Ethical issues in the care of people with dementia

2020 ◽  
Vol 13 (6) ◽  
pp. 374-381
Author(s):  
Joshua Parker
Keyword(s):  
Cognitive Decline ◽  
Functional Impairment ◽  
Ethical Issues ◽  
Memory Loss ◽  
Assistive Technologies ◽  
Best Interests ◽  
Truth Telling ◽  
People With Dementia

Dementia is a syndrome characterised by cognitive decline, memory loss and progressive functional impairment. It is increasingly common, and is largely managed in the community. The nature of dementia leads to many deep philosophical problems that bear on the various ethical issues that arise for clinicians caring for these patients. This article explores these ethical issues with a focus on promoting autonomy and making best interests decisions. Everyday ethical issues including truth telling, restraint and limitations of freedom, abuse and vulnerability are considered. Ethical issues generated by the use of assistive technologies and finally confidentiality are also, briefly, considered. Although this article cannot give specific ‘right answers’ to the myriad ethical issues confronting GPs working with people with dementia, it does aim to highlight productive lines of thought in navigating such issues.

Assistive Technologies for People with Dementia

2015 ◽  
pp. 269-289 ◽  
Author(s):  
Christos N. Xenakidis ◽  
Antonis M. Hadjiantonis ◽  
George M. Milis
Keyword(s):  
Cognitive Decline ◽  
Mobile Applications ◽  
Basic Needs ◽  
Assistive Technologies ◽  
Smart Devices ◽  
Empirical Knowledge ◽  
Disease Symptoms ◽  
People With Dementia ◽  
Early Alzheimer’S Disease ◽  
Available Technology

This chapter focuses on the presentation and discussion of available assistive tools for people with dementia symptoms and cognitive decline, leading to the conclusion that these tools may, nowadays, will be replaced by mobile applications for smart devices. A functional mobile prototype assistive application for android platform devices like smartphones, tablets and smartwatches is presented, with features that offer support to the basic needs of caregivers and people with cognitive decline, giving more emphasis on people with early Alzheimer's disease symptoms. It is shown that, utilising the available technology, as well as existing literature and empirical knowledge, mobile applications may offer a serious alternative to currently available assistive tools, while also offering considerable functionality advantages.

scholarly journals Explaining the effects of symptom attribution by carers on help-seeking for individuals living with dementia

Dementia ◽  
2016 ◽  
Vol 16 (3) ◽  
pp. 375-387 ◽  
Author(s):  
Lisa Feldman ◽  
Jane Wilcock ◽  
Ingela Thuné-Boyle ◽  
Steve Iliffe
Keyword(s):  
General Practice ◽  
Cognitive Decline ◽  
Life Events ◽  
Help Seeking ◽  
Public Awareness ◽  
Memory Loss ◽  
Behavioural Symptoms ◽  
People With Dementia ◽  
Help Seeking Behaviour ◽  
Symptom Attribution

This study investigated the effects of carer attributions on help-seeking behaviour for people with dementia using interviews with 84 carers recruited through general practice. Memory loss was the most commonly reported first symptom but psychological and behavioural symptoms were also common at onset. In over a third of individuals help-seeking was delayed for a mean of 25 months (range 6–69, SD 19.3). Help-seeking between those who attributed symptoms to dementia, or to unknown causes, and those who attributed symptoms to personality, ageing, life events or other illnesses was statistically significant ( p < 0.001). No statistically significant associations between help-seeking and patient or carer characteristics were found. There is a need to raise public awareness about the range of symptoms suggestive of dementia. Assumptions that age and other conditions may be the likely cause of an individual’s cognitive decline needs to be challenged by practitioners. Attribution of symptoms to characteristics other than dementia delays help-seeking.

