Dementia Care Competence Among Care Professionals and Reduced Challenging Behavior of Home-Dwelling Persons with Dementia: A Pre- and Post-Intervention Data Analysis

Abstract

Background:

We developed a psychosocial dementia care program to help care managers and professional caregivers manage challenging behavior in home-dwelling persons with dementia in Japan. The program consists of a web-based tool for ongoing monitoring and assessment for challenging behavior, and multi-agency discussion meetings. Results of a cluster-randomized controlled trial indicate a reduction in challenging behavior through this program.

Objectives:

The present study aimed to identify a key component of the developed program that is associated with a reduction in challenging behavior.

Methods:

We used consecutive data of the intervention and examined the association between challenging behavior in home-dwelling persons with dementia, professionals’ competence, and the frequency of revision of action plans. Challenging behavior was assessed using the total score of the Neuropsychiatric Inventory. A baseline and follow-up questionnaire was completed by care professionals using a Japanese version of the Sense of Competence in Dementia Care Staff scale.

Results:

A total of 86 care professionals completed a 6-month intervention with 219 persons with dementia. The 86 care professionals significantly improved in their dementia care competence. Challenging behavior was significantly reduced among the 219 persons with dementia at follow-up regardless of the level of professionals’ competence or the frequency of revision of action plans. Less pain was significantly related to the lower levels of challenging behavior.

Conclusion:

The ongoing multi-agency discussion meetings, with a focus on challenging behavior, may have been the key component in the psychosocial dementia care program. Pain management should be emphasized in action plans for challenging behavior.

Keywords

Challenging behavior dementia home-dwelling palliative care professional competence

INTRODUCTION

Palliative care for persons with dementia has received increased importance given that dementia is a terminal illness characterized by progressive impairment in cognitive function. Dementia has become a significant public health issue across aging societies [1]. Challenging behavior is common in people with dementia over the course of the disease [2, 3]. Challenging behavior may include shouting, wandering, agitation, resistance to care, and other behaviors that challenge caregivers. The presence of challenging behavior leads to increases in caregiver burden, and potentially, nursing home placement for persons with dementia [4, 5]. The European Association for Palliative Care’s (EAPC) white paper on palliative care for dementia recommends palliative care beginning immediately after the diagnosis and psychosocial interventions as the first-line treatment for challenging behavior [6]. Several countries have developed national dementia plans that prioritize the establishment of a psychosocial care approach to managing challenging behavior in dementia [7].

Access to palliative care is limited, especially for home-dwelling persons with dementia. Palliative care for dementia comprises of a baseline palliative care and specialist palliative care approach [6]. All individual members of a care team should be able to provide a baseline palliative approach. Psychosocial interventions for challenging behavior have been developed, even if they are not under a palliative care approach. Existing psychosocial dementia care programs have supported professional caregivers in nursing homes [8 –14] and family caregivers [15 –17] to provide optimal treatment and care for persons with dementia. However, the effect of programs that support family members in coping with challenging behavior has been limited [15 –19]. Other psychosocial dementia care programs for home-dwelling persons with dementia have involved professionals specialized in dementia care [20, 21]. A psychosocial dementia care program should be developed to help professional caregivers in the home care team who are not specialists for dementia in providing baseline palliative approach to home-dwelling persons with dementia.

Japan has faced specific challenges in the availability of baseline palliative care for home-dwelling persons with dementia due to the public long-term care system, in addition to the rapidly increasing population of persons with dementia. Under the Japanese long-term care insurance program, care managers handle monthly care plans for home care recipients. They are independent from providers of home care services. Recipients thus usually purchase home care services from multiple providers other than care managers. However, care managers and professional caregivers of home care services are sometimes unaware of existing psychosocial care approaches to challenging behavior [22]. Therefore, we developed a psychosocial dementia care program aiming to enable care managers and professional caregivers of home care services to identify unmet need, explore and implement action plans, and evaluate the efficacy of interventions.

