Evaluation of the SPAN intervention for people living with young-onset dementia in the community and their family caregivers: a randomized controlled trial.

OBJECTIVES: To evaluate the effectiveness of the SPAN-intervention, a psychosocial intervention aiming at improving a sense of usefulness and engaging in meaningful activities, for community-dwelling people living with young-onset dementia (YOD) and their family caregivers. METHODS: A cluster-randomized controlled trial with two parallel groups (SPAN-intervention vs. care as usual) with assessments at baseline and five-month follow-up was performed. Sixty-one persons living with YOD and their family caregivers were included (SPAN-intervention group: n = 35; care as usual group: n = 26). Outcomes included, for the person living with YOD, empowerment (operationalized by self-management abilities using the SMAS-30; primary outcome), quality of life, neuropsychiatric symptoms, disability, apathy; and, for the family caregiver, quality of life, emotional distress, sense of competence. Data were analyzed using linear mixed models. RESULTS: We found no statistically significant effects of the SPAN-intervention on empowerment, nor on the secondary outcome measures for persons living with YOD or their family caregivers. CONCLUSION: Although the SPAN-intervention may provide concrete opportunities to engage in activities and stimulate reciprocity, such as meaningful social activities, this study did not demonstrate intervention effects. Additional qualitative evaluations may provide more insight into the implementation process and experiences of people living with YOD and their family caregivers.This trial was registered at ClinicalTrials.gov (NCT02937883).

Promoting empowerment for people living with dementia in nursing homes: Development and feasibility evaluation of an empowerment program.

OBJECTIVES: This article describes the development and feasibility evaluation of an empowerment program for people living with dementia in nursing homes. METHODS: Development and feasibility evaluation of the empowerment program was guided by the British Medical Research Council's (MRC) framework. In the developmental phase, we used intervention mapping to develop the theory- and evidence-based intervention. During the feasibility phase, two care teams utilised the program from September to December 2020. We evaluated the feasibility in terms of demand, acceptability, implementation, practicality, integration and limited efficacy. FINDINGS: This study showed that, according to healthcare professionals, the program was feasible for promoting empowerment for people living with dementia in a nursing home. Healthcare professionals mentioned an increased awareness regarding the four themes of empowerment (sense of identity, usefulness, control and self-worth), and greater focus on the small things that matter to residents. Healthcare professionals experienced challenges in involving family caregivers. CONCLUSION: An important step is to take into account the implementation prerequisites that follow from our findings, and to further investigate feasibility, as the use of the program and data collection was hindered by the COVID-19 pandemic. Subsequent research could investigate the effects of the empowerment program.

Empowering interventions for people living with dementia: A European survey.

AIMS: We aim to identify existing empowerment interventions for people living with dementia and to explore which used interventions and projects are considered empowering and why. DESIGN: This was an online survey. METHODS: We conducted an online survey between May 2018 and July 2018 amongst professionals interested in dementia care in Europe. Interventions were clustered within the ecological model for health promotion. Reasons from respondents as to why they considered interventions to be empowering were analysed and structured according to a recently developed conceptual framework of empowerment for people living with dementia. RESULTS: Seventy-three respondents from 23 countries together mentioned 98 interventions or projects, of which 90 were unique. Interventions focused on the (inter)personal (n = 54), organizational (n = 15), communal (n = 6) and societal (n = 15) levels. A broad range of interventions were considered empowering, but no interventions were specifically developed for, nor aimed at, empowerment. Reasons as to why respondents considered these interventions as empowering fitted the framework's domains. CONCLUSION: This European survey provides insights into interventions considered empowering for people living with dementia. An important step that needs to be taken is to develop and test interventions that specifically aim to promote empowerment for people living with dementia. IMPACT: Empowerment may encourage people with dementia to live the life they choose, and focus on what is possible, instead of what is no longer possible. Many interventions are considered as empowering for people living with dementia, however no interventions could be identified that were specifically developed for or aimed at empowerment. This study shows that for promoting empowerment, it is necessary to develop and test interventions that specifically aim for empowerment, do this in collaboration with relevant stakeholders, and in this way support people living with dementia to live according to their competencies, talents and wishes.

Family caregivers' perspectives on their interaction and relationship with people living with dementia in a nursing home: a qualitative study.

