In the year 1907, Dr Alois Alzheimer published a case report on Mrs Auguste Deter. 1
On July 12, 1905, in the Psychiatric Unit at the University Clinic in Frankfurt, Dr Alzheimer recorded that Mrs Auguste Deter appeared completely dazed, was totally silent, and lay on her bed, with her knees drawn up, in a constant pool of urine and feces. She was also visibly losing weight. The last 15 lines of this communication described her final days. At the beginning of 1906, she developed decubitus ulcers, and her physical deterioration was progressive. Throughout the month of March 1906, she had a fever of up to 40°C. She was diagnosed with pneumonia and continued to be very agitated and cried out noisily. Finally, at quarter past 6 on April 8, 1906, she passed away. The initial autopsy showed cause of death to be septicemia due to the bed sores and blood poisoning.
Mrs Auguste Deter had the highest Mini Suffering State Examination (MSSE) scale 2 score, which was at 10/10 (Table 1). She was “not calm, screaming, in pain, suffering from decubitus ulcers, malnutrition and eating disorders, and had undergone invasive actions.” She was in an unstable medical condition and was suffering according to the description of Dr Alzheimer. My colleagues and I concur with that opinion.
Table 1.
Proposed Mini Suffering State Examination (MSSE) Scale Score of Mrs Auguste Deter During Her Last Days of Life in the Year 1906.a
| Suffering items scale score: 10/10 | |
|---|---|
| Not calm | yes |
| Screams | yes |
| Pain | yes |
| Decubitus ulcers | yes |
| Malnutrition | yes |
| Eating disorders | yes |
| Invasive action | yes |
| Unstable medical condition | yes |
| Suffering according to family opinion | yes |
| Suffering according to medical opinion | yes |
a The MSSE score interpretation: low level of suffering 0 to 3, intermediate level of suffering 4 to 6, and high level of suffering 7 to 10.
The MSSE scale, developed in 1999 and described by us, was tested using the Cronbach’s α model, which demonstrated its significant reliability (α = .798). A κ agreement coefficient of .791 between 2 observers was found. Both observers found significant association between the 3 MSSE levels and age (P = .02), hemoglobin (P = .02), albumin (P < .001), cholesterol (P = .04), and use of analgesics or antipsychotics (P = .04).
Convergent validity of the MSSE scale was proven by Pearson correlation with Symptom Management in End-of-Life in Dementia scale (r = .574, P < .0001) and Comfort Assessment in Dying with Dementia scale (r = −.796, P < .0001).
A high MSSE scale score with a range of 7 to 10 indicates a high level of suffering and reflects the severity of the medical condition in end-stage dementia.
According to the MSSE scale, it has been confirmed that patients with end-stage dementia represent a heterogeneous group and have different levels of suffering and accordingly proved a significant concurrent validity. The results of our research showed that care in the geriatric department fails to decrease the high level of suffering in patients with end-stage dementia. The total score of MSSE scale on the day of admission was 5.62 ± 2.31 and increased to 6.89 ± 1.95 on the last day of life with a significant test–retest reliability (P < .0001). 3
The group differences among the survival times of the 3 MSSE scale scores was evaluated by Kaplan-Meier analysis (log rank, P = .0018, Breslow, P = .0027) and were significant. The results of the Cox proportional Hazard model of survival showed a high correlation between high MSSE scale score and high risk of mortality and short survival of patients with end-stage dementia during the last 6 months of life with significant predicting validity (P = .013). 4
The suffering assessment 5 –7 and quality of dying evaluation 8 –10 are important in advanced dementia. This first description of advanced dementia by Dr Alois Alzheimer is a reminder of the reality of the torment and anguish of these patients. In fact, in our previous studies, most patients with end-stage dementia had a high suffering level upon their demise. 11
The medical, functional, cognitive, and emotional condition of Mrs Auguste Deter during her last months and days are characteristic of the Aminoff suffering syndrome.
