Abstract
Purpose: Although declines in memory and attention are hallmark symptoms of Alzheimer’s disease (AD), noncognitive symptoms are prevalent. Over 80% of individuals will experience neuropsychiatric symptoms, which complicates symptom profiles. Research indicates a community-integrated response to dementia crisis can reduce negative consequences attributed to crisis including increased caregiver burden, increased health care costs, and premature institutionalizations.
Design and methods: The Kansas Dementia Crisis Bridge Project is a multidisciplinary collaboration to provide direct support in critical situations to reduce psychiatric rehospitalizations. Coordinators provided counsel and dementia education to families throughout critical period of acute neuropsychiatric symptoms, facilitated professional involvement, and provided crisis prevention planning through crisis review. The Neuropsychiatric Inventory Questionnaire and Geriatric Depression Scale were used to measure the impact of neuropsychiatric symptoms and Bridge interventions on patient and caregivers.
Results: The Bridge project significantly reduced patient anxiety, depression, resistance to care, impulsive behavior, verbal outbursts, and wandering. Caregivers reported significantly reduced anxiety, apathy, resistance to care, and less distress over patient neuropsychiatric symptoms. Caregivers also reported increased confidence in managing difficult behaviors, and the project effectively reduced or resolved neuropsychiatric crisis. The project delayed nursing home placement for community-dwelling patients.
Implications: Crisis support models like the Bridge project reduce strain on care-delivery systems by incorporating nonpharmacological interventions, assisting families with communication, and reducing family distress during symptom crises. Although much of AD research focuses on disease-modifying medical interventions, aging and care systems in the state must simultaneously move towards dependency-modifying care interventions.
Decision Editor: Rachel Pruncho, PhD
Key Words: Dementia, Neuropsychiatric, Psychiatric, Neuropsychological, Assessment
Nationally, 5.4 million Americans have Alzheimer’s disease (AD) and receive care from 14.9 million caregivers who dedicate 17 billion hours of care, valued at $202 billion (Alzheimer’s Association, 2011). Total costs for health care and long-term care for people with AD and other dementias are projected to increase from $183 billion in 2011 to $1.1 trillion in 2050 (Alzheimer’s Association, 2011). Between 2000 and 2030, the number of U.S. older adults will increase by 104%, largely due to aging baby boomers—of whom 10 million of the 78 million will eventually develop AD or other dementia (Alzheimer’s Association, 2011). In the state of Kansas, over 53,000 people have AD and require care from 146,190 caregivers (Alzheimer’s Association, 2011). Discovering new ways to deliver cost-efficient and effective clinical service to this rapidly growing segment of the population is one of the country’s greatest social challenges.
Although declines in memory and attention are considered hallmark symptoms, estimates show 80%–95% of individuals with AD or a related dementia face behavioral and affective complications (Callahan et al., 2006; Lyketsos, Lopez, Jones, Fitzpatrick, Breitner, & DeKosky, 2002), such as changes in mood, personality, and psychiatric symptoms (Cummings & Victoroff, 1990; Strauss & Pasupathi, 1994). Neuropsychiatric symptoms, such as depression, anxiety, agitation, psychosis, and hallucinations/delusions, become more common as dementia progresses (Johnson, Watts, Chapin, Anderson, & Burns, 2011). These individuals are at high risk for dementia-related psychiatric complications that endanger the individual with secondary illness and injury. These complications have been associated with severe impairments in activities of daily living, premature disability, more severe behavioral problems (Starkstein, Jorge, Petracca, & Robinson, 2007), more rapid cognitive decline, earlier institutionalization, poor quality of life, and are most strongly associated to caregiver burden and depression (Gallagher et al., 2011; Lyketsos et al., 2002). The personal costs to individuals with dementia are incalculable. A typical patient with later stage AD is discharged from nursing home care with many unmet psychosocial needs and reenters in what is described as a system of “revolving-door care” (Callahan et al., 2006). Also, many long-term care facilities label behavioral consequences without thorough assessment (Callahan et al., 2006). This labeling often results in unnecessary psychiatric hospitalizations and nursing home evictions, adding trauma for the person and the family. Psychiatric symptoms also complicate caregiver burden and grief, and caregivers report that these complications are the single most distressing manifestations of AD (Pollock et al., 2007). Costs and extraordinary requests from caregivers, including time spent away from work and family and money paid to scarce professional daycare centers, lead to significant investment burdens that stress local systems of care (Alzheimer’s Association, 2011).