BACKGROUND: Social interactions are important for people living with dementia in a nursing home. However, not much is known about interactions and relationships between residents and family caregivers and related experiences of family caregivers. We aim to advance the knowledge on how family caregivers interact with people living with dementia in a nursing home and how they maintain or redesign a meaningful connection. METHODS: Qualitative research using interviews with family caregivers (n = 31) to explore perspectives on their interaction and relationship with the person living with dementia. Interviews were held during the reopening of nursing homes after the first COVID-19 lockdown in the Netherlands. In this situation, family caregivers became more aware of their interaction and relationship with the resident, which provided a unique opportunity to reflect on this. The interviews explored the interaction and relationship in a broad sense, not specifically for the COVID-19 situation. Thematic analysis was performed to analyze the data. RESULTS: We were able to identify three key themes reflecting the experiences of family caregivers: (1) changes in the interaction and relationship, (2) strategies to promote connection, and (3) appreciation of the interaction and relationship. From the viewpoint of family caregivers, the interaction and relationship are important for both the resident living with dementia and for themselves, and family caregivers have different strategies for establishing a meaningful connection. Nevertheless, some appear to experience difficulties with constructing such a connection with the resident. CONCLUSIONS: Our results provide a basis for supporting family caregivers in perceiving and establishing mutuality and reciprocity so that they can experience togetherness.

Reopening the doors of Dutch nursing homes during the COVID-19 crisis: results of an in-depth monitoring.

OBJECTIVES: On May 11, the Dutch Government allowed 26 nursing homes to welcome 1 visitor per resident, after 2 months of lockdown. The study aimed to monitor in-depth the feasibility of the regulations and their impact on the well-being of residents, their visitors, and healthcare staff. DESIGN: Mixed-methods study in 5 of the 26 facilities; the facilities were affiliated to an academic network of nursing homes. PARTICIPANTS: Visitors and healthcare professionals. INTERVENTION: Allowing visitors using local regulations based on national guidelines. MEASUREMENTS: Digital questionnaire, analyzing documentation such as infection prevention control protocols, attending meetings of COVID-19 crisis teams, in-depth telephone or in-person interviews with visitors and healthcare professionals, and on-site observations. RESULTS: National guidelines were translated with great variety into local care practice. Healthcare professionals agreed that reopening would increase the well-being of the residents and their loved ones. However, there were also great worries for increasing workload, increasing the risk of emotional exhaustion, and the risk of COVID-19 infections. Compliance with local regulations was generally satisfactory, but maintaining social distance and correctly wearing face masks appeared to be difficult. Care staff remained ambivalent for fear of infections. In general, allowing visitors was experienced as having a positive impact on the well-being of all stakeholders. Nevertheless, some residents with dementia showed negative effects. CONCLUSION: The complete lockdown of Dutch nursing homes had a substantial impact on the well-being of the residents. The reopening was welcomed by all stakeholders, but provided a high organizational workload as well as feelings of ambivalence among care staff. In the second wave, a more tailored approach is being implemented. However, facilities are sometimes still struggling to find the right balance between infection control and well-being.

Empowerment for people living with dementia: An integrative literature review.

BACKGROUND AND OBJECTIVES: Although the concept of empowerment seems useful for good care and support for people living with dementia, there is a lack of understanding of the process of empowerment. Therefore, more insight is needed into the concept of empowerment, and the environment's role in the empowerment process. RESEARCH DESIGN AND METHODS: We performed an integrative literature review (PubMed, CINAHL, PsychINFO), including studies that addressed empowerment for people living with dementia in their title or abstract. Using qualitative data analysis software ATLAS.ti, we applied open codes to describe all relevant aspects of included articles. Common themes and categories were identified using inductive reasoning and constant comparison. RESULTS: Sixty-nine articles were included. We identified four themes: (1) description of the state of being empowered, (2) the process of empowerment, (3) contribution of the environment to the empowerment process, and (4) effects on other variables. We combined these results with the conceptual framework of our previous qualitative study on the definition of empowerment for people living with dementia based on stakeholders' perspectives. Subsequently, the combined information of both studies was visualized in a revised conceptual framework. DISCUSSION AND IMPLICATIONS: This literature review provides more details as to the role of the environment for empowerment of people living with dementia and suggests that empowerment can be considered a dynamic process, taking place through interaction between the person living with dementia and their environment. Our revised conceptual framework of empowerment can serve as a basis for future studies on empowerment for people living with dementia, and to support (in)formal caregivers in the empowerment process.

