Search

Objectives: There is no consensus as to whether people with advanced dementia can create a narrative identity. It is most often thought to be disturbed due to autobiographical memory disorders. In this paper, we examined how people with advanced dementia constructed their narrative identities in relation to their professional experience. Methods: This qualitative study used data obtained from 8 semi‐structured interviews. The interviewees were people with advanced dementia aged between 66 and 89 years. We analyzed the dataset based on the textual‐oriented discourse analysis. Results: The study participants created narrative identities. Their narrative identities were constructed within residual professional discourses learned during their lifespan. These discourses blended their narrative identities into coherent stories about who they are now, offered languages to describe current experiences, and emphasized important values for their self‐image. The participants built narrative identities by referring to the past and imagining a better present with the omission of the future. The past was valued positively and was a source of positive nostalgia. Projections of a better present served to reveal their needs and assess ways to meet them. Conclusions: We argue that people with advanced dementia can create complex and coherent narrative identities. They are constructed around discourses and not only using autobiographical memories. Encouraging them to create narrative identities in the dialogue can be a simple therapeutic method by which they can maintain a sense of self‐cohesion and belonging to the world. [ABSTRACT FROM AUTHOR]

Objective: Palliative care for dementia includes psychosocial interventions as first-line treatment for challenging behaviour. However, the national dementia plan in Japan contradicts recommendations for palliative care for dementia. This study aimed to examine the association between care quality for patients with dementia and professional caregivers' perspectives regarding palliative care for dementia in Japanese community care settings.Methods: In total, 2116 professional caregivers from 329 agencies (217 in-home long-term care support providers; 29 small-scale, multiple home-care providers; and 83 group homes) in Tokyo prefecture, Japan, completed cross-sectional, paper-based questionnaires about 3603 people diagnosed with dementia, in May 2016. Quality of care measures included physical restraint and antipsychotic medication use and quality of life. Patients' quality of life was assessed via the Japanese version of the Alzheimer's Disease Health-related Quality of Life scale. The Japanese version of the Questionnaire on Palliative Care for Advanced Dementia was used to assess professional caregivers' knowledge and attitudes regarding palliative care for dementia.Results: Professional caregivers' knowledge and attitudes regarding palliative care for dementia were positively associated with quality of life in patients with dementia. Physical restraint and antipsychotic medication were used regardless of professional caregivers' knowledge and attitudes.Conclusions: Professional caregivers' perspectives regarding palliative care for dementia could have exerted a positive effect on quality of life in patients with dementia. A national strategy for advocacy and the protection of adults is required to integrate several laws and guidelines and prevent the use of antipsychotics as a form of chemical restraint. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective The paper aims to construct a baseline of knowledge about current activities, attitudes and motivations of a sample of people aged 50-65 years in relation to 'keeping one's brain active', with a particular focus on activities suggested in the literature and in popular parlance to have positive effects. Methods An online survey of people aged 50-65 years concerning their activities and motivations in relation to 'keeping one's brain active' was conducted with a sample of people employed in Scotland and in two online discussion forums. The survey ascertained respondents' background demographic data, data on health and lifestyle factors, activities they engaged in and reasons for engagement, including any concerns about dementia and experience of dementia. The achieved sample of 402 responses was representative of the general population on most counts, although the sample included more better-educated people and more smokers. Results Dementia prevention was a motivating factor for 21% of the respondents. More women and more of those living alone reported this motivation. It was linked with experience of dementia and future fears of developing the condition. New 'brain-training' technologies were used by younger people in higher socio-economic groups, and dementia prevention was cited as a motivation. Conclusion The findings indicate that dementia prevention motivates activities perceived to keep the brain active, despite there being a virtual absence of scientific evidence showing that the desired effects will follow. Given the existence of evidence suggesting that other activities, particularly physical exercise, may be more important and the possibility that stress itself may promote the development of dementia, further research is urgently needed. Copyright © 2011 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Introduction: Antipsychotic medications are commonly used to manage behavioural and psychological symptoms of dementia despite their side effects and harms. While the Halting Antipsychotic Use in Long-Term care (HALT) deprescribing trial was successful at reducing antipsychotic use, 19% of participants had their antipsychotics represcribed or never reached a dose of zero. The aim of this study was to investigate the reasons for represcription of antipsychotic medication and factors associated with ongoing antipsychotic use, relating to care staff requests and perceived behavioural changes.Materials and Methods: Thirty-nine of 133 HALT participants never ceased their antipsychotic medication or were represcribed a regular or pro re nata (PRN) antipsychotic after initial deprescribing. The views of nursing staff, general practitioner, and family on the circumstances leading up to these outcomes were collected via a questionnaire-based approach. This information was triangulated with observation and detailed file audit (including progress notes, medical notes, medication charts, incident reports, and hospital discharge summaries). A consensus panel reconstructed the represcribing context.Results: Nurses were the most common drivers of represcribing (63.2%), followed by family members (39.5%), GPs (23.7%), specialists (13.2%), and hospital staff (10.5%). There were multiple drivers for antipsychotic use in 46.2% of participants. Increased agitated and aggressive behaviours were the most commonly reported reasons for represcribing even though these changes were not identified over time on objective measures. Consent and dosage practices remained poor despite education.Discussion: Nursing staff are the key drivers of deprescribing particularly in response to perceived worsening agitation and aggression among male residents. The train-the-trainer model used in the HALT trial may have been insufficient on its own to improve staff competence and confidence in applying nonpharmacological approaches when responding to behaviour change. [ABSTRACT FROM AUTHOR]

