Dementia
Conditions
Brief summary
Alzheimer's Disease and Related Disorders (dementia) are a group of serious life limiting illness that cause significant challenges to our public health system, with significant illness burden for both the person with dementia and the caregiver. At the end of life, over 230,000 persons with dementia annually are cared for in hospice, yet hospice agencies are ill prepared to care for this population and often resort to inappropriate pharmacologic measures such as antipsychotics that reduce quality of life rather than improve it. This study will therefore through its two phases refine and then implement, using a pragmatic stepped wedge trial design, the Dementia Symptom Management at Home Program Hospice Edition, with the goal improving quality of care for the person with dementia and their caregiver, reducing antipsychotic use, and increasing bereaved caregiver satisfaction in the hospice setting.
Interventions
BEHAVIORALDementia symptom management at home hospice edition
Quality assurance performance improvement program
BEHAVIORALEducation and Training
Education and training
Sponsors
National Institutes of Health (NIH)
NYU Langone Health
Study design
Allocation
NON_RANDOMIZED
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
50 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Must have dementia as primary diagnosis for admission to hospice * Must be newly admitted to a participating hospice * Must be 50 years or older Clinicians: * Must be a skilled clinician or home health aide who provides care through an eligible home health agency * Must be 18 years or older
Exclusion criteria
Persons with Dementia: * None Clinicians: * None
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Percentage of Hospice IDT Members Who Complete Required Education and Training | 2 Months | Percentage of Hospice IDT Members who Complete Required Education and Training |
Countries
United States
Participant flow
Participants by arm
| Arm | Count |
|---|---|
| Hospice IDT MembersHospice Clinicians (RNs, Social Workers, Ch Hospice Clinicians (RNs, Social Workers, Chaplains) who are given training | 72 |
| Advanced Demential Patients Dementia symptom management at home hospice edition: quality assurance performance improvement program | 11 |
| Total | 83 |
Withdrawals & dropouts
| Period | Reason | FG000 | FG001 |
|---|---|---|---|
| Overall Study | No specific reason | 4 | 0 |
| Overall Study | Sickness | 2 | 0 |
Baseline characteristics
| Characteristic | Hospice IDT MembersHospice Clinicians (RNs, Social Workers, Ch | Total | Advanced Demential Patients |
|---|---|---|---|
| Age, Continuous | 50.7 years | 68.4 years | 86 years |
| Ethnicity (NIH/OMB) Hispanic or Latino | 5 Participants | 5 Participants | 0 Participants |
| Ethnicity (NIH/OMB) Not Hispanic or Latino | 67 Participants | 78 Participants | 11 Participants |
| Ethnicity (NIH/OMB) Unknown or Not Reported | 0 Participants | 0 Participants | 0 Participants |
| Race (NIH/OMB) American Indian or Alaska Native | 0 Participants | 0 Participants | 0 Participants |
| Race (NIH/OMB) Asian | 6 Participants | 7 Participants | 1 Participants |
| Race (NIH/OMB) Black or African American | 19 Participants | 19 Participants | 0 Participants |
| Race (NIH/OMB) More than one race | 1 Participants | 1 Participants | 0 Participants |
| Race (NIH/OMB) Native Hawaiian or Other Pacific Islander | 1 Participants | 1 Participants | 0 Participants |
| Race (NIH/OMB) Unknown or Not Reported | 22 Participants | 22 Participants | 0 Participants |
| Race (NIH/OMB) White | 23 Participants | 33 Participants | 10 Participants |
| Sex/Gender, Customized Sex Female | 57 Participants | 68 Participants | 11 Participants |
| Sex/Gender, Customized Sex Male | 9 Participants | 9 Participants | 0 Participants |
| Sex/Gender, Customized Sex Unknown or not reported | 6 Participants | 6 Participants | 0 Participants |
Adverse events
| Event type | EG000 affected / at risk |
|---|---|
| deaths Total, all-cause mortality | 5 / 11 |
| other Total, other adverse events | 0 / 11 |
| serious Total, serious adverse events | 5 / 11 |
Outcome results
Primary
Percentage of Hospice IDT Members Who Complete Required Education and Training
Percentage of Hospice IDT Members who Complete Required Education and Training
Time frame: 2 Months
| Arm | Measure | Value (NUMBER) |
|---|---|---|
| Hospice IDT Members | Percentage of Hospice IDT Members Who Complete Required Education and Training | 92 percentage of participants |