A Scoping Review of Care Trajectories across Multiple Settings for Persons with Dementia

Abstract Multiple transitions across care settings can be disruptive for older adults with dementia and their care partners, and can lead to fragmented care with adverse outcomes. This scoping review was conducted to identify and classify care trajectories across multiple settings for people with dementia, and to understand the prevalence of multiple transitions and associated factors at the individual and organizational levels. Searches of three databases, limited to peer-reviewed studies published between 2007 and 2017, provided 33 articles for inclusion. We identified 26 distinct care trajectories. Common trajectories involved hospital readmission or discharge from hospital to long-term care. Factors associated with transitions were identified mainly at the level of demographic and medical characteristics. Findings suggest a need for investing in stronger community-based systems of care that may reduce transitions. Further research is recommended to address knowledge gaps about complex and longitudinal care trajectories and trajectories experienced by sub-populations of people living with dementia.

Download Full-text

Protocol for a scoping review on the methods for engaging long-term care residents with dementia in research and guideline development

BMJ Open ◽

10.1136/bmjopen-2021-051602 ◽

2021 ◽

Vol 11 (8) ◽

pp. e051602

Author(s):

Caitlin McArthur ◽

Adria Quigley ◽

Rebecca Affoo ◽

Marie Earl ◽

Elaine Moody

Keyword(s):

Scoping Review ◽

Patient Engagement ◽

Long Term Care ◽

Guideline Development ◽

Research Question ◽

Grey Literature ◽

Optimal Strategies ◽

Term Care ◽

People With Dementia

IntroductionPatient engagement is important when developing health guidelines to ensure high-quality and patient-centred recommendations. However, patient engagement in research and guideline development remains suboptimal, particularly for vulnerable populations, including residents with dementia living in long-term care (LTC) who are often not included in research and guideline development because of perceived and actual challenges with their health, memory, concentration and communication. Optimal strategies and methods for engaging LTC residents with dementia in research and guideline development remain unknown.Methods and analysisWe will conduct a scoping review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension to answer the research questions: (1) What methods have been used to engage LTC residents with dementia in research and guideline development? (2) What are the outcomes of resident engagement? (3) What are the barriers and facilitators to resident engagement? Systematic searches for peer-reviewed articles will be conducted in: Academic Search Premier (EBSCO), APA PsycINFO (EBSCO), CINAHL (EBSCO), Medline (OVID), Embase (Elsevier), Web of Science, and Cochrane Database and in grey literature. Two team members will screen articles and extract data. Results will be presented according to the research question they address. We will engage stakeholders including residents, family members, healthcare providers and representatives from relevant organisations throughout the study.Ethics and disseminationThe scoping review will synthesise what is known about resident engagement in research and guideline development. It may identify gaps in the literature about the optimal methods to engage residents in performing research and developing guidelines and reveal opportunities for new methods. The results will be helpful for researchers and policy-makers seeking to develop guidelines and researchers engaging in topics that reflect the priorities and experiences of people with dementia. Results of the scoping review will be disseminated via publication in a peer-reviewed journal and conference presentations, and a one-page lay summary will be shared with our engaged stakeholders.

Download Full-text

CHANGES OF THE ORGANIZATIONS, PROVIDING SOCIAL SERVICES, IN THE CONTEXT OF DEINSTITUTIONALIZATION

SOCIETY INTEGRATION EDUCATION Proceedings of the International Scientific Conference ◽

10.17770/sie2018vol1.3390 ◽

2018 ◽

Vol 1 ◽

Author(s):

Janina Čižikienė ◽

Audronė Urmanavičienė

Keyword(s):

Social Services ◽

Inpatient Care ◽

Institutional Care ◽

Developed Countries ◽

Community Based ◽

Term Care ◽

Expert Interview ◽

The Individual ◽

Community Based Services

The challenges of globalization are the reason why the EU countries are looking for the ways to make the provision of social services most effective and best fitted to the customer’s needs. In 1960s, deinstitutionalization processes started to take place in many developed countries with the aim to reduce the inpatient care and to develop the community-based services. Deinstitutionalization is replacement of inpatient care with the services that are more in line with the individual interests of each customer. Currently, it is essential in Lithuania, where institutional care is widespread, and the services, provided in the institutions, are ineffective due to their depersonalization, strict procedure, and work with a group of the customers. They are not adapted to individual needs of a person, however, the main services that have no alternatives and are required for long-term care of the persons with intellectual disabilities, mental disorders, and for children, left without parental care, remain. The following research methods were applied: analysis of scientific literature and documents, expert interview, analysis and interpretation of the research results. The review of literature and the research data, presented in the article, reveal the issues of deinstitutionalization process of the organizations, providing social services, as well as the challenges faced in reorganization of children’s care homes.

Download Full-text

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

Innovation in Aging ◽

10.1093/geroni/igab046.3437 ◽

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.

