scholarly journals Stigma of Dementia During COVID-19: First Insights From a Twitter Study

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 961-962
Author(s):  
Juanita-Dawne Bacsu ◽  
Megan O'Connell ◽  
Alison Chasteen ◽  
Keyword(s):  
Critical Issue ◽  
Public Healthcare ◽  
Contributing Factors ◽  
Term Care ◽  
Search Terms ◽  
People With Dementia ◽  
Care Partners ◽  
Education And Awareness

Abstract Stigma is a critical issue that reduces the quality of life for people living with dementia and their care partners. Despite this knowledge, little research examines stigma of dementia, especially within the context of the COVID-19 pandemic. This presentation aims to: 1) identify the contributing factors of stigma against dementia during the COVID-19 pandemic; and 2) describe actions to challenge stigma of dementia. Using Twitter data, tweets were compiled with Python’s GetOldTweets application from February to September 2020. Search terms included keywords for dementia (e.g., Alzheimer’s) and COVID-19 (e.g., coronavirus). From the 20,800 tweets, filters were used to exclude irrelevant tweets. The remaining 5,063 tweets were analyzed by a group of coders with 1,743 tweets identified for further stigma-related coding. The 1,743 tweets were exported to Excel for thematic analysis and divided among 13 coders. Each tweet was coded independently by two reviewers to ensure intercoder reliability (e.g., 86%). Contributing factors of stigma of dementia included: ageism and devaluing the lives of people with dementia (e.g., ‘old and dying anyways’); misinformation and false beliefs (e.g., ‘COVID-19 vaccine causes dementia’); political dementia-related slander and ridicule (e.g., ‘dementia Joe’); and stigma within healthcare and long-term care organizations (e.g., pushing DNR orders). Globally, there is an urgent need for more dementia education and awareness targeted towards the general public, healthcare workers, and policymakers to reduce stigma against people living with dementia. Further research is necessary to explore the contributing factors and interventions to reduce stigma of dementia during the COVID-19 pandemic and beyond.

Multiple perspectives on quality of life for residents with dementia in long term care facilities: protocol for a comprehensive Australian study

2015 ◽  
Vol 27 (10) ◽  
pp. 1739-1747 ◽  
Author(s):  
Elizabeth Beattie ◽  
Maria O’Reilly ◽  
Wendy Moyle ◽  
Lynn Chenoweth ◽  
Deirdre Fetherstonhaugh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Long Term Care ◽  
Self Report ◽  
Care Staff ◽  
National Study ◽  
Term Care ◽  
People With Dementia ◽  
Care Facilities

ABSTRACTBackground:Dementia is a chronic illness without cure or effective treatment, which results in declining mental and physical function and assistance from others to manage activities of daily living. Many people with dementia live in long term care facilities, yet research into their quality of life (QoL) was rare until the last decade. Previous studies failed to incorporate important variables related to the facility and care provision or to look closely at the daily lives of residents. This paper presents a protocol for a comprehensive, multi-perspective assessment of QoL of residents with dementia living in long term care in Australia. A secondary aim is investigating the effectiveness of self-report instruments for measuring QoL.Methods:The study utilizes a descriptive, mixed methods design to examine how facility, care staff, and resident factors impact QoL. Over 500 residents with dementia from a stratified, random sample of 53 facilities are being recruited. A sub-sample of 12 residents is also taking part in qualitative interviews and observations.Conclusions:This national study will provide a broad understanding of factors underlying QoL for residents with dementia in long term care. The present study uses a similar methodology to the US-based Collaborative Studies of Long Term Care (CS-LTC) Dementia Care Study, applying it to the Australian setting.

Ambient Activity Technologies for Managing Responsive Behaviours in Dementia

2017 ◽  
Vol 6 (1) ◽  
pp. 28-35 ◽  
Author(s):  
Andrea Wilkinson ◽  
Marc Kanik ◽  
Judy O’Neill ◽  
Vishuda Charoenkitkarn ◽  
Mark Chignell
Keyword(s):  
Evaluation Research ◽  
Poor Quality ◽  
Easy Access ◽  
Recreational Therapy ◽  
Term Care ◽  
People With Dementia ◽  
Socially Isolated ◽  
Communal Areas