The psychosocial dementia care program for home-dwelling persons with dementia consists of (1) a 2-day training course, (2) a web-based monitoring tool, and (3) multi-agency discussion meetings between care managers and professional caregivers of home care services. Previous research has shown that participating care professionals gained a better understanding of dementia and challenging behavior through this program [23]. Results of a cluster-randomized controlled trial also indicate a reduction in the challenging behavior of persons with dementia using the program [24]. However, which component of the program will finally affect the challenging behavior of home-dwelling persons with dementia is still unclear. It will be beneficial to determine a key component in the program in order to examine a feasible yet effective modification and dissemination of the program to several types of home care providers.

The present study aimed to identify a key component of the developed program that is associated with a reduction in challenging behavior.

MATERIALS AND METHODS

Design

We used consecutive data of the intervention to examine the association between challenging behavior in home-dwelling persons with dementia, professionals’ competence, and the frequency of revision of action plans. Based on findings from existing psychosocial dementia care programs [9 , 15], we hypothesized that improved dementia care competence after the training course and the frequency of revision of action plans were associated with the reduction in challenging behavior. Improved dementia care competence and the frequency of revision of action plans were also expected to be associated with a reduction in pain, which is a common and frequent occurrence for persons with dementia [6 , 14].

Our previous cluster-randomized controlled study collected data from the first group (intervention) and second group (control) between September 2016 and February 2017. The second group participated in the intervention between April and October 2017. In the intervention period, care professionals received a two-day training course before they utilized the palliative dementia care program with home-dwelling persons with dementia. They attended a debriefing meeting two months after the training course.

Each home care provider recruited persons with dementia aged 65 years or older to receive home care in the Dementia Behavior Analytics & Support Enhancement program. Care professionals were recruited within each home care service provider to undergo the training course, to input data on the persons with dementia using the web-based tool, and to implement monthly multi-agency discussions. Further details of the trial are available elsewhere [23, 24].

Ethics approval and consent to participate

This trial was approved by the Ethics Review Board of the Tokyo Metropolitan Institute of Medical Science (number 15–4 and 16–2) and completed in accordance with the Helsinki Declaration of 1975, as revised in 2013. Written informed consent was obtained from the persons and/or by proxy (typically, next of kin) as appropriate. Since the public long-term care insurance program requires the contract between care manager and the person who receives home care services, care managers judged whether persons with dementia were ethically able to provide consent.

Participants

A total of 261 persons with dementia in the care of 91 care professionals were enrolled at baseline. A total of 86 care professionals completed a 6-month intervention with 219 persons with dementia. There were 6 participants lost due to nursing home placement, 20 due to hospital admission, 2 due to persons’ or family member wishes to withdraw, and 3 died. A further 11 cases were excluded from analysis because the associated care professionals did not attend the debriefing meeting. The 219 persons were significantly younger (t(58.83) = 2.30, p = 0.025), and had higher Activities of Daily Living (ADL) scores (t(52.33) = 2.12, p = 0.039), compared to the 42 persons who were lost or otherwise excluded from analyses.

Intervention

The program consisted of (1) a 2-day training course, (2) a web-based tool for ongoing monitoring and assessment for challenging behavior, and (3) multi-agency discussion meetings. Care professionals undertook the 2-day training course and attended a 1-day debrief meeting two months after the training. The core principle of the training course was based on a palliative care approach [6] and it deemed challenging behavior as a communication that implies unmet needs of the person with dementia [25 –27]. There was a multi-agency discussion meeting with the care professionals to evaluate challenging behaviors of each person, specify unmet needs, and establish an action plan based on their needs. The care professionals implemented ongoing monitoring for challenging behavior and a monthly multi-agency discussion to reassess behavior and unmet needs and revise the action plan for the person. A debriefing meeting was held for all care professionals to discuss the implementation and practice challenges of the program. As noted earlier, further details of the program are available elsewhere [23, 24].

Assessments of persons with dementia

Care professionals assessed the challenging behavior, pain, cognitive impairment, ADL, and prescribed medication of each person with dementia. They inputted the information collected using the web-based tool at baseline and follow-up (6 months).

