Suffering in Alzheimer's

B. Z. Aminoff (MD, PhD, Research Professor)

Geriatric Division, The Chaim Sheba Medical Center, Tel Hashomer, Israel

The Minerva Center for the Interdisciplinary Study of End-of-Life, Tel Aviv
University, Tel Aviv, Israel

Aminoff Suffering Syndrome

Aminoff suffering syndrome (which can be evaluated by the Mini Suffering State Examination) was diagnosed, defined, investigated in a prospective medical study, undertaken, and published by the Israeli geriatrician Dr. Bechor Zvi Aminoff.

Dr. Aminoff conducted the first clinical study of what is now known as Aminoff suffering syndrome in the Geriatric’s D ward of the Chaim Sheba Medical Center Tel-Hashomer in 1999–2005. He first presented his results at the 10^th International Conference on Alzheimer’s Disease and Related Disorders in Madrid on 2006 (1).

Definition

We define the Aminoff suffering syndrome as a condition characterized by a high score on the MSSE scale, which predicts survival rates of less than 6 months’ for terminal patients and less than 1-month for dying patients, with irreversible and intractable aggravation of medical conditions and suffering until demise (2, 3).

Mini Suffering State Examination

The MSSE (Table 1) scale (4, 5, 6, 7) we developed is the first objective clinical tool for evaluating the level of suffering in advanced dementia. Available in English, Hebrew, Dutch (8), German (9), Italian, Spanish (10), Slovenian, and Russian (11), the MSSE scale covers ten different measures (range 0–10). A score of 7–10 indicates a high level of suffering and reflects the severity of the medical condition in advanced dementia.

Table 1. Mini Suffering State Examination (MSSE)

The MSSE Score Interpretation:

Low level of suffering: range 0–3


Intermediate level of suffering: range 4–-6

High level of suffering: range 7–10

We tested The MSSE scale using the Cronbach α-model, which attests its significant reliability (α = 0.798).

Convergent validity of the MSSE scale was confirmed by a 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  (r = –0.796, P < 0.0001).

The differences among the survival times of the three MSSE score ranges were evaluated by a 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 an elevated MSSE score and a high risk of mortality and short survival of end-stage dementia patients during the last 6 months of life with a significant prediction validity (P = 0.013).

A study of ranges on the MSSE scale has confirmed that patients with end-stage dementia represent a heterogeneous group in terms of their levels of suffering, and accordingly proved a significant concurrent validity.

Aminoff suffering syndrome has been proposed as the key criterion for the admission of end-stage disease and dying patients to a hospice or to a proposed facility especially designed to deal with the relief of severe suffering owing to dementia (12,13,14,15).