The Impact of Aliviado Dementia Care-Hospice Edition Training Program on Hospice Staff’s Dementia Symptom Knowledge

Abstract

Context:

As the aging population grows, the incidence of dementia continues to increase substantially. However, the lack of a significant geriatric healthcare workforce as well as little dementia training amongst generalist healthcare workers leads to sub-optimal care for persons living with dementia (PLWD). In particular, few evidence-based interventions exist to improve the quality of dementia care amongst hospice interdisciplinary teams (IDT) caring for PLWD. Aliviado Dementia Care-Hospice Edition is a quality assurance and performance improvement program that includes training, mentoring and workflow enhancements, that aims to improve quality of hospice care provided to PLWD and their caregivers.

Objectives:

To determine the effectiveness of the Aliviado Dementia Care program in increasing dementia symptom knowledge of hospice IDT members.

Methods:

53 hospice team members from two diverse hospices, consisting of social workers, chaplains, physicians and nurses participated in the Aliviado training program. In this pre-post trial, 39 participants completed the Dementia Symptom Knowledge Assessment prior to and after completion of the program.

Results:

Paired t-tests showed significant differences pre and post Aliviado training in depression knowledge and confidence, as well as behavioral and psychological symptoms of dementia (BPSD) knowledge, confidence, and interventions. The greatest percent change increases were in depression (15.2%) and BPSD (13.3%) confidence as well as BPSD interventions (18.4%). Qualitative feedback consistently emphasized that trainees could now effectively assess their patients for specific symptoms such as pain and agitation.

Conclusion:

Aliviado is an evidence-based system-level intervention that improves clinical knowledge, attitudes and confidence in treating PLWD enrolled in hospice.

Introduction

As the population ages (1, 2), the incidence rate of dementia due to Alzheimer’s disease and related disorders (ADRD) is expected to rise substantially (3) with subsequent increases in associated costs (4). In 2008, the Institute of Medicine report warned the public about the lack of properly trained clinicians in geriatrics and yet over 10 years later the workforce is still incapable of providing high-quality care for persons living with dementia (PLWD) (5).

Hospice is a care model that provides care for persons with serious illness and consists of an interdisciplinary team comprised of registered nurses, social workers, chaplains, physicians, advanced practice nurses, home health aides and volunteers. The aim of hospice care is to provide comprehensive symptom, psychosocial, and spiritual support to seriously ill patients and families. Hospice care recipients typically represent medically complex patients who are 65 or older (6). However, hospice team members may not have adequate preparation to provide care for the growing hospice patient population of PLWD. Specifically, hospice team members may be unprepared to assess and manage behavioral and psychological symptoms of dementia (BPSD) and pain in PLWD. BPSD are one of the most common and distressing symptoms in PLWD, affecting up to 90% of persons with dementia (7). BPSD include agitation, depression, delusions, hallucinations, personality changes and aggression. BPSD are associated with caregiver burden and burnout (8), nursing home admission (9), and progression of dementia (10).

Moreover, a recent report found that an astounding 71% of PLWD at the moderate or severe stage living at home have bothersome pain (11). Pain is often not treated or undertreated in community settings (12) and PLWD are less likely to report pain and receive less pain medication (13). Unaddressed pain can lead to BPSD, particularly agitation, aggression and resistance to care (14).

BPSD symptoms, such as aggression and resistance to care, are often treated by antipsychotics. However, antipsychotics fail to treat the cause of these symptoms. In hospice, antipsychotics are widely overused; 61% of PLWD nationwide are prescribed an antipsychotic (15). Antipsychotics can cause significant side effects including sedation that lowers quality of life, as well as adverse events including stroke and death, even with short-term use (16-18) (19). While multiple non-pharmacologic interventions are available and have been found effective for the treatment of BPSD (20), they are often underutilized. Hospice IDT members such as nurses, social workers, and chaplains represent key individuals in supporting the application of non-pharmacologic interventions to treat and manage BPSD and pain in PLWD.

