Aminoff Suffering Syndrome
Aminoff Suffering Syndrome is a group of symptoms that can develop in people suffering end-stage Alzheimer's disease or dementia. It is named after Israeli geriatric physician Bechor Zvi Aminoff, who first defined, researched, and published about the syndrome. From 1999 - 2005, Aminoff researched the syndrome in the geriatric medicine department of Chaim Sheba Medical Center Tel Hashomer. In 2006, he publicly proposed the existence of the Aminoff Suffering Syndrome for the first time, speaking at the 10th International Conference on Alzheimer's Disease and Related Disorders in Madrid.[1] The Aminoff suffering syndrome is characterized by a high score on the Mini Suffering State Exam (MSSE); less than 6 months' survival for terminal patients; less than 1-month survival for dying patients; irreversible and intractable aggravation of medical conditions; and suffering until demise.[2][3]
Mini Suffering State Examination[edit]
The MSSE scale shown below (Table 1) is the first objective clinical tool for evaluating how much a person with advanced dementia is suffering. The MSSE scale is available in English, Hebrew, Dutch, Germane, Italian, Spanish and Slovenia, and covers 10 items; scores range from 0 - 10. A high MSSE scale score of 7 - 10 indicates a high level of suffering, and reflects the severity of the medical condition in advanced dementia.[4][5]
| Date | YES - 1 | NO - 0 |
| Not calm | ||
| Screams | ||
| Pain | ||
| Decubitus ulcers | ||
| Malnutrition | ||
| Eating disorders | ||
| Invasive action | ||
| Unstable medical condition | ||
| Suffering according to family opinion | ||
| Suffering according to medical opinion | ||
| Total MSSE score |
The MSSE Score Interpretation:
- Low level of suffering: 0-3
- Intermediate level of suffering: 4-6
- High level of suffering: 7-10
The MSSE scale was tested using the Cronbach α model, which demonstrated its significant reliability (α = 0.798). Convergent validity of the MSSE scale was proven by Pearson correlation with Symptom Management in End-of-Life in Dementia (SM–EOLD) scale (r = 0.574, P < 0.0001), and Comfort Assessment in Dying with Dementia (CAD–EOLD) scale [26, 27] (r = -0.796, P < 0.0001). The differences between the survival times of the three MSSE scale score groups were evaluated by Kaplan-Meier analysis (Log Rank, P = 0.0018, Breslow, P = 0.0027) 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 end-stage dementia patients during the last 6 months of life with significant predicting validity (P = 0.013). 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. Aminoff Suffering Syndrome was proposed as the key criterion for enrolling end-stage disease and dying patients to a hospice, or Relief of High Suffering with Dementia Units.[6][7][8]
Less than 20% of end-stage Alzheimer's patients experiencing Aminoff Suffering Syndrome survived for more than six months.[9][10][11]
63% of Alzheimer's patients were experiencing Aminoff Suffering Syndrome on the day they died.[12][13][14][15]
References[edit]
- ↑ Aminoff, Bechor Zvi (2016). "Not Calm and Aminoff Suffering Syndrome in Advanced Alzheimer's Disease". American Journal of Alzheimer's Disease and Other Dementias. 31 (2): 169–180. doi:10.1177/1533317515598858. ISSN 1938-2731. PMID 26294697. Unknown parameter
|s2cid=ignored (help) - ↑ Peisah, Carmelle; Jessop, Tiffany (2021). "In search of the holy grail of quality dying with dementia". International Psychogeriatrics. 33 (10): 1011–1013. doi:10.1017/S1041610220003658. ISSN 1041-6102. PMID 34105447 Check
|pmid=value (help). Unknown parameter|s2cid=ignored (help) - ↑ Nash, Maureen C.; Patel, Amita R.; Rose, Susan S.; Swantek, Sandra S. (2020-04-01). "The Imperative for Person-Centered Dementia Care: Focus on Assessing and Working With Long-Term Care Residents Rather Than Percentage of People on a Medication". Journal of the American Medical Directors Association. 21 (4): 562–563. doi:10.1016/j.jamda.2019.10.023. ISSN 1525-8610. PMID 32113913 Check
|pmid=value (help). Unknown parameter|s2cid=ignored (help) - ↑ "Table 1 . Mini Suffering State Examination (MSSE)". ResearchGate. Retrieved 2021-10-15.
