Dementia and Transitions of Care Antonio Graham DO Assistant Professor of Medicine and Geriatrics Emory University School of Medicine

Learning Objective Knowledge of incidents and prevalence of patients with dementia in the US population Understanding utilization habits of patients with dementia Recognize the average number of transitions for a dementia patient Identify ways in which we can help patients with dementia and their caregivers navigate the healthcare system

Incidence and Prevalence of Dementia 1 in 3 seniors dies with Alzheimer’s or another dementia Alzheimer’s disease is the 6th leading cause of death in the U.S. In 2015, Alzheimer’s and other dementias cost the nation $226 Billion By 2050, cost could rise as high as 1.1 trillion Http://www.alz.org/facts/overview.asp

Case 1 An older woman w/moderate dementia had back surgery and was sent home without instructions on how to care for herself and without home health care services. She had great difficulty getting out of bed to use the toilet, she could not take care of the surgical wound on her back, and she could not prepare meals for herself. She was frightened and did not know who to call for help. Communication - Patient Education Inappropriate discharge setting Lack of evaluation and involvement of support services

Case 3 An older man Mild cognitive impairment was discharged from the hospital with incomplete discharge instructions. Consequently he did not understand what medications he should take, when he needed to see his doctor in follow-up, what laboratories he needed. He didn't know how to obtain refills on his medications and because he did not get along with his primary care physician, he didn't want to go in for an appointment. Although a visiting nurse was sent out to his home, she did not know what medications he should be taking or what his follow-up needs were. Patient education Care Coordination Communication of care plan

Case 4 An older man who takes medication to thin his blood to prevent a future stroke is hospitalized for an unrelated condition. Because the doctors in the hospital don't know what the usual dose of his blood thinning medication was before the hospitalization and they do not contact the nurse that monitors this medication, they inadvertently change the dose and send him home. The new dose turns out to be twice as potent as his usual dose and within two days he is re-hospitalized with uncontrollable bleeding. Provider communication Adverse medication reactions

What is the Problem? Patients with complex care needs require care across different health care settings Outpatient Older persons with multiple chronic conditions see 8 different physicians over the course of a year Post-hospitalization 23% of hospital patients discharged to another institution 11.6% discharged with home care Patients with complex care needs who require care across different health care settings are vulnerable to experiencing serious quality problems. Although patients with complex acute and chronic care needs experience heightened vulnerability during these transitions, systems of care often fail to ensure that the essential elements of the patient’s care plan that were developed in one setting are communicated to the next team of clinicians, the necessary steps (e.g., preparation for the goals of care delivered in the next setting, arrangements for follow-up appointments and laboratory testing, and reviewing the current medication regimen) before and after a patient’s transfer are properly and fully executed, and the requisite information about the care the patient received from the sending care team is communicated to the receiving care team A 2001 Harris poll commissioned by the Robert Wood Johnson Foundation found that, on average, older persons with one or more chronic conditions see eight different physicians over the course of 1 year.

What is the Problem? Skilled Nursing Facilities 19% of patients transferred back within 30 days 42% within 24 months In all of these cases, a successful “handoff” of care between professionals in each setting is critical to achieving optimal outcomes .

What is the Problem? Patients experience heightened vulnerability during transitions between settings Quality and patient safety are compromised during transitions period

Hazards of Poorly Executed Transitions of Care High rates of medication errors Inappropriate discharge and discharge setting Inaccurate care plan information transfer Lack of appropriate follow-up care The multitude of adverse effects that can be attributed to poorly executed care transitions is often underappreciated

Hazards of Poorly Executed Transitions of Care Problems that occur during transitions have been codified. Leading problems: Medication management Continuity of the care plan 49% of discharged patients had lapses related to medications, test follow-up, or completion of a planned workup Moore et al JGIM 2003; 8:646–651

Hazards - Medication Errors Medication discrepancy among discharged patients Coleman et al -14% Moore et al - 42% Wong et al - 41% Incomplete prescriptions and omitted medications being the most common 29% of instances had the potential to affect outcomes Gray et al. found 20% of patients have adverse med reactions post-discharge. (Annals of Pharmacotherapy, 1999) Coleman et al Arch Intern Med 2005;165(16):1842–1847 Moore et al JGIM 2003; 8:646–651 Wong et al Ann Pharmacother 2008;42:1373–1379

