Behavior management: It’s impact on dementia patients and caregivers

Review Article
*Suma P. Chand1
1Department of Psychiatry and Behavioral Neuroscience, Saint Louis University School of Medicine, MO, USA
DOI:http://dx.doi.org/10.24816/jcgg.2017.v8i1.01

  • Abstract
  • Full Text
  • References

Abstract

An 86-year-old Japanese woman presented with severe anemia and was diagnosed as mixed-type autoimmune hemolytic anemia (AIHA). Subsequently, although she did not show typical manifestations of systemic lupus erythematosus (SLE), she was diagnosed as SLE complicated with Sjögren’s syndrome and Greves’ disease. While AIHA occurs in 5-10% of SLE patients and SLE is the most common underlying condition of mixed-type AIHA, complication of mixed-type AIHA among SLE patients has not been studied yet. SLE mainly affects women of child-bearing age and is seldom diagnosed in elderlies and the present case is the oldest SLE patient presented with mixed type-AIHA reported so far in the literature, indicating that mixed-type AIHA may complicate in elderly SLE patients and thorough evaluation of the possibility of the complication is justified. She also exemplifies the notion that elderly SLE patients often present with manifestations different from those in younger patients.

Keywords:

autoimmune hemolytic anemia; mixed-type; systemic lupus erythematosus; elderly

Article Outline

  1. Introduction
  2. Behavior Management directed at Problem Behaviors in Patients with Dementia
  3. Behavior Management Directed at Problem Behaviors in patients with Dementia as well as Caregiver Wellbeing.
  4. Discussion and Conclusion
  5. References

Abstract

Behavioral and psychological symptoms of dementia (BPSD) lead to functional impairment in patients with dementia and caregiver distress. Non-pharmacological treatments of BPSD have gained increasing attention since the use of pharmacological methods has been found to be associated with negative consequences and risks. Behavioral management of BPSD is one of the non-pharmacological treatment approaches that has been utilized in psychosocial treatment programs. Behavioral strategies have also been used in the treatment of caregiver distress and depression.

This paper is based on a comprehensive search of literature in PubMed/MEDLINE and Scopus. It reviews the literature to evaluate the efficacy and utility of behavior management in helping with reduction of problem behaviors along with psychological distress in caregivers of patients with dementia. Evidence indicates that despite limitations in the studies, incorporation of behavioral management strategies into the care of patients with dementia is beneficial to caregivers as well as dementia patients.

KeyWords:

Dementia; behavioral and psychological symptoms; behavioral management; caregiver distress.

Specialty Area:

Psychology

1.Introduction

Behavioral and psychological symptoms (BPSD) of dementia affects up to 90% of all patients with dementia at some point in their illness1. These symptoms include agitation, depression, apathy, repetitive questioning, aggression, sleep problems, wandering, psychosis and a variety of socially inappropriate behaviors2.   Management of BPSD has become more complicated by the fact that risk and safety factors have been found to be associated with pharmacotherapy which has resulted in their use being limited3. Non-pharmacological interventions have been recommended as the preferred first line management for BPSD except in emergency situations where there are imminent dangers or safety concerns4, 5.

Caregivers of patients with dementia are particularly impacted by the neuropsychiatric symptoms of dementia and it has been found to be associated with caregiver distress, depression and burden6, 7, 8, 9.  This factor has often been implicated as the cause of early institutional placement of patients with dementia10.

Developing treatment programs that effectively target BPSD and also help with caregiver distress is a challenge. This can be more difficult in community settings where the primary caregivers are family members with diverse backgrounds. Research has indicated that nonpharmacological interventions, with multiple components, that are tailored to the needs of the patient and delivered by caregivers are efficacious in reducing the frequency and severity of BPSD as well as caregiver distress11. Similarly interventions for reducing caregiver distress that use structured training programs in problem solving skills which include the patient as well has been found to lead to more significant benefits in caregiver distress12, 13.

Behavior management includes a variety of behavioral interventions, such as problem solving, communication training, cognitive restructuring, token economy and individualized behavioral reinforcement strategies14. They typically include caregivers and utilize one or more of the behavioral strategies in a structured program. This paper examines the efficacy of behavior management in reducing problem behaviors in patients with dementia and reducing distress and burden in their care givers.  It is based on a search of literature in PubMed/MEDLINE (going back to1946) and SCOPUS (going back to 1960). The search terms used were “Dementia/psychology” “Dementia/therapy”, “Behavior Therapy” “Behavioral Symptoms”, “Behavior Management”, “Caregivers “Nursing Staff  “Randomized Controlled Trial” “Systematic review” and “Meta-Analysis”. The studies included: (i) were randomized controlled trials (ii) utilized behavior management strategies to modify BPSD (iii) utilized behavior management strategies to modify BPSD and also caregiver distress or depression.

Table 1: Summary of Studies of Behavior Management directed at Problem Behaviors of Dementia Patients

Study Number of Subjects BM Strategies Assessment

Tools

Intervention Length Follow up

 

Improvements  in DS & CGS
Teri et al., 199715 72 CGS & DS – Problem solving based on ABC paradigm.

– Increase in behavioral activation (using pleasant activities)

HDRS

CSDD

BDI

ZBI

9, 1 hour sessions over 9 weeks. At 6 months – Significant improvement of depression in DS.

– Significant improvement of depression in CGS.

Gormley et al., 200116 62 CGS & DS – Functional analysis based problem solving for aggressive behaviors. RAGE

BEHAVE-AD

ZBI

4 sessions (length of session not mentioned) over 8 weeks. Nil –  Trend towards reduction in aggressive behaviors noted.
Huang et al., 200317 59 CGS & DS. PLST and ABC paradigm based problem solving CMAI

AMSS

2 training sessions lasting 2 to 3 hours each and 2 weekly consultation calls over a total period of 4 weeks. At 3 months

&

At 4 months.

