Effectiveness of a psychoeducational programme for informal caregivers of older adults

Long-term care for older adults is highly affect by the COVID-19 outbreak. The objective of this rapid review is to understand what we can learn from previous crises or disasters worldwide to optimize the care for older adults in long term care facilities during the outbreak of COVID-19. We searched five electronic databases to identify potentially relevant articles. In total, 23 articles were included in this study. Based on the articles, it appeared that nursing homes benefit from preparing for the situation as best as they can. For instance, by having proper protocols and clear division of tasks and collaboration within the organization. In addition, it is helpful for nursing homes to collaborate closely with other healthcare organizations, general practitioners, informal caregivers and local authorities. It is recommended that nursing homes pay attention to capacity and employability of staff and that they support or relieve staff where possible. With regard to care for the older adults, it is important that staff tries to find a new daily routine in the care for residents as soon as possible. Some practical tips were found on how to communicate with people who have dementia. Furthermore, behavior of people with dementia may change during a crisis. We found tips for staff how to respond and act upon behavior change. After the COVID-19 outbreak, aftercare for staff, residents, and informal caregivers is essential to timely detect psychosocial problems. The consideration between, on the one hand, acute safety and risk reduction (e.g. by closing residential care facilities and isolating residents), and on the other hand, the psychosocial consequences for residents and staff, were discussed in case of other disasters. Furthermore, the search of how to provide good (palliative) care and to maintain quality of life for older adults who suffer from COVID-19 is also of concern to nursing home organizations. In the included articles, the perspective of older adults, informal caregivers and staff is often lacking. Especially the experiences of older adults, informal caregivers, and nursing home staff with the care for older adults in the current situation, are important in formulating lessons about how to act before, during and after the coronacrisis. This may further enhance person-centered care, even in times of crisis. Therefore, we recommend to study these experiences in future research.

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Educational intervention to improve palliative care knowledge among informal caregivers of cognitively impaired older adults

Palliative & Supportive Care ◽

10.1017/s1478951520001200 ◽

2020 ◽

pp. 1-9

Author(s):

Hyunjin Noh ◽

Lewis H. Lee ◽

Chorong Won

Keyword(s):

Older Adults ◽

Palliative Care ◽

Cognitive Impairment ◽

Educational Intervention ◽

Test Scores ◽

Informal Caregivers ◽

Cognitively Impaired ◽

Significant Difference ◽

Post Test ◽

Seriously Ill

Abstract Objective Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults. Method Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test. Results There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05). Significance of results This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.

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Evaluating the provision of Further Enabling Care at Home (FECH+) for informal caregivers of older adults discharged home from hospital: protocol for a multicentre randomised controlled trial

BMJ Open ◽

10.1136/bmjopen-2020-046600 ◽

2021 ◽

Vol 11 (6) ◽

pp. e046600

Author(s):

Anne-Marie Hill ◽

Rachael Moorin ◽

Susan Slatyer ◽

Christina Bryant ◽

Keith Hill ◽

...

Keyword(s):

