Programs of All-inclusive Care for the Elderly (PACE) are capitated Medicare/Medicaid programs that provide person-centered care (PCC) to older adults needing nursing home placement with an option of community-based long-term care. Providing PCC means that a person's values and preferences are elucidated and, once expressed, used to guide all aspects of their health care, supporting their realistic health and life goals (American Geriatrics Society [AGS] Expert Panel on Person-Centered Care, 2015). Through an interprofessional team-based approach, PACE programs provide integrated comprehensive PCC that includes the participant, primary care practitioners, nursing, rehabilitation services, medications, social services, pastoral care, specialty services, and social activities (e.g., transportation, adult day care). The concept of PCC is achieved through dynamic relationships among the individual PACE participant and others who are important to the participant and all relevant interprofessional providers (AGS Expert Panel on Person-Centered Care, 2015).
PACE programs, more so than Accountable Care Organizations, are financially accountable for hospitalizations, nursing home stays, emergency department visits, and medication use (Penn Nursing Science, 2012). A significant proportion of PACE enrollees, up to 24% in some programs, have moderate to severe levels of mental illness (e.g., schizophrenia, schizoaffective disorder, bipolar disorder, major depressive disorder [MDD]). The most common diagnosis is major depression. In addition, 40% have neurodegenerative illnesses, such as dementia (Ginsburg & Eng, 2009). These PACE participants are at risk for behavioral health problems that could lead to emergency care, hospitalization, and institutionalization (Ginsburg & Eng, 2009; Sareen, Afifi, McMillan, & Asmundson, 2011; Walsh, Senn, & Carey, 2013).
Person-Centered Care for Pace Participants With Serious Mental Illness
It is essential to address mental health issues in PACE participants to provide PCC. Yet, PACE is just beginning to systematically address the prevention and care of specific mental health conditions. For example, mental health care is not separately listed among the services that PACE provides even though PACE programs are required to care for all health problems of their participants (Centers for Medicare & Medicaid Services, 2011). These dual-eligible older adults are often underserved and have an accumulation of chronic illnesses and health disparities due to a lack of integrated care and attention to mental health issues (Sareen et al., 2011). Mental health conditions are the second most common (36%) chronic conditions found in older adult Pennsylvanian Medicaid beneficiaries (Commonwealth of Pennsylvania, 2009). Unfortunately, access to mental health care for older adults is a concern in many major cities. Only 50% of older adults with mental illness receive treatment, most of which is often provided by their primary care provider rather than a trained mental health provider (Geropsychiatric Nurse Collaborative, 2011).
Substance Misuse Disorders in Older Adults
The misuse of substances by older adults represents a growing problem, with 4.7% of adults older than 50 having used an illicit substance during the past year, and rates of non-medical use of prescription drugs being 3.2% for those ages 55 to 59 and 0.4% for those ages 65 or older nationwide (Substance Abuse and Mental Health Services Administration, 2013). Alcohol misuse also represents a significant national problem, with 6.9% of adults 65 and older engaging in binge drinking and 1.8% reporting heavy drinking (Sorocco & Ferrell, 2006).
Co-Occurring Alcohol Misuse and Posttraumatic Stress Disorder in Older Adults
Co-occurring alcohol misuse is common in mood and anxiety disorders (Mericle, Ta Park, Holck, & Arria, 2012). Researchers have found that the association between alcohol disorders and any mood disorder was stronger among Black than White individuals (Huang et al., 2006). Yet, little research has looked at health disparities and health-seeking behaviors among older adults with co-occurring alcohol misuse and anxiety disorders. In one large study evaluating co-occurring conditions across different racial and ethnic groups, it was found that among Black individuals, 18.6% experienced posttraumatic stress disorder (PTSD) co-occurring with alcohol use disorder, second only to MDD (26.9%) (Mericle et al., 2012). Participants in this study who had co-occurring alcohol disorders fared worse on psychosocial indicators than those with mental health or substance misuse disorders alone (Mericle et al., 2012). There are two types of older adults who misuse alcohol: those who have abused alcohol since they were young (i.e., early onset) versus those who started later in life (Fingerhood, 2000). Another study found that individuals who started drinking after age 45 typically started following a traumatic event (Guida, Unterbach, Tavolacci, & Provet, 2004).
