scholarly journals Conducting Research in Persons With Dementia During the COVID-19 Pandemic: Challenges and Strategies

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 310-310
Author(s):  
Ying-Ling Jao ◽  
Diane Berish ◽  
Ann Kolanowski
Keyword(s):  
Older Adults ◽  
Nursing Homes ◽  
Assisted Living ◽  
Ongoing Research ◽  
Health Crisis ◽  
Emergency Situations ◽  
Research Activities ◽  
People With Dementia ◽  
Dementia Research ◽  
Challenges And Strategies

Abstract The COVID-19 pandemic has caused a health crisis for vulnerable older adults, physically and psychologically. Despite the urgent demand for clinical research for people with dementia, research activities are restricted due to the pandemic. This symposium will share the experiences of researchers conducting studies with older persons with dementia during the COVID-19 pandemic. The presenters share their strategies to overcome challenges at different stages of the study process during the pandemic. The research projects include work conducted in acute care, assisted living, nursing homes, and the community. The presentations include perspectives from different geographic areas and across countries in North America. The first presenter reports the challenges in continuing an ongoing research project, and shares strategies to engage stakeholders and plan a new protocol for recruitment and in-person data collection with residents with dementia in nursing homes. The second presenter reports on the barriers and facilitators of conducting an ongoing clinical trial with older adults with dementia across hospital and community settings and discusses strategies to meet project goals which include modifications to the protocol and analytic plan. The third presenter describes adaptations made to a study intervention designed to promote quality resident-staff interactions in assisted living and alterations to stakeholder engagement. The fourth presenter describes challenges and strategies to engage older adults with dementia via technology. The discussant will synthesize the findings across studies and highlight policy and research implications for the COVID-19 pandemic as well as other emergency situations.

scholarly journals Contactless Interactive Fall Detection and Sleep Quality Estimation for Supporting Elderly with Incipient Dementia

2020 ◽  
Vol 6 (3) ◽  
pp. 388-391
Author(s):  
Roman Siedel ◽  
Tobias Scheck ◽  
Ana C. Perez Grassi ◽  
Julian B. Seuffert ◽  
André Apitzsch ◽  
...  
Keyword(s):  
Sleep Quality ◽  
Assisted Living ◽  
Ambient Assisted Living ◽  
Fall Detection ◽  
Quality Estimation ◽  
Emergency Situations ◽  
People With Dementia ◽  
Affected Person ◽  
Development State ◽  
Current Behaviour

AbstractIn recent years, the demographic change in conjunction with a lack of professional caregivers led to retirement homes reaching capacity. The Alzheimer Disease International stated that over 50 million people suffered from dementia in 2019 worldwide and twice the amount will presumably be effected in 2030. The field of Ambient Assisted Living (AAL) tackles this problem by facilitating technical system-aided everyday life. AUXILIA is such an AAL system and does not only support elderly people with dementia in an early phase, but also monitors their activities to provide behaviour analysis results for care attendants, relatives and physicians. Moreover, the system is capable of recognizing emergency situations like human falls. Furthermore, sleep quality estimation is employed to be able to draw conclusions about the current behaviour of an affected person. This article presents the current development state of AUXILIA.

Ongoing research protocols for the pharmacological treatment of neuropsychiatric symptoms in dementia

2020 ◽  
pp. 1-9
Author(s):  
M. Canevelli ◽  
G. Remoli ◽  
M. Toccaceli Blasi ◽  
L. Tariciotti ◽  
G. Sarli ◽  
...  
Keyword(s):  
Research Effort ◽  
Neuropsychiatric Symptoms ◽  
Phase 1 ◽  
Research Priorities ◽  
Eligibility Criteria ◽  
Ongoing Research ◽  
Research Activities ◽  
Effective Interventions ◽  
Dementia Research ◽  
Ongoing Phase