– Behavior problems in DS

– Self efficacy in CGS

Huang et al., 201321 129 CGS & DS PLST and ABC paradigm based problem solving CPS

CS

AMSS

PAB Sub-scale of CMAI

2  training sessions lasting 2 to 3 hours each over 2 weeks and monthly consultation for 6 months. At 3 months

&

At 6 months

– Behavior problems in DS

– Aggressive behavior probability

– Better preparedness, competence and self-efficacy in CGS

Stanley et al., 201322 32 CGS  & DS Peaceful Mind, a CBT based intervention for anxiety NPI

RAID

PSWQ

GAI

GDS

QOL-AD

12 weekly sessions for 3 months and  up to 8 brief telephone calls after that till end of 6 months At 3 months

&

At 6 months

– Anxiety rated less by clinicians.

– Less distress in CGS in relation to DS anxiety

Spector et al., 201323 50 CGS & DS CBT for anxiety adapted for DS RAID

CSRI

HADS

QOL-AD

NPI

CSDD

QCPR

10 sessions over 15 weeks At 15 weeks

&

At 6 months

– Anxiety in DS showed decreasing trend.

– Depression in DS

Teri et al, 200525 25 Assisted Living facility staff

31 DS

– Problem solving based on ABC paradigm.

– interaction pattern or communication skills

GDS

CAS

RMBPC

ABID

NPI

SSCQ

8 weeks 6 months – Problem behaviors in DS

– Depression in DS

– Anxiety in DS

– Job satisfaction in CGS

– Less adverse impact and  reaction by CGS to DS problem behaviors.

BM- Behavior Management; DS – Dementia Subjects; CGS – Caregiver Subjects

HDRS- Hamilton Depression Rating Scale; CSDD – Cornell Scale for Depression in Dementia; BDI-Beck Depression Inventory; ZBI-The Zarit Burden Inventory; BEHAVE-AD- Behavioral Pathology in Alzheimer’s Disease rating Scale-; RAGE-The Rating Scale for Aggressive Behavior in the Elderly; CMAI- Cohen-Mansfield Agitation Inventory; AMSS-Agitation Management Self-efficacy Scale; CPS-Caregiver Preparedness Scale; CS-Competence Scale; AMSS-Agitation Management Self-efficacy Scale; PAB- Physically aggressive behaviors Subscale; NPI-A-Neuropsychiatric Inventory-Anxiety subscale; RAID-Rating Anxiety in Dementia scale; PSWQ-Penn State Worry Questionnaire-Abbreviated; GAI- Geriatric Anxiety Inventory, GDS-Geriatric Depression Scale, QOL-AD- Quality of Life in Alzheimer’s disease; PHQ9-Patient Health Questionnaire; CSRI-Clinical Services Receipt Inventory; HADS-Hospital Anxiety and Depression Scale; QCPR-Quality of Caregiver and Patient Relationship; CAS- Clinical Anxiety Scale; RMBPC- Revised Memory and Behavior Problems Checklist; ABID- Agitated Behaviors in Dementia; SSCQ -Short Sense of Competence Questionnaire

Table 2: Summary of Studies of Behavior Management directed at Problem Behaviors of Patients with Dementia and Wellbeing of Caregivers

Study Number

of Subjects

BM Strategies Assessment Tools Length of treatment period Follow up Improvements  in Dementia Subjects (DS) & and Caregiver Subjects (CGS)
Burgio et al., 200327 140 CGS& DS – Problem solving

– Cognitive restructuring for CGS.

RMBPC

PAC

LSNI

CES-D

Three hour workshop followed by 16, 1 hour intervention sessions for 12 months. Nil

Assessments were made at 6 month point of treatment.

– Reduced problem behaviors in DS

– CGS distress

– Leisure activity satisfaction in CG.

 

Hebert et al., 200328 158 CGS Group format and psycho educative with CGS being taught behavior management skills.

– Problem solving based on ABC paradigm.

– Cognitive reappraisal

– Cognitive reframing.

– Seeking social support

RMBPC

ZBI

SSTAI

BRAS

15, 2 hour weekly sessions for 15 weeks. Nil – Problem behaviors in DS improved but did not reach significance.

– CGS desire to institutionalize DS.

– CGS reactions to problem behaviors of DS

 

Gonyea et al., 200631 80 CGS Group format and psycho educative with CGS being taught behavior management skills.

– Problem solving based on ABC paradigm for DS behavior problems.

– Behavioral activation to increase pleasant activities for DS.

– Strategies to reduce stress for CGS, e.g. relaxation exercise.

– Increasing pleasant activities for CGS

NPI

ZBI

90 minute weekly sessions for 5 weeks. Nil

 

– Problem behaviors in DS improved but did not reach significance.

– CGS reactions to problem behaviors of DS

Moniz- Cook et al, 200832 113 CGS & DS – Problem solving based on ABC paradigm.

– Stress coping for CG

 

GHQ

GPC

HADS

Intervention period of 18 months.

4 weekly intervention home  visits. Further visits based on clinical judgment.

Nil.

Assessments were carried out at 6, 12 and 18 months, during the treatment period.

– Problem behaviors of DS.

– Depression in CGS

– Anxiety in CGS

Gitlin et al., 201034 272 CGS & DS pairs – Problem solving based on ABC paradigm. Frequency of problem behaviors

CG upset on scale of 0 to 10

CG confidence on scale of 0 to 4

CES-D

ZBI

Eleven home/telephone contacts (length of contact time not mentioned) over a period of 16 weeks Two months. – Problem behaviors of DS

– Depression in CGS

– Distress and burden in CGS

– CGS skills in managing problem behaviors of DS.