Hazards - Poor Care Plan Communication Provider - Patient Qualitative studies show patients and caregivers: Are unprepared for their role in the next care setting Do not understand essential steps in the management of their condition Cannot contact appropriate health care practitioners for guidance Are frustrated by having to perform tasks practitioners have left undone. Weaver et al Home Health Care Serv Q. 1998;17:27-48 Coleman et al Int J Integrated Care. 2002; 2(2)

Hazards - Poor Care Plan Communication Provider - Provider Study of 300 consecutive admissions to 10 New York City nursing homes from 25 area hospitals Legible transfer summaries in only 72% Clinical data often missing (ECG, CXR, etc.) Contact info for hospital professionals who completed summaries present in less than half Henkel G. Caring for the Ages 2003

Outcomes of Poorly Executed Transitions Re-hospitalization Greater use of hospital emergency, post- acute, and ambulatory services Further functional dependency Permanent institutionalization

Hospital Readmissions 19.6% of Medicare beneficiaries readmitted in 30 days Readmission results in Increased healthcare costs Iatrogenic complications, such as adverse drug events, delirium, and nosocomial infections Progressive functional decline Jencks et al, NEJM 2009;360:1418-1428

Hospital Readmissions Potential high cost savings – unplanned readmissions cost Medicare $17.4 billion in 2004 19% of Medicare discharges followed by an adverse event within 30 days 2/3 are drug events, most often judged “preventable” Only half of patients re-hospitalized within 30 days had a physician visit before readmission Only half of patients re-hospitalized within 30 days had a physician visit before readmission Unknown if lack of physician visit causes readmissions—but poor continuity of care, especially for many chronically ill patients Jencks et al, NEJM 2009;360:1418-1428

How do things go wrong

Care Transitions Process Patient Admitted Assessment Define Problem Treatment Plan Patient Treated Investigations Procedures Consultations Patient improved and discharged Readiness for Discharge Discharge Setting Discharge Education Care Coordination Provider Communication Post Discharge Follow-up DC Summary Medication Reconciliation Follow-up appointments Follow-up Consultations Follow-up tests Readiness for Discharge Clinical Functional Cognitive

Provider Role in Care Transitions Patient Admitted Assessment Define Problem Treatment Plan Patient Treated Investigations Procedures Consultations Patient improved and discharged Readiness for Discharge Discharge Setting Discharge Education Care Coordination Provider Communication Post Discharge Follow-up DC Summary Medication Reconciliation Follow-up appointments Follow-up Consultations Follow-up tests Readiness for Discharge Clinical Functional Cognitive

Potential Lapses in Care Transitions Process Patient improved and ready for discharge Readiness for Discharge Discharge Setting Discharge Education Medication Reconciliation Care Coordination Provider Communication PCP communication DC Summary Discharged to the next care setting Medication Compliance Dietary Compliance Keep follow-up appointments Transportation Caregiver support Home Health/ Community Resources Post Discharge Follow-up DC Summary review Medication Reconciliation Follow-up appointments Follow-up Consultations Follow-up tests Readiness for Discharge Clinical Functional Cognitive There are multiple points during a transition at which care processes can break down: Preparation of the patient and caregiver Often unprepared for roles at new setting of care Communication of vital elements of the care plan Transfer documents often inadequate, brief, illegible Reconciliation of the medication regimen Inaccurate baseline data, completed by hurried physicians Transportation of the patient Completion of follow-up care with a practitioner, diagnostic imaging or laboratory testing Availability of advance care directives across settings

Factors Contributing to Failure in Transitions of Care Failed Transitions System- Related Factors Provider - Related Factors Patient - Related Factors

Anthony et al Advances in Patient Safety: 2001;2:379-394 There are multiple points during a transition at which care processes can break down: Preparation of the patient and caregiver Often unprepared for roles at new setting of care Communication of vital elements of the care plan Transfer documents often inadequate, brief, illegible Reconciliation of the medication regimen Transportation of the patient Completion of follow-up care with a practitioner, diagnostic imaging or laboratory testing Availability of advance care directives across settings Anthony et al Advances in Patient Safety: 2001;2:379-394

Group case SESSION

Case 1 An older woman had back surgery and was sent home without instructions on how to care for herself and without home health care services. She had great difficulty getting out of bed to use the toilet, she could not take care of the surgical wound on her back, and she could not prepare meals for herself. She was frightened and did not know who to call for help. Identify any lapses in transitions of care Communication - Patient Education Inappropriate discharge setting Lack of evaluation and involvement of support services 25

