Support For Informal Caregivers Research Articles

Protocol for a randomized clinical trial: telephone-based psychoeducation and support for female informal caregivers of patients with dementia

OBJECTIVE: The burden felt by informal caregivers of patients with dementia is a source of physical, emotional, and financial problems. Face-to-face interventions for caregivers have accessibility limitations that may prevent them from receiving adequate care. Telehealth tools can be a solution to this problem. We will compare a telephone psychoeducational and support intervention protocol to usual care for informal female caregivers of patients with dementia treated at specialized outpatient clinics. METHODS: In this single-blind randomized clinical trial, the intervention group will receive one weekly call for 8 weeks that addresses issues such as disease education, communication with the patient, and problematic behaviors. The control group will receive printed material on problematic behaviors in dementia. The primary outcome will be the difference in caregiver burden between baseline and 8 weeks, which will be assessed by blinded investigators through the Zarit Burden Interview scale. Caregiver burden at 16 weeks after baseline, depression, anxiety, and quality of life at 8 and 16 weeks are secondary outcomes. CONCLUSIONS: We expect the intervention to reduce caregiver burden. These results could lead to public health programs for improving dementia care in lower-middle-income countries. Ethics and dissemination: This trial was approved by an independent ethics committee. The results will be published in an international peer-reviewed medical journal. Trial registration number: NCT03260608.

Development and evaluation of an intervention on suPpoRting infOrmal cAregivers of older people with early CogniTIVe declinE (PROACTIVE): a study protocol based on the Medical Research Council framework

IntroductionCaring for people with cognitive problems can have an impact on informal caregivers’ health and well-being, and especially increases pressure on healthcare systems due to an increasing ageing society. In...

The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study

Background: Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. Aim: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. Design: Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. Setting/participants: Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. Results: A total of 48 transcripts were analyzed. Mean age was 37 (range 19–75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care. Conclusions: The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.

Political Impediments to Aging in Place: The Example of Informal Caregiving Policy

Most Americans prefer to “age-in-place” as long as possible, but to do so often need overlapping resources—one of which is help from “formal” or “informal” caregivers (family and friends). Family and friends often want to provide care for as long as safely possible. However, informal caregiving can pose financial and physical risks to the caregiver that—as many scholars have noted—public policy in the U.S. does relatively little to mitigate. This policy shortfall also hurts care recipients since the risks that informal caregivers face can prematurely curtail their ability to provide care. Why does policy in the U.S. not better support informal caregivers? By synthesizing family caregiving research and political science research that has addressed long-term care, this paper surveys nine factors in the political system that may help answer this question. Four emanate from policy history. Three concern the mass public. Two vary at the policy level.

Effects of bibliotherapy on improving caregiving appraisal and coping among informal caregivers of people with dementia: A pilot randomized controlled trial

AbstractBackgroundThe number of people with dementia is increasing worldwide, and the majority are cared for by informal caregivers in home settings. Both positive and negative caregiving outcomes have been found among informal caregivers, the essential determinant was caregiving appraisal. Improving their caregiving appraisal is important for both the caregiver and care‐recipient’s health. However, as professional support for informal caregivers are limited, self‐help approaches are needed. Bibliotherapy, a self‐help intervention requiring minimal professional support, has been proved to be effective on improving caregiving appraisal in other populations, the effect on dementia caregivers is yet to be explored. Objectives: To explore the efficacy of bibliotherapy on improving caregiving appraisal and coping among informal caregivers of people with dementia.MethodA two arm randomized controlled trial was conducted in Zhengzhou, China. Participants were randomized to either the intervention group, receiving 8 weekly bibliotherapy sessions at home without withdrawing from usual care; or the control group, receiving usual care from the community health centers. Assessors were blinded to group allocation. Generalized estimating equation was used for data analysis.ResultsSixty participants were recruited, and 24 out of 30 participants in the intervention group finished the intervention. Bibliotherapy had significant group (Wald χ2=4.98, p=0.026), time (Wald χ 2=15.27, p<0.001) and group‐by‐time interaction effects (Wald χ2=16.51, p<0.001) on the total score of caregiving appraisal. In terms of the subscales, there were significant time effects on subjective burden (Wald χ2=8.81, p=0.003), caregiving impact (Wald χ 2=11.31, p=0.001) and caregiving mastery (Wald χ 2=11.74, p=0.001), and significant group effects on caregiving satisfaction (Wald χ 2=7.39, p=0.007). The group‐by‐time interaction was significant on all the subscales (Wald χ2=5.38‐10.89, p=0.001‐0.020). Bibliotherapy also had significant group (Wald χ2=10.93‐15.24, p<0.001), time (Wald χ 2=10.99‐33.02, p<0.001) and group‐by‐time interaction (Wald χ 2=8.91‐17.80, p=0.001‐0.003) effects on the total score of coping and the positive coping subscale. However, the effects on negative coping were not significant (Wald χ 2=0.53‐3.17, p=0.075‐0.467). No adverse events were found.ConclusionBibliotherapy had significant preliminary effects on improving caregiving appraisal and positive coping. The effect on negative coping is still limited. Future randomized controlled trials with larger sample sizes and long‐term follow‐ups are encouraged.

