Search results for: advanced dementia

Authors: Elzbieta Sikorska-Simmons

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Dementia is a progressive terminal disease. Despite this recognition, research shows that most family caregivers do not know it, and it is unclear how this knowledge affects the quality of patient care. The aim of this qualitative study of 20 family caregivers for patients with advanced dementia is to examine how the caregiver's knowledge about dementia affects the quality of patient care in the context of healthcare decision-making, advanced care planning, and access to adequate support systems. Knowledge about dementia implies family caregivers' understanding of dementia trajectories, common symptoms/complications, and alternative treatment options (e.g., comfort feeding versus tube feeding). Data were collected in semi-structured interviews with 20 family caregivers. The interviews were conducted in person by the author and designed to elicit rich descriptions of family caregivers' experiences with healthcare decision-making and the management of common symptoms/complications of end-stage dementia as patient healthcare proxies. The study findings suggest that caregivers who recognize that dementia is a terminal disease are less likely to opt for life-extending treatments during the advanced stages. They are also more likely to seek palliative/hospice care, and consequently, they are better able to avoid unnecessary hospitalizations or medical procedures. For example, those who know that dementia is a terminal disease tend to opt for "comfort feeding" rather than "tube feeding" in managing the swallowing difficulties that accompany advanced dementia. In the context of advance care planning, family caregivers who know that dementia is a terminal disease tend to have more meaningful advance directives (e.g., Power of Attorney and Do Not Resuscitate orders). They are better prepared to anticipate common problems and pursue treatments that foster the best quality of patient life and care. Greater knowledge about advanced dementia helps them make more informed decisions that focus on enhancing the quality of patient life rather than just survival. In addition, those who know that dementia is a terminal disease are more likely to establish adequate support systems to help them cope with the complex demands of caregiving. For example, they are more likely to seek dementia-oriented primary care programs that offer house visits or respite services. Based on the study findings, knowledge about dementia as a terminal disease is critical in the optimal management of patient care needs and the establishment of adequate support systems. More research is needed to better understand what caregivers need to know to better prepare them for the complex demands of dementia caregiving.

Keywords: dementia education, family caregiver, management of dementia, quality of care

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Authors: J. E. Appel, R. N. Bouwmeester, L. Crombach, K. Georgieva, N. O’Shea, T. I. van Rijssel, L. Wingens

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The Netherlands has a unique and progressive euthanasia law. Even people with advanced neurodegenerative diseases, like dementia, can request euthanasia when an Advanced Euthanasia Directive (AED) was written. Although the law sets some guidelines, in practice many complexities occur. Especially doctors experience difficult situations, as they have to decide whether euthanasia is justified. Research suggests that this leads to an emotional burden for them, due to feelings of isolation, fear of prosecution, as well as pressures from patient, family, or society. Existing literature, however, failed to address problems arising in dementia cases in particular, as well as possible sources of support. In order to investigate these issues, semi-structured in-depth interviews with 20 Dutch general practitioners and elderly care physicians will be conducted. Results are expected to be obtained by the end of December 2017.

Keywords: dementia, euthanasia, general practitioners, elderly care physicians, palliative care

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Authors: Hyunsik Park

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As the rate of cerebrovascular disease increases in old populations, the prevalence rate of vascular dementia would be expected. Therefore, authors designed this study to find out the possibility of somatosensory evoked potentials(SSEP) as a parameter for early diagnosis and prognosis prediction of vascular dementia in cortical vascular dementia patients. 21 patients who met the criteria for vascular dementia according to DSM-IV,ICD-10and NINDS-AIREN with the history of recent cognitive impairment, fluctuation progression, and neurologic deficit. We subdivided these patients into two groups; a mild dementia and a severe dementia groups by MMSE and CDR score; and analysed comparison between normal control group and patient control group who have been cerebrovascular attack(CVA) history without dementia by using N20 latency and amplitude of median nerve. In this study, mild dementia group showed significant differences on latency and amplitude with normal control group(p-value<0.05) except patient control group(p-value>0.05). Severe dementia group showed significant differences both normal control group and patient control group.(p-value<0.05, <001). Since no significant difference has founded between mild dementia group and patient control group, SSEP has limitation to use for early diagnosis test. However, the comparison between severe dementia group and others showed significant results which indicate SSEP can predict the prognosis of vascular dementia in cortical vascular dementia patients.

Keywords: SSEP, cortical vascular dementia, N20 latency, N20 amplitude

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Authors: Jane E. Souyave, Judith Bower

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This study is an ongoing collaborative project between the University of Central Lancashire and the Alzheimer’s Society to design and test the idea of using interactive tools for a person living with dementia and their carers. It is hoped that the tools will fulfill the possible needs of engagement and interaction as dementia progresses, therefore enhancing wellbeing and improving quality of life for the person with dementia and their carers. The project was informed by Kitwood’s five psychological needs for producing wellbeing and explored evidence that fidgeting is often seen as a form of agitation and a negative symptom of dementia. Although therapy for agitation may be well established, there is a lack of appropriate items aimed at people in the later stage of dementia, that are not childlike or medical in their aesthetic. Individuals may fidget in a particular way and the tools in the Fidget Widget Toolkit have been designed to encourage repetitive movements of the hand, specifically to address the abilities of people with relatively advanced dementia. As an intervention, these tools provided a new approach that had not been tested in dementia care. Prototypes were created through an iterative design process and tested with a number of people with dementia and their carers, using quantitative and qualitative methods. Dementia Care Mapping was used to evaluate the impact of the intervention in group settings. Cohen Mansfield’s Agitation Inventory was used to record the daily use and interest of the intervention for people in their usual place of residence. The results informed the design of a new set of devices to promote safe, stigma free fidgeting as a positive experience, meaningful activity and enhance wellbeing for people in the later stage of dementia. The outcomes addressed the needs of individuals by reducing agitation and restlessness through helping them to connect, engage and act independently, providing the means of doing something for themselves that they were able to do. The next stage will be to explore the commercial feasibility of the Fidget Widget Toolkit so that it can be introduced as good practice and innovation in dementia care. It could be used by care homes, with carers and their families to support wellbeing and lead the way in providing some positive experiences and person-centred approaches that are lacking in the later stage of dementia.