The implementation of effective interventions for neuropsychiatric symptoms (NPS) is perceived as one of the most pressing research priorities in the field of dementia and one of the main unmet needs from the perspective of affected individuals and their caregivers and relatives. Nevertheless, to date, only a relatively marginal part of dementia research has focused on NPS. This study aimed to describe and discuss the state of the art concerning the identification and development of new pharmacological treatments for NPS in dementia. A review of 320 ongoing phase 1, 2, 3, and 4 protocols registered in the clinicaltrials.gov database was performed. All the trials enrolling patients with dementia were selected. Only studies adopting clinical measures of NPS frequency and/or severity as primary outcome were retained and analyzed. Overall, only a minority of ongoing phase 1, 2, 3 and 4 protocols on dementia (i.e., 9.0%) is primarily targeting NPS. Most of these studies are adopting a placebo-controlled parallel assignment design, testing oral compounds, and targeting specific NPS (mostly agitation and/or aggression). A total of 3,445 subjects with dementia will tentatively be recruited in these trials. The methodologies adopted in these studies, the characteristics of the tested interventions, the eligibility criteria, and the operational definitions of NPS are presented and discussed. The relevance of NPS is not yet matched by an adequate research effort. The current tendency at privileging disease-modifying approaches and other symptoms of dementia and the methodological complexity of studying NPS are still substantially contributing to the gap between research activities and clinical needs.

scholarly journals Intergeneration Bonding: An Acceptability and Feasibility Study

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 712-713
Author(s):  
Lauren Rezac ◽  
Miechelle McKelvey ◽  
Ladan Ghazi Saidi
Keyword(s):  
Older Adults ◽  
Nursing Homes ◽  
Social Isolation ◽  
Assisted Living ◽  
Response Rates ◽  
Well Being ◽  
Younger Adults ◽  
Interest Level ◽  
The University

Abstract Social isolation and loneliness are detrimental risk factors to older adult’s physical and psychological well-being and quality of life. Given the current situation of the COVID-19 pandemic, social isolation has risen. Social isolation affects younger adults as well and may increase the chances of depression and anxiety. In this study, we tested the acceptability and feasibility of an Intergenerational Bonding (IGB) Program with older and younger adults. Participants include students aged 19-29 at the University of Nebraska at Kearney and older adults above the age of 60 residing in the community. First, we surveyed younger and older adults to determine their interest level in participating in an IGB Program. Both groups of participants rated their interest in different activities. The most popular activities among both groups included engaging in conversations, board games, and an exchange of skills. Neither of the groups was in favor of participating in free housing opportunities or sports-related activities. Response rates were high in young adults but low in older adults, due to lack of trust. Then, in a pilot study, we measured the feasibility and acceptability of the IGB Program. Older adults residing in independent dwellings, assisted living environments, nursing homes and members of community groups were invited to participate in the intergenerational program. Response rates of older adults were low. Further, establishing collaboration with institutions such as nursing homes was not easy despite initial interest. Building trust and working with community activity group facilitators would be beneficial in recruiting older adults.

scholarly journals Black–White Disparities in Moves to Assisted Living and Nursing Homes Among Older Medicare Beneficiaries

2019 ◽  
Vol 75 (9) ◽  
pp. 1972-1982 ◽  
Author(s):  
Meghan Jenkins Morales ◽  
Stephanie A Robert
Keyword(s):  
Older Adults ◽  
Nursing Home ◽  
Nursing Homes ◽  
Assisted Living ◽  
Multinomial Logistic Regression ◽  
Living Arrangement ◽  
Community Dwelling ◽  
Housing Tenure ◽  
Medicare Beneficiaries ◽  
Nationally Representative