Discharge Readiness Assessment Was this patient ready for discharge? Indicate reasons as to why this patient should or should not have been discharged

Pre-discharge Assessment Does it appear as if any form of pre- discharge assessment was completed on this patient? List all types of pre-discharge assessments that should be completed on all patients to determine discharge readiness

Pre-discharge Assessment Clinical Assessment – Resolution of acute medical issues Functional Assessment ADLs IADLs Mobility Cognitive Assessment Psychosocial Assessment Common Elements for Assessment and Intervention Physiological functioning • Evaluate patient/client’s life care planning and advance directive status. prognosis. • Assess patient/client’s understanding of diagnosis, treatment options, and sexual functioning. • Evaluate impact of illness, injury, or treatments on physical, psychosocial, and Psychosocial functioning function level. • Evaluate patient/client’s ability to return to or exceed pre-illness or pre-injury substance use/abuse concerns that may affect adjustment to illness and care • Assess past and current mental health, emotional, cognitive, social, behavioral, or behavioral, and social functioning. • Assess effect of medical illness or injury on psychological, emotional, cognitive, management needs. • Determine with patient/client which psychosocial services are needed to 3 • Affirm patient/client dignity and respect cultural, religious, socioeconomic, and Cultural factors maximize coping. sexual diversity. • Use the patient/client’s values and beliefs to strengthen the support system. death. • Assess cultural values and beliefs, including perceptions of illness, disability, and care and decision-making. • Understand traditions and values of patient/client groups as they relate to health translation services and interpreters. • Provide information and services in patient/client’s preferred language, using Health literacy and linguistic factors • Provide easy-to-understand, clinically appropriate material in layperson’s • Use effective tools to measure patient/client’s health literacy. or literacy. • Use graphic representations for patients/clients with limited language proficiency language. • Develop educational plan based upon patient/client’s identified needs. • Check to ensure accurate communication using teach-back methods. Financial factors assisting patient/client. • Evaluate caregiver’s capacity to understand and apply health care information in • Identify patient/client’s access to, type of, and ability to navigate health insurance. • Provide feedback on financial impact of treatment options. • Evaluate impact of illness on financial resources and ability to earn a living wage. • Identify patient/client’s access to and ability to navigate prescription benefits. resources. • Educate patient/client about benefit options and how to access available • Assess how patient/client finds meaning in life. Spiritual and religious functioning • Assess barriers to accessing care and identify solutions to ensure access. Physical and environmental safety • Assess how spirituality and religion affect adaptation to illness. • Assess environmental barriers that may compromise the patient/client’s ability to needs. • Evaluate patient/client’s ability to perform activities of daily living and meet basic • Determine with patient/client the appropriate level of care. meet established treatment goals. • Assess for risk of harm to self or others. 4 • Assess ability of family or other informal caregivers to assist patient/client. • Identify patient/client’s formal and informal support systems. Family and community support • Assess for, and if appropriate help resolve, conflicts within the family. • Provide support to family members and other informal caregivers. • Assess how patient/client’s illness affects family structure and roles. community social services as needed. • Evaluate risk of physical, emotional, or financial abuse or neglect, referring to • Symptoms • Patient/client diagnosis Assessment of medical issues • Adherence assessment and intention • Medication list and reconciliation of new medications throughout treatment Continuity/Coordination or Care Communication • Lab tests, consultations, x-rays, and other relevant test results • Substance use and abuse disorders • Date information sent to referring physician, PCP, or other clinical providers • Specific clinical providers • Necessary follow-up care