The dates when action plans were revised through multi-agency discussion meetings were recorded in the web-based tool. There were 130 persons with dementia whose action plans were revised monthly (59.4%), 67 with every 2-month revisions (30.6%), and 22 with fewer than 2-month revisions (10.0%). Therefore, we assumed monthly revision as a “regular revision of action plan” (n = 130).

The Neuropsychiatric Inventory – Nursing Home version (NPI-NH) was used to assess the incidence and severity of challenging behavior. The original Neuropsychiatric Inventory consists of 12 items to rate the frequency and severity of neuropsychiatric symptoms in persons with dementia [28 –31]. The score for each item ranges from 0 to 12, with higher scores indicating more challenging behavior. The multiplication of frequency and severity scores results in a total score ranging from 0 to 144. The Japanese version of the NPI-NH is reported to have good validity and reliability [32].

Pain was assessed using the Japanese version of the Abbey Pain Scale. The Abbey Pain Scale is an observational 6-item pain assessment for use with persons with cognitive impairment [33]. Each item is rated on a 4-point scale (absent = 0, mild = 1, moderate = 2, severe = 3). The overall assessment of pain intensity ranges from 0 to 18. The Japanese version of the Abbey Pain Scale has demonstrated reliability and validity [34]. Since persons with dementia sometimes face challenges in communicating pain verbally and pain would lead to challenging behavior, pain management is one of the core components of palliative dementia care programs [6 , 14].

Cognitive impairment was evaluated using the Japanese version of the Short-Memory Questionnaire (SMQ). The SMQ is an informant-based, 14-item scale to assess the severity of memory problems [35]. The total score ranges from 0 to 46. The Japanese version of the SMQ has shown fair reliability and validity [36].

ADL were measured using the Japanese version of the Barthel Index. The Barthel Index is a 10-item scale that measures basic aspects of activity related to self-care and mobility [37]. The total score ranges between 0 and 100. Lower scores indicate greater physical dependency. The Japanese version of the Barthel Index has been validated [38].

Prescribed medication was recorded taking note of the name of drug and dosage per day. For the present study, the presence of prescribed medication for the nervous system was used for analysis based on the Anatomical Therapeutic Chemical classification. The percentage of the presence of prescription was calculated for analgesics (N02), antipsychotics (N05A), anxiolytics (N05B), hypnotics and sedatives (N05C), antidepressants (N06A), and anti-dementia drugs (N06D).

Information on age, gender, and type of dementia were collected at baseline.

Assessments of care professionals

A questionnaire completed on the day of training (baseline) and debriefing meeting (follow-up) evaluated the self-reported competence in dementia care and personal characteristics of the care professionals. The care professionals responded to the questionnaire before the beginning of training/debriefing meeting.

Competence in dementia was measured using the Japanese version of the Sense of Competence in Dementia Care Staff (SCIDS) scale [39]. The SCIDS includes 17 items with a 4-point Likert scale ranging from “1 = not at all” to “4 = very much.” The total score ranges from 17 to 68, with higher scores indicating a higher sense of confidence. The Japanese version of the SCIDS has been validated (Cronbach’s alpha = 0.81) [23].

Personal characteristics collected about the care professionals included age, sex, education level, tenure in elderly care, and nursing license.

Statistical analyses

For the persons with dementia, changes between baseline and follow-up assessment were assessed for challenging behavior, pain, cognitive impairment, ADL, and prescribed medication. McNewmar’s chi-square tests were used for categorical variables, and paired t-tests for numeric variables. For the care professionals, a change in the total score of the SCIDS scale was also examined using paired t-test.

A random effects panel-data model for challenging behavior was performed including professionals’ self-rated competence in dementia care and regular revision of action plans as independent variables. Panel-data format was used in which the same person with dementia appears two times (data at baseline and at follow-up). Other independent variables included in the model were time of assessment (baseline or follow-up), age, sex, and type of dementia at baseline. Covariates included cognitive impairment, ADL, use of anti-dementia drugs, use of antipsychotics, and pain at the time of assessment. Multilevel linear regression modelling was applied to estimate variation in challenging behavior between persons and between care professionals. Multilevel modeling was required to employ the hierarchical analysis using a professional’s competence (level 2) in person-based (level 1) data. Multilevel modeling is applied to the analysis of repeated-measures data with time-dependent covariates and hierarchical clustering [40, 41].