Digital Technology to Support Informal Caregivers: Matching The Tools to The Needs From a Sex and Gender Perspective

To gather key sex and gender considerations in the development of technologies for informal caregivers, and to develop a sex- and gender-sensitive technology evaluation tool.

Effect of the Carer Support Needs Assessment Tool intervention (CSNAT-I) in the Danish specialised palliative care setting: a stepped-wedge cluster randomised controlled trial

BackgroundThe Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improve end-of-life care support for informal caregivers. This study investigated the impact of the CSNAT-I on caregivers of...

Informal Caregivers' Roles in Dementia: The Impact on Their Quality of Life.

The constantly changing process of caring for a person with dementia affects the informal caregivers’ role due to its psychosocial impact. This cross-sectional study aimed to analyze the impact of the Person with Dementia informal caregiver’s role caregiver to a person with dementia on the self-perceived quality of life (QoL) of the caregiver. In total, 160 informal caregivers were recruited between January and December 2019. Informal caregivers’ quality of life was assessed using the European Quality of Life 5-Dimension scale, burden with the Zarit Burden Scale, emotional wellbeing using the General Health Questionnaire, and caregiver reactions using Caregiver Reaction Aspects. Patients’ cognitive impairment was assessed with the Mini-Mental State Examination, their quality of life using Quality of Life in Alzheimer’s Disease, and neuropsychiatric symptoms using the Neuropsychiatric Inventory. Outcomes were studied using the Pearson correlation coefficient and ANOVA test. Most informal caregivers’ outcomes were significantly associated with their quality of life. Male informal caregivers have a slightly better quality of life than female caregivers (p < 0.001). Caregiver burden (p < 0.001), psychological wellbeing (p < 0.001) and negative aspects of caregiving on health (p < 0.001) correlated moderately with informal caregivers’ quality of life. Factors associated with dementia, including the course of the illness and its severity with the presence of neuropsychiatric symptoms can negatively affect the informal caregiver’s role and produce a low self-perception of quality of life; thus, social and professional support for informal caregivers is essential.

Informal Caregivers' Administration of Hospice Prescribed Lorazepam to Homecare Patients With Anxiety.

A growing number of informal caregivers (IFCs) manage hospice patients' anxiety by administering lorazepam (Ativan), yet little is known about prescribing practices in home care or the extent to which IFCs carry out regimens. Data on hospice prescribed lorazepam was determined through a retrospective review of medication records from 216 deceased patients. The dose of lorazepam and type of regimen (i.e., scheduled, PRN, combination) as well as frequency with which it was administered by IFCs was calculated upon admission to a residential care home and on patients' day of death. The majority (63.1%) of patients were prescribed lorazepam on admission to the home, and more (79.5%) were prescribed lorazepam on the day of death. While higher doses of lorazepam were prescribed and administered on the day of death, the percentage of medication consumed was low on admission (17%) and day of death (27%). Nearly all (92.8%) prescribed lorazepam on the day of death were allowed PRN medication. For PRN only regimens, less than a quarter (24.4%) of patients were given lorazepam on admission with less than half (40.4%) given it while dying. Highest lorazepam administration rates (91.2%) occurred on the day of death when lorazepam was prescribed under a combined regimen. The high frequency of PRN regimens reveal that IFCs are frequently tasked with making decisions about if and when to administer lorazepam. Low overall lorazepam administration suggests a closer monitoring of lorazepam use and enhanced support of IFCs may be needed.

Integration of a palliative approach into heart failure care: a European Society of Cardiology Heart Failure Association position paper.