Keywords: dementia, design, fidgeting, healthcare, positive moments, quality of life, wellbeing

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Authors: Elzbieta Sikorska-Simmons

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Advanced dementia is a progressive terminal brain disease that is accompanied by a syndrome of difficult to manage symptoms and complications that eventually lead to death. The management of advanced dementia poses major challenges to family caregivers who act as patient health care proxies in making medical treatment decisions. Little is known, however, about how they manage advanced dementia and how their treatment choices influence the quality of patient life. This prospective qualitative study examines the key medical treatment decisions that family caregivers make while managing advanced dementia. The term ‘family caregiver’ refers to a relative or a friend who is primarily responsible for managing patient’s medical care needs and legally authorized to give informed consent for medical treatments. Medical decision-making implies a process of choosing between treatment options in response to patient’s medical care needs (e.g., worsening comorbid conditions, pain, infections, acute medical events). Family caregivers engage in this process when they actively seek treatments or follow recommendations by healthcare professionals. Better understanding of medical decision-making from the family caregiver perspective is needed to design interventions that maximize the quality of patient life and limit inappropriate treatments. Data were collected in three waves of semi-structured interviews with 20 family caregivers for patients with advanced dementia. A purposive sample of 20 family caregivers was recruited from a senior care center in Central Florida. The qualitative personal interviews were conducted by the author in 4-5 months intervals. The ethical approval for the study was obtained prior to the data collection. Advanced dementia was operationalized as stage five or higher on the Global Deterioration Scale (GDS) (i.e., starting with the GDS score of five, patients are no longer able survive without assistance due to major cognitive and functional impairments). Information about patients’ GDS scores was obtained from the Center’s Medical Director, who had an in-depth knowledge of each patient’s health and medical treatment history. All interviews were audiotaped and transcribed verbatim. The qualitative data analysis was conducted to answer the following research questions: 1) what treatment decisions do family caregivers make while managing the symptoms of advanced dementia and 2) how do these treatment decisions influence the quality of patient life? To validate the results, the author asked each participating family caregiver if the summarized findings accurately captured his/her experiences. The identified medical decisions ranged from seeking specialist medical care to end-of-life care. The most common decisions were related to arranging medical appointments, medication management, seeking treatments for pain and other symptoms, nursing home placement, and accessing community-based healthcare services. The most challenging and consequential decisions were related to the management of acute complications, hospitalizations, and discontinuation of treatments. Decisions that had the greatest impact on the quality of patient life and survival were triggered by traumatic falls, worsening psychiatric symptoms, and aspiration pneumonia. The study findings have important implications for geriatric nurses in the context of patient/caregiver-centered dementia care. Innovative nursing approaches are needed to support family caregivers to effectively manage medical care needs of patients with advanced dementia.

Keywords: advanced dementia, family caregiver, medical decision-making, symptom management

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Authors: Jun Hong Lee

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Background: Many dementia patients complain insomnia and depressive mood, and hypnotics and antidepressants are being prescribed. As prevalence of dementia is increasing, insomnia and depressive mood are becoming more important. Objective: We evaluated insomnia and depression in outpatients of dementia center. Patients and Methods/Material and Methods: We reviewed medical records of the patients who visited outpatients clinic of NHIS Ilsan Hospital Dementia Center during 2016. Results: Total 716 patients are included; Subjective Memory Impairment (SMI) : 143 patients (20%), non-amnestic Mild Cognitive Impairment (MCI): single domain 70 (10%), multiple domain 34 (5%), amnestic MCI: single domain 74 (10%), multiple domain 159 (22%), Early onset Alzheimer´s disease (AD): 9 (1%), AD 121 (17%), Vascular dementia: 62 (9%), Mixed dementia 44 (6%). Hypnotics and antidepressants are prescribed as follows; SMI : hypnotics 14 patients (10%), antidepressants 27 (19%), non-amnestic MCI: single domain hypnotics 9 (13%), antidepressants 12 (17%), multiple domain hypnotics 4 (12%), antidepressants 6 (18%), amnestic MCI: single domain hypnotics 10 (14%), antidepressants 16 (22%), multiple domain hypnotics 22 (14%), antidepressants 24 (15%), Early onset Alzheimer´s disease (AD): hypnotics 1 (11%), antidepressants 2 (22%), AD: hypnotics 10 (8%), antidepressants 36 (30%), Vascular dementia: hypnotics 8 (13%), antidepressants 20 (32%), Mixed dementia: hypnotics 4 (9%), antidepressants 17 (39%). Conclusion: Among the outpatients of Dementia Center, MCI and SMI are majorities, and the number of MCI patients are almost half. Depression is more prevalent in AD, and Vascular dementia than MCI and SMI, and about 22% of patients are being prescribed by antidepressants and 11% by hypnotics.

Keywords: insomnia, depression, dementia, antidepressants, hypnotics

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Authors: Salaam Mujeeb, Adeola Segun, Abdullahi Olasunkanmi

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Dementia is becoming a major concern as the world population is increasing and elderly populations are being neglected. Liver and kidney Diseases have been implicated as risk factors in the etiology of Dementia. This study, therefore, evaluates the plasma Gamma Glutamyl Transferase (GGT) activity and plasma Electrolytes in other to find an association between the biomarkers and Dementia. The subjects (38) were age and sex-matched with their corresponding controls and structured questionnaires were used to obtain medical information. Using spectrophotometric and ion selective Electrode techniques respectively, we found and elevated GGT activity in the Dementia Subjects. Remarkably, no association was found between the plasma Electrolytes level and Dementia subjects. It was also observed that severity of Dementia worsens with age. Moreover, the condition of the dementia subjects worsens with reducing weight. Furthermore, the presence of Comorbidity e.g. Hypertension, Obesity, Diabetes and Habits like Smoking, Drugs and Alcohol consumption interferes with Electrolyte balance. Weight loss monitoring and IBM check are advised in Elderly individuals particularly females as they may be inductive of early or future cognitive impairments. Therefore, it might be useful as an early detection tool. Government and society should invest more on the Geriatric population by establishing Old people's home and providing social care services.