The presence of comorbid dementia and psychiatric symptoms create complex, enduring syndromes that make this patient group difficult to treat in traditional mental health and geriatric treatment settings. Potential contributors to the symptoms include ineffective caregiver strategies, environmental stressors, undiagnosed medical complications such as delirium, and undiagnosed or undertreated psychiatric disorders, largely depression (Bass, Clark, Looman, McCarthy, & Eckert, 2003; Callahan et al., 2006; Montgomery & Kwak, 2008; Specht, Bossen, Hall, Zimmerman, & Russell, 2009; Teri, McCurry, Logsdon, & Gibbons, 2005). The syndromes are difficult to resolve due to a lack of expertise in diagnosis and treatment of neuropsychiatric symptoms of organic origin among mental health providers and a lack of appropriately coordinated care of these clients from the aging and mental health systems. Commonly, the frustration caused by these complicated dementia cases results in practitioners making an artificial distinction between mental health symptoms and organic symptoms. Practitioners fail to recognize symptoms as disease-created vulnerabilities that demand thorough assessment and individualized interventions. These artificial distinctions have severe negative consequences, including unnecessary hospitalization, reliance on chemical restraints, earlier institutionalization, and higher risk of long-term care evictions (Silverstein & Maslow, 2006).
Multidisciplinary expertise is needed along with mental health support that can adequately address the psychiatric symptoms rooted in organic brain disease. There exists a severe shortage of professionals with competence in both geriatrics and mental health. In the United States, there is only one geriatric psychiatrist for every 10,000 individuals over age 75 (American Association for Geriatric Psychiatry). Only 3.6% of master-level social work students specialize in aging; only 3% of psychologists define their primary area of practice as geriatrics; and only 28% of all psychologists report having any training in gerontology (American Association for Geriatric Psychiatry). Although 98 nursing programs prepare Geriatric Nurse Practitioners (GNP), the number of graduates is insufficient to meet current demand. According to the National Sample Survey of Registered Nurses, less than 5% of NPs in the United States are certified in geriatrics (Silva-Smith & Kothoff-Burrell, 2009). The neuropsychiatric symptoms of dementia require expertise in both geriatrics and mental health, a dual competency that is severely limited in a system that supports compartmentalization of these competencies.
Results from AD neuropsychiatric intervention literature strongly suggest that a team-based collaborative intervention with caregivers during a dementia-related psychiatric crisis provides critical care coordination that limits the worsening of the immediate emergency and prevents subsequent crises that unfold later. In the PREVENT study, a care manager was integrated into a primary care setting (Guerriero Austrom et al., 2004; Boustani et al., 2005; Callahan et al., 2006). The case manager worked with primary care delivery teams to develop a standardized protocol to identify, monitor, and treat neuropsychiatric symptoms of dementia. During a 12-month period, 153 patients received care manager support, where the average number of contacts was 14.4 with 50% of all contacts being face-to-face. The PREVENT intervention resulted in a 7-point improvement on the Neuropsychiatric Inventory Questionnaire (NPI-Q) and demonstrated significant improvement in caregiver distress. Other findings from PREVENT included improvements in quality of care and satisfaction with care. The PREVENT intervention was designed to adapt to patient and caregiver needs, connect them to appropriate referrals for diagnosis and treatment, assist them with resource acquisition, educate and counsel families, and promote collaboration among all care providers.
In the 2005 Star-Caregivers study, 47 family caregivers and care recipients with AD received support and specific curriculum-based education focused on understanding and managing challenging behaviors over an 8-week period compared to 48 who received routine medical care (Teri et al., 2005). Master-level counselors or social workers conducted these sessions in community settings. With the help of care consultants, caregivers identified the three most distressing behaviors to serve as targets for their work. Star-Caregivers used a daily behavior diary, which empowered caregivers to assess and examine the impact of their own interventions (Teri et al., 2005). Through daily diaries, caregivers reported the ability to recognize improvements in either frequency of behavior, severity, or caregiver reactivity. Researchers also found decreased caregiver self-reported depression and subjective burden and improvements in quality of life. Follow-up contact was made at both 3 months and 6 months in order to further understand study impact (Teri et al., 2005).
Other studies such as the Cleveland Alzheimer’s Managed Care Project and the Iowa Project to Build a Seamless Service Delivery System used care consultants in efforts to improve client outcomes (Bass et al., 2003; Specht et al., 2009). The Cleveland project integrated Alzheimer’s Association staff with health care services provided by a large managed care system, and the Iowa Project integrated a nurse care manager into an eight-county aging service agency. Both projects showed significantly decreased caregiver distress and improvements in caregivers’ ability to manage persons with the disease.