SMI in older adults can include long-standing/severe bipolar disorder, schizophrenia, schizoaffective disorders, and MDD. Participants with active mental health disorders—especially depression, anxiety, PTSD, or alcohol misuse disorder—can experience more severe symptoms associated with medical illnesses than older adults without SMI, which in turn can lead to increased use of emergency and non-psychiatric hospital services (Fogarty, Sharmal, Chetty, & Culpepper, 2008; Kuerbis, Sacco, Blazer, & Moore, 2014).
Description of Living Independently for Elders (LIFE) Program Participants
PACE programs in Pennsyl-vania are called LIFE, and are geographically defined. Older adults participating in these programs constitute a uniquely vulnerable population with regard to substance misuse. To enroll in LIFE, participants must meet State criteria for nursing home eligibility. Thus, LIFE's participants represent a sicker and more disabled cohort than the general older adult population. Changes in physiology related to aging can magnify the adverse effects of substances, and those with long-standing substance use disorders can have accelerated aging and poorer health than their sober counterparts (Kuerbis et al., 2014). In addition, participants with multiple medical illnesses, including behavioral, cognitive, and pain disorders, are more frequently placed on medications with potential for addiction/abuse (Fingerhood, 2000).
LIFE participants with substance misuse issues often find themselves at the intersection of primary care and the behavioral health team. Participants can arrive at this crossroads through a variety of paths: participants with long-term substance use problems who are facing medical consequences of their drug abuse (e.g., cirrhosis, cardio/cerebrovascular disease, renal disease, neurocognitive disorders, falls); participants whose personal use or association with known users puts them at risk for financial exploitation or violence; and participants with medical illness or SMI who take medications for treatment purposes but, over time, start to misuse those medicines or develop addictive behaviors surrounding their use. Each of these common scenarios presents complex challenges for the interprofessional care team aiming to provide PCC.
One LIFE program is situated in West Philadelphia, Pennsylvania, and currently has 460 participants. These participants are overwhelmingly dual-eligible (89.4%), African American (95.1%), and female (72.2%). Participants in this LIFE program are typical of those served in PACE nationally, with a mean age of 78 (DataPace [unpublished data], 2014). Among these LIFE participants, 8.1% have SMI, with more than 40% taking antidepressant drugs for a diagnosis of depression and anxiety. In addition, >41% of participants scored <24 on the Mini-Mental State Examination (Folstein, Folstein, & McHugh, 1975), indicating possible cognitive impairment. LIFE provides PCC, which depends on participant and family engagement to maintain. Such family/community engagement is often difficult to find when LIFE participants have a dual diagnosis (i.e., both SMI and substance misuse), as the strain put on families caring for loved ones with dual diagnosis can be immense.
The population drawn from this LIFE program's catchment area represents some of Philadelphia's poorest citizens in West and North Philadelphia as well as a few zip codes in Delaware County. The average poverty level in the United States is 14.3% and represents an annual income of $22,530 for a family of four (Kaiser Family Foundation, 2015a). Philadelphia's average poverty rate is 25%. Six of 10 Philadelphia zip codes served by LIFE exceed the average city poverty rate, and all but one exceeds the national rate (Kaiser Family Foundation, 2015b). It was estimated that in 2015 there would be more than 350,000 adults older than 55 living in Philadelphia (Spector & Diamond, 2006). Of these 350,000 older adults, 141,000 were considered minority older adults (Spector & Diamond, 2006). Minority older adults experience greater health disparities and poorer health outcomes as a result of historically limited access to health care resources and a significant service gap for this growing population of older adults. Many participants of the LIFE program also reside in communities with endemic poverty and face the consequences of living in these environments, such as higher rates of crime, personal violence, and lack of access to healthy food options and adequate health care (Kaiser Family Foundation, 2015b; Walsh et al., 2013). LIFE older adults also live in a city with higher than national averages for hypertension (36% versus 31%), diabetes (13% versus 8%), and active smokers (25% versus 21%) (Pew Charitable Trusts, 2011). As a result, LIFE's population endures stressors that contribute to poorer aging, with greater levels of medical comorbidities, including SMI (Pew Charitable Trusts, 2011).
