The Effectiveness of an Environmental and Behavioral Approach to Treat Behavior Problems in a Patient with Dementia with Lewy Bodies: A Case Study

Abstract

This case describes and reports the effects of a multi-component collaborative intervention to treat difficult behaviors in a 79-year-old woman with dementia with Lewy bodies (DLB). To assess for cognitive status and disruptive behavior patterns, we collected a cognitive screen, history of presenting illness, and measures of behavior problems prior to the intervention. The intervention included 32 weekly 1-hour sessions with the patient, 1-hour sessions with the patient’s assigned caregiver and regular interactions with the patient’s family and medical treatment team. All sessions were conducted at the patient’s long-term residential care facility. We assessed behavior disturbances with the Cohen-Mansfield Agitation Inventory (CMAI). We assessed functional abilities with the Katz Activities of Daily Living (K-ADL), and assessed cognitive function with the Mini-Mental Status Exam (MMSE). At the closing session (week 32) caregiver ratings indicated significantly reduced scores on the CMAI (Baseline = 75 to Endpoint = 30) and maintenance in ADLs (Baseline=3 to Endpoint=3). Caregivers reported enhanced efficacy in treating behaviors and improvement in their relationship with the patient. Results demonstrate the benefits of a multi-component collaborative intervention, based on an enhanced environment and behavioral approach, in treating behavior problems related to DLB.

Introduction and Background

Dementia with Lewy bodies (DLB) is considered the second most prevalent dementia after Alzheimer’s disease (AD), comprising 15–25% of all dementias ^1–3. Core features include dementia, fluctuating consciousness, hallucinations, paranoid delusions, parkinsonism, and neuroleptic sensitivities ^{2, 3}. Hallucinations and delusions have been the most diagnostically specific neuropsychiatric symptoms (NPS) distinguishing DLB from AD ^{4, 5}. A recent study indicated significant levels of aggressive behaviors on the Cohen-Mansfield Agitation Inventory (CMAI) in DLB patients ⁵, with rates similar to that of AD patients.

NPS associated with DLB are very upsetting to family and facility caregivers ^{6, 7}. NPS leads to poor quality of life for patients and caregivers and contributes to psychiatric morbidity in caregivers if they do not feel effective in managing these symptoms ⁸. Therefore, finding effective techniques for managing NPS in DLB patients is a critical goal for clinicians and families.

Managing DLB related symptoms is complicated ⁹. Neuroleptics are most commonly used to managing agitated behaviors in dementia. However, these medications tend to be less effective in general ^10–12, and in DLB patients are particularly concerning because of their sensitivities to these medications ^{3, 13, 14}. Behavioral strategies are a viable alternative to medication management ^15–18. Successful models combine a behavioral approach, medical consultation, and family involvement. A number of reports suggest that of all the interventions available, behavioral models maybe the best available treatments for agitation in general dementia patients¹⁹. Interestingly, there are no studies or reports that study these behavioral approaches to address disruptive behaviors in DLB. Symptoms in DLB differ from AD and, therefore, treatment approaches may require further modifications to accommodate these differences. The purpose of this case study is to provide a descriptive report for professionals caring for DLB and to highlight the need for more evidence based interventions for treating DLB related problem behaviors.

Intervention: The Collaborative and Multi-component Approach

The SBHS was a demonstration project funded by the Substance Abuse and Mental Health Services Administration. The goal of the SBHS project was to develop and disseminate evidence-based treatments of depression and agitation into long-term care facilities. The SBHS collaborated with 14 facilities (6 board and care, 5 small to mid size long term care facilities and 3 skilled nursing facilities). The SBHS project was developed based on the chronic disease management model ²⁰.

This model includes several components:

1. provider training in the recognition and management of dementia and accompanying neuropsychiatric symptoms (NPS), which included five training modules and a follow-up training session provided in a group format;

2. consumer and family education about NPS;

3. improved coordination of care through: (a) assessment, (b) treatment tracking and monitoring of patient outcomes to the intervention, and (c) involving professional caregiving staff and family in the development and application of the intervention; and (d) better access to specialty services and collaboration between specialty care and primary care.

A care manager is a critical component of this model. The care manager provides training to staff, coordinates and provides assessments and treatments, facilitates family-staff-provider communication, and monitors patient progress. The care managers in the project included two licensed clinical social workers, one marriage and family therapist, and three clinical psychologists. DG’s care manager was a licensed social worker with over 4 years of interventions experience with children and adults.