These studies are among many that show positive outcomes when care coordination given during a dementia-related psychiatric crisis (Gallagher-Thompson & Coon, 2007; Gitlin, Reever, Dennis, Mathieu, & Hauck, 2006; Mittelman et al., 1995; Mittelman, Ferris, Shulman, Steinberg, & Levin, 1996; Pinquart & Sorensen, 2006; Whitlatch, Zarit, & von Eye, 1991; Zarit & Femia, 2008). Interdisciplinary collaboration across the health care and home placements prevents unnecessary psychopharmacological interventions, hospitalization, and institutionalization that often worsen behavioral issues (Callahan et al., 2006). Decisive system changes can provide integrated care for families and individuals facing the behavioral challenges of dementia. Without more comprehensive care, these families will be at increased risk for inadequate, more intrusive, and higher cost care and treatment.
The current study was motivated by a 2008 report from the Alzheimer Association’s Heart of America Chapter titled The Geriatric Psychiatric Health Care Shortage: A Summary of a Community Crisis. This report outlined how dementia care was affected by systemic shortages of trained mental health professionals. This shortage exacerbates the dementia-related neuropsychiatric crisis cascade of nursing home placement and then later nursing home eviction due to the inability of the health care system to recognize organic behavioral symptoms as dementia-specific. The State of Kansas has the highest nursing home placement in the nation, suggesting an overutilization of these specialty care settings (Houser, Fox-Grage, & Gibson, 2009). Without sufficient training to recognize and treat dementia-specific behavioral symptoms, the costs to the state increase. The Bridge project was a pilot project to examine a potentially cost-effective mechanism of screening in local Area Agency on Aging during crisis in order to prevent unnecessary nursing home placement and provide needed support to caregivers and families. We hypothesized that in a coordinated care intervention treatment group, we could document significantly fewer rehospitalizations post-discharge (at a two-month follow-up) and reduction in the number of long-term care evictions from placement prior to hospitalization.
Project objectives were to (1) create a collaborative team by training aging professionals and other mental health centers on dementia-specific neuropsychiatric complications; (2) provide crisis intervention and support to individuals and families facing AD with neuropsychiatric complications; (3) compare rehospitalization rates of standard care controls versus the intervention group in a nonrandomized concurrent control design; and (4) integrate findings for a model of dementia care into geriatric mental health planning for a state-managed Medicaid initiative, Kancare.
Methods
Overview.—The Kansas Dementia Crisis Bridge Project was a pilot project funded by the State of Kansas Department on Aging and the federal Agency on Aging. It was a nonrandomized concurrent control treatment outcome trial that compared standard of care for dementia-related neuropsychiatric crisis (hospitalized) versus a pilot coordinated care intervention project. Each of the two groups was recruited from distinct patient settings where people with AD-related neuropsychiatric crisis seek care.
The control group was recruited from a psychiatric hospital near Kansas city that draws its clients from a large catchment of both rural and suburban residents. The intervention group was recruited from four Area Agencies on Aging that encompass 18 rural and urban counties in the eastern Kansas. Both groups were followed concurrently through the history of this pilot project. The natural course of primary outcomes was followed: (1) hospitalization/rehospitalization and (2) change in long-term care facility status (placement, displacement/eviction, or death). In the intervention group, we were able to collect much more extensive secondary outcome measures that characterize the intervention group and treatment changes witnessed through the intervention and the six-month follow-up.
Partner Collaboration and Training.—This project was a multidisciplinary partnership among four professional agencies. The Kansas Department on Aging served as grant manager and facilitator in communicating key project information to decision makers. The Heart of America Chapter of the Alzheimer’s Association provided and supervised the Dementia Crisis Support Coordinators and played a key role in developing educational materials. Four participating Area Agencies on Aging integrated the Dementia Crisis Support Coordinators into existing staff, created systems to improve responses to those facing neuropsychiatric challenges, and improved collaboration on these cases. The University of Kansas collaborated on evaluation measures and provided statistical analysis. All agencies participated in dialog surrounding project details, emerging insights, and ongoing implications.
In the four service areas, approximately 19,000 people have AD. Two Area Agencies on Aging serve rural communities; the other two include both urban and rural communities. The average household income for the 18 counties is $37,668 with an average of 9.6% of families falling below the poverty line (U.S. Census Data, 2010). Although most of the counties have limited ethnic diversity, one urban county’s population is 27.3% African American and 21.7% Hispanic. Another county contains a Native American reservation, reflecting a 6.8% Native American population (U.S. Census Data, 2010). These partners collaborated on the creation of resources to advance cross-training of aging and mental health professionals and included a visual guidebook to explore possible considerations and responses to neuropsychiatric symptoms. A tool kit was also created that combined assessment tools, including the NPI-Q, and intervention guiding information from other states and national sources. These materials were distributed both individually and in training programs including the Area Agencies on Aging and mental health centers among other agencies.