 

BM- Behavior Management; DS – Dementia Subjects; CS – Caregiver Subjects

RMBPC- Revised Memory and Behavior Problem Checklist; PAC- Positive Aspects of Caregiving; LSNI – Lubben Social Network Index; CES-D- Center for Epidemiological Studies–Depression Scale; ZBI-Zarit Burden Inventory; SSTAI-Spielberger State-Trait Anxiety Inventory; BRAS-Bradburn Revised Affective Scale; ISSB-Inventory of Socially Supportive Behavior; IPSI- Ilfeld Psychiatric Symptoms Index; NPI-Neuropsychiatric Inventory; GHQ-3- General Health Questionnaire; GPC-Gilleard Problem Checklist; HADS-Hospital Anxiety and Depression Scale; PCI-Perceived Change Index;

2.Behavior Management directed at Problem Behaviors in Patients with Dementia

A number of randomized controlled trials (RCT) have been carried out which have involved training caregivers in the application of behavioral strategies to reduce problem behaviors in patients. Some of the studies have also examined the impact of the behavioral training on caregiver well-being.  Teri et al developed the community based Seattle protocol which involves training caregivers in the behavioral approach in problem solving using the ABC (antecedent-behavior-consequences) paradigm and the application of strategies to improve mood of patients.  In an initial study the two behavioral interventions were compared for efficacy to an equal duration care condition and a wait list control condition15.  Patients and caregiver pairs were assigned to one of the four conditions and assessed at pre and post treatment and again at 6 month by interviewers blinded to treatment assignment. Caregiver depression and burden was also assessed. Seventy two patient- caregiver pairs completed the study. Patients in both behavioral conditions showed significant improvement, in depression symptoms which was maintained at 6 months.  Caregivers in the two behavioral management conditions also showed significant improvement in their own depressive symptoms while those in the other two control conditions did not. This study highlights the fact that although the intervention did not target the caregivers directly it resulted in significant reduction of caregiver depression levels. It is likely that the increased skill in patient management and the improved depression in the family member accounted for the positive caregiver results15.  Despite the small sample size, aspects of the study such as blinded interviewers, randomization and control conditions add significance to the study findings.

Gormley et al., 16 carried out a RCT to evaluate the efficacy of a four session community based behavior management training program for family caregivers which targeted aggressive behaviors in 62 patients with dementia. The training program consisted of dementia education and training of caregivers in functional analysis based behavioral interventions targeting care recipient’s aggressive behaviors. The control group had a similar number of sessions with discussions on care related issues. Post treatment assessment was carried two weeks after the intervention by a researcher blinded to group assignment. No significant differences in aggression scores were found between behavior management and control groups but adjusting for baseline differences indicated a trend towards a reduction in aggressive behavior in the behavior management group. There was no significant difference in caregiver burden.  The relatively small sample size and brief behavioral program could account for the limited reduction of aggressive behaviors in the patients. However the complex nature of aggression in dementia which is an interaction of the neurobiological, environmental and psychological factors could also have contributed to the modest results.

Huang et al., carried out a RCT on 59 family based care givers in the community utilizing an intervention program which involved functional analysis to help identify negative environmental stressors that could be triggering problem behaviors and provision of appropriate environmental support17. The intervention based on the Progressively Lowered Stress Threshold Model (PLST) was tailored to the individual needs of the caregivers in the community 18, 19, 20. The intervention consisted of two in-home care giving training sessions, followed by weekly telephone consultations for two weeks. The training sessions included a thorough assessment of the patient, their environmental safety and stimuli. The investigator worked with the caregiver to identify target behaviors and developed plans of action based on the PLST model. The weekly phone calls evaluated progress and further guidance was provided. The control group received educational materials and social telephone follow-ups every two weeks. Follow up evaluations carried out in the third and fourth month indicated that in the case of the experimental group there was significant improvement in caregivers’ self-efficacy in managing behavior problems and in the number of the problem behaviors in the dementia subjects. The physically aggressive behaviors showed a decreasing trend but did not reach significance. The results of this RCT indicate positive outcomes for both the patients and their caregivers. Larger sample size and longer period of program application and follow up would have been helpful to determine if the benefits were maintained or even improved more over time in the treatment group.

Huang et al., carried out a second study along the same lines as his earlier study but had follow up consultations for a longer period of 6 months21.  It was a single blinded RCT with 129 caregiver and patient dyads to examine the efficacy of the individualized, home-based training program.  The control group received written educational materials and social telephone calls. The training program was guided by the Progressively Lowered Stress Threshold (PLST) model and the Antecedent Event-Behavior-Consequence Analysis (ABC) theory. The training program for the treatment group consisted of two sessions of training by research nurses which was followed by monthly consultations for 6 months. Assessments were made for patients’ behavioral problems and caregiver preparedness, competence, and self-efficacy in managing behavioral problems at baseline and then at 2 weeks, 3 months and 6 months after the program was completed.  The program resulted in significant reduction of overall problem behaviors and the probability of physically aggressive behavior for patients in the intervention group decreased from 0.27 to 0.12. Family caregivers who received the training were found to have better preparedness, competence and overall self-efficacy at 3 months than those in the control condition. The growth rate by treatment interaction effect was significant for caregiver competence and overall self-efficacy for managing behavioral problems. The study has some limitations, such as, the outcome variables being reported by the caregivers and same research nurse who carried out the intervention also being involved in the outcome assessment. However this study has demonstrated that an ABC paradigm and PLST based behavior management program carried out for a period of 6 months can decrease physical aggressiveness in the home setting. This has been reported in studies conducted in institutions and rarely reported in community based programs 17.