Many people living with dementia are under-stimulated and socially isolated. While there has been an increase in activities and programming based on recreational therapy and music therapy, such programs can cover only a fraction of the day for people with dementia and are resource demanding to execute. The result is that many people with dementia, who are institutionalized, are staying most of the day either in their rooms, sitting in communal areas, or wandering the hallways. A related problem is that people with dementia often have difficulty with social interactions and may become anxious or aggressive around people they do not recognize, or in situations they do not understand. Resulting responsive behaviours (e.g., hitting, screaming) may lead to overmedication and poor quality of life. Ambient Activity Technology (AAT) is a wall-mounted interactive tool designed for people with dementia. The AAT unit is available in the environment for easy access, and have been designed to augment existing programming and activities by providing self-accessed, engaging and personalized interactions at any time (24-hours per day, 7 days/week). AATs have been designed to reduce distress, in residents and caregivers, by substituting responsive behaviours and purposelessness with active and meaningful activities, distractions, and appropriate interventions. This paper describes the motivation behind the design and development of the AAT. The paper ends with a description of our summative evaluation research, which is currently in progress at several long-term care facilities in Ontario, Canada.

scholarly journals An individualised, non-pharmacological treatment strategy associated with an improvement in neuropsychiatric symptoms in a man with dementia living at home

2019 ◽  
Vol 12 (5) ◽  
pp. e229048 ◽  
Author(s):  
Mark McLean Carter ◽  
Angelina Wei ◽  
Xinlei Li
Keyword(s):  
Neuropsychiatric Symptoms ◽  
Emergency Department Visits ◽  
Pharmacological Interventions ◽  
First Line ◽  
Term Care ◽  
People With Dementia ◽  
Care Facilities ◽  
At Home

More than 90% of people with dementia experience neuropsychiatric symptoms which are often distressing and can result in early institutionalisation, diminished quality of life, increased frequency of emergency department visits along with stress and ill-health in caregivers. Non-pharmacological interventions are recommended as first-line treatment for neuropsychiatric symptoms, instead of medications such as atypical antipsychotics which have significant side effects. Most systematic reviews of non-pharmacological interventions for neuropsychiatric symptoms of dementia focus on patients in long-term care facilities and there are a limited number of research studies assessing the use of non-pharmacological interventions for patient’s living at home. In this case report, we discuss an elderly man with dementia whose cognitive symptoms were accompanied by significant neuropsychiatric symptoms of suspicion, delusions, agitation and aggression. We describe how a programme of individualised, non-pharmacological interventions was associated with an improvement in neuropsychiatric symptoms within 3 months.

Art Activities and Quality of Life for People With Dementia in the Long Term Care Setting: A Case Series

2014 ◽  
Vol 15 (3) ◽  
pp. B3
Author(s):  
Rebecca S. King-Tucker ◽  
Rebecca S. King-Tucker ◽  
Maria Knupp ◽  
Terry Edwards ◽  
Elizabeth Walters
Keyword(s):  
Quality Of Life ◽  
Care Setting ◽  
Long Term Care ◽  
Case Series ◽  
Term Care ◽  
People With Dementia ◽  
Art Activities

scholarly journals The effects of placement on dementia care recipients’ and family caregivers’ quality of life: a literature review

2017 ◽  
Vol 18 (1) ◽  
pp. 44-57 ◽  
Author(s):  
Heehyul Moon ◽  
Peggye Dilworth-Anderson ◽  
Johannes Gräske
Keyword(s):  
Quality Of Life ◽  
Long Term Care ◽  
Research Literature ◽  
Term Care ◽  
Content Type ◽  
Care Recipients ◽  
People With Dementia ◽  
Care Facilities

Purpose The purpose of this paper is to review and synthesize the research literature on the quality of life (QoL) of both caregivers (CGs) and care recipients (CRs) with dementia after admission to long-term care facilities. Design/methodology/approach Four databases – AgeLine, Medline, EBSCO, and PyscINFO – were searched and the relevant literature from 2002 onwards was reviewed. Findings The review of 12 studies (five studies, including only family CGs; six studies including residents; one study including both family CGs and CRs) reveals a discrepancy regarding the effects of institutionalization on the CRs’ and CGs’ QoL. Among seven studies on CRs’ QoL change, some reviewed studies found a significant decline in CRs’ QoL after placement with others showing that CRs’ QoL was improved or stable. While some reports indicated that some family CGs benefited from placement, others showed that CGs merely maintained their QoL. However, family CGs in the reviewed studies were more likely to report improved QoL than were their CRs after institutionalization. Research limitations/implications The authors recommend that future studies should focus on understanding the individual’s adaptation to placement, dyadic changes in QoL (including mediators/moderators). They emphasize the need for a comprehensive longitudinal study with more than one wave and includes diverse groups including racial/ethnic minority CGs and CRs. Originality/value This study reviewed and synthesized the research literature on the QoL of both caregiver and the people with dementia they cared for after those they cared for were admitted to long-term care facilities. The conclusions drawn about influences on QoL provide guidance for identifying best practices and research.