Keywords: clinical characteristics, dementia, electrolytes, gamma glutamyl transpeptidase, GGT

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Authors: Annika Kjallman Alm, Ove Hellzen, Malin Rising-Homlstrom

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The concept of dementia‐friendly communities focuses on the lived experience of people who have dementia and is most relevant to addressing their needs and the needs of those people who live with and provide support for them. The goal of communities becoming dementia‐friendly is for dementia to be normalized and recognized as a disabling condition. People with dementia find being connected to self, to others, and to the environment by meaningful activities as important. According to the concept underlying dementia-friendly communities, people with dementia or cognitive decline can continue to live in the community if their residential community has sufficiently strong social capital. The aim of this study is to explore staff and leaders’ experiences in implementing interventions to enhance a more inclusive dementia-friendly community. A municipality in northern Sweden with a population of approx. 100 000 inhabitants decided to create a dementia friendly municipality. As part of the initiative, a Centre for support was established. The Centre offered support for both individuals and groups, did home visits, and provided information about Dementia. Interviews were conducted with staff who had undergone training in a structured form of multidimensional support, the PER-model®, and worked at the Centre for support. The staff consisted of registered nurses, occupational therapists, and specialized nurses who had worked there for more than five years, and all had training in dementia. All interviews were audio-recorded and transcribed verbatim. The transcribed data were analyzed using qualitative content analysis. Results suggest that implementing the PER-model® of support for persons in the early stages of dementia and their next of kin added a much-needed form of support and perceived possibilities to enhance daily life in the early stages of dementia. The staff appreciated that the structure of PER-model® was evidenced based. They also realized that they never even considered that the person with dementia also needed support in the early stages but that they now had tools for that as well. Creating a dementia friendly municipality offering different kinds of support for all stages of dementia is a challenge. However, evidence-based tools and a broad spectrum of different types of support, whether individual or group, are needed to tailor to everyone’s needs. A conviction that all citizens are equal and should all be involved in the community is a strong motivator.

Keywords: dementia, dementia-friendly, municipality, support

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Authors: Myonghwa Park, Eun Jeong Choi

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Persons with dementia living at home have complex caregiving demands, which can be significant sources of stress for the family caregivers. Thus, the dementia family support program facilitators struggle to provide various health and social services, facing diverse challenges. The purpose of this study was to research the effects of training program for the dementia family support program facilitators on self-efficacy, competence, and target complaints concerning operating their program. We created a training program with systematic contents, which was composed of 10 sessions and we provided the program for the facilitators. The participants were 32 people at 28 community dementia support centers who manage dementia family support programs and they completed quantitative and qualitative self-report questionnaire before and after participating in the training program. For analyzing the data, descriptive statistics were used and with a paired t-test, pretest and posttest scores of self-efficacy, competence, and target complaints were analyzed. We used Statistical Package for the Social Sciences (SPSS) statistics (Version 21) to analyze the data. The average age of the participants was 39.6 years old and the 84.4% of participants were nurses. There were statistically meaningful increases in facilitators’ self-efficacy scores (t = -4.45, p < .001) and competence scores (t = -2.133, p = 0.041) after participating in training program and operating their own dementia family support program. Also, the facilitators’ difficulties in conducting their dementia family support program were decreased which was assessed with target complaints. Especially, the facilitators’ lack of dementia expertise and experience was decreased statistically significantly (t = 3.520, p = 0.002). Findings provided evidence of the benefits of the training program for facilitators to enhance managing dementia family support program by improving the facilitators’ self-efficacy and competence and decreasing their difficulties regarding operating their program.

Keywords: competence, dementia, facilitator, family, self-efficacy, training

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Authors: Eashwari Dahoe, Jody Scheuer, Harm-Jan Vink

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Alzheimer's disease is a progressive brain condition and is the most common form of dementia. Dementia is a global concern. It is an increasing crisis due to the worldwide aging population. The disease alters the body in different stages leading to several issues. The most common issues result in memory loss, responsive decline, and social decline. During the various stages, the dementia patient must be supported more in performing daily tasks. Eventually, the patient will have to be cared for entirely. There are many efforts in various domains to support this brain condition. This study focuses on the connection between three generations of solutions in the domain of technology and the struggles they tackle. To gather information regarding the struggles seniors with dementia face data has been acknowledged through reading scientific articles. The struggles are extracted from these articles and classified into various category struggles. To gather information regarding the three generations of technology data has been acknowledged through reading scientific articles regarding the generations. After understanding the difference between the three generations, international technological solutions from the past 20 years are connected to the generation they fit. This info is mainly collected through research on companies that aim to improve the lives of senior citizens with early stages of dementia. Eventually, the technological solutions (divided by generations) are linked to the struggles they tackle. By connecting the struggles and the solutions , it is hoped that this paper contributes to an informative overview of the currently available technological solutions and the struggles they tackle.

Keywords: Alzheimer’s disease, technological solutions to support dementia, struggles of seniors with dementia, struggles of dementia

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Authors: Emily J. Winnall

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It is understood that China has the largest population of people living with dementia in the world; however, little is known about this culturally diverse community, specifically the Chinese Communities, which has been poorly represented in past British research Literature. Further research is needed to gain a greater understanding of the support needs of caregivers caring for a relative living with dementia from the Chinese background. Dementia care and caregivers in Chinese communities are less investigated. The study is a case study of two Chinese community centers and one housing support service. Semi-structured one-to-one interviews and a pilot questionnaire were used as the methods for the study. A toolkit will also be created as a document that provides guidance and signposting to health and social care services for Chinese communities. The findings identified three main themes. Caregivers do not receive any formal support from the UK health and social services, and they felt they would have benefited from getting advice on what support they could access. Furthermore, the data also identified that Chinese organisations do not have the knowledge of dementia, to be able to support those living with dementia and their families. Also, people living with dementia and their families rarely present to Chinese organisations and UK health and social care services, meaning they are not receiving the support they are entitled to or need. Additionally, the community center would like to see workshops/courses around dementia for people from Chinese backgrounds. The study concludes that people from Chinese cultural backgrounds do not have sufficient access to support from UK health and social care services. More information needs to be published that will benefit Chinese communities.

