Frontiers in dementiaPub Date : 2024-10-03eCollection Date: 2024-01-01DOI: 10.3389/frdem.2024.1451310
Jacqueline Guzman, Susan Aguiñaga
{"title":"The COM-B model: a cross-sectional survey assessing capability, opportunities, and motivation to follow the MIND diet among informal female caregivers of people with Alzheimer's disease and related dementias.","authors":"Jacqueline Guzman, Susan Aguiñaga","doi":"10.3389/frdem.2024.1451310","DOIUrl":"https://doi.org/10.3389/frdem.2024.1451310","url":null,"abstract":"<p><strong>Introduction: </strong>Caring for a person with Alzheimer's disease or dementia has been correlated with poor dietary patterns in caregivers. Dietary patterns like The Mediterranean-DASH diet intervention for neurodegenerative delay (MIND) diet have the potential to reduce the negative health outcomes associated with caregiving. Our objective was to assess capabilities, opportunities, and motivation of caregivers to follow the MIND diet using the COM-B model approach.</p><p><strong>Method: </strong>Female caregivers (<i>n</i> = 299, <i>m</i> <sub>age</sub> = 37.7 ± 13.7) participated in an online survey. Majority were White (72%) and cared for someone with Alzheimer's disease (42.6%). The survey included at least one question for each of the 6 COM-B subcomponents: psychological capability, physical capability, social opportunity, physical opportunity, reflective motivation, and automatic motivation.</p><p><strong>Results: </strong>Most caregivers were not consuming the MIND diet as only 8.4% reported normally eating the MIND diet items. Caregivers (36.5%) were slightly confident or not confident at all in cooking and eating the MIND diet. Participants (67.1%) reported that consuming the MIND diet would somewhat to very much be supported by friends and family. Budget, time, and transportation were selected as the main barriers. Budget, cooking skills, access to food and stores, and family support were the main facilitators.</p><p><strong>Discussion: </strong>Strategies to increase capability, opportunities, and motivation for the MIND diet are needed to improve caregivers' health. Future MIND diet interventions should improve budget planning and cooking skills of caregivers (capabilities), make MIND diet food items accessible to them (opportunity) and incorporate social support from family and friends (motivation).</p>","PeriodicalId":520000,"journal":{"name":"Frontiers in dementia","volume":"3 ","pages":"1451310"},"PeriodicalIF":0.0,"publicationDate":"2024-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11484045/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142485579","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Frontiers in dementiaPub Date : 2024-10-01eCollection Date: 2024-01-01DOI: 10.3389/frdem.2024.1455619
Philipp Arendt, Katharina Römpler, Britta Brix, Viola Borchardt-Lohölter, Mandy Busse, Stefan Busse
{"title":"Differentiation of Alzheimer's disease from other neurodegenerative disorders using chemiluminescence immunoassays measuring cerebrospinal fluid biomarkers.","authors":"Philipp Arendt, Katharina Römpler, Britta Brix, Viola Borchardt-Lohölter, Mandy Busse, Stefan Busse","doi":"10.3389/frdem.2024.1455619","DOIUrl":"https://doi.org/10.3389/frdem.2024.1455619","url":null,"abstract":"<p><strong>Introduction: </strong>Prior research identified four neurochemical cerebrospinal fluid (CSF) biomarkers, Aβ1-42, Aβ1-40, tTau, and pTau(181), as core diagnostic markers for Alzheimer's disease (AD). Determination of AD biomarkers using immunoassays can support differential diagnosis of AD vs. several neuropsychiatric disorders, which is important because the respective treatment regimens differ. Results of biomarker determination can be classified according to the Amyloid/Tau/Neurodegeneration (ATN) system into profiles. Less is known about the clinical performance of chemiluminescence immunoassays (ChLIA) measuring specific biomarkers in CSF samples from patients suffering from neuropsychiatric impairments with various underlying causes.</p><p><strong>Methods: </strong>Chemiluminescence immunoassays (ChLIAs, EUROIMMUN) were used to determine Beta-Amyloid (1-40), Beta-Amyloid (1-42), Total-Tau, and pTau(181) concentrations in precharacterized cerebrospinal fluid (CSF) samples from 219 AD patients, 74 patients with mild cognitive impairment (MCI), and 220 disease control (DC) patients.</p><p><strong>Results: </strong>83.0% of AD patients had ATN profiles consistent with AD, whereas 85.5% of DC patients and 77.0% of MCI patients had profiles inconsistent with AD. AD patients showed significantly lower amyloid ratio Aβ1-42/Aβ1-40 (mean: 0.07) and significantly higher concentrations of tTau (mean: 901.6 pg/ml) and pTau(181) (mean: 129 pg/ml) compared to DC and MCI patients (all <i>p</i> values < 0.0071).