As the population ages, the incidence rate of Alzheimer's Disease and Related Disorders (dementia) is expected to triple. The National Alzheimer's Plan recognizes that while the number of persons with dementia (PWD) is increasing substantially, the healthcare and long term care systems are unprepared to provide high quality, effective and efficient care to the PWD and their caregivers. PWD often have many behavioral and psychological symptoms of dementia (BPSD) including agitation, depression and sleep disturbances, that affect both the quality of life of the PWD and the caregiver. Unfortunately, due to a lack of programs to insert evidence-based care into the community, and hospice system specifically, PWD receive inappropriate and even harmful care. We have developed the Dementia Symptom Management at Home (DSM-H) Program to implement dementia friendly care for PWD and their caregivers in the community. Initially developed for use in home healthcare, we have modified the program for use in hospice. The DSM-H Hospice Edition is a systems level change program that includes workforce training, and agency level workflow changes. Through the Hospice Advanced Dementia Symptom Management and Quality of Life (HAS-QOL) Trial, in the R61 phase, we will:
Aim 1 : Establish the infrastructure necessary for implementing a pragmatic clinical trial of the DSM-H Hospice Edition.
Aim 2 : Further tailor the DSM-H program specifically for hospice IDT members caring for PWD receiving end of life care and adapt for wide-scale implementation in hospice.
Aim 3 : Pilot test the complete protocol in 2 hospice agencies and refine the protocol further based on feedback from the pilot agencies. Following successful completion of the milestones at the end of the R61 year surrounding feasibility, applicability, and fidelity, we will move forward with the R33 phase where, we will:
Aim 4 : Conduct a pragmatic, randomized stepped wedged cluster RCT of the Dementia Symptom Management at Home Program Hospice Edition with advanced dementia patients living at home (N=30/agency per month) in 25 hospice agencies comparing antipsychotics (Primary Outcome) and analgesic use (Secondary Outcome) before and after implementation.
Aim 5 : Compare the rates of hospice continuous, inpatient and temporary respite care hours provided, and rate of permanent institutionalization in a nursing home prior to and after implementation (Secondary Outcomes).
Aim 6 : Assess care satisfaction of the bereaved primary caregiver. (Secondary Outcome) Exploratory Aim 7: Assess the spillover effects of the DSM- H on hospice patients who are identified as having dementia as a comorbidity, and advanced dementia patients who are living in nursing homes. This is an innovative proposal as it would be the first large-scale pragmatic trial in a hospice focused on PWD and their caregivers, and has a strong scientific premise, rigor and potential for reproducibility. Following completion of the trial, should the findings show that the DSM-H Hospice Edition is effective in improving quality of care and has high adoption and implementation fidelity, we will develop a technical assistance center through the Hartford Institute for Geriatric Nursing to disseminate the model of care.
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.
