Assessing Palliative Care Content in Dementia Care Guidelines: A Systematic Review

CONTEXT: Families of persons with dementia continue to report unmet needs during end of life (EOL). Strategies to improve care and quality of life for persons with dementia include development of clinical practice guidelines (CPGs) and an integrative palliative approach. OBJECTIVES: We aimed to assess palliative care content in dementia CPGs to identify the presence or limitations of recommendations and discussion pertaining to common issues or domains affected by illness as described by the Canadian Hospice Palliative Care Association "Square of Care." DESIGN: A systematic review of databases and gray literature was conducted for recent CPGs. Guidelines meeting inclusion criteria were evaluated using the Appraisal of Guidelines for Research and Evaluation II instrument. Quality CPGs were analyzed through organizational template analysis using illness domains described by the "Canadian Hospice Palliative Care Association Model." The study protocol is registered at PROSPERO (CRD 42015025369). RESULTS: Eleven CPGs were selected and analyzed from 3779 citations. Nine guidelines demonstrated the maximum level of content regarding physical, psychological, and social care. Conversely, spiritual care was either absent (three) or minimal (three) in CPGs. Six CPGs did not address loss or grief, and seven CPGs did not address or had minimal content regarding EOL care. CONCLUSIONS: The lack of content surrounding grief represents a gap for this population at high risk for complicated grief and chronic sorrow. Results of this review require attention by CPG developers and researchers to develop evidence-based recommendations surrounding spiritual care, EOL, and grief.