</p><p><strong>Discussion: </strong>The ChLIAs effectively determined specific biomarkers and can support differential diagnostics of AD. Their quality was demonstrated in samples from 513 patients with cognitive impairments, representing a realistic mix of underlying causes for seeking treatment at a memory clinic.</p>","PeriodicalId":520000,"journal":{"name":"Frontiers in dementia","volume":"3 ","pages":"1455619"},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11473414/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142485566","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Frontiers in dementiaPub Date : 2024-09-30eCollection Date: 2024-01-01DOI: 10.3389/frdem.2024.1444815
Petra E M Tasseron-Dries, Hanneke J A Smaling, Jenny T van der Steen, Wilco P Achterberg
{"title":"Modifying a multidisciplinary method to address challenging behavior in nursing home residents with dementia to involve family caregivers.","authors":"Petra E M Tasseron-Dries, Hanneke J A Smaling, Jenny T van der Steen, Wilco P Achterberg","doi":"10.3389/frdem.2024.1444815","DOIUrl":"https://doi.org/10.3389/frdem.2024.1444815","url":null,"abstract":"<p><strong>Introduction: </strong>Challenging behavior and pain are common in nursing home residents with dementia. Challenging behavior and pain can be related and are stressful for residents, family caregivers and healthcare professionals. The STA OP! method provides a step-by-step protocol to manage challenging behavior and pain in nursing home residents with dementia. However, this method does not include a prominent and active role for family caregivers.</p><p><strong>Methods: </strong>The STA OP! method was modified to include a role for family caregivers, in co-creation with family caregivers and healthcare professionals using elements of a realist approach. In separate meetings, two advisory groups comprised of family caregivers and professionals discussed ideas on how to involve family caregivers in STA OP!. Furthermore, barriers to involving family and possible solutions to overcome those barriers were discussed. Experts who had experience with the STA OP! method assessed the feasibility of the ideas in a nominal group technique meeting.</p><p><strong>Results: </strong>Thirty-eight ideas emerged in the advisory groups. The two ideas that generated the most discussion were Inviting family for a multidisciplinary meeting, and Assessment of pain in collaboration with family caregivers. Eventually, 21 ideas and suggestions to overcome possible barriers were included in a manual for the training of healthcare professionals in the adapted method, now called STA OP! <i>with family</i>.</p><p><strong>Conclusion: </strong>Healthcare professionals and family caregivers collaborated well to shape the involvement of family caregivers in this method for managing challenging behavior and pain. The collected ideas supported by all involved resulted in a modified method: STA OP! <i>with family</i> and can now be tested in daily practice.</p>","PeriodicalId":520000,"journal":{"name":"Frontiers in dementia","volume":"3 ","pages":"1444815"},"PeriodicalIF":0.0,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11471609/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142485567","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Frontiers in dementiaPub Date : 2024-09-26eCollection Date: 2024-01-01DOI: 10.3389/frdem.2024.1458023
Sara Laureen Bartels, Nathan Stephens, Federica D'Andrea, Melanie Handley, Marine Markaryan, Andrea Nakakawa Bernal, Lieve Van den Block, Simone R de Bruin, Karen Windle, Martina Roes, Niels Janssen, Hannah Christie, Lesley Garcia, Gwen Teesing, Esme Moniz-Cook, Maud Graff
{"title":"Discussing methodological gaps in psychosocial intervention research for dementia: an opinion article from the INTERDEM Methodology Taskforce guided by the MRC framework.","authors":"Sara Laureen Bartels, Nathan Stephens, Federica D'Andrea, Melanie Handley, Marine Markaryan, Andrea Nakakawa Bernal, Lieve Van den Block, Simone R de Bruin, Karen Windle, Martina Roes, Niels Janssen, Hannah Christie, Lesley Garcia, Gwen Teesing, Esme Moniz-Cook, Maud Graff","doi":"10.3389/frdem.2024.1458023","DOIUrl":"10.3389/frdem.2024.1458023","url":null,"abstract":"","PeriodicalId":520000,"journal":{"name":"Frontiers in dementia","volume":"3 ","pages":"1458023"},"PeriodicalIF":0.0,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11464461/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142402618","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Frontiers in dementiaPub Date : 2024-09-23eCollection Date: 2024-01-01DOI: 10.3389/frdem.2024.1456716
