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Table 6 Service development for terminal care in people with dementia and recommendations inferred from the EAPC dementia white paper, expert interviews and focus groups with family caregivers

From: Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

Prerequisites/requirements: what we need as a basis for good terminal care in dementia  
− Continuity of all aspects of care. Most important: relational continuity. Also, try not to change environment (physical and social environment) but strengthen/honor the person’s identity
− Optimal communication may be promoted by at least one central person (“a linchpin;” whether from outside, consultation services, or a coordinator from within a nursing home) who can analyse the situation and connect people (family and professional caregivers)
− Flexibility and open lines for communication between professionals
− People around who can take time (nursing staff and volunteers)
− Selected staff dedicated to optimize comfort for people dying with dementia
− Integrate expertise in dementia and palliative care, in a person as well as within a team. Therefore, need staff training and commitment so that they master both dementia and palliative care approach. At the least, they should have a basic level of understanding.
 
Perceived benefits – what has been achieved  
− Good communication, raising sensitive issues, addressing stereotypes and fear, resulted in families being satisfied with choice for the services, in retrospect
− Respectful care for both patient and family
− Creating a homely environment for people with dementia and their family members
− Bringing comfort and good symptom management
− Withholding of futile curative care (in some countries, especially so in the Netherlands)
− Some development and description of services, protocols and tools for dissemination.
 
Challenges – what still needs to be solved or requires ongoing work  
− Bring optimal care to where people are without intruding in familiar relationships
− Right balance of social and medical services
− Address widespread education needs, especially signaling skills of frontline (nursing) staff
− Funding mechanisms, especially for extra staff time or organizing volunteer services
− Explain palliative care and combat misperceptions of family and staff, and perhaps the general public, of what palliative care can do
− Work on more positive representation of nursing homes
− Describe and define best practice in detail such as use of which protocols, tools etc. and research into its effects and the most effective elements
− Best practice development as a project which hopefully becomes superfluous in time.