Stanley et al., carried out a pilot RCT to test the efficacy of Peaceful Mind, a Cognitive Behavior Therapy (CBT) based intervention program for anxiety in 32 patients with mild or moderate dementia22. Modifications were made from standard CBT, such as simplified materials, collaterals, more repetition and practice protocol, to accommodate the needs of patients with dementia.  The intervention included up to 12 weekly in-home sessions for 3 months and up to 8 brief telephone sessions.  In the control usual care condition the patients received diagnostic feedback. Evaluators blinded to intervention assignment carried out outcome assessments. Measures were administered at baseline, 3 months and 6 months. At 3 months clinicians rated patients receiving Peaceful Mind as less anxious, and patients rated themselves as having higher quality of life; collaterals reported less distress related to loved ones’ anxiety. However, no positive effects were noted on patient self-reported worry, anxiety, or depression or on collateral depression. There was no change in results at the 6 month point of the intervention. The lack of positive results on the self-report measures may be linked to the basic problem of self-reporting in patients with dementia, while the lack of reduction in collateral depression could have been because there was a relatively low level of depression in this sub-group to start off with. In addition the collaterals were not always the primary caregivers and there was considerable variability amongst them in the amount of time spent with the care recipients. The fact that there was no positive impact at 6 months may also indicate a need for a longer intervention period.

Spector et al., also carried out a pilot single blind RCT to evaluate the efficacy of a modified CBT protocol for anxiety in patients with mild to moderate dementia23. The protocol was based on Beck and Clark’s cognitive model of anxiety24. The caregivers played a role in supporting the patients in implementing the CBT strategies.  Fifty patients were randomly assigned to CBT plus treatment as usual and treatment as usual condition. Assessments were carried out by research assistants at baseline, 15 weeks (end of treatment) and at 6 months follow up in the area of anxiety, depression, behavioral disturbances, and cognitive functions of dementia patients.  Additional assessments were made in both the patient and caregiver in the areas of anxiety and depression, quality of life and patient caregiver relationship. At 15 weeks there was a reduction in anxiety in the patients which came close to significance and was maintained at 6 months.  There were significant improvements in depression and it remained significant at 6 months. There were no significant results in any of the other areas for the patient or the caregiver. This study like the study by Stanley et al., 22 is a pilot study and shows promise but requires a larger study to determine efficacy.

Teri et al., carried out a study in assisted living facilities where the staff was trained in the application of behavioral strategies to manage behavior problems exhibited by patients with dementia25. Four assisted living residences were randomly assigned to the behavioral program and usual on-site routine training which included general information on the needs of older adults and how to work with memory impaired residents. The training for the intervention group emphasized teaching staff the ABCs (activators, behaviors, and consequences) of behavioral distress in order to alter the sequence of events that initiate or maintain resident-care problems. It also emphasized the staff’s interaction with the resident. Post training, residents in assisted living settings where the staff received the training showed clinical and statistically significant improvement which was reflected on measures of resident behavior problems, depression, and anxiety; residents in control conditions did not show improvement but in fact deteriorated. Staff with behavioral training reported higher job satisfaction and significantly less adverse impact and reaction to residents’ problems.  The improvements were maintained at the six month follow up. The positive findings in this study with limited power is encouraging and indicates the feasibility of training staff in assisted living facilities to manage and care for patients with dementia (many of whom live in assisted living facilities in the earlier stages of the disease), using effective behavioral treatment strategies.

3.Behavior Management Directed at Problem Behaviors in patients with Dementia as well as Caregiver Wellbeing.

Teri et al., studied the outcome and impact of their behavior management program in another RCT where 95 family caregivers and care recipients with Alzheimer’s disease were assigned to either the behavioral program or the control condition of routine medical care26.  Behavior management consultants consisted of a diverse group of health care professionals who were provided training in the behavioral program. The consultants met with caregivers in their homes for 8 weekly sessions, followed by 4 monthly phone calls. The initial sessions focused on teaching caregivers the rationale and use of the A-B-C problem solving approach using examples of behavior problems the caregivers had faced. Later sessions focused on increasing pleasant events, improving caregiver communication and increasing care giver support. The monthly phone calls continued to build on the training and also supported caregivers in developing plans and strategies for new problems they faced. Masked interviewers conducted assessments at baseline, after treatment, and after 6 months.

The results indicated that there were significant reductions in the frequency and severity of care recipient problem behaviors and improved quality of life. The caregivers showed significant improvement in depression, burden and reactivity to behavior problems in the care recipient. The improvement was maintained at the 6 month follow up.  The study indicates that community consultants can be trained to implement behavioral interventions with caregivers and the outcome is positive for both the care recipients and care givers at the six month follow up. However, examining the level of ongoing supervision would have been useful to determine the level of supervision required to maintain the impact. Another important aspect of such a program if it is to be applied for long periods of time is to take into consideration factors needed to ensure that intervention integrity is maintained, especially as there is decline in the patients’ functioning.

Burgio et al., developed a manualized intervention involving functional analysis, problem solving, communication skills and cognitive restructuring which was delivered to 70 caregivers in the experimental group through workshops and in home training sessions27.  Another 70 caregivers were placed in a minimal support control condition involving brief supportive phone calls and generic educational materials.  The intervention consisted of a 3 hour workshop, followed by 16 in-home treatment sessions over a 12 month period and therapeutic phone calls between home visits. The sessions were aimed at providing information and developing caregiver skills in the area of behavior management techniques. It also involved teaching care givers skills of applying problem solving to themselves to increase pleasant events, enhance social support and self-care. Cognitive restructuring was utilized to encourage more benign appraisals of behavior problems and to find meaning and personal gain where possible.  The assessments were carried out at the 6 month point of the intervention and the results indicated that both interventions had a significant impact on caregiver distress since both groups of caregivers reported being less distressed by the problem behaviors and also increased satisfaction with their leisure activities.  Both interventions also resulted in reduced problem behaviors in the two groups. The investigators took into consideration the race of the subjects and found that the Caucasians responded better to the minimal support condition and the African Americans responded better to the skills training condition. Differential responses were also linked to whether the caregivers were spouses or not. The results support the beneficial impact of the behavior management program on the patients and the caregivers although the authors were unable to blind the study personnel to group assignment. This is a problem in psychosocial interventions and worth addressing. This study also draws attention to the need to take into consideration other factors such as race, culture and relationship to care recipient during the planning and application of interventions.  An assessment at the end of the 12 month period of treatment and also a further follow up assessment would have been useful to ascertain the durability and impact of the intervention over a longer period of time.