All statistical analyses were conducted using Stata SE for Windows, version 15.1 (Stata Corp, College Station, Texas). The two-tailed significance level was set at 0.05.

RESULTS

Characteristics of persons with dementia

At baseline, the 219 persons with dementia had a mean age of 83.8 years (s.d. = 6.9). There were 63 males (28.8%). In this sample, the types of dementia included Alzheimer’s disease (n = 133, 60.7%), vascular dementia (n = 25, 11.4%), Lewy bodies (n = 10, 4.6%), frontotemporal dementia (n = 3, 1.4%), and unspecified dementia (n = 48, 21.9%).

Table 1 summarizes clinical characteristics of the 219 persons with dementia at baseline and follow-up. At follow-up, a total of 219 persons with dementia showed significant decline from baseline in both cognitive impairment and ADL. The percentage of medication was not changed for analgesics, antipsychotics, anxiolytics, hypnotics and sedatives, antidepressants, or anti-dementia drugs. However, there was a significant decline from baseline in the NPI-NH and the Abbey Pain Scale (Table 1).

Table 1

Characteristics of 219 persons with dementia who received a 6-month intervention of the Dementia Behavior Analytics & Support Enhancement program

	Baseline	Follow-up	Test statistic	p
ADL, mean (s.d.) a	67.5 (25.3)	65.3 (27.8)	t(218) = 2.43 ∗	0.016
Cognitive impairment, mean (s.d.) b	13.4 (5.2)	12.7 (5.1)	t(218) = 2.92 ∗	0.004
Prescribed medication, n (%)
N06D: Antidementia drugs	114 (52.1)	121 (55.3)	χ ² (1) = 4.45	0.065
N02: Analgesics	54 (24.7)	56 (25.6)	χ ² (1) = 2.00	0.500
N05A: Antipsychotics	27 (12.3)	32 (14.6)	χ ² (1) = 2.78	0.180
N05C: Hypnotics and sedatives	30 (13.7)	30 (13.7)	χ ² (1) <0.01	1.000
N05B: Anxiolytics	23 (10.5)	25 (11.4)	χ ² (1) = 1.00	0.623
N06A: Antidepressants	10 (4.6)	7 (3.2)	χ ² (1) = 3.00	0.250
Pain, mean (s.d.) c	2.0 (2.5)	1.5 (2.3)	t(218) = 2.63 ∗	0.009
Challenging behavior, mean (s.d.) d	16.1 (12.7)	10.0 (11.0)	t(218) = 8.19 ∗	<0.001

A McNemar’s chi-square test was used for categorical variables, and paired t-test for continuous variables. ^∗Significant at p < 0.05. ^aADL, Activities of Daily Living were measured by the Japanese version of the Barthel Index. The total score ranged from 0 to 100, with higher scores indicating less physical dependency. ^bCognitive impairment was measured by the Japanese version of the Short-Memory Questionnaire. The total score ranged from 0 to 46, with higher scores indicating greater memory problems. ^cPain was measured by the Japanese version of the Abbey Pain Scale. The total score ranged from 0 to 18, with higher scores indicating greater pain intensity. ^dChallenging behavior was measured by the Japanese version of the NPI-NH, Neuropsychiatric Inventory Nursing Home version. The total score ranged from 0 to 144, with higher scores indicating worse behavior.

Characteristics of the care professionals

The 86 care professionals had a mean age of 45.6 years (s.d. = 5.3). There were 25 males (29.1%). The care professionals comprised 74 care managers (86.0%), 9 nurses (10.5%), and 3 other care workers (3.5%). Level of education included vocational school (n = 40, 46.5%), university or graduate school (n = 25, 29.1%), high school (n = 19, 22.1%), and junior high school (n = 2, 2.3%). SCIDS total score was significantly higher at follow-up (mean = 38.4, s.d. = 6.0) than at baseline (mean = 37.0, s.d. = 4.6; t(85) = 2.88, p = 0.005).

