Identifying palliative care needs among nursing home residents with and without Alzheimer's Disease and related dementias - SUMMARY/ABSTRACT Nursing homes play a crucial role in caring for individuals facing serious illness, including many individuals living with Alzheimer's Disease and related dementias and multimorbidity. Nursing home residents commonly experience burdensome symptoms, reduced quality of life, unpredictable disease trajectory and low-quality end-of-life care. Despite the widely recognized need to enhance palliative care for this vulnerable population, nursing home residents, including those with Alzheimer's Disease and cognitive impairment rarely receive such care. This is partly due to difficulties identifying residents with unmet palliative care needs. The primary objective of the proposed study is to address the national priority of improving palliative care for nursing home residents by developing an efficient, innovative, and resident-centered method to identify those with unmet palliative care needs, communicate these needs to providers, and stratify residents to the appropriate level of palliative care (primary palliative care, specialty palliative care) with focus on enhancing applicability for residents with Alzheimer's Disease and related dementias. Specifically, the candidate seeks to (1) evaluate the content and face validity and iteratively refine a palliative care screening tool; (2) develop contextual understanding, implementation strategies, and training materials for the effective deployment of a palliative care screening tool, customized to the specific needs of the nursing home setting; and (3) pilot test the screening tool and training in real-world clinical settings and evaluate the psychometric properties of the palliative care screening tool. To achieve these aims, the project will involve a Delphi study with an expert panel and cognitive interviews with nursing home staff. Co-design workshops will be used to develop contextually relevant and effective training materials and implementation strategies for deploying the screening tool in nursing homes, ultimately enhancing successful integration and impact. The pilot study will enlist nursing home staff to implement the tool, scoring the tool quarterly alongside routinely collected assessment data. The specific training objectives that will provide the knowledge and skills to complete the research aims are to gain expertise in: (1) community-engaged research (including Delphi methods), (2) implementation context and strategies, and (3) conducting research with patients who have dementia and nursing home clinical trials. The research environment at the University of Colorado features a number of high-quality, well- established resources that will facilitate Dr. Cole's development. This proposal will provide the foundation for future clinical trials that test the efficacy, effectiveness and implementation of palliative care screening interventions to enhance care and outcomes for older adults with serious illness, such as Alzheimer's Disease and Related Dementias, living in nursing homes.