Control Group.—The control group included participants who were hospitalized since October 1, 2009, in an inpatient geriatric psychiatric unit in a neighboring state serving the Kansas City metropolitan area. The Center serves patients diagnosed with dementia-related psychiatric behavior problems. Control participants had not previously received Bridge project services. The standard of care for these inpatients included psychiatric evaluation completed by a psychiatrist, physical assessment by an internist, and medication adjustments as indicated. Nursing staff monitored inpatient status and provided feedback to physicians regarding interventions. Social work primarily focused on discharge planning. The average length of hospitalization was 10 days. A physician trained in geriatric rehabilitation identified participants eligible for the control group through an electronic chart review. A Clinical Psychology graduate student (J. W.) made phone contact with these formerly hospitalized inpatients to follow up on their status regarding rehospitalization, emergency room use, and place of residence (nursing home placement, displacement, or eviction).
Intervention Group.—The two Dementia Crisis Support Coordinators were Licensed Master-level Social Workers with competence in aging and mental health and expertise in dementia, delirium, and depression in both individuals with dementia and caregivers. Dementia Crisis Support Coordinators were supervised by a Licensed Clinical Social Worker with extensive experience assisting families in dementia-related crises and participated in weekly supervision meetings. The roles of Dementia Crisis Support Coordinators included collecting specific information about the crisis (defined as any neuropsychiatric behavior that caused a disruption to the caregiving process) and encouraged caregivers to document crisis behaviors using a daily behavior diary (e.g., times, frequency, and variables surrounding the occurrence). Coordinators provided information and dementia education to families throughout the process to ensure families had access to informed choices. Coordinators also provided direct support, counseling, and advocacy during critical situations taking place within home settings, physician offices, hospital experiences, and during transitions to facilities in order to reduce psychiatric rehospitalizations. In addition, coordinators organized referrals for patients and families and facilitated the feedback loop to involved physicians and others (Alzheimer’s Association, 2009; Starkstein et al., 2007). The coordinators assisted in crisis intervention planning through crisis review and facilitated regular communication between the medical community, Area Agencies on Aging, mental health centers, geriatric psychiatric hospitals/units, and the Alzheimer’s Association.
Clients were referred to the program primarily by Area Agency on Aging staff, but referrals were also received from staff members at mental health centers, geriatric psychiatric inpatient units, adult protective services, and long-term care facilities. Referrals were then assessed for appropriateness for the project. If the primary crisis was more social in nature (e.g., financial needs or lack of identified caregiver) rather than neuropsychiatric, cases were directed into the traditional services of either the Alzheimer’s Association or other appropriate service providers. Once appropriate referrals were identified for the project, face-to-face initial assessments were conducted by the Dementia Crisis Support Coordinators, and in conjunction with families, they constructed a plan to address the presenting neuropsychiatric crisis that incorporated the intervention elements described earlier. Overall, 100 outreach visits to inform the professional aging, health, and mental health communities about the Kansas Dementia Crisis Bridge Project and neuropsychiatric challenges of the dementia population were made during the grant period.
Clinical Outcomes.—To measure the impact of neuropsychiatric symptoms and the effectiveness of the Kansas Dementia Crisis Bridge Project intervention on both persons with AD and caregivers, both standardized and exploratory descriptive clinical measures were administered. Dementia Crisis Support Coordinators collected outcomes in the intervention group during the crisis intervention. A Clinical Psychology graduate student collected outcomes in the standard care control group by phone after hospital discharge.
Primary outcomes included: (1) frequency of hospitalization; (2) change in long-term care facility status (placement, displacement/eviction, or death); (3) risk of eviction from nursing homes or long-term care facilities; and (4) number of evictions and number of evictions prevented. For the standard care control group, the frequency of rehospitalizations following discharge from geriatric psychiatric hospitals was determined by a standardized telephone query: (a) “Has your loved one been psychiatrically hospitalized since dismissal from the inpatient geriatric psychiatric hospital?” (b) “Since dismissal from the inpatient geriatric psychiatric hospital, has your loved one been seen at an emergency room for any behavioral or affective problems including resistance to care, wandering, impulsive or inappropriate behavior, agitation, depression/withdrawal, anxiety, or paranoia?” Risk of eviction was determined by a standardized telephone query: (c) “Has your loved one been evicted from a long-term care facility since his/her dismissal from the inpatient geriatric psychiatric hospital?” For the Bridge crisis intervention group, the rehospitalization and eviction rates were assessed during clinical contact using analogous questions, although they were not scripted. All participants (intervention or control) were considered at risk for eviction from a nursing home or long-term care facility if they faced imminent threat of eviction through verbal and/or written communication with family regarding the intolerability of participants’ behavioral/affective symptoms of dementia. In the event of death following the intervention or discharge from an inpatient geriatric psychiatric unit, information was collected through direct contact with family (telephone or in person).