Ethical aspects of using GPS for tracking people with dementia: recommendations for practice

2011 ◽  
Vol 24 (3) ◽  
pp. 358-366 ◽  
Author(s):  
Ruth Landau ◽  
Shirli Werner
Keyword(s):  
Assistive Technologies ◽  
Best Interests ◽  
Ethical Aspects ◽  
Behavioral Disturbances ◽  
Positioning Systems ◽  
Her Family ◽  
The People ◽  
People With Dementia ◽  
Practical Guidelines ◽  
Tracking Devices

ABSTRACTBackground: Problems with out-of-home mobility are among the more common behavioral disturbances in dementia. Today people with dementia can be aided by easily accessible assistive technologies, such as tracking devices using Global Positioning Systems (GPS). Attitudes toward these technologies are still inconclusive and their use with people with dementia raises ethical concerns. The lack of ethical consensus on the use of GPS for people with dementia underlines the need for clearer policies and practical guidelines.Methods: Here we summarize qualitative and quantitative findings from a larger research project on the ethical aspects of using GPS for tracking people with dementia.Results: The findings are formulated in a list of recommendations for policy-makers as well as for professional and family caregivers. Among other points, the recommendations indicate that the preferences and best interests of the people with dementia should be central to the difficult decisions required in dementia care. Further, no-one should be coerced into using tracking technology and, where possible, people with dementia must be involved in the decision-making and their consent sought.Conclusions: The decision whether, when and how to use GPS for tracking people with dementia should be made at the time of diagnosis jointly by the person with dementia, his/her family and professional caregivers. This decision should be made in formal structured meetings facilitated by a professional team.

Involving people with dementia and their informal caregivers in the development process of assistive technology: Description and evaluation of a user-centered design (Preprint)

2020 ◽  
Author(s):  
Iris A.G.M. Geerts ◽  
Liselore J.A.E Snaphaan ◽  
Inge M.B. Bongers
Keyword(s):  
Focus Groups ◽  
Assistive Technology ◽  
Field Study ◽  
Development Process ◽  
Technology Development ◽  
Informal Caregivers ◽  
Assistive Technologies ◽  
User Centered Design ◽  
People With Dementia ◽  
User Centered

BACKGROUND Despite the potential value of assistive technology to support people with dementia (PWD) in everyday activities, use of these technologies is still limited. To ensure that assistive technologies better address the specific needs and daily context of PWD and their informal caregivers, it is particularly important to involve them in all different phases of assistive technology development. The literature rarely describes the involvement of PWD throughout the development process of assistive technologies, which makes it difficult to further reflect on and improve active involvement of PWD. OBJECTIVE This two-part study aimed to gather insights on the user-centered design (UCD) applied in the development process of the alpha prototype of the serious game PLAYTIME by describing the methods and procedures of the UCD as well as evaluating the UCD from the perspective of all involved stakeholders. METHODS The first three phases of the user-driven Living Lab of Innovate Dementia 2.0 were applied to directly involve PWD and their informal caregivers through qualitative research methods, including focus groups and a context-field study, in the development of the alpha prototype of PLAYTIME from exploration to design to testing. After the testing phase, a total number of 18 semi-structured interviews were conducted with PWD, their informal caregivers and the project members of PLAYTIME to evaluate the applied UCD from the perspective of all involved stakeholders. The interviews addressed five of the principles for successful UCD and the appropriateness of the different methods used in the focus groups and context-field study. RESULTS Results of the interviews focused, amongst others, on the level of involvement of PWD and their informal caregivers in the development process, the input provided by PWD and their informal caregivers, the value of early prototyping, continuous iterations of design solutions and in-context testing, the role of dementia care professionals in the multidisciplinary project team, and the appropriateness of open- and closed-ended questions for obtaining input from PWD and their informal caregivers. CONCLUSIONS The description and evaluation of the UCD applied in the development process of the alpha prototype of PLAYTIME resulted in several insights on the relevance of UCD for all involved stakeholders as well as how PWD can be involved in the subsequent phases of usable and meaningful assistive technology development.

scholarly journals The Role of Stressful Childhood Experiences in Shaping Later-Life Memory Loss Among Black and White U.S. Adults

