Palliative care for people with dementia

5th July 2021

Early recognition of palliative care needs is recommended to improve the quality of life for people approaching death, but the benefits of recognising palliative care needs for people with dementia are not known.

Hospital admissions among people dying with dementia are common. It is not known whether identification of palliative care needs could help prevent unnecessary admissions.

People with dementia have a significant symptom burden and experience a rapid increase in non-elective admissions to hospital in their last months of life. They can experience barriers to accessing palliative care services, which may be exacerbated by difficulties in identifying patients in their last year of life.

Researchers based at the Cicely Saunders Institute decided to examine the proportion of people with dementia identified as having palliative care needs in their last year of life, and the association between identification of needs and the use of primary, community and hospital services in the last 90 days.

The team used Discover, an administrative and clinical dataset from 365 primary care practices in London. The researchers looked at data of people diagnosed with dementia and registered with a general practitioner in North West London (UK) who died between 2016 and 2019 to identify people who experienced multiple non-elective hospital admissions in the last 90 days of life, and/or contact with primary and community care providers to examine the association between identification of palliative care needs with outcomes.

The researchers found that 1953 of 5804 (33.6%) people with dementia were identified as having palliative care needs in their last year of life; for 812 (14.0%) this occurred during the last 90 days of life, whereas 1141 people (19.7%) were identified as having palliative care needs prior to the last 90 days of life.

Identification of palliative care needs in people with dementia is associated with more primary and community care contacts, including more community palliative care contacts, and fewer hospital admissions in the last 90 days of life.

Despite incentives to improve recognition of palliative care needs, the proportion of people with dementia identified as having palliative care needs remains low. Further research is needed to understand strategies to help primary care physicians to improve early recognition of palliative care needs in their patients with dementia.

The early recognition of palliative care needs among people with dementia could be an important component of interventions aiming to reduce unnecessary unplanned admissions to hospital at the end of life.

Leniz J, Higginson IJ, Yi D, Ul-Haq Z, Lucas A, Sleeman KE. Identification of palliative care needs among people with dementia and its association with acute hospital care and community service use at the end-of-life: A retrospective cohort study using linked primary, community and secondary care data. Palliat Med. 2021 May 31:2692163211019897. doi: 10.1177/02692163211019897. Epub ahead of print. PMID: 34053356.