Keywords: Chinese, Chinese organisations, Dementia, family caregivers, social care

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Authors: Michael Joseph Passmore

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Euthanasia, or assisted suicide (EAS), refers to the provision of medical assistance to individuals seeking to end their own lives. In Canada, the issue of EAS has been the subject of debate and legislative action for many years. In 2016, the Canadian government passed the Medical Assistance in Dying (MAID) Act. This legalized EAS in Canada is subject to certain eligibility criteria. In 2023, debate in Canada continues regarding the scope of MAID practice and associated legislation. Dementia is an illness that causes suffering at the end of life. Persons suffering due to dementia deserve timely and effective palliative care.

Keywords: palliative care, neurocognitive disorder, dementia, Alzheimer’s disease, euthanasia, assisted suicide, medical ethics, bioethics

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Authors: Huafeng Wei

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Dementia in Alzheimer’s Disease (AD) is the number one cause of dementia internationally, without effective treatments. Increasing evidence suggest that disruption of intracellular calcium homeostasis, primarily pathological elevation of cytosol and mitochondria but reduction of endoplasmic reticulum (ER) calcium concentrations, play critical upstream roles on multiple pathologies and associated neurodegeneration, impaired neurogenesis, synapse, and cognitive dysfunction in various AD preclinical studies. The last federal drug agency (FDA) approved drug for AD dementia treatment, memantine, exert its therapeutic effects by ameliorating N-methyl-D-aspartate (NMDA) glutamate receptor overactivation and subsequent calcium dysregulation. More research works are needed to develop other drugs targeting calcium dysregulation at multiple pharmacological acting sites for future effective AD dementia treatment. Particularly, calcium channel blockers for the treatment of hypertension and dantrolene for the treatment of muscle spasm and malignant hyperthermia can be repurposed for this purpose. In our own research work, intranasal administration of dantrolene significantly increased its brain concentrations and durations, rendering it a more effective therapeutic drug with less side effects for chronic AD dementia treatment. This review summarizesthe progress of various studies repurposing drugs targeting calcium dysregulation for future effective AD dementia treatment as potentially disease-modifying drugs.

Keywords: alzheimer, calcium, cognitive dysfunction, dementia, neurodegeneration, neurogenesis

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Authors: Helga Martins, Idália Matias

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Background: Dementia is an important research topic since that life expectancy worldwide is increasing, so people are getting older. The aging of populations has a major impact on the increase in dementia, and nurses play a major role in taking care of these patients. Therefore, the implementation of nursing interventions based on evidence is vital so that we are aware of what we can do in clinical practice in order to provide patient cantered care to patients with dementia. Aim: To identify the nurse´s interventions in patients with dementia during clinical practice. Method: Literature review grounded on an electronic search in the EBSCOhost platform (CINAHL Plus with Full Text, MEDLINE with Full Text, and Nursing & Allied Health Collection), using the search terms of "dementia" AND "nurs*" AND “interventions” in the abstracts. The inclusion criteria were: original papers published up to June 2021. A total of 153 results after de duplicate removal we kept 104. After the application of the inclusion criteria, we included 15 studies This literature review was performed by two independent researchers. Results: A total of 15 results about nurses’ interventions in patients with dementia were included in the study. The major interventions are therapeutic communication strategies, environmental management of stressors involving family/caregivers; strategies to promote patient safety, and assistance in activities of daily living in patients who are clinically deteriorated. Conclusion: Taking care of people with dementia is a complex and demanding task. Nurses are required to have a set of skills and competences in order to provide nursing interventions. We highlight that is necessary an awareness in nursing education regarding providing nursing care to patients with dementia.

Keywords: dementia, interventions, nursing, review

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Authors: A. Zurraini, Syed Alwi Sar, H. Helmy, H. Nazeefah

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Early Dementia Questionnaire (EDQ) was developed as a screening tool to detect patients with early dementia in primary care. It was developed based on 20 symptoms of dementia. From a preliminary study, EDQ had been shown to be a promising alternative for screening of early dementia. This study was done to further test on EDQ’s reliability and validity. Using a systematic random sampling, 200 elderly patients attending primary health care centers in Kuching, Sarawak had consented to participate in the study and were administered the EDQ. Geriatric Depression Scale (GDS) was used to exclude patients with depression. Those who scored >21 MMSE, were retested using the EDQ. Reliability was determined by Cronbach’s alpha for internal consistency and construct validity was assessed using confirmatory factor analysis (principle component with varimax rotation). The result showed that the overall Cronbach’s alpha coefficient was good which was 0.874. Confirmatory factor analysis on 4 factors indicated that the Cronbach’s alpha for each domain were acceptable with memory (0.741), concentration (0.764), emotional and physical symptoms (0.754) and lastly sleep and environment (0.720). Pearson correlation coefficient between the first EDQ score and the retest EDQ score among those with MMSE of >21 showed a very strong, positive correlation between the two variables, r = 0.992, N=160, P <0.001. The results of the validation study showed that Early Dementia Questionnaire (EDQ) is a valid and reliable tool to be used as a screening tool to detect early dementia in primary care.

