Characteristics, course and treatment of patients with dementia with (very) severe or extreme neuropsychiatric symptoms (NPS) that are admitted on NPS specialized care units: the Waalbed IV-study

Neuropsychiatric symptoms (NPS) like agitation, aggression or vocally disruptive behaviors are highly prevalent in nursing home patients with dementia. Within this large group of dementia patients, there is a small group with severe, very severe or even extreme NPS. These behaviors encompass a broad range of NPS like extreme sexual behavior, physically violent behaviors, resident to resident violence, physical aggression, vocally disruptive behaviors, or rejection to care. In some cases the behavior may lead to a crisis. To our knowledge, there are no reliable prevalence figures available of the dementia patients with very severe or extreme NPS. Also, there are no data available of the course and treatment of these patients, and there are no care-programs available for these patients. This means that current practice is predominantly practice-based, with a broad variation between centers. The striking lack of research into this specific group of dementia patients is disconcerting since this group needs a different approach. Regular units of nursing homes or mental health services frequently experience difficulties in coping with the challenges of this group despite consultation of old age psychiatrists or geriatricians. Several Dutch long-term care organizations and mental health institutions developed specific units for this group, in order to provide specialized care different from the care on regular dementia units. The general aim of these units is to perform a comprehensive assessment of the NPS and to set up a care and treatment plan in order to positively influence the severity of the NPS to a level that the patient can be discharged to a regular dementia unit. The current study will, therefore, focus on this particular group in order to further characterize these patients, to study the course of their behaviors, the outcomes of the treatment and the burden for professionals. The study consists of four parts. Part 1 aims to describe the organizational characteristics of the NPS specialized care units. We will develop a questionnaire that will consist of (1) patient-related questions (2) staffing related questions (3) questions regarding the physical environment of the unit (4) questions regarding treatment and (5) questions on organizational issues. The questionnaire will be administered as an interview with key-members of the team of the unit. Part 2 aims to answer the question how to define ‘successful treatment’. To define this concept, we will use the method of concept mapping. Concept mapping consists of six steps: (1) preparation, (2) generation of statements, (3) structuring of statements, (4) representation of statements in the form of a concept map, (5) interpretation of maps, (6) utilization of maps. Participants meet under the supervision of an independent chair. Typically, a concept mapping session takes about 3-4 hrs. Participants are one or two key professionals of each of the participating units and three or four national experts in the field of dementia care. Furthermore, as part of the concept-mapping, a focus-group interview will be held with dedicated family-members of patients that are admitted to these units. In this session, family-members will be asked to comment on the outcomes of the concept-mapping. Part 3 is an observational, longitudinal, follow-up study of dementia patients newly admitted and treated on these NPS specialized care units. Part 3 aims to describe the characteristics and course of these patients and to determine predictors of successful treatment. Patients will be assessed 5 times during their stay: at admission, after 2 weeks, after 6-8 weeks, after 3 months and at discharge. Next to demographics the following characteristics will be measured: type of dementia, severity of dementia, cognition, ability to communicate, comorbidity and especially psychiatric disorders, psychotropic drug use (PDU), pain, NPS, agitation/aggression, signs of depression, psychosocial interventions, quality of life, and restraints. In addition to these patient related characteristics we will assess some staff related aspects like workload (burnout), job satisfaction, job demands, and organizational culture. Part 4 is a qualitative study that will be carried out among a maximum of 10 patients that have been successfully treated, as defined in part 2 of this proposal. We aim to select a variety of NPS like vocally disruptive behavior, aggression or severe agitation and patients are preferably spread over the participating units. In addition to the quantitative data of these patients collected in part 3, the (medical) files of these patients will be extensively analyzed. Based on this information, we will develop an interview guide for a focus group-interview with key-professionals of the team and for individual interviews with family members of the patient in order to get a more in depth impression of treatment policies and factors that determined success.