Pre-discharge Assessment Psychosocial functioning assessment Family and community support Cultural factors Health literacy and linguistic factors Financial factors Spiritual and religious functioning Physical and environmental safety Common Elements for Assessment and Intervention Physiological functioning • Evaluate patient/client’s life care planning and advance directive status. prognosis. • Assess patient/client’s understanding of diagnosis, treatment options, and sexual functioning. • Evaluate impact of illness, injury, or treatments on physical, psychosocial, and Psychosocial functioning function level. • Evaluate patient/client’s ability to return to or exceed pre-illness or pre-injury substance use/abuse concerns that may affect adjustment to illness and care • Assess past and current mental health, emotional, cognitive, social, behavioral, or behavioral, and social functioning. • Assess effect of medical illness or injury on psychological, emotional, cognitive, management needs. • Determine with patient/client which psychosocial services are needed to 3 • Affirm patient/client dignity and respect cultural, religious, socioeconomic, and Cultural factors maximize coping. sexual diversity. • Use the patient/client’s values and beliefs to strengthen the support system. death. • Assess cultural values and beliefs, including perceptions of illness, disability, and care and decision-making. • Understand traditions and values of patient/client groups as they relate to health translation services and interpreters. • Provide information and services in patient/client’s preferred language, using Health literacy and linguistic factors • Provide easy-to-understand, clinically appropriate material in layperson’s • Use effective tools to measure patient/client’s health literacy. or literacy. • Use graphic representations for patients/clients with limited language proficiency language. • Develop educational plan based upon patient/client’s identified needs. • Check to ensure accurate communication using teach-back methods. Financial factors assisting patient/client. • Evaluate caregiver’s capacity to understand and apply health care information in • Identify patient/client’s access to, type of, and ability to navigate health insurance. • Provide feedback on financial impact of treatment options. • Evaluate impact of illness on financial resources and ability to earn a living wage. • Identify patient/client’s access to and ability to navigate prescription benefits. resources. • Educate patient/client about benefit options and how to access available • Assess how patient/client finds meaning in life. Spiritual and religious functioning • Assess barriers to accessing care and identify solutions to ensure access. Physical and environmental safety • Assess how spirituality and religion affect adaptation to illness. • Assess environmental barriers that may compromise the patient/client’s ability to needs. • Evaluate patient/client’s ability to perform activities of daily living and meet basic • Determine with patient/client the appropriate level of care. meet established treatment goals. • Assess for risk of harm to self or others. 4 • Assess ability of family or other informal caregivers to assist patient/client. • Identify patient/client’s formal and informal support systems. Family and community support • Assess for, and if appropriate help resolve, conflicts within the family. • Provide support to family members and other informal caregivers. • Assess how patient/client’s illness affects family structure and roles. community social services as needed. • Evaluate risk of physical, emotional, or financial abuse or neglect, referring to • Symptoms • Patient/client diagnosis Assessment of medical issues • Adherence assessment and intention • Medication list and reconciliation of new medications throughout treatment Continuity/Coordination or Care Communication • Lab tests, consultations, x-rays, and other relevant test results • Substance use and abuse disorders • Date information sent to referring physician, PCP, or other clinical providers • Specific clinical providers • Necessary follow-up care

Discharge Setting Assessment Was this patient discharged to an appropriate location - Home? Indicate reasons as to why this patient should or should not have been discharged home List alternative discharge settings and identify which setting is most appropriate for this patient

Discharge Setting Discharge sites: Home Assisted living A nursing facility for rehabilitation Acute rehab Hospice

Case 2 An older woman had a stroke and was discharged from the hospital to home without any plan for follow up care. Her primary care physician was not notified of her recent hospitalization or new diagnosis. The patient's condition worsened and she had to be readmitted to the hospital within a few days. What are the lapses in transitions of care Care Coordination – F/U appointment PCP communication 32

Care Coordination List what aspects of care coordination that were adequate in this patient? List aspects of care coordination that were inadequate and should have been completed in this patient?

Care Coordination Does the patient/client have a primary care physician? Communication Appointments Does the patient/client have a specialty physician, e.g., cardiologist? Ensure patient/client and caregiver understand all information and have a copy of the care plan with them

Care Coordination Does the patient/client have an outpatient case manager who should be notified? Ensure all transitions services and care (medications, equipment, home care, SNF, hospice) are coordinated and available for patient use

Communication Skills Did communication with other accountable persons at the point of transition appear adequate? Who are the other accountable persons at the point of transition that the in-patient physician should communicate with pre-discharge? Define the components of the care plan to be communicated with these stakeholders

Communication Accountable provider at point of transition Case manager/social worker/discharge planner PCP/SNF/LTAC/NH Patient Family and paid caregivers

SHM Communication Checklist

Case 3 An older man was discharged from the hospital with incomplete discharge instructions. Consequently he did not understand what medications he should take, when he needed to see his doctor in follow-up, what laboratories he needed. He didn't know how to obtain refills on his medications and because he did not get along with his primary care physician, he didn't want to go in for an appointment. Although a visiting nurse was sent out to his home, she did not know what medications he should be taking or what his follow-up needs were. Identify the lapses in transitions of care Patient education Care Coordination Communication of care plan 39

Patient/ Caregiver Education Did this patient appear to be adequately educated? List essential components that were omitted from his education? List the essential components of patient discharge education. Identify an optimal method of patient education that facilitates patient understanding.