Quality Of Life ◽

Older Adults ◽

Randomised Controlled Trial ◽

Usual Care ◽

Controlled Trial ◽

Informal Caregivers ◽

Care Recipient ◽

Care At Home ◽

Randomised Controlled

IntroductionThere are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers’ health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to informal caregivers of older adults following discharge from acute hospital care to home. The trial aims to evaluate the efficacy of the FECH+ programme on caregivers’ health-related quality of life (HRQOL) after care recipients’ hospital discharge.Methods and analysisA multisite, parallel-group, randomised controlled trial with blinded baseline and outcome assessment and intention-to-treat analysis, adhering to Consolidated Standards of Reporting Trials guidelines will be conducted. Participants (N=925 dyads) comprising informal home caregiver (18 years or older) and care recipient (70 years or older) will be recruited when the care recipient is discharged from hospital. Caregivers of patients discharged from wards in three hospitals in Australia (one in Western Australia and two in Queensland) are eligible for inclusion. Participants will be randomly assigned to one of the two groups. The intervention group receive the FECH+ programme, which provides structured support and problem-solving for the caregiver after the care recipient’s discharge, in addition to usual care. The control group receives usual care. The programme is delivered by a registered nurse and comprises six 30–45 min telephone support sessions over 6 months. The primary outcome is caregivers’ HRQOL measured using the Assessment of Quality of Life—eight dimensions. Secondary outcomes include caregiver preparedness, strain and distress and use of healthcare services. Changes in HRQOL between groups will be compared using a mixed regression model that accounts for the correlation between repeated measurements.Ethics and disseminationParticipants will provide written informed consent. Ethics approvals have been obtained from Sir Charles Gairdner and Osborne Park Health Care Group, Curtin University, Griffith University, Gold Coast Health Service and government health data linkage services. Findings will be disseminated through presentations, peer-reviewed journals and conferences.Trial registration numberACTRN12620000060943.

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Caregiving burden of informal caregivers of older adults with advanced cancer: The effects of rurality and education

Journal of Geriatric Oncology ◽

10.1016/j.jgo.2021.04.002 ◽

2021 ◽

Author(s):

Huiwen Xu ◽

Sindhuja Kadambi ◽

Supriya G. Mohile ◽

Shuhan Yang ◽

Lee A. Kehoe ◽

...

Keyword(s):

Older Adults ◽

Advanced Cancer ◽

Informal Caregivers ◽

Caregiving Burden

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‘We’re not doing it to be nasty’: Caregivers’ ethical dilemmas in negotiating driving safety with older adults

Canadian Journal on Aging / La Revue canadienne du vieillissement ◽

10.1017/s0714980820000409 ◽

2021 ◽

pp. 1-8

Author(s):

Michelle N. Lafrance ◽

Elizabeth Dreise ◽

Lynne Gouliquer ◽

Carmen Poulin

Keyword(s):

Older Adults ◽

Older Adult ◽

Thematic Analysis ◽

Ethical Dilemmas ◽

Informal Caregivers ◽

Health Conditions ◽

Driving Safety ◽

Loved One ◽

Study Participants ◽

Ability To Drive

Abstract The purpose of this research was to investigate how informal caregivers of older adults cope with and negotiate driving safety when their loved one is no longer safe to drive. Fifteen informal caregivers of an older adult living at home took part in the present study. Participants cared for individuals with a range of health conditions that significantly impaired driving safety, including dementia, Parkinson’s disease, macular degeneration, and stroke. A thematic analysis of participants’ accounts identified the complex interpersonal, social, and organisational context they encountered when their loved one did not recognise or acknowledge limitations in their ability to drive. This analysis highlights the ethical dilemma at the heart of caregivers’ experiences and identifies stake and blame as key considerations in the development of sensitive and effective policies and practices.

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Caregivers’ Perspectives on Privacy in Aged Care Monitoring Devices

Healthier Lives, Digitally Enabled - Studies in Health Technology and Informatics ◽

10.3233/shti210003 ◽

2021 ◽

Author(s):

Sami Alkhatib ◽

Jenny Waycott ◽

George Buchanan ◽

Marthie Grobler ◽

Shuo Wang

Keyword(s):

Older Adults ◽

Old Age ◽

Cognitive Impairments ◽

Informal Caregivers ◽

Aged Care ◽

Private Life ◽

Sensitive Data ◽

Privacy Concerns ◽

Privacy Settings ◽

Monitoring Devices

As people move into advanced old age, they may experience cognitive impairments and frailty, making it difficult for them to live without support from others. Caregivers might decide to use aged care monitoring devices (ACMDs) to support older adults under their care. However, these devices raise privacy concerns as they collect and share sensitive data from the older adult’s private life in order to provide monitoring capabilities. This study involved interviewing formal and informal caregivers who used/may use ACMDs to investigate their views on privacy. The study found that although caregivers consider protecting older adults’ privacy important, they may overlook privacy in order to gain benefits from ACMDs. We argue that ACMD developers should simplify privacy terms and conditions so that caregivers can make well-informed decisions when deciding to use the device. They also should consider providing users with flexible privacy settings so that users can decide what data to collect, whom to share it with and when.