Objective: The Canadian province of Quebec has recently legalized medical aid in dying (MAID) for competent patients who satisfy strictly defined criteria. The province is considering extending the practice to incompetent patients. We compared the attitudes of four groups of stakeholders toward extending MAID to incompetent patients with dementia.Methods: We conducted a province-wide postal survey in random samples of older adults, informal caregivers of persons with dementia, nurses, and physicians caring for patients with dementia. Clinical vignettes featuring a patient with Alzheimer's disease were used to measure the acceptability of extending MAID to incompetent patients with dementia. Vignettes varied according to the stage of the disease (advanced or terminal) and type of request (written or oral only). We used the generalized estimating equation (GEE) approach to compare attitudes across groups and vignettes.Results: Response rates ranged from 25% for physicians to 69% for informal caregivers. In all four groups, the proportion of respondents who felt it was acceptable to extend MAID to an incompetent patient with dementia was highest when the patient was at the terminal stage, showed signs of distress, and had written a MAID request prior to losing capacity. In those circumstances, this proportion ranged from 71% among physicians to 91% among informal caregivers.Conclusion: We found high support in Quebec for extending the current MAID legislation to incompetent patients with dementia who have reached the terminal stage, appear to be suffering, and had requested MAID in writing while still competent. [ABSTRACT FROM AUTHOR]

Objective: Improving and minimizing challenging behaviors seen in psychiatric conditions, including behavioral and psychological symptoms of dementia are important in the care of people with these conditions. Yet there is a lack of systematic evaluation of these as a part of routine clinical care. The Neuropsychiatric Inventory is a validated and reliable tool for rating the severity and disruptiveness of challenging behaviors. We report on the evaluation of a Web-based symptom assessment manager (SAM), designed to address the limitation of previous tools using some of the Neuropsychiatric Inventory functions, to monitor behaviors by staff caring for people with dementia and other psychiatric conditions in inpatient and residential care settings.Methods: The SAM was piloted in an 8-bed inpatient neuropsychiatry unit over 5 months. Eleven nurses and 4 clinicians were trained in usage of SAM. Primary outcomes were usage of SAM and perceived usability, utility, and acceptance of SAM. Secondary outcomes were the frequencies of documented behavior. Usage data were analyzed using chi-square and logistic regression analyses.Results: The SAM was used for all admitted patients regardless of diagnosis, with a usage rate of 64% for nurses regularly employed in the unit. Staff provided positive feedback regarding the utility of SAM.Conclusions: The SAM appeared to offer individualized behavior assessment by providing a quick, structured, and standardized platform for assessing behavior in a real-world setting. Further research would involve trialing SAM with more staff in alternative settings such as in home or residential care settings. [ABSTRACT FROM AUTHOR]

Background: Crisis situations in dementia can lead to hospital admission or institutionalisation. Offering immediate interventions may help avoid admission, whilst stabilising measures can help prevent future crises.Objective: Our objective was to identify the main causes of crisis and interventions to treat or prevent crisis in persons with dementia based on different stakeholder perspectives.Methods: An online questionnaire was developed to identify the causes of crisis and appropriate interventions in a crisis. Participants included people with dementia, family carers and staff working in health and social care, including emergency and voluntary sectors, and academia.Results: The results ranked the main causes of crisis, interventions that can prevent a crisis and interventions that can be useful in a crisis. Wandering, falls and infection were highly rated as risk factors for crises across all stakeholder groups. Consumers rated aggression as less important but severity of memory impairment as much more important than the other groups did. Education and support for family carers and home care staff were highly valued for preventing crises. Well-trained home care staff, communication equipment, emergency contacts and access to respite were highly valued for managing crises.Conclusions: We identified triggers and interventions that different stakeholders see as important for crisis in dementia. Recognition of these may be critical to planning effective and accepted support and care for people with dementia. [ABSTRACT FROM AUTHOR]

ObjectiveEarly screening and detection of dementia in primary care remains controversial. At least half of the patients identified as cognitively impaired by screening instruments do not meet criteria for dementia and some patients refuse further evaluation following a positive screen. The aim of this study was to identify the characteristics of patients who refuse a clinical diagnostic assessment for dementia after screening. DesignCross sectional study. SettingSeven primary care practice centers in Indianapolis. ParticipantsFour hundred and thirty-four individuals aged 65 and older who screened positive for dementia with a mean age of 74.6, 67% women, and 68% African-American. Main outcome measurePatients' acceptance of undergoing a dementia diagnostic assessment that included neuropsychological testing, caregiver interview, and medical chart review. ResultsAmong patients with positive screening results for dementia, approximately half (47.7%) refused further assessment to confirm their screening results. In a bivariate analysis, possible factors associated with a higher probability of refusing dementia assessment were older age and better screening score. In a multiple logistic regression model, performing well on the temporal orientation of the screening instrument was associated with a higher probability of refusing diagnostic assessment for dementia (OR = 1.37; p = 0.001). Also, African-American patients aged 80 and older were more likely to refuse the diagnostic assessment than African-Americans less than 80 years of age (OR = 3.1, p < 0.001), while there was no significant age association for white patients (OR = 0.9, p = 0.728). ConclusionsOlder primary care patients who perceived themselves as having no cognitive symptoms refused dementia diagnostic assessment despite their positive screening results. We must improve our understanding of the decision-making process driving patients' beliefs and behaviors about the benefits and risks of dementia screening and diagnosis before implementing any broad-based screening initiatives for dementia. Copyright © 2006 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

The author reflects on the perspectives of older adults, informal dementia caregivers, nurses and physicians of dementia patients on medical assistance in dying (MAID) given to patients with terminal stage of dementia. Other topics include a study showing that more than 90% of respondents in Canada support MAID, and the effect/s of the study to the position of non-governmental organizations like the Alzheimer Society of Canada (ASC) on the issue.