scholarly journals Monitoring changes in the organization of Dutch long-term care and their effects on the mental health and wellbeing of people with dementia

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
H van der Roest ◽  
M Prins ◽  
J van Erp ◽  
E Hartstra ◽  
A van der Schot
Keyword(s):  
Quality Of Life ◽  
Cognitive Impairment ◽  
Nursing Homes ◽  
Long Term Care ◽  
Behavioral Symptoms ◽  
Term Care ◽  
People With Dementia ◽  
Over Time

Abstract Background The 'Living Arrangements for People with Dementia (LAFD)' monitor-study aims to provide insight into effects of changes in the organization of Dutch long-term care for people with dementia. The objective of this study is to evaluate changes over time in the level of cognitive impairment, the frequency and severity of behavioral symptoms, and quality of life of residents with dementia, and changes in staffing levels. The study allows for detection of trends and developments that are relevant for the quality of nursing home care. Methods The LAFD-study is a repeated cross-sectional study. Since 2008, assessments have been conducted in participating nursing homes every two year. Up to 2020, five assessments have been completed. The number of participating nursing homes over time ranged from 47 to 144 and a sample of one third of residents was included in the study. Data collection was performed by care professionals. Cognitive impairment was assessed with the Cognitive Performance Scale, frequency and severity of behavioral symptoms were assessed with the Neuropsychiatric Inventory; quality of life was assessed with de Qualidem. Per nursing home, the amount of direct provided care was inventoried. Results Assessments up to 2017/2018 showed an improvement in cognitive functioning and quality of life in Dutch nursing homes. The amount of behavioral problems did not change, as did the amount of direct care. However, the level of professional caregivers increased slightly. In the last assessment, 53 nursing homes participated, and 668 residents were included. The fast majority of participants was over 80 years of age (67.1%) and 68.5% were female. The data are currently being further analyzed and presented at the conference. Conclusions There is a trend of improvement in cognitive functioning and quality of life up to 2018. The most recent assessment will indicate whether these positive trends continue.

scholarly journals 514 - Practice-based intervention to implement Person Centered care in long-term care facilities for people with Dementia

2021 ◽  
Vol 33 (S1) ◽  
pp. 64-65
Author(s):  
Claudia Van Der Velden ◽  
Henriëtte G. Van Der Roest
Keyword(s):  
Healthcare Professionals ◽  
Long Term Care ◽  
Term Care ◽  
Person Centered Care ◽  
People With Dementia ◽  
Care Facilities ◽  
Centered Care ◽  
E Learning

Healthcare professionals working with people with dementia (PwD) have increasingly been moving away from task-oriented models of healthcare towards person-centered care (PCC). Several studies have showed positive results of PCC on quality of life of PwD. Also, it shows positive effects on self-esteem and work satisfaction of healthcare professionals (HCP).We developed an successful practice-oriented intervention to implement PCC in long-term care facilities (LTCFs), based on the theory of Kitwood. The intervention consists of different components and learning methods: 1)Management of the facility is trained. They have an important role in motivating HCPs and safeguarding PCC-policy in the future.2)Dementia Care Mapping (DCM)-observations are carried out to gain understanding of the LTCF. DCM is an evidence-based observational method and aims to give a good understanding of the quality of life of PwD.3)The training of staff starts with a Kick-off-meeting. During a ‘Mirror theater’ with professional actors, an act representing a familiar care situation is performed. Staff participates in the act to become aware of PCC. The kick-off also serves as a warming-up on PCC knowledge.4)After this, staff complete an interactive e-learning on the basic theory of PCC. The e-learning contains practical videos and exercises.5)Finally, staff follow two consecutive, practical-oriented team-trainings. They will learn what PCC means for their daily practice and how to reflect on it. The most effective part is the reflection on examples of their own clients, and get more aware of their own behavior. In between trainings, HCP will carry out a practice exercise and provide feedback in session two.In an early stage of the intervention we discuss the possibilities and adjust the approach to the needs and situation (culture, level of knowledge etc.) of the LTCF. Involvement of all the staff in the intervention is essential, so everyone speaks the same ‘language’ and staff can rely on each other. Based on experience, these factors contributes to a sustainable way to implement PCC in LTCFs.

