Living with an older person dying from cancer, lung disease, or dementia: health outcomes from a general practice cohort study

Elizabeth L. Sampson*, Rebecca Lodwick, Greta Rait, Bridget Candy, Joe Low, Michael King, Irene Petersen

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Context - Increasing numbers of people will die from chronic disease. Families contribute significantly to end-of-life care, but their role may not be recognized. 

Objectives - To 1) establish the proportion of older cohabitees identified in primary care as "carers"; 2) describe demographic and lifestyle characteristics of cohabitees of people terminally ill with cancer, dementia, and chronic obstructive pulmonary disease (COPD); 3) describe their health a year before and after bereavement; and 4) compare health outcomes between cohabitees of people dying with cancer, COPD, or dementia. 

Methods - Retrospective cohort study using a U.K. primary care database (The Health Improvement Network) of 13,693 bereaved cohabitees (a proxy marker for being a carer), aged 60 years or older of people dying from cancer, COPD, or dementia. Characteristics were described one year before and after bereavement. We compared cancer, COPD, and dementia cohabitee outcomes using incidence rate ratios one year before and after bereavement and calculated mortality risk after bereavement. 

Results - A total of 6.9% of cohabitees were recorded as carers. Health outcomes differed little between the three groups of cohabitees in the year before or after bereavement. The proportion of cohabitees with six or more consultations increased the year after bereavement (cancer cohabitees 16.0% to 18.8%, COPD cohabitees 17.8% to 20.4%, and dementia cohabitees 15.5% to 17.5%). At postbereavement (follow-up median 3 years, interquartile range 1.3-5.4), we found no mortality differences between the three groups. 

Conclusion - Recording of carers of terminally ill people was suboptimal. Cause of bereavement produced few differential effects on health outcomes or mortality.

Original languageEnglish
Pages (from-to)839-848
Number of pages10
JournalJournal of Pain and Symptom Management
Issue number5
Early online date16 Feb 2016
Publication statusPublished - 1 May 2016


  • bereavement
  • Caregivers
  • epidemiology
  • palliative care
  • primary health care


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