Assessment of the Case Patient

The care manager conducted a baseline assessment, using the Folstein Mini Mental Status Exam (MMSE) to determine cognitive status²¹; the Katz-Activities of Daily Living (K-ADL) to assess DG’s ability to perform every day tasks, such as dressing, toileting, and feeding ²²; and the Cohen Mansfield Agitation Inventory (CMAI) to assess frequency and intensity of DG’s agitated behaviors ²³. In addition to these functional measures the care manager also assessed for potential triggers and consequences to DG’s disruptive behavior, using the Motivation Assessment Scale (MAS) ²⁴. She also completed the Reinforcer Assessment for Individuals with Severe Disabilities (RAIS-D) to identify pleasurable activities and objects, which she used in the intervention ²⁵. Finally, she completed the Pleasant Event Schedule (PES) to identify objects/activities for reinforcement of appropriate behaviors in the individualized intervention plan ²⁶. These measures were completed every two weeks for 32 weeks. All measures were used as clinical as well as empirical tools to assess and monitor behavior changes and may be suitable for use in many different clinical settings.

The care manager became the central liaison for all providers involved in the patient’s care, including primary care, psychiatrists, adult day health programs, and family members. However, the following sections will provide reports of her interactions primarily with DG, RM, and facility staff.

Results of Assessment

DG demonstrated severe impairment on the MMSE (0 out of 30). DG was able to identify common objects in her room (i.e., chair) and items in a coloring book (i.e., cat). The care manager also assessed typical day-to-day memory, and on most sessions DG indicated memory for the name of her primary professional caregiver and the care manager. However, DG was often not oriented to date, time, and place.

The CMAI identified the following target behaviors: hoarding, hitting, making strange noises and/or pushing away caregivers and previously described yelling, cursing, banging the walls and doors, and hallucinations. The MAS found that triggers to hitting, kicking and pushing away included: 1) attempts to help DG with ADL’s; 2) urinary tract infections; and 3) excess noise and activity on the floor. Caregivers reported decreasing their activities with DG because they believed her symptom of masked faces, i.e., flat affect, “furrowed” facial expression, indicated displeasure or anger. As a result, DG was left largely alone and understimulated (please see the Table for presentation of target behaviors and antecedents).

Table 1.

Assessment and Plan

Target Behaviors	Goals	Antecedent	Plan
Aggressive behaviors: Hitting, Kicking, and Pushing away	Reduce aggressive behaviors	Medical Cause While providing care, caregivers would attempt to administer ADL’s when she was not amenable Lack of information about dementia and DLB	Educate caregivers to look for medical causes. Educate caregivers about DLB and how to approach resident. Use of preference assessment to find ways to distract or increase pleasant activities. Educate caregivers on how to interpret resident’s behaviors
“unpredictable outbursts”: yelling, cursing, banging on walls and doors	Reduce unpredictable outbursts, increase CG’s self-efficacy	Medical cause Increased activity and noise on the floor	Educate caregivers to look for medical causes. Plan around excess activities and remove DG from the floor when crowded or noisy
Isolative	Increase stimulation and interactions with staff and other resident’s	Caregiver’s fear of engaging her and lack of information about DLB	Educate caregivers about DLB sx’s and difficulty with interpersonal functioning Conduct preference assessment and educate caregivers how to engage DG.

Intervention Plan

The care manager developed a clinical plan based on the cognitive, behavioral and environmental assessment (Table). An essential aspect of DG’s care plan involved psychoeducation about DLB to RM and residential staff. For example, it was important to teach the staff that DG’s cognitive status may fluctuate daily because of her DLB. In addition, staff were taught that DLB affected DG’s ability to interpret and respond to social situations appropriately, such as her persistent frown. Caregivers were instructed about using DG’s behavioral cues to determine optimal times to engage DG in dressing, brushing teeth, and bathing. For example, when DG raised her hand, this indicated DG was not ready for them to approach. Instead, the caregivers were taught to return later, and inform her that they were there to help her with an activity.

Caregivers learned to adjust their expectation that DG “actively” engage in activities and to broaden their understanding about the different ways in which people communicate and participate. For example, DG, communicated through her behaviors that instead of actively coloring she preferred to simply watch those around her color and draw, which could be considered a form of participation. When DG seemed to refuse an activity by shaking her head, pushing caregivers away, or deeper furrowing of her eyebrows, DG was communicating her desire to just observe. Finally, staff members were taught how to assess and manage DG’s symptoms, and monitor for any medical problems that could exacerbate her symptoms (i.e. UTI’s, dehydration, sleep deprivation, pain, etc.).