Keywords: Early Dementia Questionnaire (EDQ), screening, primary care, construct validity

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Authors: Jeoffrey Oostrom, Robbert James Schlingmann, Hani Alers

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This document depicts the research into the indicators of dementia progression, the automation of quality of life assignments, and the visualization of it. To do this, the Smart Teddy project was initiated to make a smart companion that both monitors the senior citizen as well as processing the captured data into an insightful dashboard. With around 50 million diagnoses worldwide, dementia proves again and again to be a bothersome strain on the lives of many individuals, their relatives, and society as a whole. In 2015 it was estimated that dementia care cost 818 billion U.S Dollars globally. The Smart Teddy project aims to take away a portion of the burden from caregivers by automating the collection of certain data, like movement, geolocation, and sound-levels. This paper proves that the Smart Teddy has the potential to become a useful tool for caregivers but won’t pose as a solution. The Smart Teddy still faces some problems in terms of emotional privacy, but its non-intrusive nature, as well as diversity in usability, can make up for it.

Keywords: dementia care, medical data visualization, quality of life, smart companion

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Authors: Kenny Chi Man Chui

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Background: In Chinese culture, the traditional equivalent term for English dementia is chi dai zheng, which, whether translated as ‘insanity’ or ‘idiocy’ carries a sharply negative connotation. In fact, even though the traditional name for dementia has evolved, from chi dai zheng to shi zhi zheng, nao tui hua zheng or ren zhi zhang ai zheng, educating the population about more respectful terms for the condition and promoting a positive understanding about people with dementia in society have proven to be time-intensive endeavors. By extension, the use of such terms promotes the perception that people with dementia undergo a ‘total loss of self’ or experience a ‘living death’ or ‘social death’. Both in Asia and elsewhere, the appropriate nomenclature for dementia remains controversial, and different medical and healthcare professionals in Hong Kong have taken various stances on how to refer to the condition there. Indeed, how this negative perception affects the interaction between people with dementia and the surrounding others? Methodology: Qualitative research with the concept of postmodernism, interpretivism, and Foucauldian theory was adopted as frameworks in applying participatory observations, in-depth interviews, and other qualitative methods. First, ten people with dementia—one man and nine women—living in two residential care homes in Hong Kong were interviewed, as were ten members of the care staff, all of whom were women. Next, to coach the staff in understanding the feelings and self-perceptions of people with dementia, two reflective training sessions were provided. Afterward, to assess the impact of the training sessions on the staff, two focus groups were held. Findings: The findings revealed that residents with dementia did not perceive themselves as being ‘demented’ and were confused by not getting responses from the others. From the understanding of care staff, they perceived the residents as being ‘demented’, desolate troublemakers. They described people with dementia as ‘naughty children’ who should be controlled and be punished while treated them as ‘psychiatric patients’ who could be ignored and be mute. “Psychosocial restraint” happened regarding the discrepancy of perception between people with dementia and the care staff. People with dementia did not think that their confusion of memory was related to dementia or, frankly speaking, they did not know what dementia was. When others treated them as ‘demented patients, the residents with mild to moderate dementia fiercely rejected that designation and reported a host of negative feelings, hence the fluctuations of mood and emotion noted by the care staff. Conclusion: As the findings revealed, the people with dementia were also discontent with the care arrangements in the care homes, felt abandoned by others and worried about bothering others. Their shifting emotional states and moods were treated as the Behavioral and Psychological symptoms of Dementia (BPSD), which nothing can do reported by the care staff in the residential care homes. People with dementia become social withdrawal or isolated in daily living, which should be alert and be changed by the social work professionals about the occurrence of “psychosocial restraint” in dementia care.

Keywords: psychosocial restraint, qualitative research, social work with dementitude, voice of people with dementia

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Authors: Jonathan Turner, Julie Doyle, Laura O’Philbin, Dympna O’Sullivan

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People living with dementia should be at the centre of decision-making regarding goals for daily living. These goals include basic activities (dressing, hygiene, and mobility), advanced activities (finances, transportation, and shopping), and meaningful activities that promote well-being (pastimes and intellectual pursuits). However, there is limited involvement of people living with dementia in the design of technology to support their goals. A project is described that is co-designing intelligent computer-based support for, and with, people affected by dementia and their carers. The technology will support self-management, empower participation in shared decision-making with carers and help people living with dementia remain healthy and independent in their homes for longer. It includes information from the patient’s care plan, which documents medications, contacts, and the patient's wishes on end-of-life care. Importantly for this work, the plan can outline activities that should be maintained or worked towards, such as exercise or social contact. The authors discuss how to integrate care goal information from such a care plan with data collected from passive sensors in the patient’s home in order to deliver individualized planning and interventions for persons with dementia. A number of scientific challenges are addressed: First, to co-design with dementia patients and their carers computerized support for shared decision-making about their care while allowing the patient to share the care plan. Second, to develop a new and open monitoring framework with which to configure sensor technologies to collect data about whether goals and actions specified for a person in their care plan are being achieved. This is developed top-down by associating care quality types and metrics elicited from the co-design activities with types of data that can be collected within the home, from passive and active sensors, and from the patient’s feedback collected through a simple co-designed interface. These activities and data will be mapped to appropriate sensors and technological infrastructure with which to collect the data. Third, the application of machine learning models to analyze data collected via the sensing devices in order to investigate whether and to what extent activities outlined via the care plan are being achieved. The models will capture longitudinal data to track disease progression over time; as the disease progresses and captured data show that activities outlined in the care plan are not being achieved, the care plan may recommend alternative activities. Disease progression may also require care changes, and a data-driven approach can capture changes in a condition more quickly and allow care plans to evolve and be updated.