To support hospice care for PLWD, the Aliviado Dementia Care-Hospice Edition was implemented. Aliviado Dementia Care-Hospice Edition includes mentorship, training, and workflow enhancements in caring for PLWD. Training includes either a two day in-person session for hospice selected champions or online training for the remaining skilled hospice IDT members. Champions are identified by each hospice as individuals who would serve as support for fellow team members during the online training and implementation of the workflow enhancements. For the other members of an IDT, online training is offered. Online training includes 5 online, 1-hour, interactive, learning modules covering 1) dementia, depression and delirium; 2) pain in the PLWD; 3) assessing BPSD in PLWD; 4) treating BPSD in PLWD; 5) effective communication with the PLWD, caregiver, and healthcare team. Additional discussion of the Aliviado program as it was originally developed (previously known as the Dementia Symptom Management at Home Program) have been published elsewhere (21).

This study sought to determine the effectiveness of Aliviado Dementia Care-Hospice Edition training at improving dementia pain and BPSD knowledge and confidence of interdisciplinary hospice team members caring for PLWD in the pilot phase of a 5-year, two-phase embedded pragmatic clinical trial.

Methods

Design

This was a sequential pre-post study carried out at two hospices measuring knowledge, confidence and attitudes of dementia symptom management for hospice workers. Aliviado dementia symptom management program was shown to be effective when used in a home health setting, amongst 209 clinicians, significant improvements were found in knowledge, attitudes and care confidence in treating PWD, varying by specialty (21). Therefore, Aliviado was adapted to a hospice setting with modifications to address key topic areas that are important to PWD in their final months of life. This was accomplished through an expert interdisciplinary panel of hospice clinicians who reviewed the curriculum and algorithms and assessed content appropriateness for hospice. Some examples of modifications made after this assessment were reducing pharmacology content and increasing content in psychosocial care, as well as adding training and treatment algorithms for evidence-based care content on terminal delirium and several others.

Recruitment and Eligibility

The program was implemented and subjects were recruited from a large urban hospice in New York and from a medium-sized hospice in Southern California. At both sites, recruitment emails were sent to all eligible skilled hospice IDT members inviting them to participate in the study. Approximately 11% of patients in the hospice in California were diagnosed with dementia and their average daily census (ADC) was 150. The hospice in new York had an ADC of 756 with approximately 22% of patients with a diagnosis of dementia across home, assisted living and nursing home admittance.

To be included in this study, an individual had to (1) be at least 18-years old; (2) English-speaking; and (3) a nurse, social worker, physician or chaplain employed or contracted to (4) work for more than 50% of a full-time equivalent unit as part of an interdisciplinary team at the participating hospice agencies. Exclusion criteria for participation included (1) Team members who served as champions in the study, (2) worked per-diem, (3) provided no direct patient care or patient management responsibilities, (4) did not supervise frontline team members, (5) had extended leave of more than 2 weeks or left the participating hospices during the pilot period, (6) did not completed at least or had participated in a previous Aliviado training pilot before the initiation of the current study.

This study was approved by the Institutional Review Board (IRB) for the New York University School of Medicine. Eligible skilled hospice members were consented through a standardized consent webpage approved by the IRB. Their action to proceed to complete the online survey after reading the consent page indicates their consent to study participation.

Measures

Before and after implementation of Aliviado Dementia Care-Hospice Edition, participants completed an online survey consisting of the Dementia Symptom Knowledge Assessment (21), as well as questions examining effectiveness and appropriateness of the Aliviado training program for the hospice setting. To assess the knowledge, confidence and attitudes of clinicians, the DSKA survey adapted three validated instruments, assessing pain (22), depression (23) and behavior knowledge and attitudes(24). Additional information on the validity and reliability of each of the adapted scales can found in Zwakhalen et al. (22), Davison et al. (23) and Cohen-Mansfield et al. (24). The survey also includes set of questions that are investigator derived assessing clinician’s confidence in pain, depression and behavior confidence (21). The Likert scale for each of the adapted scales ranged from 5 to 7 points (21). To keep all the scales consistent, the Likert scales were adjusted to 4 points. There are total 10 subscales and a total of 79 total items in the DSKA (21). The number of items for individual subscales are in Table 2. The DSKA is internally consistent with a Cronbach’s α of .9 overall (21). Each subscale’s α ranged between .71 and .91. (21). The DSKA scoring demonstrates that higher scores show greater the knowledge, attitudes, confidence for each subscale. Some items were reversed scored to reflect greater knowledge, attitudes and confidence. Additional information on the DSKA psychometrics and scoring can be found in Brody et al. (21). Participants completing the Aliviado training program were offered continuing education credits as incentives.

