Alzheimer's Disease and Related Dementias
Conditions
Keywords
Dementia, End of life, Hospice, Caregiver Burden, Caregiving
Brief summary
The purpose of this study is to pilot test the feasibility, acceptability, and preliminary efficacy of a clinically useful, inclusive dementia-enhanced training and tool for use by home hospice clinicians to improve care and support for Black and White patients with dementia and their family caregivers. The investigators expect family caregivers of clinicians in the intervention group will report less caregiver burden (primary outcome) than caregivers of clinicians in the control group. The investigators expect that, compared to clinicians in the control group (usual care), clinicians in the intervention group (receive the training and use the tool) will demonstrate more knowledge of dementia-related caregiving issues (secondary outcomes). In exploratory analyses, the investigators expect family caregivers will report greater self-efficacy and preparedness, and that patients of clinicians in the intervention group will experience fewer live discharges than family caregivers of patients of clinicians in the control group.
Detailed description
For this aim, the investigators will conduct a randomized pilot study to determine the feasibility and acceptability of implementing the training and tool in clinical practice compared to usual care with 40 clinicians (20 intervention, 20 control) and 160 Black and white FCG (80 intervention, 80 control). The investigators will also determine preliminary efficacy of the training and tool. Outcomes include feasibility and acceptability of the intervention, reducing FCG burden (primary outcome), improving clinician knowledge and confidence (secondary outcomes) and increasing FCG preparedness and self-efficacy.
Interventions
BEHAVIORALEDITH-HC
This study tests feasibility and acceptability of implementing a tool and training in a clinical practice and the preliminary efficacy of training materials to enhance hospice clinicians' knowledge of dementia-related caregiving issues at end of life and a tool for clinicians to use to address caregiving issues related to dementia at end of life.
Sponsors
Rutgers, The State University of New Jersey
National Institute on Aging (NIA)
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Intervention model description
Nurses and social workers are organized into interdisciplinary teams (IDTs) based on geographic location. Patients and families in those geographic are assigned to clinicians' individual caseloads. The investigators will randomize up to 14 IDTs of 6-8 clinicians each to the intervention and control groups. Six teams will be randomized at the beginning of the study. The remaining 8 teams will be adaptively randomized as they enter the study to maintain balance between the number of Black and White family caregiver participants in each arm. Family caregivers will be assigned to the same group (intervention or control) as the clinician they are assigned to. IDT assignment to intervention and control groups will be balanced based on characteristics including patients' racial/ethnic group membership and neighborhood socioeconomic status.
Eligibility
Sex/Gender
ALL
Age
19 Years to 90 Years
Healthy volunteers
Yes
Inclusion criteria
* Individuals are not excluded from this study based on gender. * Based on proportion of hospice workforce and family caregivers that are female, we expect 70%-80% of participants will be female. * Nurse, social worker, or family member who provides care to persons(s) living with dementia enrolled in home hospice care. * 19-90 years old. * Can complete data collection in English. * Family Caregivers: identify as White or Black/African American.
Exclusion criteria
* Participant is less than 19 years old or older than 90 years old. * Does not provide care to person(s) living with dementia enrolled in home hospice. * Cannot complete data collection in English. * Family Caregiver does not identify as White or Black/African American.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Family Caregiver Burden | Baseline and through first subsequent hospice visit, an average of 8 weeks | The investigators will assess this outcome using the validated, 12-item Zarit Caregiver Burden Inventory. Summed scores range from 0-48, with higher scores indicating greater burden. The investigators will assess changes in reported caregiver burden between baseline and the first subsequent hospice visit and compare differences in changes between the intervention and control groups. Because family caregiver participants are relatives of hospice patients that may die (at which point they will no longer be receiving home visits from nurses and social workers), the investigators expect that many participants will not complete all four time points of data collection. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Clinician Knowledge of Dementia-related Issues at End of Life | Baseline and through training completion, an average of 4 weeks | The investigators will assess clinician knowledge of dementia-related issues at end of life using the validated, revised Dementia Knowledge Assessment Scale. The DKAS is a 25-item questionnaire, summed range: 0=50, with higher scores indicating greater knowledge. The investigators will assess changes in reported knowledge between baseline and after completing the training. The investigators will compare differences in changes between clinicians receiving the training (intervention) and those receiving a presentation on patterns of hospice outcomes for persons living with dementia (control). |
Countries
United States
Contacts
PRINCIPAL_INVESTIGATORElizabeth Luth, PhD
Rutgers University
Participant flow
Pre-assignment details
No enrolled participants were excluded from the study before assignment to a study group.
Baseline characteristics
| Characteristic | — |
|---|---|
| Age, Continuous | 43.8 years STANDARD_DEVIATION 11.4 |
| Caregiving Self-Efficacy Scale | 5.7 units on a scale STANDARD_DEVIATION 2.1 |
| Dementia Knowledge and Attitudes Scale | 37.1 units on a scale STANDARD_DEVIATION 5.7 |
| Ethnicity (NIH/OMB) Hispanic or Latino | 1 Participants |
| Ethnicity (NIH/OMB) Not Hispanic or Latino | 12 Participants |
| Ethnicity (NIH/OMB) Unknown or Not Reported | 1 Participants |
| Family Caregiver Preparedness Scale | 2.8 units on a scale STANDARD_DEVIATION 0.6 |
| Race (NIH/OMB) American Indian or Alaska Native | 0 Participants |
| Race (NIH/OMB) Asian | 2 Participants |
| Race (NIH/OMB) Black or African American | 13 Participants |
| Race (NIH/OMB) More than one race | 1 Participants |
| Race (NIH/OMB) Native Hawaiian or Other Pacific Islander | 0 Participants |
| Race (NIH/OMB) Unknown or Not Reported | 4 Participants |
| Race (NIH/OMB) White | 7 Participants |
| Region of Enrollment United States | 89 participants |
| Sex: Female, Male Female | 19 Participants |
| Sex: Female, Male Male | 4 Participants |
| Zarit Burden Interview | 16.6 units on a scale STANDARD_DEVIATION 7.2 |
Adverse events
| Event type | EG000 affected / at risk | EG001 affected / at risk | EG002 affected / at risk | EG003 affected / at risk |
|---|---|---|---|---|
| deaths Total, all-cause mortality | 0 / 15 | 0 / 14 | 0 / 37 | 0 / 27 |
| other Total, other adverse events | 0 / 15 | 0 / 14 | 0 / 37 | 0 / 27 |
| serious Total, serious adverse events | 0 / 15 | 0 / 14 | 0 / 37 | 0 / 27 |
Outcome results
None listed