Secondary outcomes were administered to caregivers pre- and post-intervention and included: (1) NPI-Q (Cummings, Mega, Gray, Rosenberg-Thompson, Carusi, & Gornbein, 1994) given to caregivers to measure both severity of patient neuropsychiatric symptoms associated with dementia and the caregiver distress associated with each specific symptom. The NPI-Q was also incorporated into assessment recommendations in the tool kits for broader use. (2) The impact of dementia symptoms on activities of daily living, such as eating, bathing, dressing, safety, completing household chores, keeping appointments, managing expenses, family relationships, and socializing with friends, were evaluated pre- and post-intervention. These questions were based on the Functional Impairment Measure (Hamilton, Granger, Sherwin, Zielezny, & Tashman, 1987). (3) The number of hospitalizations, psychiatric interventions (e.g., pharmacological and social services interventions), home-based changes, physician visits due to behavioral or affective issues, emergency room visits, and contact with police or safety services during the six-month period prior to the Bridge intervention were included in the pre-intervention assessment. (4) Caregiver confidence in addressing neuropsychiatric symptoms was assessed pre- and post-intervention with the single question item: “How confident are you in managing the troubling symptoms?” (5) At baseline evaluation, the patient and caregiver levels of insight into the extent of the dementia-related symptoms and their impact on the current crisis was rated by Dementia Crisis Support Coordinators on a scale of 0 to 7. (6) Geriatric Depression Scale was administered to caregivers pre- and post-intervention (Sheikh & Yesavage, 1986).
Statistical Analysis.—Cross-sectional comparisons of quantitative variables (e.g., age and education) were made with t tests for independent groups; Chi-square was used for categorical variables. Pre- and post-intervention changes within the intervention group were tested using repeated measures ANOVA.
Results
Standard Care.—The standard care control group consisted of 52 AD patients previously hospitalized in an acute geriatric psychiatric facility outside the targeted area. The mean participant age was 82.42±8.61, and over half of participants were women (N = 29, 55.8%). The majority of participants in this group were from urban locations (N = 38, 73.1%). Demographic information for the standard care control group is reported in Table 1. Only 5.8% of these individuals reported psychiatric rehospitalizations following hospital discharge. Additionally, a small percentage of patients and caregivers used Alzheimer’s Association-sponsored resources and services (1.9%) or other support services (3.8%). Of the total participants in the standard care control group, over half (N = 27, 51.9%) were reported as deceased when contacted by Kansas Dementia Crisis Bridge Project researchers.
Table 1.
Demographics
| Intervention (N = 77) | Control (N = 52) | |
|---|---|---|
| Mean age (SD) | 79.26 (1.17) | 82.42 (8.61) |
| Gender (% male) | 37.7% | 44.2% |
| % rural/% urban | 50.6%/49.4% | 26.9%/73.1% |
| % participant death | 6.0% | 51.9% |
| Rehospitalizations (6 months) | 1.2% | 5.7% |
| Long-term care displacement | 5.2% | <1% |
Intervention.—Primary enrollment efforts occurred between January 2010 and March 2011; 178 people were referred to the Bridge project during that period. The Bridge project enrolled 93 people, 46 residing in urban areas and 47 in rural areas. Sixty-nine referrals to the Bridge project did not involve neuropsychiatric crisis and thus were referred to existing dementia services. Most of these cases, although not meeting Bridge project criteria, would not have been referred to dementia services without increased awareness of available dementia services brought to community partners by the Dementia Crisis Support Coordinators. Sixteen people were referred to and contacted by Dementia Crisis Support Coordinators but rejected participation in the Bridge project. However, many people who declined participation were open to discussing challenges and obtaining information and suggestions over the phone. The Dementia Crisis Support Coordinators also provided 79 case consultations through assessment, intervention considerations, and recommendations to the already involved community professionals. Although not counted among official Bridge project cases, these consultations were a valuable and positive aspect of the project by providing opportunity for education and building competence and confidence among involved professionals, an important objective of the project.
Initial assessments with families enrolled in the Bridge project were completed in participants’ homes: 73 individuals resided in home settings, and 20 individuals resided in long-term care settings. The number of home/facility visits made during the grant period was 201, with 736 follow-up calls made to families and to collateral contacts such as physicians. The average number of contacts (i.e., face-to-face interactions and follow-up telephone conversations) for each family was six. The time frame for contacts varied for each participant/caregiver dyad, with the shortest timeframe being 1 month and the longest timeframe being 6 months, depending on the time needed to resolve the crisis.
Of the 93 Bridge project cases, 77 participants with AD and caregiver dyads completed pre- and post-intervention data collection. For the remaining 16 cases, caregivers were either not available to participate or declined participation. The mean participant age was 79.3±10.2, and over half of participants were women (N = 48, 62.3%). Most caregivers were either children (N = 32, 41.6%) or spouses (N = 29, 37.7%) of the participants. The intervention group was comprised of participants from both rural (N = 39, 50.6%) and urban (N = 38, 49.4%) locations. Demographic information for the intervention group is reported in Table 1.