SHM Communication Checklist

Case 4 An older man who takes medication to thin his blood to prevent a future stroke is hospitalized for an unrelated condition. Because the doctors in the hospital don't know what the usual dose of his blood thinning medication was before the hospitalization and they do not contact the nurse that monitors this medication, they inadvertently change the dose and send him home. The new dose turns out to be twice as potent as his usual dose and within two days he is rehospitalized with uncontrollable bleeding. Provider communication Adverse medication reactions 42

Issues Identified Discuss medication reconciliation issues identified in this instance Discuss best practices during a Post Discharge Visit with you as the PCP

Post Discharge Visit with PCP DC Summary Medication Reconciliation Follow-up tests Follow-up appointments Follow-up Consultations

How can we improve transitions of care

Solution to Problem A set of actions designed to ensure the coordination and continuity of care as patients transfer between different locations or different levels of care in the same location – AGS definition of Care Transitions

Solution to Problem Tailored towards what will work best for the patients in different hospital settings Interventions System related Patient related Provider related

Other Interventions Several programs developed aimed at improving transitions across settings Coordination of care by a “coordinating” health professional Interventions are divided into two groups based on intensity: The ‘‘coach,’’ ‘‘guide,’’ approach The ‘‘guardian angel’’ approach Interventions are divided into two groups based on intensity: the ‘‘coach,’’ ‘‘guide,’’ or system refinement approach and the ‘‘guardian angel’’ approach, which involves intensive case management by medical care providers.

TABLE 1 Clinical Trials to Improve Outcomes for Elders Discharged From the Hospital Chiu and newcomer conducted a systematic review of all the care transitions intervention trials that had been conducted bw 1996 nad 2006. The interventions ranged from intensive discharge planning processes to telephone visits and home vsits. Half of these trials showed a reduction in rehospitalization rates as a result of their interventions 2 A Systematic Review of Nurse-Assisted Case Management to Improve Hospital Discharge Transition Outcomes for the Elderly. Chiu, Wai; Newcomer, Robert Professional Case Management. 12(6):330-336, November/December 2007.

Comparison of Care Transitions Models Author Setting Clinical Focus Subjects per Group Years Duration Intensity Savings/Patient ($) Naylor et al 2 university hospitals Varied 180 1992–1996 6 months High $3,301 6 urban hospitals Heart failure 120 1997–2001 12 months $4845 Coleman et al HMO, 1 hospital, 8 NHs, 1 HHA 370 2002–2003 Low $488

Care Transitions Intervention Activities by Pillar and Stage of Intervention Coleman, E. A. et al. Arch Intern Med 2006;166:1822-1828. Copyright restrictions may apply.

Case 2 An older woman had a stroke w/hx of Dementia and was discharged from the hospital to home without any plan for follow up care. Her primary care physician was not notified of her recent hospitalization or new diagnosis. The patient's condition worsened and she had to be readmitted to the hospital within a few days. Care Coordination – F/U appointment PCP communication

Intervention – Naylor Approach Use of an Advanced Practice Nurse Initial APN visit within 48 hours of hospital admission APN visits every 48 hours during hospitalization 2 home APN visits (48 hours, 7-10 days after discharge) Additional APN visits based on patients’ needs with no limit on number APN telephone availability 7 days per week At least weekly APN initiated telephone contact with patients or caregivers APN telephone availability 7 days per week (8 AM to 10 PM on weekdays and 8 AM to noon on weekends)

Strategies to Implement Along Care ContinuBum Summary of Care Transitions Best Practices Table 1: During Hospitalization Table 2: At Discharge Table 3: Post-Discharge Risk screen patients and tailor care Establish communication with primary care physician (PCP), family, and home care Use “teach-back” to educate patient/caregiver about diagnosis and care Use interdisciplinary/multi-disciplinary clinical team Coordinate patient care across multidisciplinary care team Discuss end-of-life treatment wishes Implement comprehensive discharge planning Educate patient/caregiver using “teach-back” Schedule and prepare for follow-up appointment Help patient manage medications Facilitate discharge to nursing homes with detailed discharge instructions and partnerships with nursing home practitioners Promote patient self management Conduct patient home visit Follow up with patients via telephone Use personal health records to manage patient information Establish community networks Use telehealth in patient care 55