Table 2.

Paired Sample T-tests of Pre and Post Knowledge Score

Sub-scale (score range: number of items – highest score)	Pre(range)	Post(range)	P-Value	Percent Change
Pain Knowledge (11-44)	34.1 (27-40)	35.3 (28-41)	0.13	3.7%
Pain Attitudes (6-24)	17.8 (12-23)	17.8 (7-23)	0.90	−0.1%
Pain Confidence (4-16)	10.6 (4-16)	11.2 (6-16)	0.10	5.9%
Depression Knowledge (7-28)	19.7 (16-25)	20.6(16-25)	0.008	4.7%
Depression Attitudes (3-12)	8.4 (6-11)	8.2 (6-12)	0.49	−2.3%
Depression Confidence ( 4-16)	8.5 (4-16)	10.1 (5-16)	0.001	18.1%
BPSD Knowledge (6-24)	15.1 (13-19)	20.6 (16-25)	0.01	5.5%
BPSD Attitudes (5-20)	14.1 (11-19)	14.7 (11-20)	0.10	4.3%
BPSD Confidence (4-16)	9.7 (4-15)	11.2 (7-16)	0.004	15.1%
BPSD Interventions (29-116)	64.0 (36-115)	73.7 (56-110)	0.0003	15.2%

Statistical Analyses

RStudio 1.1.456 statistical software was used for analyses. Mean scores and percent changes comparing 10 pre and post knowledge, attitudes, confidence and intervention subscale scores were calculated. All calculations were done on the participant level. Paired sample t-tests were calculated to determine significance of percent change scores. A p-value of 0.05 or lower is seen as statistically significant. Positive percent changes demonstrate an increase in scores from pre to post intervention and negative percent changes demonstrate a decrease in scoring. Sub-analyses were also done on pre and post test scores by discipline and by past dementia training to explore the possible magnitude of percent changes between selected groups. Further exclusion criteria for data analysis included completing over 50% of the assessment before and/or after the implementation to have adequate data for analysis (Figure 1). Additionally, hospice team members will refer to nurses and social workers for the analysis due to the low number of physicians (n=1) and chaplains (n=1) that participated in the study. Descriptive and frequency statistics were used to yield demographic information of team members.

Figure 1:

Aliviado trial study flowchart

Results

Participant Characteristics

There were a total of 95 non-champion hospice team members and 53 of the team members were eligible to participate in the Aliviado training program. 39 (73.6%) of the eligible hospice team members who participated in the Aliviado training program, provided both pre-test and post-test data required for data analysis and had adequate amount of participants in their discipline (Figure 1). On average, the hospice team members were 48.9 years old and majority female (87.2%, N =34). The team members were majority African American/Black (35.9%, N=14) demonstrating a highly diverse population. They were mainly nurses (74.4%, N = 29) and full time employees (92.3%, N= 36). On average, the hospice team members practiced in their profession for 15.7 years. They practiced in hospice for an average of 7 years and worked at their current hospice for an average of 7.5 years. Hospice practice averages are slightly lower than hospice employment averages because some participants were possibly employed at their current hospice but working in another department. A fifth (20.5%, N=8) of the hospice team members had completed another dementia training in the past 2 years (Table 1).

Table 1.