Challenging behavior and dementia care competence

Table 2 represents the results of multilevel modelling linear regression analysis. After controlling for personal and clinical characteristics, professionals’ competence did not show a significant association with challenging behavior in persons with dementia. Regularity of revision of action plans was not associated with challenging behavior either. Challenging behavior was significantly reduced at follow-up compared to baseline assessment. Younger age, lower ADL, and greater pain were all significantly related to higher levels of challenging behavior (Table 2). The intraclass correlation coefficient in the final model was 0.053 for care professionals and 0.436 for persons with dementia.

Table 2

Multilevel linear regression analysis of challenging behavior in 219 home-dwelling persons with dementia

	Estimated coefficient	95% confidence interval
Intercept	46.91	29.41, 64.41
Fixed effect
Dementia care competence a	–0.06	–0.25, 0.14
Regularity of revision of action plan	–1.53	–4.11, 1.06
Time of assessment, follow-up	–5.64*	–7.05, –4.23
Age	–0.26*	–0.44, –0.08
Sex, male	–1.08	–3.75, 1.59
ADL b	–0.08*	–0.13, –0.04
Cognitive impairment c	–0.22	–0.44, 0.01
Type of dementia, Alzheimer’s	–0.06	–2.65, 2.52
Prescribed medication
N06D: Antidementia drugs	–0.02	–2.38, 2.42
N05A: Antipsychotics	0.54	–2.64, 3.92
Pain d	1.56*	1.14, 1.98
Random effect
Residual	53.53	44.32, 64.63
Intercept: care professional	5.57	0.62, 50.41
Intercept: person with dementia	45.69	30.72, 67.94
Fitness of model
Log likelihood	–1609.78
χ²(12)	193.05
p-value	<0.001
Akaike’s Information Criterion	3249.57
(AIC)

Multilevel linear regression analysis including person with dementia and care professional as random effects. *Significant at p < 0.05. ^aCompetence in dementia care was measured by the Japanese version of the Sense of Competence in Dementia Care Staff scale. The total score ranged from 17 to 68, with higher scores indicating higher level of sense of confidence. ^bADL, Activities of Daily Living were measured by the Japanese version of the Barthel Index. The total score ranged from 0 to 100, with higher scores indicating less physical dependency. ^cCognitive impairment was measured by the Japanese version of the Short-Memory Questionnaire. The total score ranged from 0 to 46, with higher scores indicating greater memory problems. ^dPain was measured by the Japanese version of the Abbey Pain Scale. The total score ranged from 0 to 18, with higher scores indicating greater pain intensity.

DISCUSSION

Main findings of the study

We analyzed consecutive data of the intervention to identify a key component of the developed program that is associated with a reduction in challenging behavior. Contrary to our hypothesis, challenging behavior reduced from baseline to follow-up assessment regardless of the level of professionals’ competence or the frequency of revision of action plans.

Self-reported dementia care competence among care professionals improved two months after the training course. However, dementia care competence did not show a significant association with challenging behavior. In addition, the variation between professionals was small with 5.3% total variation in challenging behavior. It implies that the level of challenging behavior was independent from the professional who assessed the person with dementia. One possible explanation is that the reduction in challenging behavior would have resulted from the improved competence of the team rather than of each care professional. However, our study lacked information on the dementia care competence of professional caregivers outside the program who participated only in the multi-agency meetings of persons with dementia. Even within the same agency, different care professionals may have different views regarding the applicability of palliative care for persons with dementia [42]. Future studies should assess the dementia care competence of professional caregivers within the care team and examine its association with challenging behavior.

