002/gps.4732PubMedGoogle ScholarCrossref
    27.
    Hinton  L, Franz  CE, Reddy  G, Flores  Y, Kravitz  RL, Barker  JC.  Practice constraints, behavioral problems, and dementia care: primary care physicians’ perspectives.  J Gen Intern Med. 2007;22(11):1487-1492. doi:10.1007/s11606-007-0317-yPubMedGoogle ScholarCrossref
    28.
    Galvin  JE, Roe  CM, Xiong  C, Morris  JC.  Validity and reliability of the AD8 informant interview in dementia.  Neurology. 2006;67(11):1942-1948. doi:10.1212/01.wnl.0000247042.15547.ebPubMedGoogle ScholarCrossref
    29.
    Kasper  JD, Freedman  VA, Spillman  BC.  Classification of Persons by Dementia Status in the National Health and Aging Trends Study: Technical Paper #5. Baltimore, MD: Johns Hopkins University School of Public Health; 2013.
    30.
    Wolff  JL, Mulcahy  J, Roth  DL,  et al.  Long-term nursing home entry: a prognostic model for older adults with a family or unpaid caregiver.  J Am Geriatr Soc. 2018;66(10):1887-1894. doi:10.1111/jgs.15447PubMedGoogle ScholarCrossref
    31.
    Vick  JB, Ornstein  KA, Szanton  SL, Dy  SM, Wolff  JL.  Does caregiving strain increase as patients with and without dementia approach the end of life?  J Pain Symptom Manage. 2019;57(2):199-208. doi:10.1016/j.jpainsymman.2018.11.004PubMedGoogle ScholarCrossref
    32.
    Kasper  JD, Freedman  VA, Spillman  BC, Wolff  JL.  The disproportionate impact of dementia on family and unpaid caregiving to older adults.  Health Aff (Millwood). 2015;34(10):1642-1649. doi:10.1377/hlthaff.2015.0536PubMedGoogle ScholarCrossref
    33.
    Freedman  VA, DeMatteis  J, Kasper  J. National Study of Caregiving (NSOC) I-III Weighting Guide: release 1.0. https://www.nhats.org/scripts/documents/National_Study_of_Caregiving_(NSOC)_I_III_Weighting_Guide.pdf. Published February 2019. Accessed November 15, 2019.
    34.
    Freedman  VA, Skehan  M, Wolff  JL, Kasper  JD.  National Study of Caregiving I-III User Guide. Baltimore, MD: Johns Hopkins Bloomberg School of Public Health; 2019.
    35.
    Council on Scientific Affairs, American Medical Association.  Physicians and family caregivers: a model for partnership.  JAMA. 1993;269(10):1282-1284. doi:10.1001/jama.1993.03500100080032PubMedGoogle ScholarCrossref
    36.
    Kelly  K, Wolfe  N, Gibson  M, Feinberg  L. Listening to family caregivers: the need to include caregiver assessment in Medicaid home and community-based service waiver programs. https://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2013/the-need-to-include-family-caregiver-assessment-medicaid-hcbs-waiver-programs-report-AARP-ppi-ltc.pdf. Published December 2013. Accessed December 10, 2019.
    37.
    National Quality Forum.  Addressing Performance Measure Gaps in Home and Community-Based Services to Support Community Living. Washington, DC: National Quality Forum; 2015.
    38.
    Adelman  RD, Tmanova  LL, Delgado  D, Dion  S, Lachs  MS.  Caregiver burden: a clinical review.  JAMA. 2014;311(10):1052-1060. doi:10.1001/jama.2014.304PubMedGoogle ScholarCrossref
    39.
    Perry  M, Drasković  I, van Achterberg  T,  et al.  Development and validation of quality indicators for dementia diagnosis and management in a primary care setting.  J Am Geriatr Soc. 2010;58(3):557-563. doi:10.1111/j.1532-5415.2010.02726.xPubMedGoogle ScholarCrossref
    40.