Keywords: care goals, decision-making, dementia, self-care, sensors

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Authors: James Boag

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The needs of people with a diagnosis of dementia and their carers and families are physical, psychosocial, and psychological and begin at the time of diagnosis. There is frequently a lack of emotional support and counselling. Care- giving support is required from the presentation of the first symptoms of dementia until death. Alzheimer's disease begins decades before the clinical symptoms begin to appear, and in many cases, it remains undiagnosed, or diagnosed too late for any possible interventions to have any effect. However, if an incorrect diagnosis is given, it may result in a person being treated, without effect, for a type of dementia they do not have and delaying the interventions they should have received. Being diagnosed with dementia can cause emotional distress to the person, and physical and emotional support is needed, which will become more important as the disease progresses. The severity of the patient's dementia and their symptoms has a bearing of the impact on the carer and the support needed. A lack of insight and /or a denial of the diagnosis, grief, reacting to anticipated future losses, and coping methods to maximise the disease outcome, are things that should be addressed. Because of the stigma, it is important for carers not to lose contact with family and others because social isolation leads to depression and burnout. The impact on a carer's well- being and quality of life can be influenced by the severity of the illness, its type of dementia, its symptoms, healthcare support, financial and social status, career, age, health, residential setting, and relationship to the patient. Carer burnout due to lack of support leads to people diagnosed with dementia being put into residential care prematurely. Often dementia is not recognised as a terminal illness, limiting the ability of the person diagnosed with dementia and their carers to work on advance care planning and getting access to palliative and other support. Many carers have been satisfied with the physical support they were given in their everyday life, however, it was agreed that there was an immense unmet need for psychosocial support, especially after diagnosis and approaching end of life. Providing continuity and coordination of care is important. Training is necessary for providers to understand that every case is different, and they should understand the complexities. Grief, the emotional response to loss, is suffered during the progression of the disease and long afterwards, and carers should continue to be supported after the death of the person they were caring for.

Keywords: dementia, caring, challenges, needs

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Authors: Hanneke J. A. Smaling, Mandy Visser

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One way to reduce the risk of COVID-19 infection is by preventing close interpersonal contact with distancing measures. These social distancing measures presented challenges to the health and wellbeing of people with dementia and their informal and professional caregivers. This study describes the concerns and recommendations of informal and professional caregivers for COVID-19 policy for home care and long-term care for people with dementia during the first and second COVID-19 wave in the Netherlands. In this qualitative interview study, 20 informal caregivers and 20 professional caregivers from home care services and long-term care participated. Interviews were analyzed using an inductive thematic analysis approach. Both informal and professional caregivers worried about getting infected or infecting others with COVID-19, the consequences of the distancing measures, and quality of care. There was a general agreement that policy in the second wave was better informed compared to the first wave. At an organizational level, the policy was remarkably flexible. Recommendations were given for dementia care (need to offer meaningful activities, improve the organization of care, more support for informal caregivers), policy (national vs. locally organization, social isolation measures, visitor policy), and communication. Our study contributes to the foundation of future care decisions by (inter)national policymakers, politicians, and healthcare organizations during the course of the COVID-19 pandemic, underlining the need for balance between safety and autonomy for people with dementia.

Keywords: covid-19, dementia, home care, long-term care, policy

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Authors: Felicia N. Obialo, Aliza Wingo, Thomas Wingo

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Psychosocial factors such as personality traits and social networks influence cognitive aging and dementia outcomes both positively and negatively. The inherent complexity of these factors makes defining the underlying mechanisms of their influence difficult; however, exploring their interactions affords promise in the field of cognitive aging. The objective of this study was to elucidate some of these interactions by determining the relationship between social network size and dementia outcomes and by determining whether personality traits mediate this relationship. The longitudinal Alzheimer’s Disease (AD) database provided by Rush University’s Religious Orders Study/Memory and Aging Project was utilized to perform retrospective regression and mediation analyses on 3,591 participants. Participants who were cognitively impaired at baseline were excluded, and analyses were adjusted for age, sex, common chronic diseases, and vascular risk factors. Dementia outcome measures included cognitive trajectory, clinical dementia diagnosis, and postmortem beta-amyloid plaque (AB), and neurofibrillary tangle (NT) accumulation. Personality traits included agreeableness (A), conscientiousness (C), extraversion (E), neuroticism (N), and openness (O). The results show a positive correlation between social network size and cognitive trajectory (p-value = 0.004) and a negative relationship between social network size and odds of dementia diagnosis (p = 0.024/ Odds Ratio (OR) = 0.974). Only neuroticism mediates the positive relationship between social network size and cognitive trajectory (p < 2e-16). Agreeableness, extraversion, and neuroticism all mediate the negative relationship between social network size and dementia diagnosis (p=0.098, p=0.054, and p < 2e-16, respectively). All personality traits are independently associated with dementia diagnosis (A: p = 0.016/ OR = 0.959; C: p = 0.000007/ OR = 0.945; E: p = 0.028/ OR = 0.961; N: p = 0.000019/ OR = 1.036; O: p = 0.027/ OR = 0.972). Only conscientiousness and neuroticism are associated with postmortem AD pathologies; specifically, conscientiousness is negatively associated (AB: p = 0.001, NT: p = 0.025) and neuroticism is positively associated with pathologies (AB: p = 0.002, NT: p = 0.002). These results support the study’s objectives, demonstrating that social network size and personality traits are strongly associated with dementia outcomes, particularly the odds of receiving a clinical diagnosis of dementia. Personality traits interact significantly and beneficially with social network size to influence the cognitive trajectory and future dementia diagnosis. These results reinforce previous literature linking social network size to dementia risk and provide novel insight into the differential roles of individual personality traits in cognitive protection.

Keywords: Alzheimer’s disease, cognitive trajectory, personality traits, social network size

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Authors: João Filipe Papel, Tatsuji Munaka

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With society's aging and the number of elderly with dementia rising, researchers have been actively studying how to support the elderly in the early stages of dementia with the objective of allowing them to have a better life quality and as much as possible independence. To make this possible, most researchers in this field are using the Internet Of Things to monitor the elderly activities and assist them in performing them. The most common sensor used to monitor the elderly activities is the Camera sensor due to its easy installation and configuration. The other commonly used sensor is the sound sensor. However, we need to consider privacy when using these sensors. This research aims to develop a system capable of predicting the early stages of dementia based on monitoring and controlling the elderly activities of daily living. To make this system possible, some issues need to be addressed. First, the issue related to elderly privacy when trying to detect their Activities of Daily Living. Privacy when performing detection and monitoring Activities of Daily Living it's a serious concern. One of the purposes of this research is to achieve this detection and monitoring without putting the privacy of the elderly at risk. To make this possible, the study focuses on using an approach based on using Magnet Sensors to collect binary data. The second is to use the data collected by monitoring Activities of Daily Living to predict the early stages of Dementia. To make this possible, the research team suggests developing a proprietary ontology combined with both data-driven and knowledge-driven.

