Research conducted in the Netherlands found that a unique dementia advanced care planning model held benefits for families and health care providers but did not significantly increase goals-of-care documentation.
The Desired Dementia Care Towards End of Life model (DEDICATED) is designed to enhance patients’ quality of life by improving palliative care knowledge, competencies and interdisciplinary collaboration among health care professionals, including goals-of-care conversations.
“Advance care planning (ACP) is an essential component of palliative dementia care, as cognitive decline and communication difficulties can hinder discussions about palliative care preferences, making timely ACP crucial for aligning care with the wishes and needs of the person with dementia,” the study authors wrote. “However, health care professionals can experience difficulties with the timing of ACP conversations or lack confidence in their communication skills. In addition, insufficient knowledge and competencies can hinder the provision of person-centered palliative care at home or in nursing homes.”
The DEDICATED approach to dementia-specific palliative care consists of a training format and practice tools. These can be applied from the point of diagnosis and throughout the entire disease trajectory of the person with dementia, the research indicated.
Tools of the DEDICATED approach can be used during specific stages of the trajectory, according to the study. For instance, the tools for ACP might be more suitable in the diagnosis or early stages of dementia, while the tools for a warm transfer to a nursing home can be used later in the care trajectory.
The tools are oriented around six themes, according to the study:
- Awareness of the need for timely palliative care in dementia
- Familiarization with a person with dementia/with each other (e.g., getting to know the biography, values, and behavior of the person with dementia and family caregivers to provide person-centered palliative care)
- Communication about (future) care preferences as a part of advance care planning
- Interprofessional collaboration in advance care planning
- Interprofessional collaboration during care transitions
- Managing pain and responsive behavior (e.g., how health care providers respond when a person with dementia is in pain or behaves in a way that is experienced as challenging)
DEDICATED also includes a training program to educate providers on how to use the tools, as well as other palliative care principles. Professionals who have completed the training are designated as DEDICATED ambassadors, who then go on to disseminate information to their colleagues.
For the study, researchers conducted qualitative interviews with a cohort of DEDICATED ambassadors, collected questionnaire responses from dementia care teams as well as from bereaved families. The research took place in 28 dementia care wards in three health care organizations.
The research found that the DEDICATED approach raised awareness of person-centered palliative care and the importance of timely advance care planning. However, it showed no impact on health care professionals’ self-efficacy, work engagement and psychological empowerment. The frequency of ACP discussion and quality of end-of-life care showed no significant differences over time.
The research period overlapped with the COVID-19 pandemic, which could have influenced the results, according to the study authors.
“DEDICATED ambassadors found the DEDICATED approach to be of value in enhancing person-centered palliative care,” the authors wrote. “Although quantitative assessments of health care professionals’ competence did not fully capture this, the positive feedback received suggests that more time may be needed for the approach to be fully integrated into practice. This could explain the modest results observed among team members and bereaved family caregivers. Future research should explore the long-term impact of the DEDICATED approach using longitudinal study designs.”