Secondary Outcomes.—On average, Dementia Crisis Support Coordinators assessed patients to have little insight (M = 1.9) into the psychiatric complications of dementia that contributed to psychiatric hospitalization when using a scale ranging from 0 to 7, with 0 representing no insight and 7 representing significant insight. Caregivers were assessed to have greater insight, with an average report of 4.7.
Dementia Crisis Support Coordinators interviewed caregivers at pre- and post-intervention to measure the functional impact of neuropsychiatric symptoms on caregiving activities during the dementia crisis. Functional impact was rated on a scale of 1 to 7 (with 7 being severely negative). In the pre-intervention period, participants reported that all caregiving activities were affected by the neuropsychiatric symptoms. Notably, caregivers reported patient safety was their greatest concern during the crisis (M = 4.7). Caregivers also reported symptom impact on routine daily activities, such as feeding, dressing, bathing (M = 4.1), socializing (M = 3.6), completing chores (M = 3.4), managing expenses (M = 3.2), and keeping appointments (M = 3.1). Neuropsychiatric symptoms fell into two categories of significance. The symptoms that most affected these caregiving activities were anxiety (M = 4.0), resistance to care (M = 3.7), agitation (M = 3.7), and depression (M = 3.4). Significant but rated as less severe symptoms included impulsive behavior (M = 2.9), hallucinations (M = 2.8), verbal outbursts (M = 2.7), repetitive speech (M = 2.6), incontinence (M = 2.35), wandering (M = 2.31), paranoia (M = 2.22), apathy (M = 2.11), and problems sleeping (M = 2.01). The post-intervention assessment of the functional impact of neuropsychiatric symptoms on dementia crisis revealed that the Kansas Dementia Crisis Bridge Project significantly reduced all of the neuropsychiatric symptoms that had negatively affected caregiving in the pre-intervention assessment (all p < .001; Table 2).
Table 2.
Caregiver Ratings of the Functional Impact that Patient Psychiatric Symptoms Had on Caregiving (Scale Range 0–7)
| Pre-intervention | Post-intervention | |
|---|---|---|
| Anxiety | 3.96 (2.30) | 1.00 (1.02) |
| Apathy | 2.11 (2.50) | 0.33 (0.77) |
| Resist care | 3.68 (2.63) | 0.90 (1.06) |
| Impulsive behavior | 2.90 (2.44) | 0.88 (0.93) |
| Verbal outbursts | 2.65 (2.34) | 0.79 (0.89) |
| Depression | 3.40 (2.35) | 0.74 (0.95) |
| Problems sleeping | 2.01 (2.50) | 0.63 (0.88) |
| Hallucinations | 2.75 (2.49) | 0.60 (0.87) |
| Agitation | 3.68 (2.37) | 1.00 (1.02) |
| Incontinence | 2.35 (2.68) | 0.20 (0.71) |
| Repetitive speech | 2.61 (2.32) | 0.19 (0.85) |
| Paranoia | 2.22 (2.37) | 0.61 (0.90) |
| Wandering | 2.31 (2.73) | 0.68 (0.98) |
Note: All pre-post contrasts p < .001. Results based on repeated measures ANOVA. Higher scores indicate more negative perception.
Following intervention, caregiver ratings of symptom frequency on the NPI-Q showed significant reductions in all patient neuropsychiatric symptoms (F = 107.0, p < .001); see Table 3. Caregivers reported that patients experienced decreased irritability/lability, delusions, motor disturbances, nighttime behaviors (all p < .001), and disinhibition (p < .01). The NPI-Q also showed significantly reduced problematic appetite and eating behaviors among patients (p < .01) but nonsignificant reductions in elation/euphoria (p = .16).
Table 3.
