The identified facilitating factors can guide Dementia Care Mapping implementation strategy development.

BackgroundCase conferences for people with dementia and challenging behaviors (e.g., apathy) are recommended as useful tools that enable staff in nursing homes to understand the behavior of people with this type of disease. Understanding peoples’ behaviors is the basis for the initiation of targeted interventions to improve the quality of care for people with dementia. Furthermore, case conferences demonstrate positive effects on burnout, dementia-specific burden, and vocational action competence of the staff. The two likely approaches for conducting case conferences include the following: A) using a structured assessment instrument, which guides the staff in understanding the residents’ behaviors and B) using a narrative approach in which the staff must identify the reasons for the residents’ behaviors in an unstructured manner. Case conferences are a complex intervention, and evaluating their multiple effects is challenging. The aim of this study protocol was to describe a likely solution for evaluating this type of complex intervention using a special cluster randomized trial.MethodsIn this stepped-wedged cluster randomized trial, the two interventions will be sequentially implemented every three months in a group of 12 nursing homes (clusters) with a minimum of 360 residents over 19 months (7 months of intervention for each cluster and follow-up). The primary outcome is the reduction of challenging behavior (measured with the neuropsychiatric inventory-nursing home version [NPI-NH]). Secondary outcomes are residents’ quality of life, prescription of psychotropic medications, staff burnout, dementia-related stress, and vocational action competence. The effectiveness of the study will be accompanied by a process evaluation. The primary data will be analyzed using a Bayesian mixed effect model; the secondary data will be analyzed using descriptive statistics and mixed effects models.DiscussionThe implementation and effect measurement of complex interventions such as case conferences within a cluster randomized trial are challenging (e.g., complex and intensive training, delayed treatment effect). In this study protocol, the methodological advantages and disadvantages of using the stepped wedge design to answer the research questions are discussed.Trial registrationhttp://www.controlled-trials.com/ISRCTN20203855; registered 10 July 2013.

This study demonstrated insufficient inter-rater reliability and sufficient intra-rater reliability for all subscales of both versions of the German QUALIDEM. The degree of inter-rater reliability can be improved by collaborative Qol rating by more than one nurse. The development of a measurement manual with accurate item definitions and a standardized education program for proxy raters is recommended.

BackgroundQuality of life (Qol) is a widely selected outcome in intervention studies. The QUALIDEM is a dementia-specific Qol-instrument from The Netherlands. The aim of this study is to evaluate the scalability and internal consistency of the German version of the QUALIDEM.MethodsThis secondary data analysis is based on a total sample of 634 residents with dementia from 43 nursing homes. The QUALIDEM consists of nine subscales that were applied to a subsample of 378 people with mild to severe dementia and six consecutive subscales that were applied to a subsample of 256 people with very severe dementia. Scalability, internal consistency and distribution scores were calculated for each predefined subscale using the Mokken scale analysis.ResultsIn people with mild to severe dementia, seven subscales, care relationship, positive affect, negative affect, restless tense behavior, positive self-image, social relations and feeling at home, were scalable (0.31 ≤ H ≤ 0.65) and internally consistent (Rho ≥ 0.62). The subscales social isolation (H = 0.28) and having something to do (H = 0.18) were not scalable and exhibited insufficient reliability scores (Rho ≤ 0.53). For people with very severe dementia, five subscales, care relationship, positive affect, restless tense behavior, negative affect and social relations, were scalable (0.33 ≤ H ≤ 0.65), but only the first three of these subscales showed acceptable internal consistency (Rho 0.59 – 0.86). The subscale social isolation was not scalable (H = 0.20) and exhibited poor internal consistency (Rho = 0.42).ConclusionsThe results show an acceptable scalability and internal consistency for seven QUALIDEM subscales for people with mild to severe dementia and three subscales for people with very severe dementia. The subscales having something to do (mild to severe dementia), negative affect (very severe dementia), social relations (very severe dementia) and social isolation (both versions) produced unsatisfactory results and require revision.

The majority of people with dementia live at home, and informal carers assume the role of key care providers, often supported by formal services. The purpose of this pilot study was to assess home-based care arrangements, to illustrate utilisation of formal services over time and to identify factors associated with perceived stability of the care situation from the informal carer's perspective. A self-administered questionnaire (D-IVA 'Instrument for Assessing Home-Based Care Arrangements for People with Dementia') was developed and distributed in a provincial-rural setting in Germany as a cross-sectional survey. Data analysis used descriptive statistics, unbiased conditional inference trees and thematic analysis for open-ended questions. In total, 84 care arrangements were assessed. The majority of participants were direct relatives of the care-dependent person [mostly adult children (48.8%) or spouses (27.4%)]. Formal services were already sought in the first year after onset of memory problems. The most frequently used formal services were home care nursing services (53.0%), day care (49.4%) and respite care (29.6%), whereas 15.5% did not use any type of formal support. Companion home visit, home care nursing service and day care were used over the longest periods of time. The recruitment strategy used in this study may have recruited persons who were relatively more dependent on their informal carers. In this small sample, carers' perceived stability of the care situation was high, and this was associated with the country of origin and sex of the person with dementia (P = 0.004 and 0.023 respectively). Most care arrangements consisted of a mix of informal and formal services. However, informal carers assumed prime responsibility. The questionnaire D-IVA proved to be suitable. It remains a challenge to further examine factors associated with perceived stability and to explain the phenomenon in its whole complexity. Further research using the D-IVA should consider applying complementing quantitative measures as well as qualitative methods.