Keywords: dementia, activity recognition, magnet sensors, ontology, data driven and knowledge driven, IoT, activities of daily living

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Authors: Akankunda Veronicah Karuhanga

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Dementia is an age mental disorder that makes victims lose normal functionality that needs delicate attention. It has been technically defined as a clinical syndrome that presents a number of difficulties in speech and other cognitive functions that change someone’s behaviors and can also cause impairments in activities of daily living, not forgetting a range of neurological disorders that bring memory loss and cognitive impairment. Family members are the primary healthcare givers and therefore, the way how they handle the situation in its early stages determines future deterioration syndromes like total memory loss. Unfortunately, most family members are ignorant about this condition and in most cases, the patients are brought to our facilities when their condition was already mismanaged by family members and we thus cannot do much. For example, incontinence can be managed at early stages through potty training or toilet scheduling before resorting to 24/7 diapers which are also not good. Professional Elderly care should be understood and practiced as an extension of homes, not a dumping place for people considered “abnormal” on account of ignorance. Immediate relatives should therefore be sensitized concerning the normalcy of dementia in the context of old age so that they can be understanding and supportive of dementia patients rather than discriminating against them as present-day lepers. There is a need to skill home-based caregivers on how to handle dementia in its early stages. Unless this is done, many of our elderly homes shall be filled with patients who should have been treated and supported from their homes. This skilling of home-based caregivers is a vital intervention because until elderly care is appreciated as a human moral obligation, many transactional rehabilitation centers will crop up and this shall be one of the worst moral decadences of our times.

Keywords: dementia, family, Alzheimers, relevancy

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Authors: Annika Kjallman Alm, Ove Hellzen, Malin Rising-Holmstrom

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Worldwide, the number of people who are living with dementia is increasing because of an aging population, which leads to increased financial and social costs, including reduced quality of life for people with dementia and their care partners. Most people who have dementia reside in the community. Aging in place could be described as having the health and social supports and services you need to live safely and independently in your home or your society for as long as you wish and are able. People with dementia are not different than people without dementia where they want to remain at home, if possible, with a sense of familiarity and engagement in typical everyday activities. So how do persons with dementia or cognitive decline see their possibilities to be socially involved and experience support? The aim of this study was to explore persons with cognitive decline's sense of involvement and support living in the ordinary dwelling. The study was approved by the Ethical Review Authority in Sweden prior to the interviews. Interviews were conducted with 20 persons living at home, either alone or in a relationship. The persons had perceived cognitive decline; some were under investigation or already had a diagnose of early dementia. Thematic analysis was used to identify, analyze, and report patterns within the data. Researchers extracted three main themes through participants’ interviews: a) Importance of social involvement with family and friends. b) Hindrances for social involvement. c) Struggling mentally with a new life situation. Results found that going to activity centers, staying involved, and meeting friends and family enhanced the sense of involvement and support. There were also hindrances to a sense of involvement and support as they struggled with the diagnose and the changes in daily life, such as physical problems, mental problems, or economic issues. The mental struggle of accepting the cognitive decline and the changes in daily life it brought was also an issue for some of the participants. A multidimensional support should be provided by the community to enable persons with cognitive decline to stay involved in family and community in the comfort of their own homes.

Keywords: aging in place, cognitive decline, dementia, sense of involvement

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Authors: Ya-Chuan Hsu, Wen-Chen Ouyang, Wei-Siang Huang

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Problem/Background: With constantly increasing aged populations, quality of life (QOL) in persons with dementia has become a significant research concern. The Alzheimer’s Related Quality of Life (ADRQL) is a high-validated, theory-derived, and multidimensional instrument. It has widely utilized in many countries, except in Taiwan. However, diverse results of quality of life from different countries by using the same measurement can provide the potential to help understand the impact of cultural contributor on QOL. Objective: To investigate the extent to which quality of life on older adults with dementia in Taiwan. Methods: Cross-sectional, descriptive study conducted in an assisting living facility affiliated with a daycare center in southern Taiwan. A purposeful sample of 34 participants was recruited. Inclusion criteria included those who were at least 65 years old, able to communicate, and diagnosed with mild to moderate dementia. The QOL was measured by Chinese version ADRQL. This observational instrument consists of 30 items that is divided into five subscales with the full range of each subscale scores from 0 to 100.0. Higher scores indicate better QOL. Results: The means for subscale of the Social Interaction, Awareness of Self, Feelings and Mood, Enjoyment of Activities, and Response to Surroundings were 87.9, 74.7, 91.3, 64.5, and 90.3, respectively. The overall mean for the ADQOL was 0.83. Conclusion: Findings suggest that the level of Enjoyment of Activities is the lowest and may convey information about a need of evaluation on arrangement of facility’s activities.