In another multi-center RCT 158 caregivers were randomized to the intervention and control groups in 12 successive waves28. While the control group attended the traditional support groups the intervention group attended the psycho educative program developed by Folkman et al., 29 extended over 15 two-hourly weekly group sessions. The program consisted of two main components. The first component targeted improving cognitive appraisal of problem situations so that they shifted appraisal from a global stressor appraisal to a more specific appraisal of the stressor. Caregivers were encouraged to distinguish between changeable and unchangeable aspects of the stressor, leading to a better choice of coping strategies.  The second component which was the coping component focused on the strategies of problem solving, reframing and seeking social support. With regard to problem solving, caregivers were taught the steps that have to be taken to clarify a target behavior that was changeable, utilizing behavioral techniques and finding an appropriate solution to help reduce the frequency and intensity of the problem behavior. The reframing strategy involved training caregivers to recognize their dysfunctional thinking and work on modifying them so that the emotional distress associated with the dysfunctional thinking reduces 30. A third coping strategy consisted of care givers seeking social support.  Assessments were carried out at baseline and at the end of the intervention period by assessors who were blinded to group placement. Results indicated that the intervention resulted in a significant reduction in the caregiver reactions to disruptive behaviors. There was also a reduction of behavior problems reported by the caregivers in the intervention group with the difference between the study and control group approaching significance. This RCT has shown significant benefits to the caregivers using a cost effective group approach. Their improved coping was also reflected in the significantly lesser desire to institutionalize the dementia subjects as compared to the control group. The positive trend of reduction in behavior problems in the patients with dementia is encouraging and it is possible that a longer intervention period may have produced improved and significant results. Similarly a follow up assessment after 6 months or more would have also provided more insight into the durability of the treatment. The findings may also indicate that the method of intervention delivery, that is, a purely group format may be less effective.

Gonyea et al., carried out a RCT with 80 caregivers which involved group training sessions for caregivers in the experimental group in a multi-component behavioral intervention extending over 5 weeks31. The intervention was aimed at reducing problem behaviors in patients with dementia, care giver distress and burden. It involved training caregivers in functional analysis and behavioral activation. Increasing caregivers’ and care recipients’ involvement in pleasant activities was an important component and caregivers were also guided on strategies to manage their own distress.  The control group received a similar period of group psycho education. The outcome results based on assessments at the end of the intervention and six weeks after baseline assessment indicated that the training resulted in significant reduction in caregiver distress associated with problem behaviors but there was no reduction in global burden. There was a trend in the direction of greater reductions of problem behaviors in patients but it did not reach significance.  The assessors however could not be blinded to the intervention condition at the post intervention assessment. This RCT is nevertheless important since it suggests that a brief cost effective targeted group intervention based on the principles of behavior therapy can be beneficial for caregivers and care recipients.

A RCT was carried out in the United Kingdom with 54 experimental and 59 control families who provided care to individuals with dementia living at home over a period of 18 months32. The care givers in the experimental group were given guidance by trained community mental health nurses (CMHN) in problem solving and stress-coping. The CMHN conducted the intervention over four consecutive weekly in-home visits. Subsequent visits were based on clinical judgment.  The CMHN had clinical supervision throughout the 18 month period of the study. The control group received care as usual from the community mental health nurses. Assessments were carried out at 6, 12 and 18 months. Results indicated that while cognition declined in all the dementia subjects the problem behaviors reduced in the experimental group and the mood of the caregivers showed improvement at 12 months and 18 months.  The control group on the other hand reported increased problem behaviors in the patients, reduced coping resources and worsening of depression in the caregivers. The eighteen month period of intervention with assessments at intervals is an important strength of this study. Improvement in caregiver mood was seen much later at 12 months and it was maintained at 18 months.  It is possible that the intervention being less intensive after the initial 4 weeks had a role to play in the slower improvement which was nevertheless maintained at 18 months. It has also been suggested that behavior management delivered over a longer period of time can be protective and prevents mood deterioration33 which was seen in this study. Attrition and inadequate protocol adherence by the CMHN were some of the problems associated with the study.

Gitlin et al., carried out a RCT on 272 caregivers and dementia subjects where the caregivers in the experimental group had up to 11 home/telephone contacts over a period of 16 weeks by health professionals34. The problem behaviors were conceptualized as being a consequence of interacting factors which could be patient based (unmet needs, discomfort/pain, incipient medical condition), caregiver-based (stress, communication style) and environment-based (clutter, hazards). The training helped caregivers to develop the skills to identify and eliminate, reduce or prevent the problem behaviors. The control group received no intervention. There was significant reduction of problem behaviors in the patients at the end of the intervention at 16 weeks and again at 24 weeks. Results indicated improved caregiver skills in managing the problem behaviors in the patients as well as decreased depressive symptomatology, burden and upset with problem behaviors overall. Caregiver benefits were noted at 16 weeks and again at 24 weeks. In the case of the caregivers in the control group there was a worsening in their wellbeing and their management abilities. This study utilized a targeted approach using a targeted measurement as well as intervention so that they identified and treated problem behaviors that was most salient to the caregivers. This approach is in keeping with a client centered and individualized approach which enhances intervention efficiency. However a longer period of intervention is likely to have been more effective as indicated by the fact that there was a trend showing improvement in communication at the end of the intervention but it did not reach significance at 24 weeks. Similarly, depression in caregivers showed significant improvement at 16 weeks but failed to reach significance at 24 weeks. Longer period of follow up assessments would have also been useful in bringing to light long term outcomes and durability of the treatment program.

