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Little is known about the raising number of specialized units for patients with dementia and very severe challenging behavior in the Netherlands. This study describes organizational and treatment characteristics of a sample of these units.
The organizational and treatment characteristics were studied with digital questionnaires completed by the unit managers, interviews with the main physician(s) and observation of the physical environment. The questionnaire consisted of questions about general patient characteristics, unit characteristics and staff characteristics. Furthermore, an interview was held with the main/treating physician often together with another physician or psychologist. The interview guide consisted of questions about admission criteria, the role of staff involved and the treatment process.
Thirteen units participated. Five units were part of a mental health (MH) institution, seven units were part of a nursing home (NH) organization and one unit was a cooperation of MH and NH. Unit sizes ranged from 10 to 28 places. Ten of thirteen units started in 2010 or later. The age of patients admitted was estimated at 75 years. The percentage of involuntary admitted patients was 53% at MH-units and 18% at NH-units. Unit managers mentioned that due to a difference in reimbursement between MH and NH units had difficulty providing the specialized care. Another problem managers faced was recruiting nursing staff. Units strived for expertise in general staffing from both MH and NH. The education level of the nursing staff was comparable between MH and NH. At every unit a physician with background in elderly care medicine or geriatrics and a psychiatrist was involved. Interviewees stressed the role of the nursing staff in the treatment. They were key in providing the care and treatment that, since the main goal of interventions is treatment of and coping with challenging behavior.
The main finding of this study is that units caring for patients with dementia and challenging behavior, despite barriers in regulations and staffing shortage, search for combining expertise from nursing home care and psychiatry in their treatment.
Although formal treatments like antidepressants and psychotherapy may effectively reduce depression in nursing home residents, side effects and poor treatment adherence are common. To improve depression care, it is important to also learn from informal strategies already used successfully in daily practice, alongside or in absence of formal treatment. For example, although not prescribed as formal treatment, a care provider may seat a resident with depression at a table near the window. This may have antidepressant effects due to extra day light or pleasant views from the window.
To identify, categorize, and prioritize informal antidepressant strategies for residents already used in daily practice as reported by residents themselves, their relatives, and professional caregivers.
In the first Group Concept Mapping study, residents, relatives, and professional caregivers (N = 124) brainstormed on strategies to prevent or improve depression that may be performed by residents themselves. In the second study, the same participants (N = 110) reported on strategies others involved in residents’ lives could perform. In a second round of both studies, participants rated the expected effectiveness (N = 54, N = 51 respectively) and feasibility (N = 50 for both studies) of the strategies mentioned. In addition, strategies for both studies were sorted based on similarity in meaning by experts.
Six clusters appeared for actions to be undertaken by residents themselves, and five clusters for actions by others. The results showed that, for strategies by residents, the clusters ‘Being socially connected’ and ‘Participating in activities’, and for strategies by others, the cluster ‘Offering personal attention’ stand out the most in terms of high expected effectiveness. The cluster with strategies executed by residents that stood out as the most feasible was ‘Having a healthy living environment’. The most feasible clusters performed by others were ‘Offering personal attention’, ‘Using positive treatment/approach’, and ‘Using or adapting the physical environment’.
By using an innovative bottom-up participatory approach, this research shed light on various clusters of useful informal antidepressant strategies for daily practice. To test effectiveness and implementation, research is needed on these antidepressant strategies and their regular use in care.
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.
Mixed-methods study in 5 of the 26 facilities; the facilities were affiliated to an academic network of nursing homes.
Visitors and healthcare professionals.
Allowing visitors using local regulations based on national guidelines.
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.
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.
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.
To explore the aspects of daily life that give people with young-onset dementia (YOD) a sense of usefulness.
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.
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.
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.
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