Download Full-text

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

BMJ Open ◽

10.1136/bmjopen-2019-032661 ◽

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).

Download Full-text

Using touchscreen tablets to support social connections and reduce responsive behaviours among people with dementia in care settings: A scoping review

Dementia ◽

10.1177/1471301220922745 ◽

2020 ◽

pp. 147130122092274

Author(s):

Lillian Hung ◽

Bryan Chow ◽

John Shadarevian ◽

Ryan O’Neill ◽

Annette Berndt ◽

...

Keyword(s):

Scoping Review ◽

Care Home ◽

Dementia Care ◽

Lessons Learned ◽

Social Connections ◽

Term Care ◽

People With Dementia ◽

Person With Dementia ◽

The Impact

The use of touchscreen tablets, such as the iPad, offers potential to support the person with dementia staying in a care setting, ranging from a long-term care home to an adult day programme. Although electronic devices are used among people with dementia, a comprehensive review of studies focusing on their impact and how they may be used effectively in care settings is lacking. We conducted a scoping review to summarize existing knowledge about the impact of touchscreen tablets in supporting social connections and reducing responsive behaviours of people with dementia in care settings. Our research team consists of patient partners and family partners, physicians, nurses, a medical student and an academic professor. A total of 17 articles were included in the review. Our analysis identified three ways in which touchscreen tablets support dementia care: (1) increased the person’s engagement, (2) decreased responsive behaviours and (3) positive effect on enjoyment/quality of life for people with dementia. Lessons learned and barriers to the use of touchscreen tablets in the care of people with dementia are described. Overall, only a few studies delineated strategies that helped to overcome barriers to technology adoption in care settings. Knowledge translation studies are needed to identify effective processes and practical tips to overcome barriers and realize the potential of assistive technology in dementia care.

Download Full-text

Architecture as third skin : spatial dimensions of stimuli for dementia care.

10.32920/ryerson.14657892 ◽

2021 ◽

Author(s):

Sebastian Lubczynski

Keyword(s):

Dementia Care ◽

Direct Care ◽

Community Based ◽

Term Care ◽

Dementia Patients ◽

People With Dementia ◽

Spatial Dimensions ◽

Short And Long Term ◽

Mental And Physical Health

Our built environments have a direct correlation with our mental and physical health. This correlation is ever more evident with the process of ageing and the declining of neurological and physiological capacities of the human body. Architecture as Third Skin: Spatial Dimensions of Stimuli for Dementia Care thesis-project asserts that architecture, supported by evidence-based knowledge, can create an environment that triggers positive neurological changes in its users, negotiating the functional and social necessities of people with dementia in supporting their needs. The architectural model that informs this inquiry is explored through the design of a community-based Dementia Respite Care Centre, providing short and long term care as well as physical and mental therapy for those with early-to mid-stage dementia. Situated in Toronto, this thesis-project proposes a model that provides direct care for the specialized needs of dementia patients early in their illness condition to maintain independence and encourage living and ageing.

Download Full-text

Scoping Review: Home and Community-Based Service Waiver Programs and Person-Reported Outcomes

Innovation in Aging ◽

10.1093/geroni/igab046.3077 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 848-849

Author(s):

Taylor Bucy ◽

John Mulcahy ◽

Eric Jutkowitz ◽

Tetyana Shippee

Keyword(s):

Scoping Review ◽

Service Use ◽

Long Term Care ◽

Medication Management ◽

International Studies ◽

Care Needs ◽

Community Based ◽

Term Care ◽

Use Patterns

Abstract State Medicaid programs are rebalancing their long-term care spending from nursing home to home and community-based services (HCBS). Emphasis on person-centered and person-directed care warrants investigation into models of HCBS delivery that promote quality of life. We performed a scoping review of the literature to catalogue the breadth of the studies describing HCBS waiver programs targeting adults (18+). We identified 757 articles, and after duplicate removal and reconciliation, we excluded articles on children or adolescents, non-peer reviewed reports, international studies, and articles that did not describe HCBS waiver programs. After abstract and title review, 292 articles met our inclusion criteria. Most included articles (22.3%) were single state descriptive evaluations or evaluations of service use patterns among participants. 17.8% of included articles examined multi-state or national variation in program trends, while 17.1% made national program conclusions without a major focus on interstate comparison. Less common were studies examining integrated care or dual-eligibles (7.5%), PACE (3.4%), medication management (3.1%), quality and satisfaction of both consumer and caretaker perspectives (3.8%) and consumer-only perspectives (5.1%). The remaining articles focused on HIV (4.1%), TBI (1.4%) or ID/DD (14.4%) waiver programs. The 8.9% of articles addressing quality and satisfaction consisted mostly of interviews, either with state Medicaid administrators or with care recipients and/or caregivers. Consumer reported satisfaction and unmet care needs were the primary outcomes examined. Given the heightened focus on long-term care as a result of the ongoing coronavirus pandemic, this review justifies further exploration into the delivery and outcomes of state-directed HCBS waiver programs.