Neuropsychiatric Inventory Questionnaire
| Patient symptom (scale 0 to 3) | Caregiver distress (scale 0 to 5) | |||
|---|---|---|---|---|
| Pre-intervention | Post-intervention | Pre-intervention | Post-intervention | |
| Total score | 15.88 (5.42) | 7.53 (3.40) | 23.32 (8.70) | 9.56 (5.02) |
| Delusions | 1.24 (1.16) | 0.44 (0.66) | 1.88 (1.79) | 0.50 (0.90) |
| Hallucinations | 1.03 (1.00) | 0.41 (0.56) | 1.41 (1.52) | 0.38 (0.74) |
| Agitation/aggression | 1.82 (1.11) | 0.79 (0.64) | 2.91 (1.73) | 1.24 (1.08) |
| Depression/dysphoria | 1.82 (0.87) | 1.12 (0.69) | 2.88 (1.12) | 1.44 (0.93) |
| Anxiety | 2.15 (0.74) | 1.24 (0.65) | 3.12 (1.39) | 1.44 (0.82) |
| Elation/euphoria | 0.09 (0.29) | 0.03 (0.17), n.s. | 0.00 (0.00) | 0.00 (0.00), n.s. |
| Apathy/indifference | 1.32 (1.15) | 0.68 (0.81) | 1.79 (1.61) | 0.85 (1.18) |
| Disinhibition | 0.85 (1.23) | 0.26 (0.57), p < .01 | 1.35 (1.94) | 0.38 (0.85), p < .01 |
| Irritability/lability | 1.68 (0.77) | 0.76 (0.65) | 2.59 (1.23) | 1.18 (1.06) |
| Motor disturbance | 1.68 (1.15) | 0.94 (0.85) | 2.18 (1.75) | 1.06 (1.07) |
| Nighttime behaviors | 1.06 (1.13) | 0.41 (0.70) | 1.59 (1.72) | 0.68 (1.22) |
| Appetite/eating | 1.15(1.13) | 0.44 (0.82), p < .01 | 1.62 (1.60) | 0.41 (1.02) |
Note: All pre-post contrasts p < .001, except where noted. Results based on repeated measures ANOVA.
The Bridge project delayed nursing home placement for community-dwelling patients at risk of placement. In 45 of the 93 cases, neuropsychiatric challenges placed the community-dwelling patients at risk of nursing home placement. In 24 of those 45 cases (53.3%), placement was delayed due to the Bridge intervention. Further, 14 of the 93 cases (15.1%) involved imminent risk of eviction from long-term care facilities because of neuropsychiatric challenges. In 10 of those 14 cases (71.4%), eviction was avoided due to the Bridge intervention.
Following intervention, caregivers demonstrated significantly reduced anxiety, verbal outbursts, impulsive behavior, apathy, and resistance to care (all p < .001); see Table 4. Caregivers also reported that preexisting physical conditions improved. The caregivers of patients in long-term care also reported decreased feelings of threat regarding patient eviction from long-term care facilities (F = 7.09, p < .01).
Table 4.
Caregiver Symptoms (Scale Range 0–7)
| Pre-intervention | Post-intervention | |
|---|---|---|
| Anxiety | 4.08 (2.29) | 0.99 (0.94) |
| Physical condition | 2.12 (2.37) | 0.44 (0.84) |
| Apathy | 0.83 (1.44) | 0.25 (0.75) |
| Resist care | 0.64 (1.23) | 0.21 (0.65) |
| Impulsive behavior | 1.06 (1.52) | 0.47 (0.73) |
| Verbal outbursts | 1.22 (1.57) | 0.46 (0.77) |
Note: All pre-post contrasts p < .001. Results based on repeated measures ANOVA.
The Bridge project also demonstrated improved caregiver reactions to neuropsychiatric symptoms. Following intervention, caregivers reported significantly less distress over patient symptoms of hallucinations, delusions, agitation/aggression, depression/dysphoria, anxiety, apathy/indifference, irritability/lability, motor disturbance, nighttime behaviors, problematic eating/appetite (p < .001), and disinhibition (p < .01). Caregivers reported significantly increased confidence in their ability to manage these difficult behaviors (F = 10.17, p < .01). Additionally, 79% of caregivers reported that the Kansas Dementia Crisis Bridge Project was effective in reducing or resolving the neuropsychiatric crisis.
Discussion
A primary aim of this nonrandomized concurrent control treatment trial was to gather pilot data for two outcomes: (1) frequency of rehospitalization and (2) change in long-term care facility status (placement, displacement/eviction, and death). However, a high rate of mortality in the standard care control group (51.9%) attenuated morbidity outcomes and thus recasts this discussion in terms of potential causes for the observed mortality. Although the standard care control group’s average age was higher than the intervention group’s (82.42 vs. 79.26), the more likely causes of the high observed mortality rates are increased comorbidity and increased crisis severity in the standard care control group. Certainly neuropsychiatric crisis is a well-understood risk for morbidity and mortality (Aalten, de Vugt, Jaspers, Jolles, & Verhey, 2005), but the disparate rates between the intervention and control groups was surprisingly larger than expected. Due to the limited scope of this project, we could not randomize participants. Therefore, we cannot determine whether the observed mortality difference between the intervention and control groups is due to preexisting conditions or severe neuropsychiatric conditions that caused a more rapid disease progression resulting in death.