Alicia Lu, Stephanie Than, Richard Beare, Alexandra La Hood, Taya Annabelle Collyer, Velandai Srikanth, Chris Moran
{"title":"Interactions between muscle volume and body mass index on brain structure in the UK Biobank.","authors":"Alicia Lu, Stephanie Than, Richard Beare, Alexandra La Hood, Taya Annabelle Collyer, Velandai Srikanth, Chris Moran","doi":"10.3389/frdem.2024.1456716","DOIUrl":"https://doi.org/10.3389/frdem.2024.1456716","url":null,"abstract":"<p><strong>Background: </strong>Low skeletal muscle volume may increase dementia risk through mechanisms affecting brain structure. However, it is unclear whether this relationship exists outside of sarcopenia and/or varies by other factors. We aimed to study the interplay between skeletal muscle volume and factors, such as age, sex, and body mass index (BMI), in explaining brain structure at midlife in a cohort without sarcopenia.</p><p><strong>Methods: </strong>We used abdominal and brain magnetic resonance imaging (MRI) data from a population-based cohort enrolled in the UK Biobank. The following measures were derived: thigh fat-free muscle volume (FFMV), total brain volume (TBV), gray matter volume (GMV), white matter volume (WMV), total hippocampal volume (THV), and white matter hyperintensity volume (WMHV). Participants below sex-based grip strength thresholds suggesting probable sarcopenia were excluded. Linear regression analysis was used to study the interaction or mediation effects of age, sex, and BMI on the associations between FFMV and brain volumes.</p><p><strong>Results: </strong>Data were available for 20,353 participants (median age 64 years, 53% female). We found interactions between thigh FFMV, BMI, and age (all <i>p</i> < 0.05). Greater thigh FFMV was associated with better brain volumes in those aged <64 years with normal (TBV: β = 2.0 ml/L, <i>p</i> = 0.004; GMV: β = 0.8 ml/L, <i>p</i> = 0.04; WMV: β = 1.1 ml/L, <i>p</i> = 0.006; WMHV: β = -0.2 ml/L, <i>p</i> = 3.7 × 10<sup>-5</sup>) or low BMI (TBV: β = 21.2 ml/L, <i>p</i> = 0.003; WMV: β = 13.3 ml/L, <i>p</i> = 0.002, WMHV: β = -1.1 ml/L, <i>p</i> = 0.04).</p><p><strong>Conclusion: </strong>Greater thigh muscle volume correlates with better brain volumes at midlife in people without sarcopenia, but this relationship weakens with greater age and BMI. Further study is required to investigate the underlying mechanisms to understand which components of body composition are potentially modifiable risk factors for dementia.</p>","PeriodicalId":520000,"journal":{"name":"Frontiers in dementia","volume":"3 ","pages":"1456716"},"PeriodicalIF":0.0,"publicationDate":"2024-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11456486/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142396892","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Frontiers in dementiaPub Date : 2024-09-18eCollection Date: 2024-01-01DOI: 10.3389/frdem.2024.1490895
Joey Wong, Lillian Hung, Cates Bayabay, Karen Lok Yi Wong, Annette Berndt, Jim Mann, Lily Wong, Lynn Jackson, Mario Gregorio
{"title":"Corrigendum: A critical reflection on using the Patient Engagement In Research Scale (PEIRS) to evaluate patient and family partners' engagement in dementia research.","authors":"Joey Wong, Lillian Hung, Cates Bayabay, Karen Lok Yi Wong, Annette Berndt, Jim Mann, Lily Wong, Lynn Jackson, Mario Gregorio","doi":"10.3389/frdem.2024.1490895","DOIUrl":"https://doi.org/10.3389/frdem.2024.1490895","url":null,"abstract":"<p><p>[This corrects the article DOI: 10.3389/frdem.2024.1422820.].</p>","PeriodicalId":520000,"journal":{"name":"Frontiers in dementia","volume":"3 ","pages":"1490895"},"PeriodicalIF":0.0,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11445679/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142368163","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Frontiers in dementiaPub Date : 2024-09-16eCollection Date: 2024-01-01DOI: 10.3389/frdem.2024.1426019
Susanne de Wolf-Linder, Iris Kramer, Martina Hersperger, Maria Schubert, Sonja Bächi, Monika Stolz, Emma Wolverson, Christina Ramsenthaler
