Table 2 The 22 of 57 EAPC recommendations of special importance in late stages: severe dementia and around dying

Domain 1. Applicability of palliative care (1/4 recommendations)

 1.2 Improving quality of life, maintaining function and maximizing comfort, which are also goals of palliative care, can be considered appropriate in dementia throughout the disease trajectory, with the emphasis on particular goals changing over time.^a

Domain 2. Person-centred care, communication, and shared decision making (0/6 recommendations)

Domain 3. Setting care goals and advance planning (1/7 recommendations)

 3.5 In more severe dementia and when death approaches, the patient’s best interest may be increasingly served with a primary goal of maximization of comfort.

Domain 4. Continuity of care (1/4 recommendations)

 4.1 Care should be continuous; there should be no interruption even with transfer

Domain 5. Prognostication and timely recognition of dying (1/2 recommendations)

 5.2 Prognostication in dementia is challenging and mortality cannot be predicted accurately. However, combining clinical judgement and tools for mortality predictions can provide an indication which may facilitate discussion of prognosis.

Domain 6. Avoiding overly aggressive, burdensome, or futile treatment (6/6 recommendations)

 6.1 Transfer to the hospital and the associated risks and benefits should be considered prudently in relation to the care goals and taking into account also the stage of the dementia.

 6.2 Medication for chronic conditions and comorbid diseases should be reviewed regularly in light of care goals, estimated life expectancy, and the effects and side effects of treatment.

 6.3 Restraints should be avoided whenever possible.

 6.4 Hydration, preferably subcutaneous, may be provided if appropriate, such as in case of infection; it is inappropriate in the dying phase (only moderate consensus).

 6.5 Permanent enteral tube nutrition may not be beneficial and should as a rule be avoided in dementia; skilful hand feeding is preferred (only moderate consensus).

 6.6 Antibiotics may be appropriate in treating infections with the goal of increasing comfort by alleviating the symptoms of infection. Life-prolonging effects need to be considered, especially in case of treatment decisions around pneumonia.

Domain 7. Optimal treatment of symptoms and providing comfort (4/6 recommendations)

 7.1 A holistic approach to treatment of symptoms is paramount because symptoms occur frequently and may be interrelated, or expressed differently (e.g., when pain is expressed as agitation).

 7.2 Distinguishing between sources of discomfort (e.g., pain or being cold) in severe dementia is facilitated by integrating views of more caregivers.

 7.3 Tools to assess pain, discomfort and behaviour should be used for screening and monitoring of patients with moderate and severe dementia, evaluating effectiveness of interventions.

 7.5 Nursing care is very important to ensure comfort in patients near death.

Domain 8. Psychosocial and spiritual support (2/4 recommendations)

 8.3 Religious activities, such as rituals, songs, and services may help the patient because these may be recognized even in severe dementia.

 8.4 For dying people, a comfortable environment is desirable.

Domain 9. Family care and involvement (3/8 recommendations, of which 1 only in part)

 9.2 (in part) Families may need support throughout the trajectory, but especially upon diagnosis, when dealing with challenging behaviour, with health problems, with institutionalization, with a major decline in health, and when death is near.

 9.7 Bereavement support should be offered.

 9.8 Following the death of the patient, family members should be allowed adequate time to adjust after often a long period of caring for the patient.

Domain 10. Education of the health care team (0/2 recommendations)

Domain 11. Societal and ethical issues (3/8 recommendations, of which one only in part)

 11.3 Collaboration between dementia and palliative care should be promoted.

 11.6 Economic and systemic incentives should encourage excellent end-of-life care for patients with dementia.

 11.8 (in part) National strategies for dementia, for palliative care, end-of-life care, and for long-term care should each include palliative care for dementia patients. Similarly, policy making on palliative care and long-term care settings should attend to dementia.