The effectiveness and appropriateness of a palliative approach to care for people with advanced dementia: a systematic review

Abstract

Background Dementia is a progressive and incurable disease which presents many challenges to care providers, particularly in terms of end-of-life care. A palliative approach; that is an approach to care which seeks to ease burdensome symptoms without attempting curative treatment, has been suggested as the most appropriate framework for addressing the needs of these people. Objectives The overall objective was to establish best practice in relation to palliative care for people with advanced dementia in terms of effectiveness and appropriateness. Search strategy The search strategy aimed to find both published and unpublished English language studies, published between 1997 and 2009. A three-step search strategy was utilised in each component of this review. Critical appraisal Quantitative, qualitative and discursive text articles were included in this review. Articles were assessed for congruence to the review criteria and then critically appraised for quality using the appropriate JBI tool. Data collection and analysis Data were extracted using the appropriate JBI data extraction tool for each methodology. No quantitative meta-analysis was possible due to clinical and statistical heterogeneity. Qualitative synthesis was performed with the JBI QARI tool. Discursive textual synthesis was performed with the JBI NOTARI tool. Results Quantitative studies recommended the use of do not resuscitate, do not hospitalise orders and other forms of advance directives to prevent interventions unwanted by the patient and/or their family. Feeding tubes and the use of intravenous antibiotics were not found to be an effective intervention. Interventions designed to treat the burdensome symptoms of advanced dementia (such as pain and agitation) were found to be of the most benefit to patients. Qualitative analysis found it distressing for families to discuss or plan for, a poor quality of life for their loved one during the process of dying. Decisions concerned with palliative treatment for the person with advanced dementia were found to be complicated by knowledge differences, lack of understanding of the disease trajectory of dementia, the unpredictable nature of dementia itself and religious and socio-economical issues. Textual analysis found that a palliative approach to end of life care in advanced dementia is both appropriate and effective in terms of benefit to patients and their significant others. Despite the large volume of data retrieved and analysed for this review, no studies examining the role of case-conferencing for managing the introduction of palliative care or managing a palliative approach met the inclusion criteria for this systematic review. Implications for practice Palliative care should be individualised to meet the needs of the patient, their family and the clinical context (Grade B) Families often need education to understand the disease trajectory of dementia (Grade B) Healthcare professionals may require education on providing palliative care for people with advanced dementia (Grade B) The most appropriate interventions are those which address quality of life issues (Grade C) Artificial nutrition and hydration appear to be of little or no benefit to people with advanced dementia (Grade B) There is some evidence to suggest that the use of IV antibiotics is of little benefit in end stage dementia (Grade C) Advance health directives are important and may help facilitate an approach to care at the end of life that is consistent with the patient's wishes and values (Grade B) Planning for the end of life should begin as soon as possible after a diagnosis of dementia (Grade B) The most appropriate and effective care is an approach which aims to palliate the unpleasant symptoms of advanced dementia (Grade B) Implications for future research There is a need for further studies in the area of palliation and advanced dementia, particularly high quality studies investigating palliative care case conferencing and other methods of arranging and planning end of life care for people with dementia. Conclusion There is some evidence to suggest that a palliative approach is both effective and appropriate for use with people who have advanced dementia. There is no evidence for or against the use of case-conferencing as a method of arranging care for people with advanced dementia.