Person-Centered Care Approaches to Address Serious Mental Illness in Life Participants
The mental health team (MHT) at LIFE has been evolving to meet the complex needs of older adults enrolled in the program. The MHT consists primarily of two advanced practice nurses (APNs), who collaborate with a geropsychiatrist one afternoon per week. Additional team participants include: nurses, social workers, chaplains, and physical and occupational therapists. The team also supervises trainees from a multitude of disciplines on providing PCC for older adults with mental illness. The MHT evaluates and treats participants wherever they are in the community (e.g., LIFE day center, participants' homes, nursing homes). Every 6 months, nurses screen each participant for depression and cognitive impairment, which generates referrals to the MHT. APNs on the MHT also participate in weekly team meetings and receive referrals through these meetings.
Responsibilities of the MHT include providing person-centered mental health care through: (a) initial assessment for SMI; (b) ongoing management of SMI; (c) assistance in providing management of social/environmental consequences of pathology, including those individuals with personality disorders; and (d) performing neurocognitive and capacity evaluations, as well as behavior evaluations associated with progressive neurodegenerative illnesses (Table). Within the LIFE program, referrals for addressing enrolled participants with a dual diagnosis (i.e., those with SMI and active substance use) are on the rise. The MHT works diligently to provide PCC by working with participants, families, and interprofessional teams to develop and accomplish patients' goals. The MHT addresses substance use disorders through a team-based PCC approach.
Person-Centered Care (PCC) Mental Health Team Approach within a Program of All-Inclusive Care for the Elderly
Each interprofessional team has an assigned social worker who serves as a crucial link between the participant, participant's family, and interprofessional team. The primary role of the social worker in PACE and LIFE is that of performing assessments, reassessments, PCC planning, and counseling (U.S. Department of Health and Human Services, 2006). Social workers facilitate PCC by addressing complex living situations, family dynamics, and decision-making related to care and end of life, as well as providing concrete resources and many other components related to supporting a safe PCC plan for the participant's goal of continued community living. Social workers play a key role in collaborating with participants, families, and teams, as well as providing individual counseling/anticipatory guidance through emerging issues. In addition, social workers are often instrumental in addressing participants' mental health concerns by providing support and interventions, which can include coordinating with community resources, working with families, determining care plan adjustments, counseling, and ongoing case management.
Given the multiple stressors confronting participants, often associated with poor health, disability, low income, and mental illness, the interprofessional team will at times refer a participant to a LIFE Chaplain to conduct a spiritual assessment and provide pastoral support. Through empathetic listening, the Chaplain supports PCC through the use of life review or prayer and spiritual support. The Chaplain runs bereavement support groups for participants distressed over the death of a close family member or friend and a men's group to support men struggling to cope with the reality of being men with human weaknesses. The Chaplain is called on to assist enrolled participants facing a disturbance in their belief system that often arises from a personal crisis or sudden change in their physical condition. Participants who are strengthened by their faith are receptive to this powerful additional component to the LIFE program's overall approach.
Person-Centered Care Case Study
Ms. M. is a 69-year-old African American woman with a history of bipolar I disorder with depressive symptoms, general anxiety disorder, PTSD, compulsive eating disorder, complicated grief after the loss of her husband, and misuse of alcohol and opiate medications. Her medical history includes: type 2 diabetes mellitus, mitral valve disorder, hypertension, obesity, functional incontinence, gastric bypass surgery, and pressure ulcers. Her original trauma can be traced to the pain she experienced during childhood when her parents separated, which led to her being forced to move in with relatives where she was repeatedly molested. These traumatic childhood experiences impaired her ability to appreciate her own bodily integrity. It was during this period of sexual abuse that she developed a compulsive eating disorder.
Ms. M. has been enrolled in LIFE for more than 14 years. Early in her enrollment, she had two hospitalizations related to SMI, including an opiate drug overdose. Since that time, the MHT has been working with her. A PCC plan was implemented with the participant, her daughters, her primary care provider, and MHT to address her SMI and substance misuse. Her goal was to avoid opiate drugs and stabilize her mood disorder so as to allow her to remain in the community. APNs worked closely with her, providing problem solving therapy, early recognition of exacerbations of her illness, and medication management. A geropsychiatrist addressed triggers that could lead to exacerbations and collaborated with her team on her care. Social work also engaged her in life skills training. She was referred to an accessible community-based Narcotics Anonymous® group, and she was engaged in Bible study and bereavement groups run by the Chaplain. This multifaceted approach was negotiated and renegotiated over the years with the participant based on her personal preferences and goals. When asked about the mental health and PCC she receives, she responded that “because of LIFE my mental health conditions do not rule my life anymore.” She is able to live her life with limited interference from her mental health conditions and receives the support she needs.
