The concept of empowerment seems promising for people living with dementia to live their life as they want to for as long as possible. Therefore, this study aimed to explore what the concept of empowerment means and includes for people living with dementia from the perspectives of people living with dementia themselves, their informal caregivers, and healthcare professionals. Qualitative research using focus group discussions and individual interviews with people living with dementia (n = 15), informal caregivers (n = 16) and healthcare professionals (n = 46) to explore perspectives on empowerment. Audio-recordings were transcribed verbatim, and separately analyzed by two researchers using inductive thematic analysis. Four themes were identified as important aspects of empowerment: (1) having a sense of personal identity, (2) having a sense of choice and control, (3) having a sense of usefulness and being needed, and (4) retaining a sense of worth. Based on these themes, a conceptual framework of empowerment for older people living with dementia was developed. Empowerment takes place within the person living with dementia, but is achieved through interaction with their environment. The four themes seem to be important both at home and in nursing homes, and in different stages of dementia. However, practical detailing of support differed. Our empowerment framework may provide a basis for developing interventions to empower people living with dementia and to strengthen (in)formal caregivers in this empowerment process. Support for people living with dementia must be adjusted to their personal situation and individual capabilities.
The Grip on Challenging Behavior care program for managing challenging behavior was implemented in the dementia special care units of 17 Dutch nursing homes. A process evaluation of the implementation of the care program was performed to determine the quality of the implementation and the lessons to be learned for future implementation. The care program was implemented according to a stepped wedge design. First-order data (data on recruitment, reach, relevance and feasibility) were used to determine the validity of the study, and second-order data (intervention quality and the barriers and facilitators for implementing the care program) were used to describe the implementation process. Two structured questionnaires were administered to care staff and key stakeholders and semi-structured interviews were held in the units. University affiliated and non-affiliated nursing homes from different parts of the Netherlands participated. The resident participation rate was over 95% and the participation rate for the training sessions was 82%. Respondents considered the care program relevant and feasible. The degree of implementation was not optimal. The barriers and facilitators in implementing the care program could be divided into three categories: organizational aspects, culture on the unit and aspects of the care program itself. The recruitment, reach, relevance and feasibility are sufficient to allow for analysis and generalization of the effects of the care program, but the degree of implementation should be taken into account in further analysis. Future projects that involve implementation should consider the specific features of the organization and the cultural orientation of the unit to better adapt to specific needs. The Netherlands National Trial register under number NTR2141 registered on 11 December 2009. Randomization took place in November 2010, and the first intervention group started using the intervention in February 2011.
The way we perceive and portray dementia has implications for how we act towards people with dementia and how we address the issue of dementia within society. As a multi-disciplinary working group, established within the framework of the European Dementia Ethics Network of Alzheimer Europe, we aimed to describe the different ways that people with dementia are perceived and portrayed within society and to consider the moral implications of this. In the current paper, we address perceptions of dementia as reflected in explanatory models of its cause and nature, descriptions of characteristics of people with dementia, the use of language, media portrayals and the views of people living with dementia. Academics and professionals could use this exploration to reflect on their behaviour and their use of language regarding people with dementia.
1 May 2018 in International Journal of Nursing Studies
Objectives: This study investigates the relationship between attitudes of care staff and social well-being and challenging behavior of residents in long-term dementia care. Methods: The study was based on a cross-sectional design using questionnaires. Care staff members (N = 291) of 15 long-term care facilities in the Netherlands completed the Approaches to Dementia Questionnaire. Additionally, the primary professional caregiver of each participating resident (N = 239) completed an observational questionnaire regarding that resident’s behavior, which contained the scale for Social Wellbeing Of Nursing home residents and the Cohen-Mansfield Agitation Inventory. Data were analyzed using multilevel analyses, taking characteristics of residents into account. Results: Attitudes of care staff towards residents with dementia differed between facilities. Further, residents experienced more social well-being and displayed less challenging behavior in facilities where care staff had more hopeful attitudes. Conclusion: This study demonstrates a relationship between attitudes of care staff and resident well-being. The results indicate that it is important to address attitudes towards residents with dementia in the education of (future) care staff. Care processes may also be improved by focusing on the attitudes of care staff. In this way, the well-being of residents with dementia can potentially be improved as well.