Abstract Objectives Investigate black-white disparities in older adults’ moves to assisted living and nursing homes and draw from the Andersen Healthcare Utilization Model to test explanations for any disparities. Methods Data are from a nationally representative sample of older community-dwelling Medicare beneficiaries from the 2015 (N = 5,212) National Health and Aging Trends Study (NHATS). We use stepwise multinomial logistic regression to examine black-white disparities in moves out of community housing to assisted living or a nursing home over 2 years, before and after adjusting for predisposing (age, gender), enabling (income, housing tenure, Medicaid, living arrangement) and need (activities of daily living [ADL] limitation, physical capacity, self-rated health, and dementia) factors. Results Black older adults are less likely to move to assisted living and are more likely to move to a nursing home compared to white older adults. Black-white disparities in moves to nursing homes are explained by black-white differences in enabling and need factors, whereas black-white disparities in moves to assisted living remain even after adjusting for enabling and need factors. Discussion Unmeasured factors related to systemic racism (e.g., residential racial segregation, racial discrimination) and/or black-white differences in care preferences might further explain black-white disparities in moves to assisted living and warrant further investigation.

Comfort with proxy consent to research involving decisionally impaired older adults: do type of proxy and risk-benefit profile matter?

2011 ◽  
Vol 23 (9) ◽  
pp. 1479-1488 ◽  
Author(s):  
Marie-France Dubois ◽  
Gina Bravo ◽  
Janice Graham ◽  
Sheila Wildeman ◽  
Carole Cohen ◽  
...  
Keyword(s):  
Older Adults ◽  
Informal Caregivers ◽  
Research Participation ◽  
Low Risk ◽  
Board Members ◽  
Proxy Consent ◽  
People With Dementia ◽  
Random Samples ◽  
Dementia Research ◽  
Canadian Provinces

ABSTRACTBackground: Dementia research often requires the participation of people with dementia. Obtaining informed consent is problematic when potential participants lack the capacity to provide it. We investigated comfort with proxy consent to research involving older adults deemed incapable of this decision, and examined if comfort varies with the type of proxy and the study's risk-benefit profile.Methods: We surveyed random samples of five relevant groups (older adults, informal caregivers, physicians, researchers in aging, and Research Ethics Board members) from four Canadian provinces. Respondents were presented with scenarios involving four types of proxies (non-assigned, designated in a healthcare advance directive with or without instructions specific to research participation, and court-appointed). Given a series of risk-benefit profiles, respondents indicated whether they were comfortable with proxy consent to research for each scenario.Results: Two percent of the respondents felt proxy consent should never be allowed. In all groups, comfort depended far more on the risk-benefit profile associated with the research scenario than with type of proxy. For research involving little or no risk and potential personal benefits, over 90% of the respondents felt comfortable with substitute consent by a designated or court-appointed proxy while 80% were at ease with a non-assigned proxy. For studies involving serious risks with potentially greater personal benefits, older adults and informal caregivers were less comfortable with proxy consent.Conclusions: A large majority of Canadians are comfortable with proxy consent for low-risk research. Further work is needed to establish what kinds of research are considered to be low risk.

scholarly journals Qualitative, Quantitative, or Mixed Methods? A Systematic Scoping Review on Methodological Applications in Ageing and Dementia Studies

2020 ◽  
Author(s):  
Atiqur sm-Rahman ◽  
Yasmin Jahan
Keyword(s):  
Older Adults ◽  
Mixed Methods ◽  
Data Collection ◽  
Scoping Review ◽  
Measurement Tool ◽  
People With Dementia ◽  
Dementia Research ◽  
Questionnaire Surveys ◽  
Key Aspects ◽  
Cultural Interventions

