scholarly journals Ethical Considerations in Dementia Diagnosis and Care

Neurology ◽  
2021 ◽  
Vol 97 (2) ◽  
pp. 80-89
Author(s):  
Winston Chiong ◽  
Amy Y. Tsou ◽  
Zachary Simmons ◽  
Richard J. Bonnie ◽  
James A. Russell ◽  
...  

Alzheimer disease and other dementias present unique practical challenges for patients, their families, clinicians, and health systems. These challenges reflect not only the growing public health effect of dementia in an aging global population, but also more specific ethical complexities including early loss of patients' capacity to make decisions regarding their own care, the stigma often associated with a dementia diagnosis, the difficulty of balancing concern for patients' welfare with respect for patients' remaining independence, and the effect on the physical, emotional, and financial well-being of family caregivers. Caring for patients with dementia requires respecting patient autonomy while acknowledging progressively diminishing decisional capacity and continuing to provide care in accordance with other core ethical principles (beneficence, justice, and nonmaleficence). Whereas these ethical principles remain unchanged, neurologists must reconsider how to apply them given changes across multiple domains including our understanding of disease, clinical and legal tools for addressing manifestations of illness, our expanding awareness of the crucial role of family caregivers in providing care and maintaining patient quality of life, and societal conceptions of dementia and individuals' personal expectations for aging. This revision to the American Academy of Neurology's 1996 position statement summarizes ethical considerations that often arise in caring for patients with dementia; although it addresses how such considerations influence patient management, it is not a clinical practice guideline.

2017 ◽  
Vol 29 (3) ◽  
pp. 139-147 ◽  
Author(s):  
Ayumi Honda ◽  
Yoshie Iwasaki ◽  
Sumihisa Honda

The purpose of this study was to investigate whether the well-being of caregivers is mediated by the association between behavioral and psychological symptoms in elderly relatives and the quality of sleep experienced by caregivers using a mediational model. The participants were 105 working family caregivers in Japan. We assessed well-being based on the Kessler Scale 10, self-rated health, and satisfaction in daily life. Our results showed that the well-being in working family caregivers was impacted by the severity of behavioral and psychological symptoms in elderly relatives. Well-being in working family caregivers was also affected by quality of sleep. Maintaining good quality of sleep in working family caregivers is important for reducing caregiver burden and psychological distress, and for improving the balance between work and family life.


2020 ◽  
Vol 16 (5) ◽  
pp. 675-688
Author(s):  
Shamsi Abbasalizadeh ◽  
Behzad Ebrahimi ◽  
Aslan Azizi ◽  
Rogaye Dargahi ◽  
Maryam Tayebali ◽  
...  

Constipation is a common public health concern experienced by all individuals during their life affecting the quality of life. In this paper, we aimed to provide an overview of the existing evidence regarding the role of food ingredients, including bran, prune, fig, kiwifruit, and flax-seed in constipation treatment. We searched Scopus, Pub Med, and Science Direct by using the keywords, “laxative foods” and “constipation”, for searching studies assessing laxative food ingredients and their beneficial effects on constipation treatment and/or control. Lifestyle modifications such as increasing dietary fiber and fluid intake and daily exercise are the proposed first line treatments for constipation. Optimizing ‘diet’ as an efficient lifestyle factor may contribute to the well-being of patients. The use of laxative food ingredients including bran, prune, fig, kiwifruit, flax-seed, probiotics, and prebiotics is a convenient alternative to cope with constipation. According to previous findings, laxative food ingredients could be considered as effective treatments for subjects suffering from constipation. Many studies have assessed the pharmacological and non-pharmacological roles of these ingredients in treating constipation, however, their importance has not been thoroughly investigated.


Author(s):  
Munmun De Choudhury

Social media platforms have emerged as rich repositories of information relating to people’s activities, emotions, and linguistic expression. This chapter highlights how these data may be harnessed to reason about human mental and psychological well-being. It also discusses the emergent role of social media in providing a platform of self-disclosure and support to distressed and vulnerable communities. It reflects on how this new line of research bears potential for informing the design of timely and tailored interventions, provisions for improved personal and societal well-being assessment, privacy and ethical considerations, and the challenges and opportunities of the increasing ubiquity of social media.


Uro ◽  
2021 ◽  
Vol 1 (1) ◽  
pp. 14-22
Author(s):  
Tommaso Cai ◽  
Paolo Verze ◽  
Truls E. Bjerklund Johansen

The quality of life (QoL) concept now includes new aspects related to patients’ well-being because QoL has become more of a personal perception than an an objective and measurable entity. Here, we discuss the principal aspects of QoL-related aspects in urology and andrology by using a narrative review. Some aspects concerning the QoL are essential when managing uro-andrological patients. The aim of treatments should not only include the absence of disease or symptoms relief but also the improvement of a patient’s QoL with regard to his/her internal status and relationship with others. In this sense, any therapeutic approach should be based on the patient’s perspectives and not only on the instrumental and laboratory findings. Finally, we discussed the role of a patient’s sexual partner adding an extra dimension to the patient-centerd approach as part of the QoL concept in andrology.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.