The Heart Failure Association of the European Society of Cardiology has published a previous position paper and various guidelines over the past decade recognizing the value of palliative care for those affected by this burdensome condition. Integrating palliative care into evidence-based heart failure management remains challenging for many professionals, as it includes the identification of palliative care needs, symptom control, adjustment of drug and device therapy, advance care planning, family and informal caregiver support, and trying to ensure a 'good death'. This new position paper aims to provide day-to-day practical clinical guidance on these topics, supporting the coordinated provision of palliation strategies as goals of care fluctuate along the heart failure disease trajectory. The specific components of palliative care for symptom alleviation, spiritual and psychosocial support, and the appropriate modification of guideline-directed treatment protocols, including drug deprescription and device deactivation, are described for the chronic, crisis and terminal phases of heart failure.

Needs of Older People Attending Day Care Centres in Poland.

Introduction: Day care centres (DCC) aim to support older adults living in their own homes by providing a variety of activities to promote the independence of those people and reduce the caregiver’s burden. In Poland, there are no standards for providing this form of care. The provided care is delivered by different organisations, and there is a lack of quality control in the majority of places. Regrettably, in Poland, there is a paucity of research on the holistic needs of the elderly attending DCC. Aim of this study: This is the first study which has aimed to identify the Polish day care centres attendees’ needs to ensure that the increasing number of older people receive the best possible care, and as a part of the quality improvement process for recommendation development of the new day care services model in Poland within the ‘Homely Marina’ project. Methods and Materials: A representative sample (n = 269) was randomly selected from day care centres attendees (estimated as 10,688) in Poland. An anonymous survey for the assessment of needs was developed by the authors. Results: The respondents assessed the level of provided services as very good or good. Best rated services included meals, supportive and welfare services (occupational therapy, music therapy, art therapy, cognitive training). Almost half of the participants indicated the need for company as the main reason to attend a DCC. This research reveals a lack of support with regard to additional staff: e.g., a nurse. Conclusions: In Poland, the services offered in DCC should focus on social isolation and sense of loneliness prevention, and maintenance of social activity of the elderly. The presented analysis of needs in Polish day care centres suggests a need for changes which may improve the quality of services. There is a great need to find a balance between home-based care and in-patient care, using better integration of available services and strengthening support for informal caregivers. Robust research with a collection of meaningful outcomes is required to ensure that in Poland, the increasing number of older people is enabled to access high-quality day care service provision.

Stakeholders' perspectives on adapting the World Health Organization iSupport for Dementia in Australia.

In Australia, informal caregivers (family, friends and neighbours) play a crucial role in supporting people with dementia to remain at home. Within the community aged care policy, informal caregivers are acknowledged as assisting with managing care. However, they usually receive very limited dementia care education and training to support them in their role. The World Health Organization (WHO) developed iSupport for Dementia, a comprehensive online dementia education and skill training programme, to address the gap in supporting informal caregivers. The aim of the study was to identify stakeholders' perspectives regarding adapting the WHO iSupport for use by informal caregivers of people with dementia in Australia. An interpretive description study design was used. Data were collected in focus groups with informal caregivers and care staff of dementia and aged care service providers conducted in May-July 2018. A thematic analysis was utilised to analyse data and identify findings. In total, 16 informal caregivers and 20 care staff participated in the study. Five themes were identified. First, informal caregivers perceived iSupport as an opportunity to provide an online one-stop shop to meet their education needs and their needs to manage care services. Second, both informal caregivers and care staff believed that an integrated caregiver network moderated by a health professional was much needed to enable informal caregivers to share learning experiences and enhance social support. Third, both informal caregivers and care staff strongly suggested that dementia and aged care service providers had a role to play in promoting the iSupport. Fourth, informal caregivers were concerned about the time commitment to participate in the iSupport programme. Finally, informal caregivers expected the iSupport to be user-friendly. Stakeholders perceived the adaptation of the WHO iSupport in Australia would strengthen informal caregiver education and optimise support for informal caregivers.

