Project Description: Palliative care needs of people with dementia are not widely recognised. Many of them suffer unnecessary pain and undergo needless interventions which do not improve the quality of care. The care is often uncoordinated. Prolonged and progressive decline in functions complicate the matters further. According to the WHO, palliative care is an approach to enhance the quality of life of patients and their families which consists of early identification, assessment and treatment of pain and other problems- physical, psychosocial and spiritual. There are several guidelines which describe the criteria and domains to define optimal palliative care in dementia. Most, if not all of these guidelines are from developed country settings with high resources. Multidisciplinary assessments, anticipatory care, interventions which only improve the quality of life, avoiding unnecessary transfers, advanced planning, shared decision making and adequate pain management are the core features of these guidelines. In this study we attempt to explore how relevant these criteria are in a low resource setting in terms of attitudes, finances as well as trained professionals. We reveal the barriers in providing optimal palliative care but also describe the facilitators when there are good models of practice to follow. The study included medical and nursing staff; trained and untrained carers who work in dementia care homes and health care personnel from palliative care settings. The study consisted of two stages. Semistructured interview of the sixty participants based on existing guidelines was followed by focus groups in the second stage which discussed the themes emerging from the interviews. Qualitative data categorisation was done using a thematic analytic approach. Many do not view dementia as a terminal condition. Close involvement of family in the care of patients is facilitatory in improving the care quality. Multidisciplinary models of working are gaining attention in dementia care. Most participants believe educational and training programmes for qualified and unqualified staff impart skills, change attitudes and also help in exploring their own beliefs and attitudes towards death and terminal illnesses. There are several other findings which may be relevant in high resource settings as well. These findings will be discussed in detail.
Kumar, S., Varghese, B., & Kuriakose, J. R. (2014). P2-339: OPTIMAL PALLIATIVE CARE IN DEMENTIA: BARRIERS AND FACILITATORS IN A LOW-RESOURCE SETTING. Alzheimer’s & Dementia, 10, P603–P603. https://doi.org/10.1016/j.jalz.2014.05.1018