Jennifer A Palmer1, Alyssa M Smith2, Rabbi Sara Paasche-Orlow3, George Fitchett4. 1. The Hinda & Arthur Marcus Institute for Aging Research, Hebrew SeniorLife, Roslindale, Massachusetts, USA. Electronic address: japalmer5@gmail.com. 2. Independently Employed, Bethesda, Maryland, USA. 3. Department of Spiritual Care, Hebrew SeniorLife, Roslindale, Massachusetts, USA. 4. Rush University Medical Center, Chicago, Illinois, USA.
Abstract
CONTEXT: Dementia marks an increasingly prevalent terminal illness for which palliative care, including spiritual care, could improve quality of life. Research gaps exist in understanding the intersection of dementia, spirituality, and palliative care. OBJECTIVES: We conducted the first scoping review examining the nature and breadth of peer-reviewed studies across these three topics to guide future research. METHODS: The scoping review followed methods from The Joanna Briggs Institute Reviewers' Manual (2015). We developed a priori a scoping review protocol outlining the population, concept, and context for study; data sources; search strategy; inclusion/exclusion criteria; and procedure for screening, extracting, and analyzing data. RESULTS: The final sample consisted of 19 studies with the following themes: characterizing spiritual needs, preferences, and resources; characterizing palliative or spiritual care; predicting provision of spiritual care; and assessing spiritual care interventions. Eighteen studies were published in the past decade, and 11 studies were based in Europe. Most studies focused on long-term care settings, grouped stages of dementia or did not specify dementia stage, and investigated interventions indirectly related to spiritual care. Many studies were limited in sample size and generalizability/transferability and used less sophisticated research designs. CONCLUSION: Research across dementia, spirituality, and palliative care needs to examine settings beyond long-term care, distinct stages of dementia, and formal spiritual care interventions plus use rigorous study designs (e.g., randomized clinical trials). Such research could advance practice and policy that enhance quality of life for tens of millions of persons with dementia and their family members worldwide.
CONTEXT: Dementia marks an increasingly prevalent terminal illness for which palliative care, including spiritual care, could improve quality of life. Research gaps exist in understanding the intersection of dementia, spirituality, and palliative care. OBJECTIVES: We conducted the first scoping review examining the nature and breadth of peer-reviewed studies across these three topics to guide future research. METHODS: The scoping review followed methods from The Joanna Briggs Institute Reviewers' Manual (2015). We developed a priori a scoping review protocol outlining the population, concept, and context for study; data sources; search strategy; inclusion/exclusion criteria; and procedure for screening, extracting, and analyzing data. RESULTS: The final sample consisted of 19 studies with the following themes: characterizing spiritual needs, preferences, and resources; characterizing palliative or spiritual care; predicting provision of spiritual care; and assessing spiritual care interventions. Eighteen studies were published in the past decade, and 11 studies were based in Europe. Most studies focused on long-term care settings, grouped stages of dementia or did not specify dementia stage, and investigated interventions indirectly related to spiritual care. Many studies were limited in sample size and generalizability/transferability and used less sophisticated research designs. CONCLUSION: Research across dementia, spirituality, and palliative care needs to examine settings beyond long-term care, distinct stages of dementia, and formal spiritual care interventions plus use rigorous study designs (e.g., randomized clinical trials). Such research could advance practice and policy that enhance quality of life for tens of millions of persons with dementia and their family members worldwide.