TALKING TIME: A pilot randomized controlled trial investigating social support for informal caregivers via the telephone

BackgroundCaring for people with dementia at home requires considerable time, organization and commitment. Therefore, informal caregivers of people with dementia are often overburdened. This study examined the effects of the telephone-based Talking Time intervention, which is an approach used to strengthen the psychological health-related quality of life (HRQoL) and social support of informal caregivers of people with dementia living at home.MethodsThis study was a Medical Research Council framework phase two randomized controlled trial. The intervention consisted of a preliminary talk, information booklet, six structured telephone-based support group meetings and a structured written self-evaluation of each support group meeting. The control participants performed their usual individual self-organized care. After completing the data collection, the control group received the Talking Time intervention for fidelity reasons. The primary outcome was the self-rated psychological HRQoL of the informal caregivers, which was measured with the mental component summary of the General Health Survey Questionnaire Short Form 12 (SF-12).ResultsThirty-eight informal caregivers and their relatives were included and allocated to the intervention or control groups (n = 19 each). After 3 months, the Talking Time intervention group demonstrated an increase in the self-rated psychological HRQoL scores, whereas the scores decreased in the control group. However, the standardized effect size of 1.65 (95% Confidence Interval, − 0.44 – 3.75) was not significant. Additionally, the secondary outcomes demonstrated no significant results. The differences between the groups in most outcomes were in the expected direction. No adverse effects were identified due to the intervention.ConclusionsThe Talking Time intervention is feasible and shows nonsignificant promising results with regard to the self-rated psychological HRQoL. After further adjustment, the intervention needs to be evaluated in a full trial.Trial registrationClinical Trials: NCT02806583, June 9, 2016 (retrospectively registered).

Gaps in end-of-life care and lack of support for family carers in Poland and Central Eastern Europe.

The growth of life expectancy in Central Eastern Europe and increase in the number of older people in that region are the consequences of changes in the 1990s period, connected to transition from the communism into a market economy. Central Eastern Europe is already facing consequences of fast ageing and insufficient development of state health care and social services. Those result in gaps in the provision of end-of-life care and overburden of family caregivers. This essay addresses gaps in end-of-life care, showing the development of hospice-palliative care on one side, and highlighting main problems with long-term care on the other. There is scarce support for informal caregivers and lack of cooperation between health and social care. End-of-life care is over medicalized in hospice-palliative care and hardly existing in long-term care. Dying is more a social than medical event, and as such, it should be cared for by compassionate communities, encouraging cooperation of professionals with family caregivers and society. Unfortunately, to date, there is no adequate cooperation in social dimension of end-of-life care in most of Central Eastern Europe. The social dimension of end-of-life care has to be recognized and empowered with the health promoting palliative care and introduction of compassionate communities in Central Eastern Europe.

Potential cost savings for selected non-pharmacological treatment strategies for patients with Alzheimer's disease in Finland.

To compare the costs and monetary benefits of non-pharmacological interventions for patients with Alzheimer's disease in real-world settings. A systematic review was performed to determine the most effective treatment strategies for being able to stay at home for patients with Alzheimer's disease. Care-management, family support, and multidisciplinary rehabilitation were identified as effective interventions applicable in the Finnish healthcare setting. Data on medical and social service costs, and the costs of residential care for all patients newly diagnosed with Alzheimer's disease in 2 major cities in Finland were analysed in a 4-year follow-up study. The potential cost savings of the different treatment strategies were assessed. The annual cost increased from €9,481 to €28,400 (mean per patient) during the 4-year follow-up. Cost savings were achieved in care-management, family support programmes, and rehabil-itative cognitive and social activation if the patients' transition to long-term care was delayed by 2.8, 1.8 and 43.0 days, respectively. Care-management and informal caregiver support for patients with Alzheimer's disease may benefit patients and result in concurrent cost savings. Delaying the decline in cognitive and social functioning through rehabilitation is indicated for more severe phases of Alzheimer's disease, and the costs appear to be compensated by savings in the cost of long-term care.

A Qualitative Assessment of the Living Donor Navigator Program to Identify Core Competencies and Promising Practices for Implementation.

The best strategy to increase awareness of and access to living kidney donation remains unknown. To build upon the existing strategies, we developed the Living Donor Navigator program, combining advocacy training of patient advocates with enhanced health-care systems training of patient navigators to address potential living donor concerns during the evaluation process. Herein, we describe a systematic assessment of the delivery and content of the program through focus group discussion. We conducted focus groups with 9 advocate participants in the Living Donor Navigator program to identify knowledge, skills, and abilities needed for both advocates and navigators. We focused on 2 organizational levels: (1) the participant level or the advocacy training of the advocates and (2) the programmatic level or the support role provided by the navigators and administration of the program. From 4 common themes (communication, education, support, and commitment), we identified several core competencies and promising practices, at both the participant and programmatic levels. These themes highlighted the potential for several improvements of program content and delivery, the importance of cultural sensitivity among the Living Donor navigators, and the opportunity for informal caregiver support and accountability provided by the program. These competencies and promising practices represent actionable strategies for content refinement, optimal training of advocates, and engagement of potential living donors through the Living Donor Navigator program. These findings may also assist with program implementation at other transplant centers in the future.