- ↑ Adunsky, Abraham; Aminoff, Bechor Zvi; Arad, Marina; Bercovitch, Michaela (2008-12-01). "Mini-Suffering State Examination: Suffering and Survival of End-of-Life Cancer Patients in a Hospice Setting". American Journal of Hospice and Palliative Medicine. 24 (6): 493–498. doi:10.1177/1049909107307374. ISSN 1049-9091. PMID 18160543. Unknown parameter
|s2cid=ignored (help) - ↑ Aminoff, Bechor Zvi (2016). "Not Calm and Aminoff Suffering Syndrome in Advanced Alzheimer's Disease". American Journal of Alzheimer's Disease and Other Dementias. 31 (2): 169–180. doi:10.1177/1533317515598858. ISSN 1938-2731. PMID 26294697. Unknown parameter
|s2cid=ignored (help) - ↑ "Mini-Suffering State Examination (MSSE) scale: first five years. | Professor Bechor Zvi Aminoff MD., PhD. Medical and Philosophy Research". October 5, 2021. Retrieved 2021-10-15. Unknown parameter
|url-status=ignored (help) - ↑ Aminoff, B. Z. (2014). "Prognosis of Short Survival in Patients With Advanced Dementia as Diagnosed by Aminoff Suffering Syndrome". American Journal of Alzheimer's Disease and Other Dementias. 29 (8): 673–677. doi:10.1177/1533317514539543. PMID 24939003. Unknown parameter
|s2cid=ignored (help) - ↑ Aminoff, Bechor Z. (2010). "P3-436: Aminoff suffering syndrome and decubitus ulcers in advanced dementia". Alzheimer's & Dementia. 6 (4S_Part_19): S581. doi:10.1016/j.jalz.2010.05.1978. ISSN 1552-5279. Unknown parameter
|s2cid=ignored (help) - ↑ Aminoff, Bechor Zvi; Adunsky, Abraham (2006-11-01). "Their last 6 months: suffering and survival of end-stage dementia patients". Age and Ageing. 35 (6): 597–601. doi:10.1093/ageing/afl067. ISSN 0002-0729. PMID 16926196.
- ↑ Koppitz, Andrea; Bosshard, Georg; Kipfer, Stephanie; Imhof, Lorenz (2016-02-02). "Decision-making in caring for people with dementia at the end of life in nursing homes". International Journal of Palliative Nursing. 22 (2): 68–75. doi:10.12968/ijpn.2016.22.2.68. ISSN 1357-6321. PMID 26926346.
- ↑ Aminoff, Bechor Zvi; Adunsky, Abraham (2006). "Their last 6 months: suffering and survival of end-stage dementia patients". Age and Ageing. 35 (6): 597–601. doi:10.1093/ageing/afl067. ISSN 0002-0729. PMID 16926196.
- ↑ Aminoff, Bechor Z. (2010). "P3-436: Aminoff suffering syndrome and decubitus ulcers in advanced dementia". Alzheimer's & Dementia. 6 (4S_Part_19): S581. doi:10.1016/j.jalz.2010.05.1978. ISSN 1552-5279. Unknown parameter
|s2cid=ignored (help) - ↑ Aminoff, Bechor; Abraham, Adunsky (2004-01-01). "Dying dementia patients: Too much suffering, too little palliation". American Journal of Hospice and Palliative Medicine. 19 (5): 243–247. doi:10.1177/104990910502200507. PMID 16225356. Unknown parameter
|s2cid=ignored (help) - ↑ Mitchell, Susan L.; Teno, Joan M.; Kiely, Dan K.; Shaffer, Michele L.; Jones, Richard N.; Prigerson, Holly G.; Volicer, Ladislav; Givens, Jane L.; Hamel, Mary Beth (2009-10-15). "The Clinical Course of Advanced Dementia". The New England Journal of Medicine. 361 (16): 1529–1538. doi:10.1056/NEJMoa0902234. ISSN 0028-4793. PMC 2778850. PMID 19828530.
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