4.Discussion and Conclusion

Almost all the studies reviewed have incorporated functional analysis or the ABC paradigm of problem solving as one of the strategies in the multi-component behavior management programs. The other strategies that were incorporated included behavioral activation and improving communication skills of caregivers.  In the studies where the behavior management training programs incorporated training for caregivers in order to improve their well-being, cognitive restructuring, increasing pleasant activities and seeking of social support were used.

The length and number of training sessions, follow up consultation, format of training, and assessment tools has varied from study to study. Studies that have used a greater number of training and follow up/consultation sessions have reported better results. For example, Gromley et al., used a 4 session behavior management program which did not produce a significant reduction in the problem behavior targeted and also in caregiver burden16. Similarly significantly better results were reported by Huang et al., 21 when the training sessions were followed by monthly consultations for 6 months versus follow up consultations for only two weeks17. This is in keeping with earlier reports that successful interventions of BPSD have typically utilized more than 6 sessions or 9 to 12 intervention sessions35, 12.  Studies that have used a group format for training the caregivers in behavior management have been noted to not be as effective in reducing BPSD or improving caregiver well-being28, 31. This fits in with the fact that dyadic interventions involving the patients and their caregivers have been reported to be important in bringing about positive results for BPSD36, 12 and this could explain the reduced efficacy of the group format.

In the studies that focused on the BPSD alone some of the studies also found that it had a beneficial impact on the caregivers. The studies have assessed different areas of caregiver well-being and some reported increased caregiver efficacy in managing the problem behaviors17, 21, reduced depression15, and distress associated with the BPSD22, 25. Others have found that there was no change in areas like depression22, 23, burden16 and quality of life23. In the studies that focused on both the patients and also the caregivers all the studies reported benefits for the caregivers, such as reduced distress27, 32, 34 , burden34 depression 32, 34 , leisure activity satisfaction27, reduced adverse reactions to the BPSD28, 31, and reduced desire to institutionalize the patient28. Factors, such as the dyadic format of sessions with caregiver and patient, sufficient number of intervention sessions and follow up consultations as well as individualized planning and application of strategies are all factors that have been noted to contribute to beneficial outcomes for both patients and caregivers.

Treatment of behavior problems in Dementia is complex because of the progressive nature of the disease and the fact that the behavior problems have at their core the declining efficacy of brain functions. The problem behaviors can also be triggered and/or exacerbated by the physical as well as the psycho-social environment. As such the psycho social intervention for BPSD will need to be individualized and modified depending on the different stages of the disease and also the setting in which the patient resides. The typical management of the dementia patient is multi-faceted and a variety of treatment strategies have to be utilized. The research in the area of behavior management despite limitations shows promise and indicates that it is an intervention that is useful and effective which can be incorporated in the care of patients with dementia and also their caregivers at the same time.