{"title":"Meaningful patient and public engagement in dissemination-embedding co-production in dementia research.","authors":"Susanne de Wolf-Linder, Iris Kramer, Martina Hersperger, Maria Schubert, Sonja Bächi, Monika Stolz, Emma Wolverson, Christina Ramsenthaler","doi":"10.3389/frdem.2024.1426019","DOIUrl":"10.3389/frdem.2024.1426019","url":null,"abstract":"<p><strong>Background: </strong>Patient and Public Involvement and Engagement (PPIE) is still underutilised in both dementia research and corresponding dissemination activities.</p><p><strong>Aim: </strong>To describe the methods, format, and lessons learned in co-creating and co-producing a dissemination strategy for a research project focused on establishing patient-centred outcome measures into routine palliative community care for persons living with dementia (PLWD) and their informal carers.</p><p><strong>Materials and methods: </strong>A participatory, hybrid-format workshop was conducted to co-create the dissemination strategy with a PPIE group. A video presentation of findings and a list of prompts shared prior to the workshop were used to elicit views on dissemination strategies and knowledge translation. The workshop was followed up with a survey to consolidate the dissemination strategy. Workshop minutes and survey responses were analysed using qualitative thematic analysis.</p><p><strong>Results: </strong>22 participants from our diverse PPIE group attended the workshop. Two major themes emerged: (a) Knowledge translation: building bridges between research and practise, and (b) Collaboration and dissemination: everyone's voice is needed. Participants suggested critical changes to dissemination methods and materials. Successful knowledge translation depends on a strong evidence base. For this, materials need to be tailored to specific audiences. Everyone's voice needs to be integrated through co-production in dissemination activities by PPIE members to influence societal change. Tailored dissemination activities within a dissemination strategy were co-created spanning all phases of the research cycle.</p><p><strong>Discussion: </strong>Informing and educating the public and policymakers about the needs of PLWD relies on disseminating and fostering knowledge translation throughout all phases of the research cycle.</p>","PeriodicalId":520000,"journal":{"name":"Frontiers in dementia","volume":"3 ","pages":"1426019"},"PeriodicalIF":0.0,"publicationDate":"2024-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11439697/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142336199","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The use of audio-biographical cues in dementia care: a four-year evaluation in Swiss hospitals, care, and domestic homes.","authors":"Heather Edwards, Sandra Oppikofer, Damaris Aschwanden","doi":"10.3389/frdem.2024.1429290","DOIUrl":"https://doi.org/10.3389/frdem.2024.1429290","url":null,"abstract":"<p><strong>Introduction: </strong>In dementia care, the integration of innovative interventions is essential to enhancing the wellbeing and quality of life of people with dementia. Among these interventions, the Music Mirror intervention has emerged as a promising tool to provide personalized audio-biographical cues aimed at soothing, motivating, and engaging people with dementia. This study examined the effects of a Music Mirror intervention on the (a) wellbeing, emotions, and behavioral and psychological symptoms of 155 individuals with dementia, (b) perceived burden, relationship quality, and gains of their informal/formal caregivers, and (c) momentary closeness, wellbeing and stress of caregivers.</p><p><strong>Methods: </strong>This four-year study employed a quasi-experimental waiting-control group design, utilizing before-after measurements in Swiss hospitals, care homes, and domestic homes. For four 6-week intervention phases, Music Mirrors, i.e., brief written resources of acoustic material, associated with practical activities of daily life, were applied at least twice a week by the caregivers during critical moments such as staff handover. Repeated measures' analysis of variance and other tests were used to analyze the data.</p><p><strong>Results: </strong>Individuals with dementia had a higher wellbeing after the Music Mirror use across different care situations. While the Music Mirrors were played, individuals with dementia showed more positive than negative emotions at each measurement occasion, but emotion scores did not significantly change over time. After the MM use, caregivers felt better, closer to the person with dementia, and less stressed. Caregivers also reported significant gains at the end of the intervention. However, there were no significant changes in the frequency of the behavioral and psychological symptoms of dementia, care-related burden and relationship quality over time, regardless of the treatment condition.</p><p><strong>Discussion: </strong>By incorporating personalized audio-biographical cues into their care routines, the wellbeing of people with dementia was improved as well as it had positive momentary effects on their caregivers. The Music Mirror intervention addresses the preferences and needs of people with dementia and helps build bonds between care-recipients and caregivers. Therefore, Music Mirrors can be seen as a highly adaptive and individualized instrument to improve momentary wellbeing of people with dementia in various care situations during daily life.</p>","PeriodicalId":520000,"journal":{"name":"Frontiers in dementia","volume":"3 ","pages":"1429290"},"PeriodicalIF":0.0,"publicationDate":"2024-08-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11401044/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142306131","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Frontiers in dementiaPub Date : 2024-08-16eCollection Date: 2024-01-01DOI: 10.3389/frdem.2024.1458038
