Suffering and pain in end-stage dementia
Bechor Zvi Aminoff, MD, PhD
Geriatric Division, The Chaim Sheba Medical Center, Tel Hashomer, Israel
Objective: to study possible interrelations between suffering and pain in end-stage dementia (ESD).
Subjects: a cohort study of 200 ESD patients with a six-month follow-up period.
Methods: Our recently developed (MSSE) scale is the first objective clinical tool for evaluation of suffering level in end stage dementia (ESD) (Aminoff, 1999).
The MSSE scale is available in English, Hebrew, Dutch and Spanish, and covers 10 items (range 0-10). Based on clinical experience, the following items were included in the MSSE: Not calm, screams, pain, decubitus ulcers, malnutrition, eating disorders, invasive action, unstable medical condition, suffering according to medical opinion, and suffering according to family opinion.
The MSSE scale was tested using the Cronbach model, which demonstrated its significant reliability ( = 0.798). 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) (r = -0.796, P < 0.0001). The results of clinical experience with this scale were presented at world and regional congresses in Berlin (1999), Jerusalem (2000), Vancouver (2001), Stockholm (2002), Tokyo (2003), Las Vegas (2004), Rio-de-Janeiro (2005), Madrid (2006), Saint-Petersburg (2007), Trondheim (2008), Paris (2009), Honolulu (2010) and in Athens (2011). Results: on the day of admission to the Geriatric Department, 10.5 % of ESD patients, diagnosed with pain (21/200) and 89.5 of ESD patients were free from pains. Patients diagnosed with pains had a higher scale score (7.0 ± 2.4) than those without pain (4.0 ± 2.2), with a significant difference (P < 0.0001). Conclusions: Pains contribute to higher suffering and the development of Aminoff suffering syndrome in ESD.