Dying with dementia: symptom burden, quality of care, and place of death

Abstract

Background: No detailed information has been available until now about the care setting, circumstances and place of death, symptom burden, and quality of care of persons with end-stage dementia in Germany.

Methods: This cross-sectional study is based on a random sample of 5000 persons who died in the period from 25 May to 24 August 2008 in the German federal state of Rhineland-Palatinate. Their surviving relatives were contacted and asked to participate in a questionnaire survey. Data were obtained in this way for 310 persons with dementia and 931 persons without dementia.

Results: 42.4% of the persons with dementia died at home. Most patients and their relatives preferred death at home to death anywhere else (94.8% of patients, 77.5% of relatives). Persons living with at least one relative were more likely to die at home (adjusted odds ratio [aOR] 4.69, 95% confidence interval [CI] 2.71-8.11). According to information supplied by the relatives, the overwhelming majority of patients suffered, two days before death, from moderate to severe weakness (94.9%), fatigue (94.4%), disorientation/confusion (86.9%), and appetite loss (86.4%). Other common symptoms were anxiety (61.0%), tension (59.9%), dyspnea (56.7%), and pain (52.5%). The relatives were critical of the quality of care on standard hospital wards, citing the limited temporal availability of staff and limited emotional support.

Conclusion: These data indicate the high symptom burden of persons with dementia in Germany at the end of their lives. They underscore the need for proper palliative care in all of the settings where persons with dementia die. Specialized in- and outpatient palliative care should not be offered only to patients with cancer, but should rather be made available to all who need it.

Figure 1

The place of death of persons with and without dementia ^*1,*2No data on place of death were available from one person with dementia and four persons without dementia; these persons were not considered in the creation of this figure ^*3p<0.001 for Pearson’s chi-square test

Figure 2

Moderate to severe physical, psychological and social burden of persons with and without dementia two days before death. ^*1p<0.05 for Pearson’s chi-square test; ^*2p<0.01 for Pearson’s chi-square test; ^*3p<0.001 Pearson’s chi-square test; the numbers in parentheses indicate how many relatives answered the item in question (missing values not shown), stratified by disease status. For example, “(237/723)” under “Weakness” indicates that 237 of the surviving relatives of persons with dementia, and 723 of those of persons without dementia, gave information on the severity of weakness (if any) in their deceased relative