utilizing palliative leaders in facilities to transform care for alzheimer's disease

Conditions: Alzheimer Disease

Summary: the purpose of this study is to evaluate a comprehensive model for integrating both primary and specialty palliative care for older adults with dementia into nursing facilities. palliative care is a supportive care approach that aims to improve the quality of life of patients and their families facing serious or life-threatening illnesses, through the prevention and relief of suffering through the treatment of pain and other problems, using physical, psychosocial and spiritual approaches. palliative care is specialized medical care for people who are living with a serious illness. this type of care is focused on providing relief from the symptoms and from the stress of the illness. the goal is to improve quality of life for both patient and family. the uplift-ad model will include providing education on primary palliative care for residents with dementia to nursing facility staff, training nursing facility staff in providing primary palliative care, and providing access to specialty palliative care consultations for residents. to help understand the impact of these interventions, this study will also collect information about resident health, the care they receive, and perceptions of their quality of life according to both family members and nursing facility staff.

the objective of this proposal is to evaluate the effectiveness of the uplift-ad (utilizing palliative leaders in facilities to transform care for alzheimer's disease) intervention and to assess the implementation context of the intervention using a hybrid 1 trial design. the uplift-ad intervention includes 1) in-house pc champions trained to facilitate goals of care conversations with residents with alzheimer's disease and related dementias (adrd) and their surrogate decision-makers, screen residents for symptoms and other pc needs, provide symptom management and serve as a liaison to external pc consultants; 2) specialty pc consultants who provide consults for complex residents and families; and 3) primary pc education for nursing home (nh) staff. the study will use a randomized, stepped wedge design involving 16 diverse nhs in indiana and maryland and 640 residents, 640 family members and/or surrogate decision-makers, and 320 nursing facility staff.

Eligibility criteria:
inclusion criteria: - nursing home residents: * long-stay resident in an enrolled nursing home defined as not paying through medicare part a at the enrolled facility. * has a diagnosis of moderate to severe adrd, as measured on the minimum data set (mds) * length of stay \>30 days family members/surrogate decision makers: * family member and/or surrogate decision maker for an eligible resident in an enrolled nursing home * english-speaking nursing home staff: * staff, nurse, or nurse assistant in an enrolled nursing facility * english-speaking exclusion criteria: - nursing home residents: • short-stay resident, defined as paying through medicare part a at the enrolled facility and/or receiving respite care family members/surrogate decision makers: • non-english-speaking nursing facility staff: • non-english-speaking

Keywords: alzheimer disease palliative care dementia nursing home