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 296-296
Author(s):  
Caroline Hartnett
Keyword(s):  
Cognitive Decline ◽  
Memory Loss ◽  
Later Life ◽  
Behavioral Risk ◽  
Black Adults ◽  
Childhood Experiences ◽  
White Children ◽  
Black And White ◽  
Stressful Experiences ◽  
White Adults

Abstract Cognitive decline common in the U.S. and greatly impacts quality of life, both for those who experience it and for those who care for them. Black Americans experience higher burdens of cognitive decline but the mechanisms underlying this disparity have not been fully elucidated. Stress experienced in early life is a promising explanatory factor, since stress and cognition are linked, childhood stressors been shown to have a range of negative implications later in life, and Black children experience more childhood stressors than White children, on average. In this paper, we use data from the Behavioral Risk Factor Surveillance System (BRFSS) to examine whether stressful experiences in childhood help explain Black-White disparities in memory loss. These data were available for 5 state-years between 2011 and 2017 (n=11,708). Preliminary results indicate that, while stressful childhood experiences are strongly associated with memory loss, stressful experiences do not mediate the association between race and memory loss. However, race does appear to moderate the association between stressful childhood experiences and memory loss. Specifically, stressful experiences are associated with a higher likelihood of memory loss for Black adults compared to White adults.In addition, there seem to be some noteworthy patterns across different types of experiences (i.e. parental drinking may predict later memory loss more strongly for Black adults than White adults, but parental hitting may predict memory loss more strongly for White adults than Black adults).

scholarly journals Association of Anxiety Awareness with Risk Factors of Cognitive Decline in MCI

2021 ◽  
Vol 11 (2) ◽  
pp. 135
Author(s):  
Ariela Gigi ◽  
Merav Papirovitz
Keyword(s):  
Cognitive Decline ◽  
State Anxiety ◽  
Verbal Learning ◽  
Memory Loss ◽  
Control Group ◽  
General Tendency ◽  
General Anxiety ◽  
Auditory Verbal Learning ◽  
Skin Conductivity ◽  
Learning Test

Studies demonstrate that anxiety is a risk factor for cognitive decline. However, there are also study findings regarding anxiety incidence among people with mild cognitive impairment (MCI), which mostly examined general anxiety evaluated by subjective questionnaires. This study aimed to compare subjective and objective anxiety (using autonomic measures) and anxiety as a general tendency and anxiety as a reaction to memory examination. Participants were 50 adults aged 59–82 years who were divided into two groups: MCI group and control group, according to their objective cognitive performance in the Rey Auditory Verbal Learning Test. Objective changes in the anxiety response were measured by skin conductivity in all tests and questionnaires. To evaluate subjective anxiety as a reaction to memory loss, a questionnaire on “state-anxiety” was used immediately after completing memory tests. Our main finding was that although both healthy and memory-impaired participants exhibited elevations in physiological arousal during the memory test, only healthy participants reported an enhanced state anxiety (p = 0.025). Our results suggest that people with MCI have impaired awareness of their emotional state.

scholarly journals Places Visited, Maintained, or Abandoned Outside Home: A Community Mobility Need of Older Adults With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 673-673
Author(s):  
Isabel Margot-Cattin ◽  
Sophie Gaber ◽  
Nicolas Kuhne ◽  
Camilla Malinowski ◽  
Louise Nygard
Keyword(s):  
Older Adults ◽  
Cognitive Decline ◽  
Health Condition ◽  
Driving Cessation ◽  
Age In Place ◽  
Community Mobility ◽  
People With Dementia ◽  
The Uk ◽  
The Impact

Abstract For older adults to “age in place”, they need to keep engaged and mobile in their communities, whatever their health condition. The impact of age and cognitive decline on community mobility is a growing problem in Europe and worldwide. Engaging in occupations outside home implies being able to get to those places where activities are performed. Yet little is known regarding the types of places visited, maintained or abandoned for older adults with/without dementia. This study addresses community mobility needs through the places people visit, maintain or abandon. People with and without dementia, aged 55+, were interviewed using the Participation in ACTivities and Places OUTside the Home (ACT-OUT) questionnaire across Switzerland (n=70), Sweden (n=69) and the UK (n=128). Results show that people with dementia experience a higher rate of abandonment for more places than regular older adults. Insights about driving cessation and access to travel passes will be presented.

