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Address correspondence to: Catherine E. Schneider, PhD, Hartford Institute for Geriatric Nursing, NYU Rory Meyers College of Nursing, 433 1st Avenue, New York, NY 10010, USA.
As the aging population grows, the incidence of dementia continues to increase substantially. However, the lack of a significant geriatric health care workforce as well as little dementia training among generalist health care workers leads to suboptimal care for persons living with dementia (PLWD). In particular, few evidence-based interventions exist to improve the quality of dementia care among hospice interdisciplinary teams caring for PLWD. Aliviado Dementia Care—Hospice Edition is a quality assurance and performance improvement program that includes training, mentoring, and workflow enhancements, which 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 interdisciplinary team members.
Methods
About 53 hospice team members from two diverse hospices, consisting of social workers, chaplains, physicians, and nurses, participated in the Aliviado training program. In this prepost trial, 39 participants completed the Dementia Symptom Knowledge Assessment before and after completion of the program.
Results
Paired t-tests showed significant differences before and after 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.
In 2008, the Institute of Medicine report warned the public about the lack of properly trained clinicians in geriatrics, and yet more than 10 years later, the workforce is still incapable of providing high-quality care for persons living with dementia (PLWD).
Hospice is a care model that provides care for persons with serious illness and consists of an interdisciplinary team (IDT), which comprises 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 supports to seriously ill patients and families. Hospice care recipients typically represent medically complex patients who are 65 years or older.
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.
BPSD include agitation, depression, delusions, hallucinations, personality changes, and aggression. BPSD are associated with caregiver burden and burnout,
Neuropsychiatric symptoms are associated with increased risks of progression to dementia: a 2-year prospective study of 321 Chinese older persons with mild cognitive impairment.
Contact heat sensitivity and reports of unpleasantness in communicative people with mild to moderate cognitive impairment in Alzheimer's disease: a cross-sectional study.
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.
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.
An overview of systematic reviews of pharmacological and non-pharmacological interventions for the treatment of behavioral and psychological symptoms of dementia.
they are often underused. Hospice IDT members, such as nurses, social workers, and chaplains, represent key individuals in supporting the application of nonpharmacologic 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 five online, one-hour, interactive, learning modules covering dementia, depression, and delirium; pain in the PLWD; assessing BPSD in PLWD; treating BPSD in PLWD; effective communication with the PLWD, caregiver, and health care team. Additional discussions of the Aliviado program as it was originally developed (previously known as the Dementia Symptom Management at Home Program) have been published elsewhere.
Development and testing of the Dementia Symptom Management at Home (DSM-H) program: an interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers.
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 five-year and two-phase embedded pragmatic clinical trial.
Methods
Design
This was a sequential prepost 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. Among 209 clinicians, significant improvements were found in knowledge, attitudes, and care confidence in treating PWD, varying by specialty.
Development and testing of the Dementia Symptom Management at Home (DSM-H) program: an interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers.
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 e-mails 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 was 150. The hospice in New York had an average daily census 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 be at least 18 years old; English speaking; and a nurse, social worker, physician, or chaplain employed or contracted to work for more than 50% of a full-time equivalent unit as part of an IDT at the participating hospice agencies. Exclusion criteria for participation included team members who served as champions in the study; worked per diem; provided no direct patient care or patient management responsibilities; did not supervise frontline team members; had extended leave of more than two weeks or left the participating hospices during the pilot period; did not complete at least or had participated in a previous Aliviado training pilot program before the initiation of the present study.
This study was approved by the Institutional Review Board for the New York University School of Medicine. Eligible skilled hospice members were consented through a standardized consent Web page approved by the Institutional Review Board. 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 (DSKA)
Development and testing of the Dementia Symptom Management at Home (DSM-H) program: an interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers.
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,
Knowledge of and attitudes toward nonpharmacological interventions for treatment of behavior symptoms associated with dementia: a comparison of physicians, psychologists, and nurse practitioners.
Knowledge of and attitudes toward nonpharmacological interventions for treatment of behavior symptoms associated with dementia: a comparison of physicians, psychologists, and nurse practitioners.
Development and testing of the Dementia Symptom Management at Home (DSM-H) program: an interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers.
Development and testing of the Dementia Symptom Management at Home (DSM-H) program: an interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers.
To keep all the scales consistent, the Likert scales were adjusted to four points. There are a total of 10 subscales and a total of 79 total items in the DSKA.
Development and testing of the Dementia Symptom Management at Home (DSM-H) program: an interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers.
Development and testing of the Dementia Symptom Management at Home (DSM-H) program: an interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers.
Development and testing of the Dementia Symptom Management at Home (DSM-H) program: an interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers.
The DSKA scoring demonstrates that higher scores show greater the knowledge, attitudes, and 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 the study by Brody et al.
Development and testing of the Dementia Symptom Management at Home (DSM-H) program: an interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers.