    Shugrue  N, Kellett  K, Gruman  C,  et al Progress and policy opportunities in family caregiver assessment: results from a national survey.  J Appl Gerontol. 2017;38(9):1319-1341. doi:10.1177/0733464817733104PubMedGoogle ScholarCrossref
    41.
    Reinhard  SC, Levine  C, Samis  S.  Home Alone: Family Caregivers Providing Complex Chronic Care. Washington, DC: AARP and United Hospital Fund; 2012.
    42.
    Abadir  PM, Finucane  TE, McNabney  MK.  When doctors and daughters disagree: twenty-two days and two blinks of an eye.  J Am Geriatr Soc. 2011;59(12):2337-2340. doi:10.1111/j.1532-5415.2011.03700.xPubMedGoogle ScholarCrossref
    43.
    Srivastava  R.  The power proxy.  N Engl J Med. 2010;363(19):1786-1789. doi:10.1056/NEJMp1003221PubMedGoogle ScholarCrossref
    44.
    Curtis  JR, Engelberg  RA, Wenrich  MD, Shannon  SE, Treece  PD, Rubenfeld  GD.  Missed opportunities during family conferences about end-of-life care in the intensive care unit.  Am J Respir Crit Care Med. 2005;171(8):844-849. doi:10.1164/rccm.200409-1267OCPubMedGoogle ScholarCrossref
    45.
    Bodenheimer  T.  Coordinating care: a perilous journey through the health care system.  N Engl J Med. 2008;358(10):1064-1071. doi:10.1056/NEJMhpr0706165PubMedGoogle ScholarCrossref
    46.
    Press  MJ.  Instant replay: a quarterback’s view of care coordination.  N Engl J Med. 2014;371(6):489-491. doi:10.1056/NEJMp1406033PubMedGoogle ScholarCrossref
    47.
    Bute  JJ, Petronio  S, Torke  AM.  Surrogate decision makers and proxy ownership: challenges of privacy management in health care decision making.  Health Commun. 2015;30(8):799-809. doi:10.1080/10410236.2014.900528PubMedGoogle ScholarCrossref
    48.
    Levine  C.  HIPAA and talking with family caregivers: what does the law really say?  Am J Nurs. 2006;106(8):51-53. doi:10.1097/00000446-200608000-00022PubMedGoogle ScholarCrossref
    49.
    Apatira  L, Boyd  EA, Malvar  G,  et al.  Hope, truth, and preparing for death: perspectives of surrogate decision makers.  Ann Intern Med. 2008;149(12):861-868. doi:10.7326/0003-4819-149-12-200812160-00005PubMedGoogle ScholarCrossref
    50.
    Roter  DL, Hall  JL.  Doctors Talking with Patients, Patients Talking with Doctors: Improving Communication in Medical Visits. 2nd ed. Westport, CT: Praiger Publishers; 2006.
    51.
    DiMatteo  MR.  Social support and patient adherence to medical treatment: a meta-analysis.  Health Psychol. 2004;23(2):207-218. doi:10.1037/0278-6133.23.2.207PubMedGoogle ScholarCrossref
    52.
    Frentzel  EM, Sangl  JA, Evensen  CT,  et al.  Giving voice to the vulnerable: the development of a CAHPS nursing home survey measuring family members’ experiences.  Med Care. 2012;50(suppl):S20-S27. doi:10.1097/MLR.0b013e31826b1068PubMedGoogle ScholarCrossref
    53.
    Roter  DL, Hall  JA, Aoki  Y.  Physician gender effects in medical communication: a meta-analytic review.  JAMA. 2002;288(6):756-764. doi:10.1001/jama.288.6.756PubMedGoogle ScholarCrossref
    54.
    Agency for Healthcare Research and Quality. About CAHPS. https://www.ahrq.gov/cahps/about-cahps/index.html. Published 2019. Accessed August 3, 2019.
    55.
    Institute of Medicine.  Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press; 2001.
    56.
    Interprofessional Education Collaborative.  Core Competencies for Interprofessional Collaborative Practice. Washington, DC: Interprofessional Education Collaborative; 2011.
    ×