Download Full-text

Nursing staff needs in providing palliative care for people with dementia at home or in long-term care facilities: A scoping review

International Journal of Nursing Studies ◽

10.1016/j.ijnurstu.2018.12.011 ◽

2019 ◽

Vol 96 ◽

pp. 143-152 ◽

Cited By ~ 9

Author(s):

Sascha R. Bolt ◽

Jenny T. van der Steen ◽

Jos M.G.A. Schols ◽

Sandra M.G. Zwakhalen ◽

Sabine Pieters ◽

...

Keyword(s):

Palliative Care ◽

Nursing Staff ◽

Scoping Review ◽

Long Term Care ◽

Term Care ◽

People With Dementia ◽

Care Facilities ◽

At Home

Download Full-text

Potentially inappropriate medication among people with dementia in eight European countries

Age and Ageing ◽

10.1093/ageing/afx147 ◽

2017 ◽

Vol 47 (1) ◽

pp. 68-74 ◽

Cited By ~ 26

Author(s):

Anna Renom-Guiteras ◽

Petra A Thürmann ◽

Ramón Miralles ◽

Renate Klaaßen-Mielke ◽

Ulrich Thiem ◽

...

Keyword(s):

Long Term Care ◽

Inappropriate Medication ◽

Cognitive Status ◽

Adverse Outcomes ◽

Potentially Inappropriate Medication ◽

The European Union ◽

Term Care ◽

People With Dementia

Abstract Objectives to evaluate the frequency of potentially inappropriate medication (PIM) prescription among older people with dementia (PwD) from eight countries participating in the European study ‘RightTimePlaceCare’, and to evaluate factors and adverse outcomes associated with PIM prescription. Methods survey of 2,004 PwD including a baseline assessment and follow-up after 3 months. Interviewers gathered data on age, sex, prescription of medication, cognitive status, functional status, comorbidity, setting and admission to hospital, fall-related injuries and mortality in the time between baseline and follow-up. The European Union(7)-PIM list was used to evaluate PIM prescription. Multivariate regression analysis was used to investigate factors and adverse outcomes associated with PIM prescription. Results overall, 60% of the participants had at least one PIM prescription and 26.4% at least two. The PIM therapeutic subgroups most frequently prescribed were psycholeptics (26% of all PIM prescriptions) and ‘drugs for acid-related disorders’ (21%). PwD who were 80 years and older, lived in institutional long-term care settings, had higher comorbidity and were more functionally impaired were at higher risk of being prescribed two PIM or more. The prescription of two or more PIM was associated with higher chance of suffering from at least one fall-related injury and at least one episode of hospitalisation in the time between baseline and follow-up. Conclusions PIM use among PwD is frequent and is associated with institutional long-term care, age, advanced morbidity and functional impairment. It also appears to be associated with adverse outcomes. Special attention should be paid to psycholeptics and drugs for acid-related disorders.

Download Full-text

Eating Difficulties among Older Adults with Dementia in South Korean Long-Term Care Facilities: A Scoping Review

Journal of Korean Academy of Fundamentals of Nursing ◽

10.7739/jkafn.2021.28.4.470 ◽

2021 ◽

Vol 28 (4) ◽

pp. 470-481

Author(s):

Dukyoo Jung ◽

Kyuri Lee ◽

Eunju Choi

Keyword(s):

Older Adults ◽

Eating Behavior ◽

Scoping Review ◽

Long Term Care ◽

Term Care ◽

Measurement Tools ◽

Care Facilities ◽

Individual Domain ◽

The Individual

Purpose: This study synthesized the literature on eating difficulties among older adults with dementia in long-term care facilities.Methods: A scoping review, using the framework proposed by Arksey & O'Malley (2005) and supplemented by Levac et al. (2010), was conducted. Literature was searched from RISS, KISS, DBpia, PubMed, and CINAHL. Two reviewers independently selected studies and extracted their characteristics, using pre-tested forms to determine final inclusion. In total, 1283 articles were identified, and 13 articles were used for the final analysis.Results: The Eating Behavior Scale and the Edinburgh Feeding Evaluation in Dementia scale were the most widely utilized measurement tools. The most common factors related to eating behavior in older adults with dementia were cognitive and physical functions in the individual domain, the caregiver's attitude toward eating in the inter-individual domain, and meal type in the environmental domain.Conclusion: Measurement tools reflecting the eating behavior of older adults with dementia must be developed to obtain a comprehensive understanding of this issue and create effective interventions for the specific context of long-term care facilities in Korea. The results of this study are intended to serve as a basis to develop meal support programs for older adults with dementia.

Download Full-text