2019 ◽  
Vol 2 (2) ◽  
pp. 111-133 ◽  
Author(s):  
Efstratia Arampatzi ◽  
Martijn J. Burger ◽  
Spyridon Stavropoulos ◽  
Frank G. van Oort

2009 ◽  
Vol 13 (5) ◽  
pp. 761-768 ◽  
Author(s):  
Alma Au ◽  
Man-Kin Lai ◽  
Kam-Mei Lau ◽  
Pey-Chyou Pan ◽  
Linda Lam ◽  
...  

2016 ◽  
Vol 27 (4) ◽  
pp. 520-533 ◽  
Author(s):  
Catherine Henshall ◽  
Sheila Greenfield ◽  
Nicola Gale

This article explores the relationship between cancer survivors’ use of self-management practices and their search for normality. Using Frank’s illness narratives and other theoretical literature on normality in chronic illness, it draws on findings from a qualitative study to explore different ways cancer survivors use self-management practices to re-establish normality in their lives post-cancer. The findings suggest that “normality” represents different things to cancer survivors. We suggest that normality in survivorship is not a static concept but is fluid, and at certain times, cancer survivors may display some or all of these different versions of normality. The findings show that self-management practices can help cancer survivors experiment with different health and lifestyle processes to help support their “normal” daily lifestyle activities, quality of life, and well-being.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e23557-e23557
Author(s):  
Jonathan R. Day ◽  
Benjamin Miller ◽  
Sarah L. Mott ◽  
Bradley T. Loeffler ◽  
Munir Tanas ◽  
...  

e23557 Background: Sarcomas are a diverse group of neoplasms that vary greatly in clinical presentation and responsiveness to treatment. Given the differences in the sites of involvement, rarity, and treatment modality, a multidisciplinary approach is required. Previous literature suggests patients with sarcoma suffer from poorer quality of life (QoL) especially physical and functional well-being. This study aims to understand if there is an association between treatment at a tertiary sarcoma center and a difference in QoL. Methods: De-identified data was obtained from the Sarcoma Tissue Repository at University of Iowa. Mixed effects regression models were utilized to evaluate the association between disease and treatment characteristics and QoL. QoL was assessed using the self-report FACT-G questionnaire at 12-, 24-, and 36-months post-diagnosis; overall scores and the 4 well-being subscales (Physical, Emotional, Social, Functional) were calculated. Results: 443 patients were identified. Soft tissue sarcomas were more prevalent (87.6%) than bone (12.4%). 53% of patients received chemotherapy and 38.6% got radiation therapy. Sarcomas were most frequently located in the lower extremities(ext.) (33.1%), followed by abdomen (20.9%), pelvic (13.6%), upper ext. (13.1%), thorax (11.3%), head & neck (7.8%). For ext. sarcoma; lower ext: 144 (71.3%), Upper ext: 58 (28.7%). Patients with extremity sarcoma; 133 had limb sparing and 48 had amputations. FACT-G Scores did not appreciably vary between 12, 24-, and 36-month for any QoL responses. Overall well-being had a mean score reported of 87.7 (sd = 15.7). Social well-being sores averaged 23.5 (5.0). Emotional well-being (EWB) 19.2 (4.1) and functional well-being (FWB) 21.3 (6.1), and physical well-being (PWB) 23.7 (4.6). There was no association between overall, PWB, EWB, or FWB with the histological subtype, radiation treatment, type of limb surgery, or any location in the same patients over time. Chemotherapy treatments were associated with lower well-being in multiple domains; PWB scores being 2.01 points lower, (p < 0.01), EWB scores being 1.27 points lower (p = 0.01) and FWB scores being 1.72 (p = 0.03), and 4.44 points lower overall (p = 0.03), on average, after adjusting for overall changes across time. Patients with ext. sarcoma only overall FACT-G scores differed 6.72 points higher for upper ext. than lower ext (p = 0.04). Conclusions: Overall QoL areas were similar to normative FACT-G scores both overall and specific areas. Having received chemotherapy was associated with lower well-being scores physically, emotionally, functionally, and overall. There were no clinically relevant differences reported in QoL scores between 12-,24-, and 36-months in the same patients. Further work is needed to describe QoL differences among patients with sarcoma at tertiary centers and examine what protective factors may influence patient well-being.


Author(s):  
Ieva Ančevska

The article examines the depiction of gratitude and related events in Latvian folklore through comparative evaluation. Gratitude is considered in a psychological context, comparing the attitude expressed in folklore with the findings of modern scientific research. Gratitude is a concept that is usually associated with a relationship or a benefit, it is most often aimed outwards, dedicated to someone else, but at the same time, it creates a pleasant feeling within the person. In modern psychology, gratitude is receiving more and more attention from researchers because its manifestations stimulate the formation of positive emotions and contribute to the improvement of the person’s overall well-being. Research and clinical studies in psychotherapy confirm that gratitude plays an important role in improving mental health and reducing depressive, destructive feelings. In turn, neuroscience research shows the potential of a grateful and positive attitude in strengthening psycho-emotional health and well-being in general. In Latvian folklore, gratitude is depicted as an important part of ritual events, which helps to ensure a positive, balanced connection with the forces of nature, gods, and society. In folklore, the importance of gratitude is emphasised more when building family relationships or accepting various situations and occurrences in life. In both psychological research and the practice of systemic therapy, as well as in folklore, gratitude appears as one of the most important values of interpersonal connection, which promotes the formation of harmonious relationships. Similar to the opinions of psychology, the folk world views emphasise the motivational role of gratitude in improving the quality of human life and health in general.


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