scholarly journals Moral motivation regarding dementia risk testing among affected persons in Germany and Israel

2021 ◽  
pp. medethics-2020-106990
Author(s):  
Zümrüt Alpinar-Sencan ◽  
Silke Schicktanz ◽  
Natalie Ulitsa ◽  
Daphna Shefet ◽  
Perla Werner

Recent advances in biomarkers may soon make it possible to identify persons at high risk for late-onset Alzheimer’s disease at a presymptomatic (preclinical) stage. Popular demand for testing is increasing despite the lack of cure and effective prevention options and despite uncertainties regarding the predictive value of biomarker tests. This underscores the relevance of the ethical, cultural and social implications of predictive testing and the need to advance the bioethical debate beyond considerations of clinical consequences. Our qualitative study included three groups of affected persons: People with mild neurocognitive disorder, their relatives and family caregivers of people with dementia. We explored their moral motivations regarding predictive, biomarker-based testing and preclinical diagnostics. We interviewed affected individuals in Germany and Israel (N=88; 44 participants in each country). Transcripts of 12 focus groups and 12 semistructured interviews were content analysed with a focus on the moral motivations of affected persons in their justification of why they accept or reject predictive testing and early diagnosis. We grouped the underlying aspects of moral motivation into four ethical categories: beneficence as a form of personal utility focusing on well-being, the ties of responsibility linking families and their individual members, the importance of self-determination by later life planning and notions of a good life. In general, cultural parallels among these motives were very obvious. Cultural variation occurred mainly in openness to suicide, scepticism about test validity and emphasis on personal autonomy. The study underscores the importance of counselling for life-planning issues and of informing test candidates about problems with test validity and about the ambiguity of test results.

2017 ◽  
Vol 66 (1) ◽  
pp. 52-61 ◽  
Author(s):  
Mariângela Aparecida Rezende Aleixo ◽  
Raquel Luiza Santos ◽  
Marcia Cristina do Nascimento Dourado

ABSTRACT Objective A large number of psychosocial interventions in dementia are based on music activities and music therapy interventions. We aim at assessing the efficacy of music therapy in the neuropsychiatric symptoms of people with dementia. Methods This systematic review is according to the methodology suggested by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. We searched for articles in PubMed, Web of Knowledge Cross Search, Cochrane Library, Scopus and Lilacs/Bireme databases published from 2005 to 2016. The search keywords included “early onset” and “late onset” combined with “dementia”, “Alzheimer”, “vascular dementia”, “mixed dementia”, “frontotemporal dementia”, “neuropsychiatric symptoms”, “behavioral disturbances”, “behavioral and psychological symptoms of dementia” and “music therapy”. The studies were categorized according to its efficacy on the decline of neuropsychiatric symptoms and improvement of cognitive function, quality of life and well-being. Results We selected 12 out of 257 papers. Music therapy interventions were applied individually or in group setting, using active or receptive technique. In general, studies indicated the efficacy of music therapy on the decline of depression, agitation and anxiety. There were heterogeneity of interventions, methodological design and instruments of evaluation among the studies. Conclusions Although there are reports of the efficacy of music therapy on the decline of neuropsychiatric symptoms of dementia, the area still needs randomized studies aimed at the solution of important methodological problems like the lack of standardized approaches.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 678-678
Author(s):  
Christina Victor ◽  
Ruth Lamont ◽  
Isla Rippon ◽  
Linda Clare

Abstract There is a rich literature from The United States looking at the importance of religion and spirituality in the lives of older adults where it is positively linked with wellbeing. Despite the increased interest in wellbeing in the UK comparatively little interest has been show in the role of religion and spirituality in promoting wellbeing including quality of life, life satisfaction and loneliness. In this paper we explore these issues using three data sets: the European Social Survey (ESS), the English Longitudinal Study of Ageing (ELSA) and the IDEAL cohort of people with dementia and their carers to examine (a) the variation in religious practice by older adults, those aged 50+, across Europe; (b) the epidemiology of religious practice among older adults within England and (c) using both ELSA and IDEAL consider the relationship between religion and wellbeing in later life.


GeroPsych ◽  
2019 ◽  
Vol 32 (3) ◽  
pp. 125-134
Author(s):  
Mechthild Niemann-Mirmehdi ◽  
Andreas Häusler ◽  
Paul Gellert ◽  
Johanna Nordheim

Abstract. To date, few studies have focused on perceived overprotection from the perspective of people with dementia (PwD). In the present examination, the association of perceived overprotection in PwD is examined as an autonomy-restricting factor and thus negative for their mental well-being. Cross-sectional data from the prospective DYADEM study of 82 patient/partner dyads (mean age = 74.26) were used to investigate the association between overprotection, perceived stress, depression, and quality of life (QoL). The analyses show that an overprotective contact style with PwD has a significant positive association with stress and depression, and has a negative association with QoL. The results emphasize the importance of avoiding an overprotective care style and supporting patient autonomy.


