ABSTRACT
Untreated pain in people with Alzheimer's disease continues to be a serious public health problem. Pain is a subjective and complex experience that becomes increasingly challenging to assess as cognition declines. Our understanding of pain processing is incomplete, particularly for special populations such as people living with Alzheimer's disease, and especially in the advanced stages of the disease. Pain-processing networks in the brain are altered in Alzheimer's disease, yet evidence suggests people living with Alzheimer's disease do not experience less pain. Rather, their pain is not adequately recognized or treated. Although scholarly publications provide important assistance, recent widespread reports and guidelines do not include sufficient guidance, especially as Alzheimer's disease progresses to the last stages. Additionally, current pain measurements may not accurately evaluate pain in this condition, and the existing definitions of pain are not adequate when considering the effects of Alzheimer's disease on pain-processing in the brain. There is a need for new, widespread policies, guidelines, and definitions to help clinicians adequately manage pain in people with Alzheimer's disease. These will need to hinge on continued research because it remains unclear how Alzheimer's disease impacts central pain processing, pain expression, and communication of pain. In the meantime, policies and guidelines need to highlight current best practices as well as the fact that pain continues in Alzheimer's disease.
Subject(s)
Alzheimer Disease , Pain , Alzheimer Disease/complications , Cognition , Humans , Pain Measurement , PolicyABSTRACT
BACKGROUND: Home-based palliative care (HBPC) is an important aspect of care for patients with moderate to advanced stages of chronic obstructive pulmonary disease (COPD) and their caregivers. HBPC provides symptom management, advanced care planning and goals of care conversations in the home, with the goal of maximizing quality of life and minimizing health care utilization. There is a gap in the knowledge of how the patients with COPD and their caregivers experience HBPC. The overall purpose of this study is to describe which aspects of HBPC were the most meaningful to patients with COPD, and their caregivers. METHODS: Through a descriptive design with narrative analysis methodology, we interviewed COPD patients and their caregivers to investigate their experience of HBPC received in the 30 days post hospitalization for a COPD exacerbation. A thematic analysis was conducted and the patient and caregiver interviews were analyzed in dyad using thematic analysis. RESULTS: A total of 10 dyads were interviewed. Patients and their caregivers perceived 3 times as many facilitators as barriers of receiving home-based palliative care in the 30 days post hospitalization for a COPD exacerbation. The outcomes of this study provide information that describes the aspects of HBPC that patients and their caregivers found most meaningful. CONCLUSION: An understanding of the most meaningful aspects of HBPC from the perspectives of the patients with COPD and their caregivers can be used to inform the development of the best model for HBPC for this patient population.
ABSTRACT
The purpose of this update is to summarize and critique research articles in Hospice and Palliative Care from 2018 that are pertinent and impactful in informing clinical practice. The articles were presented at the 2019 Annual Assembly of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA). Eight original research articles published between January 1, 2018, and December 31, 2018, were identified through a systematic PubMed search using the terms "hospice" and "palliative care," a hand search of 22 leading healthcare journals, and discussion with experts in the field. The final articles were chosen based on each study's methodological quality, its ability to be applied across different care settings, and its ability to impact clinical practice. We summarize the eight articles that were chosen and identify ways the articles can be used to inform clinical practice.
