Caregiving for Vulnerable I have no conflicts of interest to - PowerPoint PPT Presentation

2/27/2020 COI Caregiving for Vulnerable I have no conflicts of interest to disclose. Populations Wagahta Semere MD, MHS Assistant Professor, UCSF Division of General Internal Medicine and Center for Vulnerable Populations at Zuckerberg San Francisco General Hospital The The Cy Cycle cle of of Car Caregivin giving  Unable to see a doctor herself for Learning ning Objectiv Objectives es Story St ory of of Ms. Ms. O years, while experiencing chronic back pain and caregiver burden  To describe the urgent caregiving need for an aging and  Lost her source of income when both vulnerable U.S. population. her parents passed  To discern between different types of caregivers and caregiving  Presented with severe depression, services, both formal and informal. weight loss, dysphagia  To develop ethical strategies for engaging family caregivers in  Diagnosed with advanced esophageal patient care. cancer  To strategize ways to assess family (informal) caregiver burden  56 yo Spanish ‐ speaking woman  Suffering from severe malnutrition, and recognize its consequences.  In ‐ Home Support Services functional decline  To understand resources and supports for family caregivers and (IHSS) primary caregiver for both  Adult daughter has become her her elderly parents primary caregiver their care recipients.

2/27/2020 The The Lar Large Po Population of of Am Americ erican ans wi with Disab Disability ility Disability: serious difficulty with hearing, vision, cognition, walking or climbing stairs, as well as difficulty with self ‐ care and independent living.  40 million Americans with a disability in 2015 (12.6% of population)  13% with cognitive impairment  About 25% of the population age 65 to 74 reported a disability  Those ages 35 to 64 accounted for more disabled Americans – nearly 16 million in 2015 – than any other age group. Source: U.S. Census Bureau, Population Division. 2012. Table 12. Projections of the Population by Age and Sex for the United States: 2015 to 2060 (NP2012 ‐ T12). The The Gr Growin ing Nee Need fo for Lon Long ‐ Te Term Se Serv rvic ices and and Supports pports (L (LTSS) SS) LTSS: a broad range of services (institutional or community ‐ based) by paid or unpaid caregivers that assist people who have limitations in their ability to care for themselves due to a physical, cognitive, or chronic health condition that is expected to continue for at least 90 days. • ~11 million Americans use community ‐ based LTSS each year; 1.8 million receive services in nursing homes • A recent study projects that over half of adults who reach age 65 will someday require a high level of help with basic daily activities; 1 in 7 will need LTSS for more than five years Source: Favreault M, Dey, J. Long ‐ Term Services and Supports for Older Americans: Risks and Financing Research Brief. 2015;

2/27/2020 “A “Aging in in Pl Place” ace” wi with In In ‐ Home Home Suppo Support Ser Service ices (IHSS (IHSS)  Statewide program administered by each county under the direction of the California Department of Social Services.  IHSS provides those with limited income services to help them remain safely at home or “Age in Place.” Eligibility Criteria:  SSI/SSP or Medi–Cal eligible.  Blind, disabled, or ≥ 65 yrs old  Living in a home, apartment or abode of their choosing (not a facility)  Unable to live safely at home without care. IH IHSS Applic Application ion Pr Proc oces ess  Submit an application that includes healthcare certification form.  County caseworker is assigned.  Caseworker needs assessment: home visit to determine types of services and number of hours (up to 283 hrs per month)  Caregiver – friend, relative, or a worker in IHSS Registry.  Client acts as employer, responsible for supervision and signing time sheets.  Workers assist with a variety of activities, including personal care and paramedical services, household chores, and errands such as grocery shopping or going to medical appointments.

