Discussions about the importance of the built environment for healthcare delivery extend at least as far back as Hippocrates 1 (400 BC). The iconic Florence Nightingale (1859) also strongly believed in the influence the indoor environment has on the progress of disease and recovery. Today, the role of the built environment in the healing process is of growing interest to healthcare providers, environmental psychologists, consultants, and architects. Although there is a mounting evidence 1 linking healthcare environments to health outcomes, because of the varying quality of that evidence, there has also been a lack of clarity around what can and cannot be achieved through design. Given the ageing of society and the ever increasing numbers of persons with dementia in the Western World, the need for detailed knowledge about aged care environments has also become increasingly important. The mental and physical health state of these persons is extremely fragile and their needs demand careful consideration. Although environmental interventions constitute only a fraction of what is needed for people with dementia to remain as independent as possible, there is now sufficient evidence (2, 3) to argue they can be used as a first-line treatment, rather than beginning with farmalogical interventions.
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Artikel van Judith Huis in het Veld, docent onderzoeker van de Hogeschool Inholland verschenen in Research in Gerontological Nursing ABSTRACT The current article discusses how and by whom family caregivers want to be supported in selfmanagement when managing changes in behavior and mood of relatives with dementia and whether family caregivers consider eHealth a useful tool for self-management support. Four asynchronous online focus groups were held with 32 family caregivers of individuals with dementia. Transcripts of the online focus groups were analyzed using qualitative thematic analysis. Family caregivers need support from professionals or peers in the form of (a) information about dementia and its symptoms, (b) tips and advice on managing changes in behavior and mood, (c) opportunities to discuss experiences and feelings, and (d) appreciation and acknowledgement of caregiving. The opinions of family caregivers about self-management support through eHealth were also reported. Findings suggest a personal approach is essential to self-management support for family caregivers managing changes in behavior and mood of relatives with dementia. In addition, self-management support can be provided to some extent through eHealth, but this medium cannot replace personal contacts entirely.
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Background: Online contacts with a health professional have the potential to support family caregivers of people with dementia. Objective: The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention—involving among others personal email contacts with a dementia nurse—was compared with online interventions without these email contacts. Methods: A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers’ self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers’ reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. Results: Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference –0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over http://www.jmir.org/2020/2/e13001/ J Med Internet Res 2020 | vol. 22 | iss. 2 | e13001 | p. 1 (page number not for citation purposes) JOURNAL OF MEDICAL INTERNET RESEARCH Huis in het Veld et al XSL•FO RenderX time (difference –4.21, P=.09) and at T1 (difference –4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. Conclusions: The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required.
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BACKGROUND: Paratonia is a progressive motor problem that is observed in individuals with dementia and is not a well-known phenomenon. This study explores the development and risk factors of paratonia in moderate stage dementia patients.METHODS: A multi-center, longitudinal, one-year follow-up cohort study was performed. Patients with an established diagnosis of dementia, with a score of 6 or lower on the Global Deterioration Scale (GDS) were included. The participants were assessed using the Paratonia Assessment Instrument (PAI), the Timed Up and GO test, the Qualidem, the Global Deterioration Scale (Reisberg et al., 1982) and the Mini-mental State Examination. Information about each patient's diagnosis of dementia, comorbidities and use of medication were obtained from the participant's medical file. The PAI was assessed every three months, the other variables at baseline and after 12 months. Cross-tabulation χ2 and logistic regression tests were used for the statistical analyses.RESULTS: Baseline measures were assessed in the 204 participants - 111 (54%) female and 93 (46%) male, with a mean age of 79.8 years (56-97). Seventy-one patients (34.8%) were diagnosed with paratonia at baseline, and 51 patients developed paratonia over one year. The highest hazard ratio (3.1) for developing paratonia within one year was observed in the vascular dementia group. The logistic regression analysis revealed that the presence of diabetes mellitus (OR = 10.7) was significantly related to the development of paratonia (Wald χ2 p-value < 0.01).CONCLUSIONS: Diabetes mellitus and likely vascular damage are risk factors for the development of paratonia.
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Increasing attention has been paid to the ‘voice’ of people living with mild cognitive impairment (MCI) or dementia, but there is a lack of clarity about how everyday life is perceived from this insider’s perspective. This study aimed to explore the everyday life experiences, challenges and facilitators of individuals with MCI and dementia living at home. A scoping review of qualitative studies, guided by the Joanna Briggs Institute Reviewers Manual, was conducted. Eight databases were searched, resulting in 6345 records, of which 58 papers published between 2011 and 2021 were included. Analysis was carried out by descriptive content analysis. Findings were categorized into seven spheres of everyday life: experiences related to the condition, self, relationships, activities, environment, health and social care and public opinions. The results show many disruptions and losses in everyday life and how people try to accommodate these changes. In all areas of everyday life, people show a deep desire to have reciprocal relationships, stay engaged through participation in activities and have a sense of belonging in the community. However, more research is needed on the factors that promote and impede the sense of reciprocity and belonging.