Effects on staff outcomes and process evaluation of the educating nursing staff effectively (TENSE) program for managing challenging behavior in nursing home residents with dementia: A cluster-randomized controlled trial.

BACKGROUND: Challenging behavior is prevalent in people with dementia residing in nursing homes and places a high burden on the nursing staff of dementia special care units. This study evaluates an educational program for nursing staff for managing challenging behavior: The Educating Nursing Staff Effectively (TENSE) program. This program can be tailored to care organizations' wishes and needs and combines various learning styles. OBJECTIVE: The aim of this cluster-randomized controlled trial was to examine the short-term (3 months) and long-term (9 months) effects of the TENSE training program on experienced stress, work contentment, and stress reactions at work in nursing staff working in dementia special care units. DESIGN: Cluster-randomized controlled trial. METHODS: Nursing staff members of 18 dementia special care units within nine nursing homes from different Netherlands regions were randomized into an intervention (n = 168) or control (n = 129) group. The TENSE program consisted of a three-day training course and two follow-up sessions after three and six months, respectively. The primary outcome was stress experienced by nursing staff measured with the Utrecht Burnout Scale - C. Secondary outcomes were work contentment and stress reactions at work. Furthermore, process evaluation data on the reach of and compliance with the program and the program's feasibility and relevance were collected. Data were collected between November 2012 and November 2014. RESULTS: In general, the participants appreciated the quality and relevance of the TENSE training and evaluated the content of the training as beneficial. The TENSE training had no effect on the components of experienced stress, i.e., emotional exhaustion (p = 0.751), depersonalization (p = 0.701), and personal accomplishment (p = 0.182). Furthermore, no statistically significant effects of the intervention on work contentment and stress reactions at work were found. CONCLUSIONS: The TENSE training program did not have an effect on experienced stress, work contentment, nor stress reactions at work of nursing staff working in dementia special care units. In future studies, more focus on practicing new skills seems needed. TRIAL REGISTRATION: NTR (Dutch Trial Registration) number NTR3620.

Defining empowerment for older people living with dementia from multiple perspectives: A qualitative study.

BACKGROUND AND OBJECTIVES: 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. RESEARCH DESIGN AND METHODS: 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. RESULTS: 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. DISCUSSION AND IMPLICATIONS: 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.

Feeling useful and engaged in daily life: exploring the experiences of people with young-onset dementia.

BACKGROUND: To explore the aspects of daily life that give people with young-onset dementia (YOD) a sense of usefulness. METHODS: Eighteen people with YOD and 21 informal caregivers participated in this qualitative study. Participants were recruited from specialized day-care centers for people with YOD in the Netherlands. Four focus groups were conducted with people with YOD, and four with informal caregivers. Focus groups were audio-recorded, transcribed, and analyzed using inductive content analysis. RESULTS: Four themes emerged from the analysis: (1) staying engaged, (2) loss in daily life, (3) coping and adaptation, and (4) external support. Staying engaged in activities that provide a sense of usefulness or participating in leisure and recreational activities as much as possible in daily life emerged as the key theme. Retaining a sense of usefulness was considered both important and possible by having social roles or participating in functional activities. The importance of activities providing a sense of usefulness seemed to decrease over time, while the need for pleasant activities seemed to increase. Experienced loss, coping, adaptation, and available external support are important parts of the context in which the person with YOD tries to engage in daily life as much as possible. Active coping styles and external support appear to play a facilitating role in staying engaged. CONCLUSIONS: It is important for people with YOD to have the opportunity to feel useful; especially in the early stages of the condition. Caregivers should be educated in ways to enhance a sense of usefulness and engagement in daily life for people with YOD.

Understanding how older adults living in deprived neighbourhoods address ageing issues.