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Exploration of home care nurse’s experiences in deprescribing of medications: a qualitative descriptive study

BMJ Open ◽

10.1136/bmjopen-2018-025606 ◽

2019 ◽

Vol 9 (5) ◽

pp. e025606 ◽

Cited By ~ 2

Author(s):

Winnie Sun ◽

Farah Tahsin ◽

Caroline Barakat-Haddad ◽

Justin P Turner ◽

Cheryl Reid Haughian ◽

...

Keyword(s):

Older Adults ◽

Home Care ◽

Medication Management ◽

Informal Caregivers ◽

Healthcare Providers ◽

Learning Needs ◽

Open Communication ◽

Barriers And Enablers ◽

Qualitative Descriptive ◽

Home Care Nurses

ObjectivesThe aim of this study is to explore the barriers and enablers of deprescribing from the perspectives of home care nurses, as well as to conduct a scalability assessment of an educational plan to address the learning needs of home care nurses about deprescribing.MethodsThis study employed an exploratory qualitative descriptive research design, using scalability assessment from two focus groups with a total of 11 home care nurses in Ontario, Canada. Thematic analysis was used to derive themes about home care nurse’s perspectives about barriers and enablers of deprescribing, as well as learning needs in relation to deprescribing approaches.ResultsHome care nurse’s identified challenges for managing polypharmacy in older adults in home care settings, including a lack of open communication and inconsistent medication reconciliation practices. Additionally, inadequate partnership and ineffective collaboration between interprofessional healthcare providers were identified as major barriers to safe deprescribing. Furthermore, home care nurses highlighted the importance of raising awareness about deprescribing in the community, and they emphasised the need for a consistent and standardised approach in educating healthcare providers, informal caregivers and older adults about the best practices of safe deprescribing.ConclusionTargeted deprescribing approaches are important in home care for optimising medication management and reducing polypharmacy in older adults. Nurses in home care play a vital role in medication management and, therefore, educational programmes must be developed to support their awareness and understanding of deprescribing. Study findings highlighted the need for the future improvement of existing programmes about safer medication management through the development of a supportive and collaborative relationship among the home care team, frail older adults and their informal caregivers.

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IDENTIFYING UNMET NEED IN INFORMAL CAREGIVING: DISPARITIES BY GENDER, EMPLOYMENT STATUS, AND RACE-ETHNICITY

Innovation in Aging ◽

10.1093/geroni/igz038.803 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S219-S220

Author(s):

Steven A Cohen ◽

Furong Xu ◽

Marissa R Meucci ◽

Symone Woodham ◽

Mary L Greaney

Keyword(s):

Older Adults ◽

Employment Status ◽

Informal Caregivers ◽

Unmet Need ◽

Informal Caregiving ◽

Care Recipient ◽

National Study ◽

Caregiver Health ◽

White Caregivers ◽

Race Ethnicity

Abstract Older adults, including those with dementia and other types of cognitive decline, often report a desire to remain in their homes. Over 50 million informal caregivers in the US provide needed in-home assistance to those in need, and there are well-documented disparities in informal caregiving responsibilities by sociodemographic factors , yet little is known about “unmet need” in informal caregiving. Therefore, the study’s objective is to examine discrepancies in unmet caregiving-related need by race/ethnicity, gender, and employment status. We abstracted data about caregivers from the 2017 National Study of Caregiving and linked these data to participants in the National Health and Aging Trends Study on caregivers of older adults (n=993). Generalized linear models were used to model the discrepancies between the number of activities of daily living for which the care recipient required assistance and the number of tasks caregivers provide, by race/ethnicity, gender, and employment status, accounting for confounders and complex sampling. Care recipients whose primary informal caregivers were employed were 69% more likely than those whose informal caregivers were not employed to experience unmet caregiving need (OR 1.69, 95%CI 1.19-2.41). A similar association between employment and unmet caregiving was observed among White caregivers (OR=1.79, 95% CI 1.16-2.69), while the association was not significant among Black caregivers (p=0.228). These findings suggest potentially addressable disparities in informal caregiving duties between Black and White caregivers, and can be used to inform and develop of policies and programs designed to improve caregiver health and reduce undue strain on caregiver health and wellbeing.