Dementia specialist care units

2017 ◽  
pp. 281-286
Author(s):  
Rebecca Palm ◽  
Sabine Bartholomeyczik
Keyword(s):  
Nursing Homes ◽  
Psychosocial Care ◽  
Specialist Care ◽  
Term Care ◽  
Active Involvement ◽  
Care Services ◽  
People With Dementia ◽  
And Training

Dementia specialist care units (DSCUs) provide care for people with dementia and severe challenging behaviour who live in nursing homes. They are an alternative care setting within traditional nursing homes. By providing certain physical design features, employing staff with additional dementia expertise and training, enhancing psychosocial care, and focusing on the active involvement of families, these units aim to improve the quality of life of people with dementia and their families. However, research has not demonstrated a clear benefit of DSCUs for people with dementia to date. Nevertheless, they are regarded as an essential pillar of dementia long-term care services and are a topic of several national dementia strategies.

scholarly journals Supportive care for older people with dementia: socio-organisational implications

2020 ◽  
pp. 1-33
Author(s):  
Francesco Miele ◽  
Federico Neresini ◽  
Giovanni Boniolo ◽  
Omar Paccagnella
Keyword(s):  
Supportive Care ◽  
Dementia Care ◽  
Future Research ◽  
Cultural Backgrounds ◽  
Term Care ◽  
Care Givers ◽  
People With Dementia ◽  
Depth Analysis

Abstract For many years, dementia care has been dominated by the standard medical approach, in which dementia is treated mainly with drugs, such as anti-anxiety, antidepressant and anti-psychotic medications. With the aim of seeking effective treatments for patients with dementia, over the last years, several contributions have criticised the pervasive use of drugs for the management of behavioural and physiological symptoms related to dementia, proposing personalised interventions aimed at supporting patients and their relatives from diagnosis until death. With particular reference to long-term settings, in this work, we aim at understanding the organisational implications of three types of interventions (labelled supportive care interventions – SCIs) that have characterised this shift in dementia care: person-centred, palliative and multi-disciplinary care. Conducted by following the integrative review method, our review underlines how SCIs have controversial consequences on the quality of care, the care-givers’ quality of life and cultural backgrounds. After an in-depth analysis of selected papers, we offer some considerations about the implications of SCIs for long-term care organisations and future research directions.

scholarly journals Non-pharmacological interventions for improving quality of life of long-term care residents with dementia: a scoping review protocol

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e032661
Author(s):  
Abimbola A Akintola ◽  
Wilco P Achterberg ◽  
Monique A A Caljouw
Keyword(s):  
Quality Of Life ◽  
Scoping Review ◽  
Long Term Care ◽  
Pharmacological Interventions ◽  
Term Care ◽  
People With Dementia ◽  
Scoping Reviews ◽  
Review Protocol

IntroductionEvidence concerning the effectiveness of non-pharmacological interventions that are applied to people with dementia living in long-term care facilities is inconsistent. The purpose of this protocol is to describe the methodological considerations that will guide the completion of a scoping review that will inventorise and assess the effectiveness of the various non-pharmacological interventions that are documented in literature for improving quality of life of people with dementia living in long-term care.Methods and analysisThis scoping review will combine the methodology outlined in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews and Guidance for conducting systematic scoping reviews by Peterset al. PubMed; MEDLINE; CINAHL; Embase; Cochrane Database of Systematic Reviews; Cochrane Central Register of Controlled Trials; Emcare; Sociological Abstracts and PsycINFO databases will be searched. Grey literature databases will also be explored. A two-stage screening process consisting of a title and abstract scan and a full-text review will be used to determine the eligibility of studies. Studies, irrespective of design, will be included that quantitatively assess quality of life of long-term care residents who receive non-pharmacological interventions for dementia. A pair of reviewers will independently assess all articles for eligibility, and all eligible articles will be abstracted and charted using a standardised form. The extracted data will undergo a ‘narrative review’ or a descriptive analysis of the contextual or process-oriented data and quantitative analysis reflecting the objectives of this scoping review.Ethics and disseminationResearch ethics approval is not required for this scoping review. This review started off in October 2018, anticipated end date is June 2020. We plan to disseminate this research through publications, presentations at relevant national and international conferences and meetings with relevant stakeholders. This scoping review protocol has been registered at Open Science Framework (https://osf.io/tupbv).

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