Alzheimer Disease and Related Dementias
Conditions
Keywords
hospice care, care transitions, Alzheimer's disease and related dementias
Brief summary
This study will test a care management intervention to guide end-of-life care and hospice transitions for persons with dementia and their care partners receiving home healthcare and ascertain feasibility, acceptability, fidelity, and usability of a dementia care management hospice transitions checklist. This study will also examine hospice enrollment, time to enrollment, and care partner satisfaction with the intervention. The intervention will be delivered within usual care management within a large home healthcare agency.
Detailed description
This study has the following design: Unblinded, Non-Randomized, Single-Arm Intervention Study (Feasibility Trial). In this study, the team will pilot test the care management checklist intervention with care partners of persons with dementia. This intervention will be tested for feasibility (primary outcome), acceptability, fidelity, and usability (secondary) for in a single arm feasibility trial. The intervention will be administered (NIH Stage 1B) within usual care management for hospice transitions with care partners of PLWD. This study will also examine hospice enrollment and time to enrollment, and care partner satisfaction with the intervention. The study population includes care partners and persons living with dementia; HHC professionals who engage in hospice transitions care management with care partners of PLWD (e.g., care managers who are nurses or social workers) and field nurses; Medical providers who engage in hospice transitions communication (e.g., home care physicians and nurse practitioners); HHC administrators who oversee and manage the delivery of care management prior to hospice transitions.
Interventions
BEHAVIORALDementia Care Management Checklist for Hospice Transitions
Intervention: After appropriate care partners of hospice-eligible PLWD are identified who will be receiving the checklist intervention, care managers will perform telephonic outreach to engage them in a conversation about care needs (as they would in typical clinical practice). The telephonic outreach will be followed up with a recommendation for follow up by a medical provider who may conduct a hospice care assessment and engage the care partner in decision-making surrounding the hospice referral and enrollment process. This intervention was co-designed with care partners, home healthcare professionals, administrators, and medical providers. It is meant to be comprehensive and speak to the needs of all relevant parties engaged in the care of persons with dementia. It is developed so that it can be scaled and implemented widely.
Sponsors
New York University
Visiting Nurse Service of New York
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Intervention model description
This is a Stage 1b clinical trial.
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
Inclusion: Care Partners and PLWD Dyad: 1. Care partners of PLWD who have a diagnosis of moderate to severe dementia. 2. Able to provide informed consent HHC Professionals: Care Managers and Field Nurses: 1. Care managers who regularly engage hospice transitions with care partners of PLWD 2. Age 18 or older Medical Providers: 1. Medical providers (e.g., physicians and nurse practitioners) who refer patients for hospice enrollment. 2. Age 18 or older HHC Administrators: 1. Home healthcare administrators who work with the Certified Home Health Agency or the Advanced Illness Management Program that refers patients to hospice care 2. Age 18 or older Exclusion Care Partner and PLWD Dyad 1. Under age 18 2. Care partners who are caring for PLWD with Mild Cognitive Impairment 3. PLWD with Mild Cognitive Impairment HHC Professionals: Care Managers, Medical Providers, Administrators 1\. Do not have experience managing hospice transitions for PLWD
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Feasibility of the Dementia Care Management Hospice Transitions Checklist | After enrollment and study participation, we will collect feasibility data within 1 month after intervention receipt. | The primary outcome is feasibility. Feasibility will be measured for each group including recruitment and retention rates, rate of completion of the intervention as the proportion of individuals who use and receive the intervention, and whether the different components of the intervention are achievable. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Acceptability of the Dementia Care Management Hospice Transitions Checklist | After intervention delivery, we will collect secondary outcome data within 1 month. | The secondary outcome is acceptability. Acceptability will be reflected in process measures required in a transitional care management intervention. For example, intervention components will be measured including if the care manager/interventionist successfully receives the training and resources to successfully deliver the intervention and the number of HHC professionals for whom the intervention was acceptable. Outcome measure: Percentage of participants who find the intervention acceptable. |
Countries
United States
Contacts
CONTACTKomal P Murali, PhD, RN, ACNP-BC
Outcome results
None listed