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  6. Kales HC, Chen P, Blow FC, Welsh DE, Mellow AM.  Rates of clinical depression, diagnosis, functional impairment, and nursing home placement in coexisting dementia and depression. Am J Geriatr Psychiatry 2005; 13(6): 441-449.
  7. Black W and Almeida O. A systematic review of the association between the behavioral and psychological symptoms of dementia and burden of care. International Psychogeriatrics 2004; 16: 295–315.
  8. Van Den Wijngaart MA, Vernooij-Dassen MJ, Felling AJ. The influence of stressors, appraisal and personal conditions on the burden of spousal caregivers of persons with dementia. Aging Ment Health 2007; 11:626-636.
  9. Pinquart M., Sorensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a metaanalysis. Psychol Aging 2003; 18: 250–267.
  10. Gaugler JE, Kane RL, Kane RA, Newcomer R. The Longitudinal Effects of Early Behavior Problems in the Dementia Caregiving Career. Psychology and Aging 2005; 20(1): 100-116.
  11. Brodaty H., Arasaratnam C. Meta-analysis of nonpharmacological inteventions for neuropsychiatric symptoms of dementia. American Journal of Psychiatry 2012; 169: 946-953.
  12. Brodaty H, Green A, Koschera, A. Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society 2003; 51: 657–664.
  13. Schulz R, O’Brien A, Czaja S, Ory M, Norris R, Martire L et al. Dementia caregiver intervention research: In search of clinical significance. The Gerontologist 2002; 42: 589-602.
  14. O’Neil ME, Freeman M, Christensen V, Telerant R, Addleman  A,  Kansagara D. A systematic evidence review of non-pharmacological interventions for behavioral symptoms of dementia. VA Evidence-based synthesis program reports. 2011. Department of Veterans Affairs: Washington (DC): 1-75.
  15. Teri L., Logsdon R G, Uomoto,J et al. & McCurry, S. (1997). Behavioral treatment of depression in dementia patients: A controlled clinical trial. Journal of Gerontology Series B: Psychological Sciences. 1997; 52: P159–P166.
  16. Gormley, N., Lyons, D., & Howard, R. Behavioural management of aggression in dementia: a randomized controlled trial. Age and Ageing 2001; 30(2): 141-145.
  17. Huang HL, Lotus Shyu YI, Chen MC, Chen ST, Lin LC.A pilot study on a home-based caregiver training program for improving care-giver self-efficacy and  decreasing the behavioural problems of elders with dementia in Taiwan. International Journal of Geriatric Psychiatry 2003; 18: 337- 345.
  18. Gerdner L, Hall G, Buckwalter K. Caregiver training for people with Alzheimer’s based on a stress threshold model. Image J Nurs Scholarship 1996; 28:241–246.
  19. Hall G. Care of the patient with Alzheimer’s disease living at home. Nurs Clin North Am 1988; 23:31–46.
  20. Hall G, Buckwalter K, Stolley J. Standardized care plan: Managing Alzheimer’s patients at home. J Gerontol Nurs 1995; 21:37–49.
  21. Huang, Huei-Ling, Li-Min Kuo, Yu-Shu Chen, Jersey Liang, Hsiu-Li Huang, Yi-Chen Chiu, Sien-Tsong Chen, Yu Sun, Wen-Chiun Hsu, Yea-Ing Shyu. A Home-Based Training Program Improves Caregivers’ Skills and Dementia Patients’ Aggressive Behaviors: A Randomized Controlled Trial. American Journal of Geriatric Psychiatry 2013; 21(11): 1060-1070.
  22. Stanley MA, Calleo J, Bush AL, Wilson N, Snow AL, Kraus-Schuman, C et al.  The Peaceful Mind program: A pilot test of a cognitive–behavioral therapy–based intervention for anxious patients with Dementia. The American Journal of Geriatric Psychiatry 2013; 21(7): 696-708.
  23. Spector A, Charlesworth G, King M, Lattimer M, Sadek S, Marston L et al. Cognitive-behavioural therapy for anxiety in dementia: pilot randomised controlled trial. Br J Psychiatry. 2015; 206(6):509-516.
  24. Beck AT, Clark DA. An information processing model of anxiety: automatic and strategic processes. Behav Res Ther 1997; 35: 49–58.
  25. Teri L, Huda P, Gibbons L et al. STAR: A dementia-specific training program for staff in assisted living residences. Gerontologist 2005;45:686–693.
  26. Teri L, McCurry SM, Logsdon R, Gibbons LE. Training community consultants to help family members improve dementia care: a randomized controlled trial. Gerontologist. 2005;45(6):802–11
  27. Burgio LD, Stevens A, Burgio KL, Roth DL, Paul P, Gerstle J.  Teaching and maintaining behavior management skills in the nursing home. Gerontologist 2002; 42: 487-496).
  28. Hebert R, Levesque L, Vezina J, Lavoie JP, Ducharme F, Gendron C, Preville M, Voyer L, Dubois MF: Efficacy of a psychoeducative group program for caregivers of demented persons living at home: a randomized controlled trial. J Gerontol B Psychol Sci Soc Sci 2003; 58:S58–S67.
  29. Folkman S, Chesney M, McKusick L, Ironson G, Johnson DS, Coates TJ. Translating coping theory into an intervention.  In: Eckenrode J, editor. The social context of coping . New York: Plenum Press; 1991, p 239–260
  30. Beck AT, Rush AJ, Shaw BF, Emery G. Cognitive therapy of depression. New York: Guilford Press; 1979.
  31. Gonyea JG, O’Connor MK, Boyle PA. Project CARE: A randomized controlled  trial of a behavioral intervention group for Alzheimer’s disease caregivers. The Gerontologist 2006;46(6):827-832.
  32. Moniz-Cook E, Elston C, Gardiner E, Agar S, Silver M, Win T. Can training community mental health nurses to support family carers reduce behavioural problems in dementia? An exploratory pragmatic randomised controlled trial.  International Journal of Geriatric Psychiatry 2008; 23: 185-191.
  33. Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist 2002; 42: 356-372.
  34. Gitlin LN, Winter L, Dennis MP, Hodgson N, Hauck W. Targeting and managing behavioural symptoms in individuals with dementia: A  randomised trial of a  nonpharmacolgical intervention. Journal of the AmericanGeriatrics Society 2010; 58:1465–74.
  35. Selwood A, Johnston K, Katona C, Lyketsos C, Livingston G. Systematic review of the effect of psychological interventions on family caregivers of people with dementia. J Affect Disord 2007; 101:75-89.
  36. Ayalon, L., Gum, A. M., Feliciano, L., & Areán, P. A. Effectiveness of  nonpharmacological interventions for the management of neuropsychiatric symptoms in patients with dementia: a systematic review. Archives of Internal Medicine 2006; 166(20): 2182-2188.

References

  1. CerejeiraJ, Lagarto L, Mukaetova-Ladinska EB. Behavioral and psychological symptoms of dementia. Frontiers in Neurology 2012; 3(73):1–21

  2. Lyketsos CG, Carrillo MC, Ryan JM, Khachaturian AS, Trzepacz P, Amatniek J, Cedarbaum J, Brashear R, Miller DSl. Neuropsychiatric symptoms in Alzheimer’s disease. Alzheimers Dement 2011; 7(5):532-539.


  3. Steinberg  M, Lyketsos CG. Atypical antipsychotic use in patients with dementia: Managing safety concerns. The American Journal of Psychiatry 2012; 169(9):  900–906.


  4. American Geriatrics Society. Five things physicians and patients should question. In: Choosing wisely. ABIM Foundation, 2013.


  5. National Institute for Health and Care Excellence. Dementia:  supporting people with  dementia and their carers in health and social care. 2012.


  6. Kales HC, Chen P, Blow FC, Welsh DE, Mellow AM.  Rates of clinical depression, diagnosis, functional impairment, and nursing home placement in coexisting dementia and depression. Am J Geriatr Psychiatry 2005; 13(6): 441-449.


  7. Black W and Almeida O. A systematic review of the association between the behavioral and psychological symptoms of dementia and burden of care. International Psychogeriatrics 2004; 16: 295–315.


  8. Van Den Wijngaart MA, Vernooij-Dassen MJ, Felling AJ. The influence of stressors, appraisal and personal conditions on the burden of spousal caregivers of persons with dementia. Aging Ment Health 2007; 11:626-636.


  9. Pinquart M., Sorensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a metaanalysis. Psychol Aging 2003; 18: 250–267.


  10. Gaugler JE, Kane RL, Kane RA, Newcomer R. The Longitudinal Effects of Early Behavior Problems in the Dementia Caregiving Career. Psychology and Aging 2005; 20(1): 100-116.