Participants completing the Aliviado training program were offered continuing education credits as incentives.
Statistical Analyses
RStudio 1.1.456 statistical software (RStudio, Inc., Boston, MA) was used for analyses. Mean scores and percent changes comparing 10 preknowledge and postknowledge, 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 preintervention to postintervention, and negative percent changes demonstrate a decrease in scoring. Subanalyses were also done on pretest and post-test scores by discipline and past dementia training to explore the possible magnitude of percent changes between selected groups. Further exclusion criteria for data analysis included completing more than 50% of the assessment before and/or after the implementation to have adequate data for analysis (Fig. 1). In addition, hospice team members will refer to nurses and social workers for the analysis because of the low number of physicians (n = 1) and chaplains (n = 1) who participated in the study. Descriptive and frequency statistics were used to yield demographic information of team members.
Fig. 1Aliviado trial study flowchart. IDT = interdisciplinary team.
There were a total of 95 nonchampion hospice team members, and 53 of the team members were eligible to participate in the Aliviado training program. About 39 (73.6%) of the eligible hospice team members who participated in the Aliviado training program provided both pretest and post-test data required for data analysis and had adequate amount of participants in their discipline (Fig. 1). On average, the hospice team members were 48.9 years old, and majority were females (87.2%; N = 34). Most of the team members were of African American/black origin (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 seven 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 two years (Table 1).
Table 1Participant 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 two years
8
20.5
Missing data: Four participants did not provide age.
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 = 0.008) and confidence (P = 0.001) as well as BPSD knowledge (P = 0.01), confidence (P = 0.004), and nonpharmacologic intervention implementation ability (P = 0.0003) (Table 2).
Table 2Paired-Sample t-Tests of Preknowledge and Postknowledge Scores
Subscale (Score Range: Number of Items–Highest Score)
Pre (Range)
Post (Range)
P
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
BPSD = behavioral and psychological symptoms of dementia.
Quantitative preknowledge and postknowledge survey results by domain.
Prescore and postscore 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 two years had statistically significant increases in pain confidence (P = 0.03), depression knowledge (P = 0.04), depression confidence (P = 0.004), BPSD confidence (P = 0.01), and interventions (P = 0.0005). Hospice team members who had training in the past two years had statistically significant changes in BPSD knowledge (P = 0.02) and moderately significant changes in BPSD interventions (P = 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 toward addressing depression, other BPSDs, and pain in PLWD. An increase in depression knowledge, depression confidence, BPSD knowledge, BPSD confidence, and nonpharmacologic interventions was found. These findings support similar recently published results among IDT members in the nursing home setting regarding positive impact of dementia training on knowledge and skill confidence.
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 nonpharmacologic interventions. However, social workers demonstrated significant changes in pain confidence, BPSD confidence, and BPSD nonpharmacologic interventions. Previous studies have identified differences between nurses' and social workers' perceptions and understanding regarding dementia knowledge.
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.
Overall, there was limited change in pain knowledge, confidence, and attitudes in this study. Although pain represents an under-recognized aspect of dementia symptom management,
hospice clinicians may see themselves as experts in managing pain because of the nature of their role in hospice. This may hold some truth as our prior work in home health found that clinicians had significantly lower baselines in all three pain domains.
Development and testing of the Dementia Symptom Management at Home (DSM-H) program: an interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers.
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 that coordination of care occurs, especially with regard to the management of significant symptoms such as pain.
The increase in confidence regarding assessing and managing pain supports the overall management of pain in PLWD in hospice.
In addition, 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 low back pain.
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 not only to change knowledge and confidence in care but also to change and sustain practice. Multiple studies have found that training alone does not change practice.
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. In addition, the sample comprises mainly nurses and social workers, which is reflective of the key care providers 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 previously, 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 nonpharmacologic interventions for BPSD. Nonpharmacologic interventions have the potential to improve quality of life and reduce inappropriate antipsychotic use. Based on 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 National Institute on Aging (NIA) award beginning in January 2020.
Disclosures and Acknowledgments
This article was funded through the National Institutes of Health/NIA grant (R61AG061904 and R33AG061904, respectively).
The Aliviado Dementia program was funded through NIA and is a part of New York University. The authors do not stand to benefit financially from the use of this product. None of the authors of this article have anything to disclose.
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Neuropsychiatric symptoms are associated with increased risks of progression to dementia: a 2-year prospective study of 321 Chinese older persons with mild cognitive impairment.
Contact heat sensitivity and reports of unpleasantness in communicative people with mild to moderate cognitive impairment in Alzheimer's disease: a cross-sectional study.
An overview of systematic reviews of pharmacological and non-pharmacological interventions for the treatment of behavioral and psychological symptoms of dementia.
Development and testing of the Dementia Symptom Management at Home (DSM-H) program: an interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers.
Knowledge of and attitudes toward nonpharmacological interventions for treatment of behavior symptoms associated with dementia: a comparison of physicians, psychologists, and nurse practitioners.
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