2/27/2020 Formal vs Fo vs In Informal Car Caregivers The committee calls for a Formal Caregiver – a provider associated with a formal service transformation in the policies and system. Typically paid. practices affecting the role of families in the support and care of older adults, Family (Informal) Caregiver – any relative, partner, or friend stating that today’s emphasis on who has a significant personal relationship with, and provides person ‐ centered care needs to evolve a broad range of assistance for, an older person or an adult into a focus on person ‐ and family ‐ with a chronic or disabling condition. Typically unpaid. centered care. Family ily Car Caregiving in in the the U. U.S. Valu aluin ing the the Invaluable: able: The The Ec Economic Va Value of of Fa Family Car Caregivin ving • 39.8 million Americans are caregivers for an Types of Care Recipient Conditions adult • 60% of caregivers are Informal caregiving women saves the national • 1 in 10 caregivers are spouses/partners economy between • Higher hour caregivers 4x $221 and $642 more likely to be spousal billion annually. caregivers • 25% of caregivers have More than half of care recipients have been been in their role 5+ hospitalized in the last 12 months years Source: National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.

2/27/2020 Car Caregiver Ro Roles and and Resp sponsib sibilitie ilities Communication with Medical  Caregivers help, on average, with 4.2 out of 7 Instrumental Team Activities of Daily Living (IADLs)  59% help with at least one Activity of Daily Living (ADL) ADLs IADLs  About 6 in 10 caregivers assist with “medical/nursing tasks,” Caregiver Roles (i.e. injections, tube feedings, catheter and colostomy care)  Caregivers interact with various providers, agencies, and professionals on their care recipient’s behalf. Emotional/ Medical/  2 out of 3 monitor their care recipient’s condition to adjust care, Nursing Social  63% communicate with health care professionals, and Support Tasks Advocate  50% advocate for their recipient. Source: National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S. Car Caregiv givers fo for Patien tients ts wi with th Lim Limited Englis English Pr Proficienc ncy (LEP (LEP) ar are Caregiving Car ng fo for Racia Racial/E /Eth thnic nic Diver verse se Popula pulations ions Heavily Hea ily Relie lied Upon Upon Dur During ng Car Care Tr Transitions • Caregiving workforce is increasingly diverse (21% Hispanic, 20% Key Findings: Asian, 20% Black). • 158 caregivers for patients with LEP recently discharged from hospital • Racial/ethnic differences exist across caregiving experiences. for acute stay interviewed. • 69% of caregivers were adults caring for parents or grandparents. • Hispanic and African ‐ American caregivers experience higher burdens from caregiving and spend more time caregiving on • 43.7% of caregivers had LEP; only 12% of patients had access to professional interpreters at the time discharge instructions were average than their White or Asian ‐ American peers provided. • African ‐ American caregivers (41%) are more likely to provide • 40% reported moderate/high levels of perceived caregiving stress. help with more than three ADLs than white caregivers (28%) or • Caregivers for Chinese ‐ speaking patients were most likely to report Asian ‐ Americans (23%). moderate/high levels of perceived stress. Semere W, Napoles A, Gregorich S, Livaudais ‐ Toman J, Karliner L. Caregivers for Older Adults with Limited English Proficiency: Transitioning from Hospital to Home. J Gen Intern Med. 2019 Sep;34(9):1744 ‐ 1750.

2/27/2020 4 in 10 caregivers want to Communication have more conversations with Medical with providers about Team patient care. ADLs IADLs Caregiver Roles Emotional/ Medical/ Nursing Social Support Tasks Advocate Semere W, Napoles A, Gregorich S, Livaudais ‐ Toman J, Karliner L. Caregivers for Older Adults with Limited English Proficiency: Transitioning from Hospital to Home. J Gen Intern Med. 2019 Sep;34(9):1744 ‐ 1750 Why En Wh Engage Pa Patients’ Engage patient Barrie Barriers to to Re Reaching out out to to Car Caregiv givers fo for Pa Patients Family Car Fa Caregivers? in self ‐ management strategies  Professional code of ethics emphasizes obligations towards Improve patient the patient and offers little guidance in engaging their Ease care disease caregivers. transitions outcomes  Electronic health records provide limited options for identifying and tracking involved caregivers.  Reimbursement structures focus on the patient, providing Overcome Gain limited direct incentives for engaging their caregivers. communication information to  Medical training focuses on individual patient treatment and barriers with inform care management, creating a lack of provider comfort with patients management Prevent family ‐ centered care. adverse events