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EXPLORING TECHNOLOGY-ENABLED ASSESSMENTS OF SYMPTOMS EXPERIENCE BY INFORMAL CAREGIVERS

Innovation in Aging ◽

10.1093/geroni/igz038.1220 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S336-S336

Author(s):

Daniel J Schulman ◽

Portia Singh ◽

Mladen Milosevic ◽

Ali Samadani

Keyword(s):

Older Adults ◽

Symptom Management ◽

Information Source ◽

Informal Caregivers ◽

Smartphone Application ◽

Relevant Information ◽

Community Dwelling ◽

Communication And Coordination ◽

Community Dwelling Older Adults

Abstract For community-dwelling older adults with chronic conditions, effective symptom management is a determinant of quality of life. Providers often have poor knowledge of an individual’s symptoms experience, especially when contact is infrequent, leading to suboptimal symptom management. Many older adults receive frequent care and contact from family, friends, and other informal caregivers (ICGs). Subjective observation by ICGs is an underexplored information source, but faces barriers including ICG burden and lack of ICG knowledge. It is unclear what relevant information might be collected by ICG observations. We conducted a pilot evaluation of Philips CarePartners Mobile (CPM), a prototype smartphone application that provides communication and coordination support to a “circle” of ICGs assisting an older adult. CPM includes features enabling ICGs to share semi-structured observations. 19 caregivers (in 8 circles) used CPM for 12 weeks, contributing 397 observations and participating in interviews and other assessments. We performed a qualitative analysis of the observations, coding for presence of content relevant to dimensions in the UCSF Symptom Management Theory (perception of, evaluation of, and response to symptoms). Relevant content was found in 150 observations, with perception and assessment more common (141) than response (32). Common symptoms included mobility difficulty (31), fatigue (23), dizziness (21), pain (19), and confusion (18). Among observations without symptom-relevant content, many reported on overall mood (92), and reference to social activities was frequent. These results demonstrate that symptoms experience can be assessed using caregiver observations, although further work may be needed to enable caregivers to provide a comprehensive assessment.

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Use of Informal Support as a Predictor of Home- and Community-Based Services Utilization

The Journals of Gerontology Series B ◽

10.1093/geronb/gbaa046 ◽

2020 ◽

Vol 76 (1) ◽

pp. 133-140

Author(s):

Kristen N Robinson ◽

Heather L Menne ◽

Raphael Gaeta

Keyword(s):

Older Adults ◽

Informal Caregivers ◽

Behavioral Model ◽

Study Data ◽

Informal Support ◽

Health Services Use ◽

Community Based ◽

Logistic Regression Models ◽

Andersen Behavioral Model ◽

Community Based Services

Abstract Objectives Home- and community-based services (HCBS) help older adults remain living safely in their homes by delaying or preventing the need for institutionalization. This analysis is guided by the Andersen Behavioral Model of Health Services Use to examine the association between informal support and use of HCBS. Method Health and Retirement Study data from 2011 and 2012 are used in the bivariate analyses and multivariate logistic regression models to examine differences in HCBS utilization among extremely vulnerable older adults who have informal caregivers and those who do not. Results For extremely vulnerable older adults who report difficulties with any instrumental or basic activities of daily living, use of HCBS is not strongly associated with access to informal caregivers. However, for this same population of extremely vulnerable older adults, those who live alone have roughly 3 times the odds of using any HCBS compared to those who do not live alone. Discussion Among already vulnerable older adults, this study revealed that living alone is an important enabling factor of the Andersen Behavioral Model as applied in HCBS research. Further investigation is needed to see if more resources should be allocated to senior centers and local providers to identify vulnerable older adults who live alone and may have unmet needs.

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