To increase DG’s activities, caregivers were educated that her flat/angry affect did not always indicate displeasure, but was related to her parkinsonism from DLB and to continue to engage her in activities despite her flat affect. Caregivers began to use this new knowledge about DLB to adapt their caregiving techniques/approaches to meet DG’s needs. They learned to become more sensitive, observant, patient, and flexible around providing care.

The MAS assessment indicated that DG’s target behaviors of yelling or hitting the door were motivated by DG’s need to escape from noisy or populated situations. Caregivers, were taught to ensure DG had a quiet and calm space, and were able to make continual adjustments in the environment to meet this need. They would either take her for a walk or take her to her room and turn on her favorite music.

The PES and the RAIS-D suggested that DG enjoyed the following pleasurable activities: gentle balloon tossing, rolling a ball on the floor for her to kick with her feet, drawing in a coloring book and watching others draw, naming pictures of animals, flowers, and other objects, folding clothes/laundry, writing down familiar names on a piece of paper, listening to soft music, and watching people dance. Caregivers began to introduce these activities as a way to distract or redirect DG when she was resisting care or getting upset. For instance, while bathing DG, they would often sing and dance around her when she became upset.

The care manager assisted with the implementation of care plans by providing updates and feedback to RM regarding the progress of the intervention and the consultation she provided the staff. RM was provided additional reference and background material about DLB to gain greater understanding of her mother’s symptoms. RM was also educated about how DG’s symptoms might impact her interactions with her caregivers.

Outcome

Scores on the CMAI decreased considerably, indicating a significant reduction in her agitated behavior due to the 32-week intervention (Figure 1). DG experienced several fluctuations on measures due to medical issues such as a UTI. On target behaviors, there were significant declines in verbal aggression (baseline=4, endpoint=1), hitting (baseline=4, endpoint=1), pushing (baseline=3, endpoint=1), hoarding (baseline=6, endpoint=1), and repetitious mannerisms (baseline= 6, endpoint=1) (Figure 2).

Figure 1.

Cohen-Mansfield Agitation Inventory (CMAI) Total Scores.*

^*Notes: 1) A total score of 30 would indicate that the client never showed any of the presented disruptive behaviors in the past week. A high of 120 points is possible. 2) Although outcome measures were acquired every two weeks, the figures demonstrate behaviors at the beginning of each month to facilitate data presentation.

Figure 2.

Change scores on target behaviors at baseline on the CMAI.

Scores: 1=Never, 2=Less than once a week, 3= One or two times a week, 4=Several times a week, 5=Once or twice a day, 6=Several times a day, 7=Several times an hour.

Informally, caregivers reported gaining significant knowledge of dementia, increased self-efficacy in managing DG’s behaviors, and increased pleasure in interacting with DG. Although DG continued to refuse care at times and to experience active hallucinations that caused her to yell, the staff felt more comfortable redirecting her. RM reported significant alleviation of her anxiety about her mother’s hallucinations and behaviors. RM also began to work in a more collaborative manner with the caregivers and felt that she was able to make more informed decisions about DG’s healthcare.

Discussion and Conclusion

DLB leads to significant distress in formal and informal caregivers and is among the most difficult disorders to manage. This case study demonstrates the effectiveness of a collaborative and environmentally driven approach for addressing agitation in DLB. This approach has been effective for use in assisted living facilities for Alzheimer’s disease patients ¹⁶, and this case report indicates the same may be true for patients with DLB. This case report shows that a combination of education, assessing the triggers for agitation and the consequences of that behavior can lead to an effective plan to help reduce and manage these troubling behaviors.

Finally, care managers and existing facility staff were quite diverse in their clinical training and indicate that the model used in this project may be suitable for a range of clinical practitioners. DG had demonstrated several aggressive behaviors that caregivers in both her facilities described as “care-resistant” and “intimidating.” These behaviors contributed to DG’s reduced quality of life due to the difficulty caregivers experienced in interacting with DG. Following implementation of the intervention, DG’s agitated behaviors decreased considerably and staff reported that management was far easier. This case study demonstrates the utility of a tailored empirically supported behavioral and environmental approach to addressing difficult behaviors in DLB.