Max Stevenson, Norah K Algarzae, Charbel Moussa
{"title":"Tyrosine kinases: multifaceted receptors at the intersection of several neurodegenerative disease-associated processes.","authors":"Max Stevenson, Norah K Algarzae, Charbel Moussa","doi":"10.3389/frdem.2024.1458038","DOIUrl":"10.3389/frdem.2024.1458038","url":null,"abstract":"<p><p>Tyrosine kinases (TKs) are catalytic enzymes activated by auto-phosphorylation that function by phosphorylating tyrosine residues on downstream substrates. Tyrosine kinase inhibitors (TKIs) have been heavily exploited as cancer therapeutics, primarily due to their role in autophagy, blood vessel remodeling and inflammation. This suggests tyrosine kinase inhibition as an appealing therapeutic target for exploiting convergent mechanisms across several neurodegenerative disease (NDD) pathologies. The overlapping mechanisms of action between neurodegeneration and cancer suggest that TKIs may play a pivotal role in attenuating neurodegenerative processes, including degradation of misfolded or toxic proteins, reduction of inflammation and prevention of fibrotic events of blood vessels in the brain. In this review, we will discuss the distinct roles that select TKs have been shown to play in various disease-associated processes, as well as identify TKs that have been explored as targets for therapeutic intervention and associated pharmacological agents being investigated as treatments for NDDs.</p>","PeriodicalId":520000,"journal":{"name":"Frontiers in dementia","volume":"3 ","pages":"1458038"},"PeriodicalIF":0.0,"publicationDate":"2024-08-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11361951/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142116880","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Frontiers in dementiaPub Date : 2024-08-07eCollection Date: 2024-01-01DOI: 10.3389/frdem.2024.1421541
Katja Seidel, Claudia Winiarski, Jochen René Thyrian, Julia Haberstroh
{"title":"The psychological effects of research participation on people with dementia: findings from a German exploratory interview study.","authors":"Katja Seidel, Claudia Winiarski, Jochen René Thyrian, Julia Haberstroh","doi":"10.3389/frdem.2024.1421541","DOIUrl":"10.3389/frdem.2024.1421541","url":null,"abstract":"<p><p>The German National Dementia Strategy aims to engage people with dementia in research projects. However, the effects of such research participation on experience and behavior have been insufficiently explored. This study aimed to investigate the psychological effect of research participation on people living with dementia. In a qualitative, exploratory approach, guideline-based interviews were conducted with four persons with dementia who had served as co-researchers on an advisory board in a health services research study for 8 months at that time. The analysis revealed predominantly positive effects of research participation at all levels of experience and behavior. Most effects were reported by the co-researchers on a cognitive level. Both the perception of being competent and of making a positive contribution to oneself and/or others are key effects of research participation. The main effects on an emotional level were joy and wellbeing and on a behavioral level were positive social contacts and social communication. Sadness and insecurity represent the sole negative effects. Nuanced focal points of effects among the individual interviews were found. The results align with existing research highlighting the positive effects of participation on people with dementia. Through advancing an interdisciplinary perspective on their research involvement, we advocate for heightened attention to this topic within the realm of psychology.</p>","PeriodicalId":520000,"journal":{"name":"Frontiers in dementia","volume":"3 ","pages":"1421541"},"PeriodicalIF":0.0,"publicationDate":"2024-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11335729/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142020004","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}