An Environmental Scan of Caregiver Support Resources Provided by Hospice Organizations.

Informal caregiver support programs offered by hospice organizations support the health and wellbeing of clients and caregivers. However, an understanding of the best practices for informal caregiver support programs currently undertaken across Canada remains unknown, particularly across the province of British Columbia. The aim of the present study was to describe what existing resources and supports are provided by hospice organizations for informal caregivers of persons who are nearing end of life or who are recently bereaved in British Columbia, Canada. In this descriptive study, two thirds of hospice organizations (N = 42/66; 26 urban, 16 rural) participated in a semi-structured telephone interview focused on informal caregiver support programs. All interviews were recorded, transcribed and analyzed thematically and descriptive statistics were employed. While no one-size-fit-all caregiver support program emerged as a gold standard across all hospice organizations, nearly two thirds (n = 26/42) offered one or more informal caregiver support programs. Four categories of caregiver support programs emerged from the data analysis, including companioning, bereavement and grief supports, education and service supports, and respite for caregivers. Caregiver support programs are a valuable service provided by some but not all hospice organizations across British Columbia, Canada. Future studies are needed to determine best methods for hospice organizations to formally assess caregivers' needs and to determine the success and effectiveness of such programs in support of program expansion and evaluation.

Telephone interventions, delivered by healthcare professionals, for providing education and psychosocial support for informal caregivers of adults with diagnosed illnesses.

Telephone interventions, delivered by healthcare professionals, for providing education and psychosocial support for informal caregivers of adults with diagnosed illnesses.

The Relationship with Previous Use of Community-Based Services and Informal Caregiver Support and Elderly and Informal Caregivers’ Views of Living Arrangement: Analysis of Official Statistics from 2004 to 2014

Background and Objectives: Views on living arrangement from elderly and informal caregivers are crucial to “ageing in place”. They might be related to the experience in the use of elderly care services, which remains inconclusive in previous literature. This study aimed to explore the association of previous experience in formal and informal long-term care services with views of both elderly and their informal caregivers on living arrangement. Research Design and Methods: This study adopted a cross-sectional design. Assessment records of Minimum Data Set-Home Care for community-dwelling elderly who were eligible for subsidized long-term care services in Hong Kong from 2004 to 2014 were made available. Multivariate logistic regression was applied to examine associations between both views on elder’s living arrangement from the elderly, caregivers and their previous informal caregiver support, and experience in formal care services. Results: 82,306 dyads of elderly and informal caregivers were included in the analysis. The elderly with previous use of home and community-based services (OR = 0.84, 95% CI 0.80 - 0.88) and informal caregivers (OR = 0.78, 95% CI 0.76 - 0.81) believed that the elderly should live away from home. Temporal trends of fewer elderly and caregivers supporting the idea of living away from home were also observed. Discussion and Implications: The results highlighted the importance of informal caregiver’s support and previous utilization of formal home and community-based services. It was concluded that resources and information of community-based care have a significant association with views on living at home also proper support services and training of care for the elderly should be made available to informal caregivers to reduce their burden.

What do we require from surveillance technology? A review of the needs of people with dementia and informal caregivers.

IntroductionDementia has become a major global concern and surveillance technology might provide support for informal caregivers and people with dementia. However, the needs of caregivers and people with dementia for surveillance technology have not been reviewed.MethodA scoping literature review was used to identify the needs of caregivers and/or people with dementia towards surveillance technology. Electronic database searching was undertaken on LexisNexis, PubMed, Scopus, EMBASE, MEDLINE, Cumulative Index to Nursing, Allied Health Literature, PsycINFO, Web of Science, Assistive Technology database, and Google Scholar. Eligible studies were synthesized by theme.ResultsTwenty-eight eligible studies were identified, with the majority reporting the needs of caregivers rather than people with dementia. The predominant themes for caregivers were location accuracy, and increasing the safety of the person with dementia. People with dementia wanted simple useful technology that fits within their capacity and existing routines.ConclusionsThe needs of people with dementia must be considered when designing surveillance products. Studies have mostly focused on caregivers and discount ST product requirements. Further work is required to establish effective use of surveillance technology in dementia care. Therefore, further research should cross analyze these results by examining both the needs of caregivers, and people with dementia.