GeroPsych ◽  
2018 ◽  
Vol 31 (1) ◽  
pp. 31-39 ◽  
Author(s):  
Ljiljana Kaliterna Lipovčan ◽  
Tihana Brkljačić ◽  
Zvjezdana Prizmić Larsen ◽  
Andreja Brajša-Žganec ◽  
Renata Franc

Abstract. Research shows that engagement in leisure activities promotes well-being among older adults. The objective of the current study was to examine the relationship between subjective well-being (flourishing) and leisure activities (total number of different activities in the previous year) in a sample of older adults in Croatia, thereby considering the variables of sex, marital status, financial status, and self-perceived health. The differences in the examined variables between the groups of older adults who reported to be engaged in new activities with those who did not were also examined. The sample of N = 169 older adults aged 60 years and above was drawn from a convenience sample of adult internet users in Croatia. Participants reported their self-perceived health and the number of leisure activities they engaged in over the previous year as well as completing the Flourishing Scale. Hierarchical regression analyses indicated that older adults who were engaged in more various leisure activities, who perceived better financial status, and who were married reported higher levels of flourishing. A comparison of the two groups of older adults with and without engagement in leisure activities showed that those engaged in at least one leisure activity were more likely to be women, reported higher levels of flourishing, and perceived their own financial status as better. This study indicated that engaging in leisure activities in later life might provide beneficial effects for the well-being of older adults.


GeroPsych ◽  
2014 ◽  
Vol 27 (1) ◽  
pp. 23-31 ◽  
Author(s):  
Anne Kuemmel (This author contributed eq ◽  
Julia Haberstroh (This author contributed ◽  
Johannes Pantel

Communication and communication behaviors in situational contexts are essential conditions for well-being and quality of life in people with dementia. Measuring methods, however, are limited. The CODEM instrument, a standardized observational communication behavior assessment tool, was developed and evaluated on the basis of the current state of research in dementia care and social-communicative behavior. Initially, interrater reliability was examined by means of videoratings (N = 10 people with dementia). Thereupon, six caregivers in six German nursing homes observed 69 residents suffering from dementia and used CODEM to rate their communication behavior. The interrater reliability of CODEM was excellent (mean κ = .79; intraclass correlation = .91). Statistical analysis indicated that CODEM had excellent internal consistency (Cronbach’s α = .95). CODEM also showed excellent convergent validity (Pearson’s R = .88) as well as discriminant validity (Pearson’s R = .63). Confirmatory factor analysis verified the two-factor solution of verbal/content aspects and nonverbal/relationship aspects. With regard to the severity of the disease, the content and relational aspects of communication exhibited different trends. CODEM proved to be a reliable, valid, and sensitive assessment tool for examining communication behavior in the field of dementia. CODEM also provides researchers a feasible examination tool for measuring effects of psychosocial intervention studies that strive to improve communication behavior and well-being in dementia.


2013 ◽  
Vol 25 (3) ◽  
pp. 118-128 ◽  
Author(s):  
Florian Rehbein ◽  
Dirk Baier

In recent years, a variety of epidemiological studies have provided empirical data on the prevalence of video game addiction (GA) in different age groups. However, few studies investigated the causes of GA and could explain why video game playing as a widespread phenomenon leads to a comparatively small percentage of addicted players. Additionally, the existing longitudinal studies mainly consider psychological trait variables and neglect the possible explanatory value of predictors in socialization regarding media availability, media use, and family and everyday school life. In this paper, the results of a two-wave longitudinal study comprising a sample of students from Grades 4 to 9 (N = 406) are presented. The data show that 15-year-old video game addicts had already exhibited a number of specific risk factors at the age of 10. Students from single-parent families seem to be particularly at risk, as are students with low experienced school well-being and with a weaker social integration in class. The data also indicate that problematic use of video games in childhood increases the risk of GA in adolescence. Male students are especially vulnerable for developing GA. The results of this study are an important contribution to understanding risk factors for GA in adolescents, thereby laying the groundwork for effective prevention measures.


Author(s):  
Inmaculada Méndez ◽  
Esther Secanilla ◽  
Juan P. Martínez ◽  
Josefa Navarro

In a global approach about the need of paying attention to staff working with and for older people with dementia and other diseases in residential care, it is necessary to investigate their emotional well-being to provide strategies to improve their quality of life and therefore their quality of patient care. Professional caregivers of people with dementia and other diseases have specific psycho-sociological problems. They are more prone to stress which can sometimes lead to the “burnout” due to specific functions in the workplace. To define the sample was decided to compare two residential centers of two regions, Murcia and Barcelona. We proceeded to the administration of the following measuring instruments: the scale Maslach Burnout Inventory (MBI) and an ad hoc survey conducted for professional caregivers. Finally, the results offer the possibility of carrying out programs to prevent emotional exhaustion in professional carers, as well as the possibility of designing psychoeducational programs for staff care and even future proactive and reactive interventions.


Sign in / Sign up

Export Citation Format

Share Document