Older adults living in deprived areas are at risk of developing frailty and becoming care dependent. The aim of this qualitative study is to explore how community-dwelling, older adults living in deprived neighbourhoods address ageing issues. In-depth interviews were conducted with 20 participants who were community-dwelling (independently living), aged 65 years and older, not dependent on care, and living in a socioeconomically deprived urban neighbourhood in the northern part of the Netherlands. Data were analysed using the constant comparative method. Our findings emphasise the resourcefulness of these older adults when coping with apparent adversities. Simultaneously, the findings convey deficits concerning knowledge about ageing and health. Despite this, it appeared that these older adults possess an optimistic view of life, accept their situation, and are content with the capacities they still possess. Perspectives on how older adults address ageing issues are important for developing leads for nursing practice. Nurses will be challenged to recognise the coping strategies of older adults, particularly considering their deficits in health knowledge. The results of this study may serve as a basis for community nurses to manage care for older adults in deprived neighbourhoods.

Building from a conceptual model of the resilience process during ageing, towards the Groningen Aging Resilience Inventory.

AIM: To develop and psychometrically test the Groningen Ageing Resilience Inventory. BACKGROUND: Ageing is a process that is often accompanied by functional limitation, disabilities and losses. Instead of focusing on these negative events of ageing, there are opportunities in focusing on adaptation mechanisms, like resilience, that are helpful to cope with those adversities. DESIGN: Cross-sectional study. METHOD: The study was conducted from 2011-2012. First, a conceptual model of resilience during the ageing process was constructed. Next, items were formulated that made up a comprehensive template questionnaire reflecting the model. Finally, a cross-sectional study was performed to evaluate the construct validity and internal consistency of this template 16-item questionnaire. FINDINGS: Participants (N = 229) with a mean age of 71·5 years, completed the template 16-item Groningen Ageing Resilience Inventory, and performance based tests and psychological questionnaires. Exploratory factor analysis resulted in a two factor solution of internal and external resources of resilience. Three items did not discriminate well between the two factors and were deleted, remaining a final 13-item questionnaire that shows evidence of good internal consistency. The direction and magnitude of the correlations with other measures support the construct validity. CONCLUSION: The Groningen Ageing Resilience Inventory is a useful instrument that can help nurses, other healthcare workers, researchers and providers of informal care to identify the internal and external resources of resilience in individuals and groups. In a multidisciplinary biopsychosocial approach this knowledge provides tools for empowering older patients in performing health promoting behaviors and self-care tasks.

Multidimensional structure of the Groningen Frailty Indicator in community-dwelling older people.

BACKGROUND: Due to the rapidly increasing number of older people worldwide, the prevalence of frailty among older adults is expected to escalate in coming decades. It is crucial to recognize early onset symptoms to initiate specific preventive care. Therefore, early detection of frailty with appropriate screening instruments is needed. The aim of this study was to evaluate the underlying dimensionality of the Groningen Frailty Indicator (GFI), a widely used self-report screening instrument for identifying frail older adults. In addition, criterion validity of GFI subscales was examined and composition of GFI scores was evaluated. METHODS: A cross-sectional study design was used to evaluate the structural validity, internal consistency and criterion validity of the GFI questionnaire in older adults aged 65 years and older. All subjects completed the GFI questionnaire (n = 1508). To assess criterion validity, a smaller sample of 119 older adults completed additional questionnaires: De Jong Gierveld Loneliness Scale, Hospital Anxiety Depression Scale, RAND-36 physical functioning, and perceived general health item of the EuroQol-5D. Exploratory factor analysis and Mokken scale analysis were used to evaluate the structural validity of the GFI. A Venn diagram was constructed to show the composition of GFI subscale scores for frail subjects. RESULTS: The factor structure of the GFI supported a three-dimensional structure of the scale. The subscales Daily Activities and Psychosocial Functioning showed good internal consistency, scalability, and criterion validity (Daily Activities: Cronbach's α = 0.81, H(s) = .84, r = -.62; Psychosocial Functioning: Cronbach's α = 0.80, H(s) = .35, r = -.48). The subscale Health Problems showed less strong internal consistency but acceptable scalability and criterion validity (Cronbach's α = .57, H(s) = .35, r = -.48). The present data suggest that 90% of the frail older adults experience problems in the Psychosocial Functioning domain. CONCLUSIONS: The present findings support a three-dimensional factor structure of the GFI, suggesting that a multidimensional assessment of frailty with the GFI is possible. These GFI subscale scores produce a richer assessment of frailty than with a single overall sum GFI score, and likely their use will contribute to more directed and customized care for older adults.