New study provides insights on palliative care for early dementia

17/06/2024

A recent scoping review, published in the Journal of Pain and Symptom Management, aimed to map the current research on palliative care during the early stages of dementia. The review, carried out by Karen de Sola-Smith and colleagues, encompassed scientific literature from databases such as PubMed, CINAHL, EMBASE, Cochrane, PsycINFO and Web of Science, focusing on studies published in English over the last decade until March 2022. The review revealed that, out of the 77 reviewed papers, only a few specifically focused on palliative care for the early stages of dementia. The key findings were first, that the term ”early" palliative care lacks a clear definition in the literature. However, the evidence suggests that palliative care needs emerge at or before diagnosis and continue throughout the disease trajectory. 

The authors also highlight 'tipping points,' which are critical moments when providing or adapting palliative care is essential. These moments can occur when there are changes in symptoms, functional status or caregiving needs. According to the review results, early-stage dementia palliative care needs encompass several key aspects. These include advocating for future care that aligns with the goals of the person with dementia, providing reassurance to prevent feelings of neglect and abandonment, planning for future care scenarios (covering practical, personal and relationship needs) and establishing long-term relationships with trusted care providers. Effective palliative care for early dementia might include having open discussions about care goals and guiding families to build support networks. It can also cover the provision of helpful tools and resources for families, personalised care that considers the individual’s needs and ensuring that dementia-care providers are well prepared. 

The authors conclude that there is a significant lack of evidence on palliative care provision in the context of early-stage dementia. They recommend that future research focuses on developing tools to determine the best timing for palliative care in early dementia. New research and tools should also focus on better understanding the needs of people with dementia and their families during the early stages, and training caregivers and families to maintain clear communication about care goals and future plans. https://pubmed.ncbi.nlm.nih.gov/38848792/