  11. Brodaty H., Arasaratnam C. Meta-analysis of nonpharmacological inteventions for neuropsychiatric symptoms of dementia. American Journal of Psychiatry 2012; 169: 946-953.


  12. Brodaty H, Green A, Koschera, A. Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society 2003; 51: 657–664.


  13. Schulz R, O’Brien A, Czaja S, Ory M, Norris R, Martire L et al. Dementia caregiver intervention research: In search of clinical significance. The Gerontologist 2002; 42: 589-602.


  14. O’Neil ME, Freeman M, Christensen V, Telerant R, Addleman  A,  Kansagara D. A systematic evidence review of non-pharmacological interventions for behavioral symptoms of dementia. VA Evidence-based synthesis program reports. 2011. Department of Veterans Affairs: Washington (DC): 1-75.


  15. Teri L., Logsdon R G, Uomoto,J et al. & McCurry, S. (1997). Behavioral treatment of depression in dementia patients: A controlled clinical trial. Journal of Gerontology Series B: Psychological Sciences. 1997; 52: P159–P166.


  16. Gormley, N., Lyons, D., & Howard, R. Behavioural management of aggression in dementia: a randomized controlled trial. Age and Ageing 2001; 30(2): 141-145.


  17. Huang HL, Lotus Shyu YI, Chen MC, Chen ST, Lin LC.A pilot study on a home-based caregiver training program for improving care-giver self-efficacy and  decreasing the behavioural problems of elders with dementia in Taiwan. International Journal of Geriatric Psychiatry 2003; 18: 337- 345.


  18. Gerdner L, Hall G, Buckwalter K. Caregiver training for people with Alzheimer’s based on a stress threshold model. Image J Nurs Scholarship 1996; 28:241–246.


  19. Hall G. Care of the patient with Alzheimer’s disease living at home. Nurs Clin North Am 1988; 23:31–46.


  20. Hall G, Buckwalter K, Stolley J. Standardized care plan: Managing Alzheimer’s patients at home. J Gerontol Nurs 1995; 21:37–49.


  21. Huang, Huei-Ling, Li-Min Kuo, Yu-Shu Chen, Jersey Liang, Hsiu-Li Huang, Yi-Chen Chiu, Sien-Tsong Chen, Yu Sun, Wen-Chiun Hsu, Yea-Ing Shyu. A Home-Based Training Program Improves Caregivers’ Skills and Dementia Patients’ Aggressive Behaviors: A Randomized Controlled Trial. American Journal of Geriatric Psychiatry 2013; 21(11): 1060-1070.


  22. Stanley MA, Calleo J, Bush AL, Wilson N, Snow AL, Kraus-Schuman, C et al.  The Peaceful Mind program: A pilot test of a cognitive–behavioral therapy–based intervention for anxious patients with Dementia. The American Journal of Geriatric Psychiatry 2013; 21(7): 696-708.


  23. Spector A, Charlesworth G, King M, Lattimer M, Sadek S, Marston L et al. Cognitive-behavioural therapy for anxiety in dementia: pilot randomised controlled trial. Br J Psychiatry. 2015; 206(6):509-516.


  24. Beck AT, Clark DA. An information processing model of anxiety: automatic and strategic processes. Behav Res Ther 1997; 35: 49–58.


  25. Teri L, Huda P, Gibbons L et al. STAR: A dementia-specific training program for staff in assisted living residences. Gerontologist 2005;45:686–693.


  26. Teri L, McCurry SM, Logsdon R, Gibbons LE. Training community consultants to help family members improve dementia care: a randomized controlled trial. Gerontologist. 2005;45(6):802–11


  27. Burgio LD, Stevens A, Burgio KL, Roth DL, Paul P, Gerstle J.  Teaching and maintaining behavior management skills in the nursing home. Gerontologist 2002; 42: 487-496).


  28. Hebert R, Levesque L, Vezina J, Lavoie JP, Ducharme F, Gendron C, Preville M, Voyer L, Dubois MF: Efficacy of a psychoeducative group program for caregivers of demented persons living at home: a randomized controlled trial. J Gerontol B Psychol Sci Soc Sci 2003; 58:S58–S67.


  29. Folkman S, Chesney M, McKusick L, Ironson G, Johnson DS, Coates TJ. Translating coping theory into an intervention.  In: Eckenrode J, editor. The social context of coping . New York: Plenum Press; 1991, p 239–260


  30. Beck AT, Rush AJ, Shaw BF, Emery G. Cognitive therapy of depression. New York: Guilford Press; 1979.


  31. Gonyea JG, O’Connor MK, Boyle PA. Project CARE: A randomized controlled  trial of a behavioral intervention group for Alzheimer’s disease caregivers. The Gerontologist 2006;46(6):827-832.


  32. Moniz-Cook E, Elston C, Gardiner E, Agar S, Silver M, Win T. Can training community mental health nurses to support family carers reduce behavioural problems in dementia? An exploratory pragmatic randomised controlled trial.  International Journal of Geriatric Psychiatry 2008; 23: 185-191.


  33. Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist 2002; 42: 356-372.


  34. Gitlin LN, Winter L, Dennis MP, Hodgson N, Hauck W. Targeting and managing behavioural symptoms in individuals with dementia: A  randomised trial of a  nonpharmacolgical intervention. Journal of the AmericanGeriatrics Society 2010; 58:1465–74.


  35. Selwood A, Johnston K, Katona C, Lyketsos C, Livingston G. Systematic review of the effect of psychological interventions on family caregivers of people with dementia. J Affect Disord 2007; 101:75-89.


  36. Ayalon, L., Gum, A. M., Feliciano, L., & Areán, P. A. Effectiveness of  nonpharmacological interventions for the management of neuropsychiatric symptoms in patients with dementia: a systematic review. Archives of Internal Medicine 2006; 166(20): 2182-2188.