scholarly journals Promoting Conversations About Cognitive Decline Between Older Adults and Primary Care Providers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 157-158
Author(s):  
Benjamin Olivari ◽  
Christopher Taylor ◽  
Nia Reed ◽  
Lisa McGuire
Keyword(s):  
Alzheimer’S Disease ◽  
Primary Care ◽  
Alzheimer's Disease ◽  
Cognitive Impairment ◽  
Cognitive Decline ◽  
Chronic Conditions ◽  
Memory Loss ◽  
Primary Care Providers ◽  
Subjective Cognitive Decline ◽  
Care Providers

Abstract Alzheimer’s disease and related dementias often begin with symptoms of mild memory loss, eventually leading to more severe cognitive impairment, functional impairment, and ultimately, death. Data from the Behavioral Risk Factor Surveillance System core questions related to chronic diseases and from the cognitive decline optional module on subjective cognitive decline (SCD) from the years 2015-2018 were aggregated across the participating 50 states, D.C., and Puerto Rico for this analysis. Among U.S. adults aged 65 years and older, only 39.8% (95%CI=37.6-42.1) of those experiencing SCD reported discussing their SCD symptoms with a healthcare provider. The prevalence of discussing SCD symptoms with a provider was higher among those with at least one chronic condition than among those with no chronic conditions. 30.7% (28.6-32.8) of those aged 65 years and older reported that their SCD led to functional limitations and 28.8% (26.5-31.2) needed assistance with day-to-day activities. For patients aged 65 years and older, Welcome to Medicare visits and Medicare Annual Wellness Visits are critically underutilized primary care access points. Primary care providers can manage chronic conditions, cognitive health, and initiate referrals for testing. Efforts to promote the use of toolkits and diagnostic codes that are available to primary care providers to initiate conversations about memory loss with patients may be utilized to improve detection, diagnosis, and planning for memory problems. Discussions may lead to earlier detection and diagnosis of cognitive impairment, such as Alzheimer’s disease, or other treatable conditions such as delirium or pressure in the brain and avoid costly hospitalizations.

scholarly journals The relationship between polypharmacy and trajectories of cognitive decline in people with dementia: A large representative cohort study

2019 ◽  
Vol 120 ◽  
pp. 62-67 ◽  
Author(s):  
Pinar Soysal ◽  
Gayan Perera ◽  
Ahmet Turan Isik ◽  
Graziano Onder ◽  
Mirko Petrovic ◽  
...  
Keyword(s):  
Cohort Study ◽  
Cognitive Decline ◽  
People With Dementia ◽  
The Relationship ◽  
Representative Cohort ◽  
Large Representative

Ethical Issues in the Care of Newborn Infants

1987 ◽  
Vol 9 (3) ◽  
pp. 89-94
Author(s):  
William B. Weil
Keyword(s):  
Child Abuse ◽  
Ethical Issues ◽  
Newborn Infants ◽  
Best Interests ◽  
The Political ◽  
Prenatal Period ◽  
Newborn Period ◽  
Abuse And Neglect ◽  
Baby Doe ◽  
Derivatives Of

Some of the difficulties of obtaining surrogate decisions that are in the children's best interests, the extension of this problem to the newborn period, and the political and social derivatives of these difficulties have been reviewed. The 1984 child abuse and neglect amendments have been summarized and their impact on the care of newborns has been discussed. The outcomes of this entire process have been described and the potential extension of these issues to the prenatal period has been mentioned. Although not everything that has transpired or will transpire as the result of the Baby Doe issue is salutary, it seems likely that the care of newborn infants has changed and will continue to change, and these changes will ultimately impact on medical care for everyone.

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