Regular revision of action plans as part of multi-agency discussion meetings was not significantly associated with the change in challenging behavior either. Action plans remained unchanged when challenging behavior was reduced in persons with dementia. Case conferences dealing with challenging behavior have shown an influence on the competence and attitudes of professionals [43]. We should note that our discussion meeting included different care organizations for persons with dementia. This type of case management where care was provided by different care organizations is suboptimal in cost-effectiveness [44] and quality of life in persons with dementia [22]. Our participating care professionals stated that the multi-agency discussion meeting in the program helped them focus on dementia care that usual practices in home care services sometimes lacked [24]. Results of the present study suggest that ongoing multi-agency discussion meetings, with a focus on challenging behavior, may have been a key component in the psychosocial dementia care program. The regular revision of action plans may have led to improved competence in dementia care rather than having a direct impact in reducing challenging behavior. However, no revision of action plans regardless of the degree of behavioral change would be inappropriate practice. Further research is required to identify an optimal duration to sustain an action plan, and the point at which to revise this plan.

Pain was significantly related to challenging behavior in persons with dementia. There was a significant reduction both in challenging behavior and pain from baseline to the follow-up assessment. Care professionals of home care services tended to underestimate the pain that persons with dementia sometimes cannot communicate verbally [22]. Despite pain being a common and frequent occurrence for persons with dementia, pain management is often suboptimal [45 –47]. In the program, one-third of the persons with dementia were evaluated to have pain as an unmet need [24]. Appropriate action plans for challenging behavior may have been established with a focus on pain management for persons with dementia. We suggest that pain management be emphasized in action plans for challenging behavior.

Strengths and limitations of the study

This study design allowed us to examine the effect of the psychosocial dementia care program on challenging behavior in parallel with professionals’ competence and the frequency of revision of action plans. It is the first study to highlight the importance of ongoing multi-agency discussions between care managers and professional caregivers of home care services implementing the psychosocial dementia care program. However, some limitations have to be taken into account. Most persons with dementia who dropped out of the study were admitted to nursing homes or hospitals. Our study sample had fewer disabilities than those individuals excluded at baseline. Furthermore, there was no control group in this study. The effect of the program on challenging behavior may have been overestimated. Assessment of challenging behavior was employed by care managers and professional caregivers who provided home care services to the person with dementia. The manner of data collection could lead to a bias in the assessments to overestimate the reduction in challenging behavior. In addition, a follow-up assessment of challenging behavior was conducted three months later than that of dementia care competence in professionals. Two times of assessment may have been insufficient to assess the change in challenging behavior beyond measurement error. The long-term effect of the psychosocial dementia care program on dementia care competence among care professionals should be examined.

Conclusions

This study is the first to present a potential mechanism of benefit of a psychosocial dementia care program affecting challenging behavior in home-dwelling persons with dementia. Challenging behavior was significantly reduced at follow-up regardless of the level of professionals’ competence or frequency of revision of action plans. Pain was significantly related to challenging behavior in persons with dementia. Ongoing multi-agency discussion meetings with a focus on challenging behavior may have been a key component in the psychosocial dementia care program. Pain management should be emphasized in action plans for challenging behavior.

Footnotes

ACKNOWLEDGMENTS

The present study was funded by the JSPS KAKENHI through a Grant-in-Aid for Young Scientists (B) under Grant Number JP15K20796; the Institute of Seizon and Life Sciences under Project Number 29-1-6; and Tokyo Metropolitan government under Project Number 27-Fukushi-Hoken-Kourei-Zaitaku 1034. The funding sources had no involvement in the design or conduct of the study; the collection, management, analysis, and interpretation of the data; or the preparation, review, or approval of the manuscript.

The authors thank the following persons for their contribution to this research: Tsukasa Sasaki and Satoshi Usami as statistical experts; Katsunori Sato, Kumiko Murashima, Tomoko Nishida, Miho Katabami, and Hajime Nomaru as instructors in training courses and debriefing meetings; and Kaori Endo, Yuko Morimoto, Ryo Morishima, Shintaro Tanaka, and Junko Niimura in the Mental Health Promotion Project, Tokyo Metropolitan Institute of Medical Science.

Authors’ disclosures available online ().

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