Although we did not collect the number or quality of comorbidities within the hospitalized standard care control group (to limit staffing burden), we did collect comorbidity data in the intervention group. The level and magnitude of comorbidities in the intervention group was also high, especially the frequency of dual diagnosis: 31% of the patients had either prior diagnosis or indicators of preexisting mental health issues, and 34% of caregivers struggling to manage neuropsychiatric complications in patients had either a diagnosis or indicators of preexisting mental health issues. These rates are higher compared to general mental health prevalence (U.S. Surgeon General Report, 1999). Although the control may have been sicker per se, the intervention group also suffered from significantly high rate of comorbidity. In light of these results, we have begun developing specific educational curriculum for caregivers with mental health issues and for caregivers of people with dual diagnosis (dementia and a prior mental health diagnosis, most often depression). Overall, the high level of mortality and morbidity in these participants strongly reinforce the call for larger controlled trials emphasizing the integration of mental health and geriatric medicine research communities.
Secondary outcomes in the intervention group support the findings of other dementia intervention programs. The Bridge project significantly reduced patient anxiety, depression, resistance to care, impulsive behavior, verbal outbursts, and wandering. By providing crisis support to patients and families facing AD, a coordinated care intervention significantly reduced patient neuropsychiatric symptoms, rehospitalizations (at a two-month interval), and caregiver distress, as well as improved caregiver confidence in recognizing and addressing warning signs of possible psychiatric complications in AD. The project also delayed nursing home placement for community-dwelling patients. Finally, 79% of caregivers reported that the intervention was effective in providing support, education, and patient resources following dementia crisis and psychiatric hospitalizations. Caregivers reported significantly reduced anxiety, apathy, resistance to care, and less distress over patient neuropsychiatric symptoms. Caregivers also reported increased confidence in managing difficult behaviors, and the project effectively reduced or resolved neuropsychiatric crisis. Overall, the Bridge project reduced transitional family trauma associated with neuropsychiatric crisis, thus improving quality of life for patients with AD and their families.
An important revelation from the Bridge project was based on the simple pre-intervention question, “Do you believe that additional services would have helped reduce the symptoms that precipitated the recent crisis?” Researchers anticipated that the question would affirm participants’ need for increased services; however, 73% of caregivers responded ‘No’. Even though caregivers had good insight into the extent to which the neuropsychiatric crisis affected their lives, the caregiver denied wanting additional services. This changed dramatically by the post-intervention assessment where 79% of the caregivers affirmed that additional services were helpful. It appears that caregivers are often told that challenging behaviors and mood changes are characteristic of neuropsychiatric crises and are simply a normal part of AD and therefore they may interpret this information as no solutions to the crises are available. It is possible that caregivers are not told that negative symptoms associated with AD neuropsychiatric crises can be treated. The belief that appropriate solutions are unavailable may contribute to patterns of underutilization for respite and other support services and the imbalanced use of inpatient versus outpatient services. Increased competence among first-line professionals in educating families on available services has the potential for swaying this imbalance.
On a systems level, Bridge project agency partners reported improved services to clients. All four Area Agencies on Aging reported that the Bridge project added to their services for individuals with dementia. They further agreed that the Dementia Crisis Support Coordinators were an important part of their offices, and although they felt that the coordinators’ divided schedules were adequate, each agency expressed the desire for as much time as feasible. Future training of Area Agencies on Aging and mental health center staff to identify dementia-related psychiatric symptoms will expand competency in therapeutically addressing neuropsychiatric symptoms of AD and expand geriatric-specific mental health resources.
Crisis support models reduce some strain on the too few available systems by incorporating nonpharmacological interventions when possible, assisting families in communicating with geriatric psychiatric physicians/hospitals when needed, and supporting caregivers during the most distressing aspects of AD. Although much of AD research focuses on disease-modifying medical interventions, aging and care systems in the state must simultaneously move towards dependency-modifying care interventions. Also, new technologies of coordinated care must increase access to services aimed at preventing premature disability. Addressing dementia neuropsychiatric crisis needs that provoke long-term care placement or jeopardize placement can accomplish cost savings and improve outcomes through the use of clinical preventive services. When every use of state and federal dollars is challenged and families facing dementia neuropsychiatric crises stand at critical care decision crossroads, the Kansas Dementia Crisis Bridge Project and other collaborative care models remind us that fiscal responsibility can be matched with human responsibility. As an initial bridge between the state aging provider network and the mental health system, this intervention project provided a model that was successfully integrated into current and budding geriatric mental health expansion efforts across the State of Kansas.
Funding
This work was supported by the Administration on Aging (HHS-90AI0026 to Alzheimer’s Assocaition, Heart of America Chapter) and the National Institute on Aging (P30 AG035982) Russell Swerdlow is PI of the P30 Grant to the University of Kansas.
Acknowledgments
The authors thank Research Psychiatric Center, Dr. Steven Segraves, Dr. John Pro, and Stephan Jolly for their support of this project, in providing the control group and dedication to improve patient outcomes. Statistical analyses were conducted by David K. Johnson. The authors report no conflicts of interest.
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