Abstract Background: Older adults (with and without dementia) are discriminated against at different social levels and often over-generalized in a stereotypical manner is called ageism. Despite advancements in gerontological research, the methodological implementations in the field of ageing and dementia studies have not been shared equally. This article reports on a systematic scoping review of the emerging methodological trends (use and application of research designs and methods) in this combined field.Methods: The study reviewed evidence-based articles published from 2009 to 2018 and indexed in five scientific electronic databases Web of Science, PubMed, Scopus, PsycINFO, and CINAHL complete by following PRISMA-ScR protocol. Both visual scanning of reference lists and hand searching of leading journals were performed in the field of ageing and dementia in order to maximize the search result.Results: A total of 112 papers were included. The review reveals that the predominant form of methodological application was a quantitative design (74.1%) compared to a qualitative (19.6%) and mixed methods (6.2%) in the combined field of ageing and dementia. Furthermore, the data collection instruments mostly used a variety of questionnaire surveys (with and without validated scales) and interviews. Both quantitative, qualitative, and mixed-methods studies have targeted the general public and healthcare professionals by and large, not older adults or people with dementia in particular. Conclusions: The results have important implications for the methodological advancement of ageing and dementia research, as well as for the development of inter-disciplinary and cross-cultural interventions considering the potentialities and limitations of data collection tools. The study provides a first step towards understanding key aspects in any study setting and recommends to be purposeful about what information will be gathered, which measurement tool or instrument is consistent with study purpose, and how the knowledge will be utilized.

scholarly journals Motivation for people living with dementia to engage in research advisory boards

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 151-151
Author(s):  
Dianne Gove ◽  
Ana Diaz ◽  
Martina Roes
Keyword(s):  
Working Group ◽  
Public Involvement ◽  
Research Projects ◽  
Strategic Research ◽  
Advisory Boards ◽  
Research Activities ◽  
People With Dementia ◽  
European Working ◽  
Dementia Research ◽  
Set Up

Abstract The importance of Public Involvement (PI) is increasingly being recognized in the field of dementia research. In 2012, Alzheimer Europe set up the European Working Group of People with Dementia (EWGPWD) which provides advice and input for all activities of the organization including several large European-funded research projects. The German Center for Neurodegenerative Diseases (DZNE) created a research advisory patient board in 2020 with the intention of supporting the board in strategic research decisions. Both groups are composed of people with dementia and act independently. With the aim of finding out whether PI in research is mutually rewarding and beneficial, members of both groups were asked about their motivation to be involved in PI research activities and the value this had for them. This was collected either through narrative interviews or during meetings. People with dementia described several reasons for being involved in PI activities in dementia research.

scholarly journals COVID-19 and care homes and nursing homes crisis in Spain: ageism and scarcity of resources

2020 ◽  
Author(s):  
Blanca Deusdad
Keyword(s):  
Older Adults ◽  
Nursing Homes ◽  
Welfare State ◽  
Older People ◽  
Care Homes ◽  
Health Crisis ◽  
European Welfare State ◽  
Welfare Systems ◽  
Scarcity Of Resources ◽  
Legislative Measures

The European Welfare State crisis since 2008 has shown the weakness of these European welfare systems to cope with a health crisis such as COVID-19, which in turn has not guaranteed the rights and wellbeing of older people. This article aims at shading light on the scarcity of resources in Spanish care homes and nursing homes system, while analyzing its integrated care failure and the urgent legislative measures implemented to overcome COVID-19 health crisis. At the same time, this paper advocates for a reflexion on ageist practices, so as to foster a debate on the ‘desisntitucionalization’ process of older adults in Spain. In this COVID-19 context, it has become utmost in implementing an older adults’ policy to guarantee older adults rights as vulnerable population; likewise, which has already been done in respect to laws protecting children rights.

scholarly journals How Covid Flipped the Classroom: Learning from the Next Generation of Gerontologists

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 868-868
Author(s):  
Mary Carter
Keyword(s):  
Older Adults ◽  
Nursing Homes ◽  
Assisted Living ◽  
Mortality Rates ◽  
Lessons Learned ◽  
Direct Care ◽  
Full Time ◽  
Part Time ◽  
Structural Inequities ◽  
Locked Doors

Abstract Covid laid bare the structural inequities and systemic challenges facing LTC, both in terms of risk and neglect. Lost in the daily tally of new cases and mortality rates are the stories of essential workers who have neither degree nor stature in the field, yet who fulfill an awesome responsibility—caring for older adults no longer visible behind locked doors. Suddenly, these full-time students and part-time workers found themselves employed in one of the most dangerous occupations in the country—providing direct care in nursing homes and assisted living communities. This award lecture highlights their voices and lessons learned.

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