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

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.