Prevalence, characteristics and quality of life of nursing home patients with dementia with (very) severe or extreme neuropsychiatric symptoms (the WAALBED-III-study)

Neuropsychiatric symptoms (NPS) are key-symptoms in patients with dementia and the main reason for institutionalization. NPS encompass a wide range of heterogeneous symptoms including affective symptoms like depression, anxiety and apathy, behavioural symptoms like aggression, disinhibition, and agitation, and psychotic symptoms like delusions and hallucinations. A recent systematic review on the prevalence and course of NPS in nursing home patients with dementia found that the weighted mean prevalence of having at least one NPS was 82%. The prevalence of individual symptoms varied, with the highest prevalence figures found for agitation and apathy. Within the group of dementia patients, there is a small group with severe, very severe or even extreme NPS. There is hardly any literature about the prevalence and characteristics of these patients that in general pose a large burden on informal caregivers and professionals. Further, one can expect that these patients in particular have high rates of psychotropic drug use and that because of the severity of the NPS they experience high levels of distress which in turn negatively impacts quality of life. The current study, therefore, will focus on this group with (very) severe and extreme NPS and study the prevalence, characteristics and quality of life in a large sample of institutionalized patients with dementia. The study has two parts. Part 1 is a quantitative study that uses data of four studies on NPS in nursing home patients with dementia: the Waalbed-I study (cross-sectional study, n=1332), the Waalbed-II study (longitudinal; n=290), the Dementia Care Mapping study (controlled trial; n=318), and GRIP on challenging behavior (controlled trial; n= 659). Data of all existing measurements will be pooled. Patients with (very) severe NPS will be defined as those scoring in the upper 10 percent of the Cohen Mansfield Agitation Inventory (CMAI) total score. Within this group, also a separate group with vocally disruptive behavior, or severe aggression will be described. Three of the four databases have data on Quality of life (QOL) assessed using Qualidem. The difference in characteristics and QOL between patients with and those without (very) severe NPS corrected for covariates and confounders will be studied. Part 2 is a mixed method study. There is a rare group of dementia patients with extreme NPS sometimes leading to a crisis. This part is multiple case-series study. A sample of 10 cases with patients with extreme NPS will be collected. A comprehensive assessment of these patients including assessment of delirium, pain, premorbid personality and discomfort will be carried out. Further, professionals of the team and family members will be interviewed qualitatively about issues like burden, level of distress, and complexity of decision-making. Within this group of extreme NPS, there are patients with so-called ‘ refractory’ NPS. In these patients the treating physician sometimes decides to administer continuous palliative sedation (CPS). Three dementia patients that received CPS will be collected and described extensively regarding the course of the NPS and the process of decision-making leading to CPS. Regarding the feasibility of the study, the members of the project group are complementary and represent high quality expertise and experience in nursing home practice, nursing home research, and quality of care research. Given that the data for part 1 are already collected and ready to use, and the involvement of the project group, who all were principal investigators of the studies used, we consider it highly feasible to additionally conduct a mixed methods study and write a PhD-thesis within the three years that are available to an AIOTO. In sum, this study will provide insight into the prevalence, characteristics and quality of life of nursing home patients with dementia with (very) severe or extreme NPS. This knowledge will provide input for future treatment approaches and for educational programs of elderly care physicians, nurses and psychologists dealing with these often complex and challenging patients.