PCC is at the core of quality mental health care. Meeting participants and assisting them in identifying appropriate relevant mental health goals important to them entails understanding the root of their mental health conditions. The population served by LIFE represents a socially and economically vulnerable group. As a program for dual-eligible (i.e., Medicare/Medicaid) older adults who meet criteria for nursing home placement, LIFE's participants often have limited resources to remain in the community. Participants partner with LIFE to facilitate addressing concerns that are relevant to each individual to foster the appropriate use of community resources to meet his/her health care needs through an interprofessional team approach. Older adults with SMI and substance misuse issues, facing isolation from family and community, are increasingly joining PACE, with goals of living in the community as they age. The case presented herein describes a typical psychiatric/mental health issue encountered by PACE participants. As organizations that provide comprehensive social and medical services, PACE programs are becoming a key element of the social safety net for older adults with significant psychiatric/mental health issues in the community.
The decades' long dismantlement of the long-term and state psychiatric hospital system has created a service care and residential deficit, which PACE model programs are increasingly being recruited to fill. Even in places with well-supported public mental health infrastructure, older adults with mental and physical health issues often find themselves too frail and sick to be adequately cared for by a system designed to meet the needs of younger adults.
Providing PCC to individuals with SMI often requires awareness of personal trauma and substance misuse treatment. PCC requires the engagement of participants, their family, and the interprofessional team to meet their mental health needs. The interprofessional team approach in PACE offers a comprehensive PCC model, particularly when compared to long-term hospitalization/institutionalization. Successfully addressing the needs of nursing home–eligible older adults with SMI and substance misuse requires further development and testing of person-centered mental health models within PACE, along with continuous education and training of the interprofessional PACE workforce to facilitate safe and supported community living for older adults with dual diagnosis. Additional lessons learned from the case study include: (a) the need to institute a PCC mental health model of trauma-informed care for this vulnerable population; (b) PCC psychotherapeutic approaches to treatment of SMI and substance misuse are effective; and (c) an interprofessional team is essential in meeting the complex person-centered mental health needs of older adults.
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Person-Centered Care (PCC) Mental Health Team Approach within a Program of All-Inclusive Care for the Elderly
|Person-Centered Mental Health Care||Mental Health Team Members Involved||Process|
|Assessment for presence of mental health condition||Primary care nurse practitioner (NP)||Makes referrals to mental health team (MHT) with concerns.|
|Social work||Assesses family dynamics, resources available to participant, and cognition.|
|Psychiatric/mental health (PMH) NP||Mental status assessment and collaborates with participant on goal setting for serious mental illness (SMI) or substance misuse issues.|
|Psychiatrist||Collaborates with PMH NP to develop plan of care consistent with participant's goals.|
|Chaplain||Completes a spiritual assessment to identify areas of strength.|
|Development of person-driven, goal-oriented care plan based on participant's preferences||Interdisciplinary team||Each team member works with the participant to identify person-centered goals and develops a care plan with the participant to meet his/her goals.|
|Ongoing review of participant's goals||Interdisciplinary team||Every 6 months, or when a significant change in condition occurs, the participant's goals are reviewed and updated or revised.|
|Care supported by interprofessional team with the participant as an integral team member||Dependent on the participant's goals in which team members engaged||Each team member is responsible for ongoing assessments and working with the participant to pursue his/her goals. Recommitment and patience are often needed during the course of care.|
|One primary lead health care team member||Primary care NP||Ongoing primary care with each participant to address participant's goals; coordinates with the PMH NP to address participant's SMI and substance misuse issues.|
|Continual information sharing and integrated communication||Interdisciplinary team||The interdisciplinary team is onsite with daily face-to-face meetings and ongoing e-mail communication.|
|Continual updating of the PCC plan with the participant||Interdisciplinary team||Occurs every 6 months, or when a significant change in condition occurs or the participant has expressed new goals to the interdisciplinary team.|