Participant Characteristics

Characteristic	Average (range) / Total	Percentage
Age	48.9 (29-69)
Female Gender	34	87.2%
Race
Caucasian	13	33.3%
African American/ Black	14	35.9%
Hispanic	3	7.7%
Asian	4	10.3%
Pacific Islander	1	2.6%
Other	4	10.3%
Full time Employee	36	92.3%
Discipline
Nursing	29	74.4%
Social Work	10	25.6%
Professional Experience
Years of Practice in Profession	15.7 (1-35)
Years of Practice in Hospice	7.0 (0-20)
Years of Practice in Current Hospice	7.5(0-33)
Completed Other Dementia Training in the Past 2 Years	8	20.5%

Missing Data: Four participants did not provide age.

Quantitative Pre and Post Knowledge Survey Results

Knowledge, Confidence and Attitudes Changes

At baseline, hospice team members present a fair amount of variation with modest at best knowledge, confidence and attitudes scores. Overall, when assessing the knowledge, confidence and attitude percent changes of all hospice team members before and after the Aliviado training program, there were statistically significant increases in depression knowledge (p-value: 0.008) and confidence (p-value: 0.001), as well as BPSD knowledge (p-value: 0.01), confidence (p-value: 0.004) and non-pharmacologic intervention implementation ability (p-value: 0.0003) (Table 2).

The sub-analysis assessing pre and post scores changes by discipline varied. Nurses had statistically significant increases in depression knowledge (p-value: 0.02) and confidence (p-value: 0.005) and BPSD knowledge (p-value: 0.02), and non-pharmacologic intervention implementation (p-value: 0.01). While, social workers had statistically significant increases in pain (p-value: 0.03) and BPSD confidence (p-value: 0.02) and non-pharmacologic intervention implementation (p-value: 0.01) (Table 3).

Table 3.

Paired Sample T-tests of Pre and Post Knowledge Score by Discipline

Sub-scale (score range)	RN				Social Workers
	Pre (range)	Post (range)	P- Value	Percent Change	Pre (range)	Post (range)	P- Value	Percent Change
Pain Knowledge (11-44)	34.2 (27-40)	35.8 (28-41)	0.13	4.5%	33.5 (29-37)	33.9 (30-39)	0.70	1.1%
Pain Attitudes (6-24)	17.8 (12-23)	18.2(10 -23)	0.49	2.1%	17.9 (14-21)	16.7 (7-21)	0.32	−6.9%
Pain Confidence (4-16)	11.7 (7 -16)	12.0 (8-16)	0.50	2.3%	7.5 (4-12)	9.2 (6-16)	0.03	22.7%
Depression Knowledge (7-28)	19.6 (16-25)	20.6 (16-25)	0.02	4.9%	19.9 (17-23)	20.8 (18-24)	0.30	4.3%
Depression Attitudes (3-12)	8.4 (7 -11)	8.1 (6-11)	0.20	−3.2%	8.3 (6-10)	8.3 (6-12)	0.70	0.4%
Depression Confidence (4-16)	8.5 (4-16)	10.1 (5-16)	0.005	15.2%	8.6 (4-14)	9.9 (6-16)	0.15	15.1%
BPSD Knowledge (6-24)	14.9 (13-19)	15.9(14-18)	0.02	6.2%	15.4 (13-19)	15.9 (14-18)	0.48	3.2%
BPSD Attitudes (5-20)	13.9 (11-17)	14.4 (11-20)	0.27	3.6%	14.6 (13-19)	15.5 (14-19)	0.15	6.2%
BPSD Confidence (4-16)	10.1 (4-15)	11.5 (8-16)	0.03	13.7%	8.6 (5-12)	10.3 (7-16)	0.02	19.8%
BPSD Interventions (29-116)	65.6(36-115)	75.0(56-110)	0.007	14.2%	59.1 (38-75)	70.0 (57-87)	0.01	18.4%

Pre and post score changes by exposure of dementia training in the past two years also differed. Hospice team members who did not have dementia training in the past 2 years had statistically significant increases in pain confidence (p-value: 0.03), depression knowledge (p-value: 0.04), depression confidence (p-value: 0.004), BPSD confidence (p-value: 0.01) and interventions (p-value: 0.0005). Hospice team members that had training in the past 2 years had statistically significant changes in BPSD knowledge (p-value: 0.02) and moderately significant changes in BPSD interventions (p-value: 0.05). (not shown).