Aminoff suffering syndrome in advanced dementia is a proposed symptomatologic and pathological entity 12 –14 with irreversible and intractable aggravation of suffering and medical condition until death and could be prognostic indicator of 6-month mortality 15,16 in elderly people with advanced dementia and a key criterion for enrolling patients to palliative settings or alternatively to relief of suffering units.
References
- 1. Alzheimer A. Über eine eigenartige Erkrankung der Hirnrinde. Allgemeine Zeitschrift fűr Psychiatrie. 1907;64:146–148. [Google Scholar]
- 2. Aminoff BZ, Purits E, Noy SH, Adunsky A. Measuring the suffering of end-stage dementia: reliability and validity of the Mini Suffering State Examination. Arch Gerontol Geriatr. 2004;38(2):123–130. [DOI] [PubMed] [Google Scholar]
- 3. Aminoff BZ, Adunsky A. Dying dementia patients: too much suffering, too little palliation. Am J Alzheimers Dis Other Demen. 2004;19(4):243–247. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4. Aminoff BZ, Adunsky A. Their last six months of life: suffering and survival of end-stage dementia patients. Age Ageing. 2006;36(5):597–601. [DOI] [PubMed] [Google Scholar]
- 5. Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. New Engl J Med. 2009;361(16):1529–1538. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6. Mitchell SL, Black BS, Ersek M, et al. Advanced dementia: state of the art and priorities for the next decade. Ann Intern Med. 2012;156(1 pt 1):45–51. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7. Krikorian A, Limonero JT, Corey MT. Suffering assessment: a review of available instruments for use in palliative care. J Palliat Med. 2013;16(2):130–142. [DOI] [PubMed] [Google Scholar]
- 8. van Soest-Poortvliet MC, van der Steen JT, Zimmerman S, et al. Measuring the quality of dying and quality of care when dying in long-term care settings: a qualitative content analysis of available instruments. J Pain Symptom Manage. 2011;42(6):852–863. [DOI] [PubMed] [Google Scholar]
- 9. Cohen LW, van der Steen JT, Reed D, et al. Family perceptions of end-of-life care for long-term care residents with dementia: differences between the United States and the Netherlands. J Am Geriatr Soc. 2012;60(2):316–322. [DOI] [PubMed] [Google Scholar]
- 10. van Soest-Poortvliet MC, van der Steen JT, Zimmerman S, et al. Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia. Qual Life Res. 2012;21(4):671–684. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11. Aminoff BZ, Adunsky A. Dying dementia patients: too much suffering, too little palliation. Am J Hosp Palliat Care. 2005;22(5):344–348. [DOI] [PubMed] [Google Scholar]
- 12. Aminoff BZ. Aminoff Suffering Syndrome: a New Pathological Entity in End-Stage Dementia. 10th International Conference on Alzheimer's Disease and Related Disorders; July 15-20, 2006, Madrid, Spain In: Alzheimer’s Disease: New Advances, Medimond International Proceedings; 2007:55–59. [Google Scholar]
- 13. Aminoff BZ. End-stage dementia: Aminoff suffering syndrome and decubitus ulcers. Dementia. 2012;11(4):473–481. [Google Scholar]
- 14. Aminoff BZ. Measurement of Suffering in End-Stage Alzheimer’s Disease. Tel Aviv, Israel: Probook, Dyonon; 2007. [Google Scholar]
- 15. Aminoff BZ. Mini-suffering state examination scale: possible key criterion for 6 months’ survival and mortality of critically ill dementia patients. Am J Hosp Palliat Med. 2008;24(6):470–474. [DOI] [PubMed] [Google Scholar]
- 16. Brown MA, Sampson EL, Jones L, Barron AM. Prognostic indicators of 6-month mortality in elderly people with advanced dementia: a systematic review. Palliat Med. 2013;27(5):389–400. [DOI] [PMC free article] [PubMed] [Google Scholar]