PurposeQuality of care for long-term care (LTC) residents with dementia at the end-of-life is often evaluated using standardized instruments that were not developed for or thoroughly tested in this population. Given the importance of using appropriate instruments to evaluate the quality of care (QOC) and quality of dying (QOD) in LTC, we compared the validity and reliability of ten available instruments commonly used for these purposes.MethodsWe performed prospective observations and retrospective interviews and surveys of family (n = 70) and professionals (n = 103) of LTC decedents with dementia in the Netherlands.ResultsInstruments within the constructs QOC and QOD were highly correlated, and showed moderate to high correlation with overall assessments of QOC and QOD. Prospective and retrospective ratings using the same instruments differed little. Concordance between family and professional scores was low. Cronbach’s alpha was mostly adequate. The EOLD–CAD showed good fit with pre-assumed factor structures. The EOLD–SWC and FPCS appear most valid and reliable for measuring QOC, and the EOLD–CAD and MSSE for measuring QOD. The POS performed worst in this population.ConclusionsOur comparative study of psychometric properties of instruments allows for informed selection of QOC and QOD measures for LTC residents with dementia.

BackgroundAlthough dementia at the end of life is increasingly being studied, we lack prospective observational data on dying patients. In this study symptoms were observed in patients with dementia in the last days of life.MethodsWhen the elderly care physicians in two Dutch nursing homes expected death within one week, symptoms of (dis)comfort, pain and suffering were observed twice daily. For this the Pain Assessment in Advanced Dementia (PAINAD; range 0–10), Discomfort Scale-Dementia of Alzheimer Type (DS-DAT; range 0–27), End-Of-Life in Dementia-Comfort Assessment in Dying (EOLD-CAD; range 14–42) and an adapted version of the Mini-Suffering State Examination (MSSE; range 0–9), were used. Information on care, medical treatment and treatment decisions were also collected.ResultsTwenty-four participants (median age 91 years; 23 females), were observed several times (mean of 4.3 observations (SD 2.6)), until they died. Most participants (n = 15) died from dehydration/cachexia and passed away quietly (n = 22). The mean PAINAD score was 1.0 (SD 1.7), DS-DAT 7.0 (SD 2.1), EOLD-CAD 35.1 (SD 1.7), and MSSE 2.0 (SD 1.7). All participants received morphine, six received antibiotics, and rehydration was prescribed once.ConclusionIn these patients with dementia and expected death, a low symptom burden was observed with validated instruments, also in dehydrated patients without aggressive treatment. A good death is possible, but might be enhanced if the symptom burden is regularly assessed with validated instruments. The use of observation tools may have influenced the physicians to make treatment decisions.

Background: To determine which characteristics are associated with quality of life (QOL) in residents with moderate to very severe dementia in long-term care facilities (LTCFs). Material and Methods: This was a cross-sectional analysis of a cluster randomized controlled study in 12 Dutch LTCFs that enrolled 288 residents, with moderate to severe dementia assessed with the Reisberg Global Deterioration Scale (Reisberg GDS) and QOL with the QUALIDEM. Characteristics that were hypothesized to be associated with the six domains of QOL (applicable to very severe dementia) included demographic variables, activities of daily living (Katz ADL), cognitive performance (Cognitive Performance Scale; CPS), pain (Pain Assessment Checklist for Seniors with Limited Ability to Communicate; PACSLAC-D), neuropsychiatric symptoms (Neuropsychiatric Inventory-Nursing Home Version; NPI-NH) and comorbidities. Results: Multivariate logistic regression modelling showed associations with age in the domain Social isolation [odds ratio, OR, 0.95 (95% confidence interval, CI, 0.91-0.99)], ADL level in the domain Positive affect [OR 0.89 (95% CI 0.83-0.95)] and the domain Social relations [OR 0.87 (95% CI 0.81-0.93)], severity of dementia in the domain Social relations [OR 0.28 (95% CI 0.12-0.62)] and in the domain Social isolation [OR 2.10 (95% CI 1.17-3.78)], psychiatric disorders in the domain Positive affect [OR 0.39 (95% CI 0.17-0.87)] and pulmonary diseases in the domain Negative affect [OR 0.14 (95% CI 0.03-0.61)] of the QUALIDEM. Neuropsychiatric symptoms were independently associated with all six domains of the QUALIDEM [OR 0.93 (95% CI 0.90-0.96) to OR 0.97 (95% CI 0.95-0.99)]. Pain was associated with the domains Care relationship [OR 0.92 (95% CI 0.84-1.00)] and Negative affect [OR 0.92 (95% CI 0.85-1.00)]. Conclusion: QOL in dementia is independently associated with age, ADL, dementia severity, pain, psychiatric disorders, pulmonary diseases and neuropsychiatric symptoms. It is possible to detect persons with dementia at risk for a lower QOL. This information is important for developing personalized interventions to improve QOL in persons with dementia in LTCFs.

Statement of findingsThe kinetics of apoptosis and the apoptosis-regulating gene p53 in adjuvant arthritis (AA) were investigated to assess the value of the AA rat model for testing apoptosis-inducing therapies. Very few terminal deoxynucleotidyl transferase-mediated deoxyuridine triphosphate (dUTP) nick end-labeling (TUNEL)-positive cells were detected during the early phases of AA, but on day 23 (chronic arthritis) the percentage of TUNEL-positive cells was significantly increased. Expression of p53 in synovial tissue gradually increased from days 5-23, which was markedly higher than p53 levels in rheumatoid arthritis (RA) synovium. Significant apoptosis only occurs late in rat AA and is concordant with marked p53 overexpression, making it a useful model for testing proapoptotic therapies, but rat AA is not the best model for p53 gene therapy because dramatic p53 overexpression occurs in the latter stages of the disease. The electronic version of this article can be found online at http://arthritis-research.com/content/2/3/229 © Current Science Ltd AA = adjuvant arthritis; dUTP = deoxyuridine triphosphate; RA = rheumatoid arthritis; TUNEL = terminal deoxynucleotidyl transferase-mediated dUTP nick end-labeling.

The stepwise intervention STA OP! affects the QUALIDEM domains in different ways: there was a lowering of Restless tense behavior in the short term, which reverted back to the initial level in the longer term, and a lowering of Social isolation in the longer term.