Discussion

This study examined the pilot effectiveness of an interdisciplinary interactive online learning program targeting skilled hospice team members’ knowledge, confidence, and attitudes towards addressing depression, other BPSDs and pain in PLWD. An increase in depression knowledge, and confidence and BPSD knowledge, confidence and non-pharmacologic interventions was found. These findings support similar recently published results amongst IDT members in the nursing home setting regarding positive impact of dementia training on knowledge and skill confidence (25).

In addition to improvement in the overall cohort, differences emerged by professional discipline. For example, nurse participants demonstrated significant changes in depression knowledge and confidence, BPSD knowledge, confidence and skill in BPSD non-pharmacologic interventions. However, social workers demonstrated significant changes in pain confidence, BPSD confidence, and BPSD non-pharmacologic interventions. Previous studies have identified differences between nurses’ and social workers’ perceptions and understanding regarding dementia knowledge (26). For example, social workers have been found to better identify BPSD associated with dementia (26). Supporting social workers’ ability to address BPSD and pain is critical in their work with PLWD and caregivers. As a key member of the hospice IDT, social workers are able to recognize and address the impact of illness on the emotional well-being and coping abilities of PLWD and caregivers(26-28).

Overall, there was limited change in pain knowledge, confidence and attitudes in this study. While, pain represents an under recognized aspect of dementia symptom management (29), hospice clinicians may see themselves as experts in managing pain due to the nature of their role in hospice. This may hold some truth as our prior work in home health found clinicians had significantly lower baselines in all three pain domains (21).

Nonetheless, in this study, social workers did increase their confidence in assessing and managing pain. Social workers frequently act as advocates and care managers to ensure coordination of care occurs, especially in regard to the management of significant symptoms such as pain(30). The increase in confidence regarding assessing and managing pain supports the overall management of pain in PLWD in hospice.

Additionally, the scale showed improvement in some pain knowledge questions specifically targeting recognition of pain in PLWD. However, a decline in understanding medication effectiveness after the training became apparent. During the training, emphasis was placed on the lack of efficacy regarding the use of opioids for conditions such as osteoarthritis and lower back pain (25). Participants may have become confused regarding an overall approach to the management of pain, resulting in the decreased scores on the post-test.

Finally, this study is part of a larger quality improvement program surrounding dementia symptom management in hospice that was developed to not only to change knowledge and confidence in care, but to change and sustain practice. Multiple studies have found that training alone does not change practice (31). Several successful quality improvement programs in other settings have included these elements, but further study is needed with this intervention to ascertain its effectiveness long term in both intermediary measures such as clinician competence, as well as in patient outcomes including reduction in antipsychotic use and increase in quality of life and caregiver satisfaction.

Limitations

The results of this study support understanding regarding the potential impact of dementia symptom knowledge training on hospice team members. However, this study demonstrates several limitations, including a small sample size, which might reduce the generalizability of the study results. Additionally, the sample was comprised mainly of nurses and social workers, which is reflective of the key care providers of care in the area of hospice. However, hospice team members also include other individuals such as home health aides, chaplains, and providers. Inclusion of home health aides, chaplains, and providers would support a fuller understanding regarding the impact of the Aliviado training on dementia symptom knowledge. Finally, this only looked at short-term clinician outcomes, and as noted above, future work will need to be performed examining the sustainability of the intervention and its effects on PLWD and caregiver outcomes.

Conclusions

This study showed that Aliviado Dementia Care-Hospice Edition training may facilitate hospice team members in providing effective, evidence-based care for PLWD receiving hospice. The findings from this study support the need for further consideration and evaluation of how to implement non-pharmacologic interventions for BPSD. Non-pharmacologic interventions have the potential to improve quality of life and reduce inappropriate antipsychotic use. Based upon these, as well as additional feasibility, acceptability and usability findings discussed elsewhere, we will be testing Aliviado Dementia in a large embedded pragmatic clinical trial funded through the R33 phase of an NIA award beginning in January 2020.