Defining optimal palliative care for people with dementia

As the number of people with dementia increases all over the world, there is a growing need for dementia-specific palliative care.

Three years ago, the EAPC started work on defining palliative care for dementia patients, as distinct from palliative care needs for other patient groups.

The disease trajectory of dementia, and the needs of those with dementia, differ from other terminal illnesses. Prognostication in dementia is difficult and older people (who are more likely to have dementia) are are also more likely to suffer from co-morbidities.

In addition to physical and cognitive problems, dementia can also involve behavioural problems or neuropsychiatric symptoms such as apathy or depression. Communicating with people with dementia, and their families, also presents specific challenges. Specific support for families around helping them provide care and make decisions on behalf of the patient is also key.

The EAPC paper defines optimal palliative care for older people with dementia by making 57 recommendations (within 11 domains) and is aimed at people working in policy and research as well as those providing care.

The 11 domains are:

1. applicability of palliative care
2. person-centred care, communication and shared decision making
3. setting care goals and advance planning
4. continuity of care
5. prognostication and timely recognition of dying
6. avoiding overly aggressive, burdensome or futile treatment
7. optimal treatment of symptoms and providing comfort
8. psychosocial and spiritual support
9. family care and involvement
10. education of the health care team
11. societal and ethical issues.

In their discussion of the paper, the authors highlight the importance of taking into account local culture and practice when implementing the recommendations. For example, there may be sensitivities around treating intake problems and families’ needs for information regarding euthanasia.

The authors also suggest that the recommendations can be used as a framework to help to identify gaps in curricula or in information provided to families, in the development and implementation of policies, to develop quality indicators or to make comparisons with definitions or conceptualisations of palliative care in other progressive chronic diseases.

Full details of recommendations, including explanatory text, is available to download alongside the Palliative Medicine article which outlines the development of the recommendations. Further background can also be found on the EAPC website.