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Abstract Background: To address the lack of social interaction and meaningful activities for persons with dementia (PWD) in nursing homes an artistic Photo-Activity was designed. The present study aims to develop a digital version of the Photo-Activity and to investigate its implementation and impact on nursing home residents with advanced dementia, and their (in)formal carers. Methods: First, within a user-participatory design, a digital-app version of the Photo-Activity will be developed and pilot-tested, in co-creation with (in)formal carers and PWD. Next, the feasibility and effectiveness of the Photo-Activity versus a control activity will be explored in a randomized controlled trial with nursing home residents (N=90), and their (in)formal carers. Residents will be offered the Photo- Activity or the control activity by (in)formal carers during one month. Measurements will be conducted by independent assessors at baseline (T0), after one month (T1) and at follow up, two weeks after T1 (T2). Qualitative and quantitative methods will be used to investigate the effects of the intervention on mood, social interaction and quality of life of the PWD, sense of competence of informal carers, empathy and personal attitude of the formal carers, and quality of the relationship between the PWD, and their (in)formal carers. In addition, a process evaluation will be carried out by means of semi-structured interviews with the participating residents and (in)formal carers. Finally, an implementation package based on the process evaluation will be developed, allowing the scaling up of the intervention to other care institutions. Discussion: Results of the trial will be available for dissemination by Spring 2023. The digital Photo-Activity is expected to promote meaningful connections between the resident with dementia, and their (in)formal carers through the facilitation of person-centered conversations. Trial registration: Netherlands Trial Register: NL9219; registered (21 January 2021); NTR (trialregister.nl)
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Abstract Background Although family photos are often used in the psychosocial care for people with dementia, little is known about the use and efectiveness of generic photos. This systematic literature review explored psychosocial interventions using generic photos for people with dementia, and the efects they have on their social interaction and/or mood and/or quality of life. In addition, it was investigated whether these interventions made use of technol‑ ogy in its implementation. Methods A systematic search on the following databases was performed: PubMed, Embase, APA PsychInfo, Cinahl, Web of Science, Scopus and Cochrane Central. Inclusion and exclusion criteria were based on the PICO model (Popu‑ lation, Intervention, Comparison, Outcome), and quality assessment was undertaken using the Weight of Evidence Framework. Narrative synthesis was undertaken to summarize study characteristics- settings and designs, type of psy‑ chosocial interventions identifed, type of photos and technology used, outcome measures, and results. Results A total of 2,035 results were found, however after title, abstract and full-text screening, a total of 8 studies were included. The most common psychosocial intervention using generic photos was found to be reminiscence therapy, followed by art-viewing activities. In studies that used technology, it was reported that viewing digitalized photos were either similar or better to conventional printed photos. Despite photos being generic, it was found that generic photos could still hold personal signifcance to the person with dementia. Some positive and signifcant efects were found for the outcomes social interaction, mood and quality of life, though no study evaluated all three outcomes. Two studies were rated as having high overall quality, 4 were rated as fair, and 2 studies had a low quality assessment rating. Conclusion Studies found using generic photos were limited, showing varying outcomes and methodological quality. Firm conclusions on the efectiveness of interventions using generic photos are not possible. However, the use of generic photos in psychosocial interventions is a promising area for future research. Researchers should consider studies with better methodological quality and larger samples; and qualitative studies where the intention is to get better insight into successful implementation and impact mechanisms of such psychosocial interventions.
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Abstract Background: To address the lack of social interaction and meaningful activities for persons with dementia (PWD) in nursing homes an artistic Photo-Activity was designed. The present study aims to develop a digital version of the Photo-Activity and to investigate its implementation and impact on nursing home residents with advanced dementia, and their (in)formal carers. Methods: First, within a user-participatory design, a digital-app version of the Photo-Activity will be developed and pilot-tested, in co-creation with (in)formal carers and PWD. Next, the feasibility and effectiveness of the Photo-Activity versus a control activity will be explored in a randomized controlled trial with nursing home residents (N=90), and their (in)formal carers. Residents will be offered the Photo- Activity or the control activity by (in)formal carers during one month. Measurements will be conducted by independent assessors at baseline (T0), after one month (T1) and at follow up, two weeks after T1 (T2). Qualitative and quantitative methods will be used to investigate the effects of the intervention on mood, social interaction and quality of life of the PWD, sense of competence of informal carers, empathy and personal attitude of the formal carers, and quality of the relationship between the PWD, and their (in)formal carers. In addition, a process evaluation will be carried out by means of semi-structured interviews with the participating residents and (in)formal carers. Finally, an implementation package based on the process evaluation will be developed, allowing the scaling up of the intervention to other care institutions. Discussion: Results of the trial will be available for dissemination by Spring 2023. The digital Photo-Activity is expected to promote meaningful connections between the resident with dementia, and their (in)formal carers through the facilitation of person-centered conversations. Trial registration: Netherlands Trial Register: NL9219; registered (21 January 2021); NTR (trialregister.nl)
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Our study shows a steady increase in dementia- and DHT-related publications, particularly in areas such as mobile health, virtual reality, artificial intelligence, and sensor-based technologies interventions. This increase underscores the importance of systematic approaches and interdisciplinary collaborations, while identifying knowledge gaps, especially in lower-income regions. It is crucial that researchers worldwide adhere to evidence-based medicine principles to avoid duplication of efforts. This analysis offers a valuable foundation for policy makers and academics, emphasizing the need for an international collaborative task force to address knowledge gaps and advance dementia care globally.
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Most people with dementia (PwD) are cared for by unpaid family carers, many of whom must balance caring with paid work. This regularly entails dealing with care-related emergencies (CRE). This study aims to explore the impact of carers’ autonomy at work regarding breaks, schedule, and place on their ability to manage CRE, and use technology to that end. We conducted interviews with 16 working carers of PwD in Scotland. Data were analysed thematically to identify key themes. Autonomy at work appeared on a spectrum from no to complete autonomy. Carers’ position on this spectrum was often dynamic and determined by the nature of their work, their workplace culture and regulations, and their line managers’ support – or clients in the case of self-employed carers. Break autonomy allowed carers to use technology to be notified of and delegate the CRE response. Schedule autonomy allowed for an in-person response to CRE. Place autonomy allowed carers to work and care simultaneously, which enabled them to manage CRE immediately but presented them with additional challenges. Distance between workplace and PwD’s residence impacted carers’ ability to manage CRE, despite having complete autonomy. Implications for healthcare professionals, service providers, employers, policymakers, and technology developers are presented.
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