Abstract
Purpose: There are 55 million cases of dementia worldwide and the cost of care for these individuals is estimated to rise to $2 trillion by 2030. Dementia-specific Advance Care Planning (ACP) can help to reduce the burdens of providing care to those diagnosed with dementia. This study sought to determine if the implementation of a dementia-specific ACP tool increases knowledge and decision-maker confidence, as well as decrease inappropriate healthcare utilization rates.
Method: At a Program for All-Inclusive Care for the Elderly (PACE), individuals diagnosed with a cognitive deficit (CD) and their surrogate decision-maker (SDM) were recruited as dyads to participate in an ACP pilot progam. A dementia-specific ACP tool was implemented. Knowledge of dementia was assessed for both members of the dyad and SDM confidence regarding their role as decision-maker. Chart review was used to obtain emergency department and inpatient admission healthcare utilization rates. Non-parametric analytics were utilized to analyze the data.
Results: Participants with CD showed no statistical significant improvement in knowledge dementia scores. SDMs showed statistically significant improvement in knowledge and confidence. The healthcare utilization rate decreased by five visits.
Conclusion: Findings suggest that individuals with CD and SDMs do not understand the terminality of a dementia diagnosis. SDMs do not know what kind of care their loved one would want at end-of-life. Dementia-specific ACP should be implemented with all individuals with CD and their SDMs, soon after diagnosis.
Notes
References:
Alzheimer’s Association. (2023). 2023 Alzheimer’s Disease Facts and Figures Retrieved from https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf
American Council on Aging. (2024, February 1). PACE programs as an alternative to nursing homes for Medicaid beneficiaries. MedicaidPlanningAssistance.org. Retrieved September 5, 2024, from https://www.medicaidplanningassistance.org/medicare-pace-programs/#:~:text=According%20to%20the%20National%20PACE%20Association%2C%20almost%2050%25%20of%20program,have%20a%20diagnosis%20of%20dementia.
Bosisio, F., Sterie, A. C., Rubli Truchard, E., & Jox, R. J. (2021). Implementing advance care planning in early dementia care: results and insights from a pilot interventional trial. BMC Geriatrics, 21(1). https://doi.org/10.1186/s12877-021-02529-8
Dixon, J. Karagiannidou, M., & Knapp, M. (2018). The Effectiveness of Advance Care Planning in Improving End of Life Outcomes for People With Dementia and Their Carers: A Systematic Review and Critical Discussion. Journal of Pain and Symptom Management, 55(1), 132–150.e1. https://doi.org/10.1016/j.jpainsymman.2017.04.009
Fried, T. R., Cohen, A. B., Harris, J. E., & Moreines, L. (2021). Cognitively Impaired Older Persons’ and Caregivers’ Perspectives on Dementia Specific Advance Care Planning. J Am Geriatr Soc, 69(4), 932–937. https://doi.org/10.1111/jgs.16953
Gaster, B. (2017). Dementia Directive. Advance Directive for Dementia. Retrieved from https://dementia-directive.org/
Geddis Regan, A., Errington, L., Abley, C., Wassall, R., Exley, C., & Thomson, R. (2020). Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions. Health Expect, 24(1), 19–32. https://doi.org/10.1111/hex.13167
Gotanda, H., Walling, A. M., Reuben, D. B., Lauzon, M., & Tsugawa, Y. (2022). Trends in advance care planning and end of life care among persons living with dementia requiring surrogate decision making. J Am Geriatr Soc, 70(5), 1394–1404. https://doi.org/10.1111/jgs.17680
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Sigma Membership
Kappa Epsilon at-Large
Type
Presentation
Format Type
Text-based Document
Study Design/Type
Quality Improvement
Research Approach
Translational Research/Evidence-based Practice
Keywords:
Dementia, Advance Care Planning or Advance Directive, Quality of Life, Dementia-specific Advance Care Planning, Hospice, Palliative, End-of-Life, Interprofessional, Interdisciplinary
Recommended Citation
Johnson, Stephanie Nichole, "Implementation of a Dementia-Specific Advance Care Planning Tool: A Quality Improvement Pilot" (2025). Biennial Convention (CONV). 37.
https://www.sigmarepository.org/convention/2025/presentations_2025/37
Conference Name
48th Biennial Convention
Conference Host
Sigma Theta Tau International
Conference Location
Indianapolis, Indiana, USA
Conference Year
2025
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All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record. All permission requests should be directed accordingly and not to the Sigma Repository. All submitting authors or publishers have affirmed that when using material in their work where they do not own copyright, they have obtained permission of the copyright holder prior to submission and the rights holder has been acknowledged as necessary.
Review Type
Abstract Review Only: Reviewed by Event Host
Acquisition
Proxy-submission
Date of Issue
2025-11-18
Implementation of a Dementia-Specific Advance Care Planning Tool: A Quality Improvement Pilot
Indianapolis, Indiana, USA
Purpose: There are 55 million cases of dementia worldwide and the cost of care for these individuals is estimated to rise to $2 trillion by 2030. Dementia-specific Advance Care Planning (ACP) can help to reduce the burdens of providing care to those diagnosed with dementia. This study sought to determine if the implementation of a dementia-specific ACP tool increases knowledge and decision-maker confidence, as well as decrease inappropriate healthcare utilization rates.
Method: At a Program for All-Inclusive Care for the Elderly (PACE), individuals diagnosed with a cognitive deficit (CD) and their surrogate decision-maker (SDM) were recruited as dyads to participate in an ACP pilot progam. A dementia-specific ACP tool was implemented. Knowledge of dementia was assessed for both members of the dyad and SDM confidence regarding their role as decision-maker. Chart review was used to obtain emergency department and inpatient admission healthcare utilization rates. Non-parametric analytics were utilized to analyze the data.
Results: Participants with CD showed no statistical significant improvement in knowledge dementia scores. SDMs showed statistically significant improvement in knowledge and confidence. The healthcare utilization rate decreased by five visits.
Conclusion: Findings suggest that individuals with CD and SDMs do not understand the terminality of a dementia diagnosis. SDMs do not know what kind of care their loved one would want at end-of-life. Dementia-specific ACP should be implemented with all individuals with CD and their SDMs, soon after diagnosis.
Description
The ever-growing population diagnosed with dementia demands attention and action by the nursing profession. Advanced practice nurses can help to decrease the burden of caring for individuals diagnosed with dementia, and other cognitive deficits, by implementing dementia-specific advance care planning soon after diagnosis. Dementia-specific ACP can improve understanding of dementia, increased surrogate decision-maker confidence, and potentially decrease inappropriate healthcare utilization.