Research news: dementia and place of care

3rd April 2019

Given a hypothetical choice most people would like to die at home. Dying in one’s preferred place is a quality marker for end-of-life care.  But little is known about preferred place of death, or the factors associated with achieving this, for people with dementia.

Researchers based at the Cicely Saunders Institute decided to investigate preferences for place of death among people with dementia to identify factors associated with achieving these preferences.

This is the first study to compare preferred and actual place of death for people dying with dementia. The researchers looked at adults with a diagnosis of dementia who died between December 2015 and March 2017, and were registered on Coordinate My Care.  Coordinate My Care (CMC) is an electronic palliative care coordination system hosted by the Royal Marsden NHS Foundation Trust, and is available to all patients with chronic illness living in London. CMC records are stored on a secure digital platform that enables access by healthcare providers including acute hospitals, primary care, ambulance services and emergency departments.  To date CMC records have been created for over 50,000 patients.

Preferred place of death most commonly care homes or home

From anonymised data on CMC, the researchers identified 1047 people who died with dementia between December 2015 and March 2017.  Information on preferred and actual place of death was available for 803 people.  Preferred place of death was most commonly a) care homes or b) home.  Most people with dementia had a recorded preference to die in a care home, or at home, and 83.7% died in their preferred location. Dying in the preferred place was more likely for those most functionally impaired.  People receiving symptomatic treatment only were more likely to achieve their preferred place of death.  In this study, low functional status was associated with increased chance of dying in a preferred place.

Conclusion

Most people with dementia want to die in a care home or at home.  There are factors that impact the likelihood of a patient dying in their preferred place. Achieving this is more likely where goals of treatment are symptomatic relief only, indicating the importance of advance care planning.

Enabling people with dementia to remain in their usual place of residence is considered an essential component of good care. Understanding preferences for place of death and the factors that influence achieving these could guide service development and lead to more people dying in their preferred place.

Publication

Wiggins N, Droney J, Mohammed K, Riley J, Sleeman KE. Understanding the factors associated with patients with dementia achieving their preferred place of death: a retrospective cohort study.  Age and Ageing 2019; 0: 1.7  Doi: 10.1093/ageing/afz015