Keywords: dementia, quality of life, elders, Alzheimer’s related quality of life

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Authors: Roshanim Koris, Norashidah Mohamed Nor, Sharifah Azizah Haron, Normaz Wana Ismail, Syed Mohamed Aljunid Syed Junid, Amrizal Muhammad Nur, Asrul Akmal Shafie, Suraya Yusuff, Namaitijiang Maimaiti

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An ageing population has huge implications for virtually every aspect of Malaysian societies. The elderly consume a greater volume of healthcare facilities not because they are older, but because of they are sick. The chronic comorbidities and deterioration of cognitive ability would lead the elderly’s health to become worst. This study aims to provide a comprehensive estimate of the direct and indirect costs of health care used in a nationally representative sample of community-dwelling elderly with dementia and as well as the determinants of healthcare cost. A survey using multi-stage random sampling techniques recruited a final sample of 2274 elderly people (60 years and above) in the state of Johor, Perak, Selangor and Kelantan. Mini Mental State Examination (MMSE) score was used to measure the cognitive capability among the elderly. Only the elderly with a score less than 19 marks were selected for further analysis and were classified as dementia. By using a two-part model findings also indicate household income and education level are variables that strongly significantly influence the healthcare cost among elderly with dementia. A number of visits and admission are also significantly affect healthcare expenditure. The comorbidity that highly influences healthcare cost is cancer and seeking the treatment in private facilities is also significantly affected the healthcare cost among the demented elderly. The level of dementia severity is not significant in determining the cost. This study is expected to attract the government's attention and act as a wake-up call for them to be more concerned about the elderly who are at high risk of having chronic comorbidities and cognitive problems by providing more appropriate health and social care facilities. The comorbidities are one of the factor that could cause dementia among elderly. It is hoped that this study will promote the issues of dementia as a priority in public health and social care in Malaysia.

Keywords: ageing population, dementia, elderly, healthcare cost, healthcare utiliztion

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Authors: Berit Johannessen

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Introduction: Depression and dementia are the two most common psychiatric disorders of older people. The use of antidepressants does not always have the desired effect and serious side effects are common. Aroma therapists claim that the essential oil of Bergamot has an antidepressant effect. Aromatherapy is defined as holistic or complementary medicine and is rarely used in the Norwegian public health service, but in recent years, there has been an increasing interest in, and use of complementary and alternative therapies (CAM) in the Norwegian population, and aromatherapy is one of the most widely used. Focus for this study: How do nurses experience the use of Bergamot essential oil for patients suffering from dementia and depression? Method: Action research study including 12 patients and 8 nurses. The patients were strategically selected by the nurses and were given Bergamot in a fan diffuser every day for 12 weeks. The patients' mood and behavior patterns were reported daily and the nurse`s experiences were reported weekly. Individual interviews with the nurses were conducted at the end of the project. Results: The nurses reported that bergamot had positive impact on patients mood and wellbeing, and was considered as an effective method for six patients, four had uncertain effect and two had no effect. They also reported less use of medication and that the fan diffusers were easy and pleasant to administer. They found the use of natural remedies as Bergamot inspiring and wanted to learn more about aromatherapy and its use in nursing. Some were disturbed by the smell and some had to deal with critical and negative colleagues. Conclusion: Nurses experienced aromatherapy using bergamot oil in fan diffusers as a simple and useful procedure for patients suffering from dementia and depression. The effects were varying. Further research is needed.

Keywords: aromatherapy, bergamot, dementia, depression

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Authors: Eman Al-khateeba, Ebaa Al-Zayadneha, Osama Al-Dalahmahb, Zeinab Alawadib, Faisal Khatiba, Randa Naffaa, Yanal Shafagoj

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The purpose of the current study was to examine the association of plasma copper and lipid concentrations with changes in cognitive function in elderly Jordanian individuals. The study population consisted of two groups; 52 subjects with dementia, and 50 controls. All individuals were screened with Mini-Mental State Examination (MMSE) and Clock drawing test (CDT).Serum copper and lipid profile were assessed in all subjects, and the results were statistically evaluated at P < 0.05 level of significance. Dementia group had 10.1 % higher copper levels than controls however the difference was not statistically significant. No significant differences could be found between the two groups in lipid profile levels. There was no significant correlation between serum copper, lipid profile and cognitive decline in elderly Jordanians. Demographic variables indicate that educational level less than 12 years and illiterate demonstrated a 3.29 fold (p=0.026) and 6.29 fold (p=0.002) increase in risk of developing dementia, respectively. While coffee intake showed a protective effect against cognitive decline with 6.25 fold lower risk with increased coffee intake.

Keywords: copper, cholesterol, dementia, Alzheimer's disease, lipid profile, coffee

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Authors: Ryuji Yamazaki, Masahiro Kochi, Weiran Zhu, Hiroko Kase

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In care for older adults, behavioral and psychological symptoms of dementia (BPSD) like agitation and aggression are distressing for patients and their caretakers, often resulting in premature institutionalization with increased costs of care. To improve mood and mitigate symptoms, as a non-pharmaceutical approach, emotion-oriented therapy like reminiscence work is adopted in face-to-face communication. Telecommunication support is expected to be provided by robotic media as a bridge for digital divide for those with dementia and facilitate social interaction both verbally and nonverbally. The purpose of this case study is to explore the conditions in which robotic media can effectively attract attention from older adults with dementia and promote their well-being. As a pilot study, we introduced the pillow-phone Hugvie^®, a huggable humanly shaped communication medium to five residents with dementia at a care facility, to investigate how the following conditions work for the elderly when they use the medium; 1) no sound, 2) radio, non-interactive, 3) daily conversation, and 4) reminiscence work. As a result, under condition 4, reminiscence work, the five participants kept concentration in interacting with the medium for a longer duration than other conditions. In condition 4, they also showed larger amount of utterances than under other conditions. These results indicate that providing topics related to personal histories through robotic media could affect communication positively and should, therefore, be further investigated. In addition, the issue of ethical implications by using persuasive technology that affects emotions and behaviors of older adults is also discussed.

Keywords: BPSD, reminiscence, tactile telecommunication, utterances

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Authors: Jun Su Ha

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Various advanced technologies will be adopted in Advanced Control Rooms (ACRs) of advanced Nuclear Power Plants (NPPs), which is thought to increase operators’ performance. However, potential human factors issues coupled with digital technologies might be troublesome. Human factors issues in ACRs are identified and strategies (or countermeasures) for evaluating and analyzing each of issues are addressed in this study.

Keywords: advanced control room, human factor issues, human performance, human error, nuclear power plant

Procedia PDF Downloads 431