Is training for informal caregivers and their older persons helpful? A systematic review

BackgroundThe steady increase in the number of people suffering from chronic diseases and increasing life expectancy raises new demands on health care. At the same time, the need for informal caregivers is increasing. This study aims to perform a systematic review of the methodologies used to identify effect of different types of training on informal caregivers and their older persons.MethodsMEDLINE (PubMed), CINAHL and Ovid were searched from December 2016 and April 2017. The following keywords were used; "informal caregiver", "training" "elderly", older persons". Identified publications were screened by using the following inclusion criteria; systematic reviews, randomized controlled trials, prospective cohort and multicentre studies, English language full text journals, samples or interventions that included caregivers of older persons and published in last 10 years.ResultsTwenty four studies (12 randomised control trials, 8 intervention studies and 4 systematic reviews) were included. Most of the randomized controlled trials involved both caregivers and elderly. Pretests and post-tests were used in intervention studies (5 out of the 8 studies). ICT-based, psychosocial interventions on family caregivers' education program for caregivers were applied. Caregivers following a supportive educative learning had a significantly better quality of life.ConclusionsThe findings of this systematic review suggest that support interventions for caregivers can be effective in reducing caregivers' stress, with a consequent improvement of the quality of care. However, results are based on relatively small studies, reporting somewhat controversial findings supporting the need to perform further research in this field.     

Caring for the seniors with chronic illness: The lived experience of caregivers of older adults

BackgroundCaregivers of the elderly with chronic illnesses are exposed to the burden associated with their caregiving activities. This study described the lived experience of caregivers of older adults in Nigeria.MethodsA qualitative design guided by interpretive phenomenology informed the design of the research, whereby 15 in-depth interviews were conducted with caregivers of older adults with chronic illnesses. The interview sessions were audiotaped and transcribed verbatim and analysed using constant comparison analysis method.ResultsFifteen caregivers, from different parts of Osun State, Nigeria, took part in the in-depth interviews. The caregivers were aged between 19 and 70 years, ten were women, five of them had secondary education, seven were self-employed and six were in a spousal relationship. The study uncovered four interrelated themes with explanatory subthemes—commitment to preservation of life (managing challenges associated with daily routine, problem with mobility, bathing and grooming, feeding, and problem with hygiene) (ii) denial (refusal to accept that burden exists), other things suffer (disruption of family process, suffering from poor health and social isolation), (iv) reciprocity of care (pride in caregiving, caregiving as a necessity and not by choice, and law of karma).ConclusionThis study provides insight into the burden of care of older adults with chronic illness. Caregivers’ commitment to preserving life makes them provide assistance whose performance even run contrary to their own wellbeing. Intervention programme should be designed to support the caregivers thereby improving their wellbeing.     

Predictors of caregiving satisfaction in informal caregivers of people with dementia

ObjectiveThe prevalence of dementia is increasing and consequently the demands from families, institutions and healthcare system. Although a substantial amount of research on caregiving has emphasized the negative aspects of caregiving, specifically on caregiver burden and depression, less attention has been paid to the positive aspects of caregiving. The aim of the present work was to study the phenomenon of caregiving satisfaction in informal caregivers of people with dementia by assessing their likely predictors.MethodsA stress process model was used to study caregiver's satisfaction (measured using the Revised Caregiving Satisfaction Scale) on 101 informal caregivers of patients with dementia in relation to the caregiver's background and context, stress-related factors, and mediators.ResultsThe regression model has an adjusted R² of 0.20, which indicates that having a consanguinity relationship with the care recipient, suffering from lower levels of subjective burden, and managing individuals with severe cognitive impairment are the most important predictors of higher caregiving satisfaction.ConclusionInterventions focused on the enhancement of the caregiving satisfaction by increasing the understanding of the disease, should be especially addressed to caregivers without a consanguinity relationship and with high levels of subjective burden, and to those managing care recipients with mild or moderate stages of dementia.     

Systematic care for caregivers of people with dementia in the ambulatory mental health service: designing a multicentre, cluster, randomized, controlled trial

Background

Care for people with dementia and their informal caregivers is a challenging aim in healthcare. There is an urgent need for cost-effective support programs that prevent informal caregivers of people with dementia from becoming overburdened, which might result in a delay or decrease of patient institutionalization. For this reason, we have developed the Systematic Care Program for Dementia (SCPD). The SCPD consists of an assessment of caregiver's sense of competence and suggestions on how to deal with competence deficiencies. The efficiency of the SCPD will be evaluated in our study.

Methods and design

In our ongoing, cluster, randomized, single-blind, controlled trial, the participants in six mental health services in four regions of the Netherlands have been randomized per service. Professionals of the ambulatory mental health services (psychologists and social psychiatric nurses) have been randomly allocated to either the intervention group or the control group. The study population consists of community-dwelling people with dementia and their informal caregivers (patient-caregiver dyads) coming into the health service. The dyads have been clustered to the professionals. The primary outcome measure is the patient's admission to a nursing home or home for the elderly at 12 months of follow-up. This measure is the most important variable for estimating cost differences between the intervention group and the control group. The secondary outcome measure is the quality of the patient's and caregiver's lives.

Discussion

A novelty in the SCPD is the pro-active and systematic approach. The focus on the caregiver's sense of competence is relevant to economical healthcare, since this sense of competence is an important determinant of delay of institutionalization of people with dementia. The SCPD might be able to facilitate this with a relatively small cost investment for caregivers' support, which could result in a major decrease in costs in the management of dementia. Implementation on a national level will be started if the SCPD proves to be efficient.

Trial Registration

NCT00147693     

Effects of a Health and Social Collaborative Case Management Model on Health Outcomes of Family Caregivers of Frail Older Adults: Preliminary Data from a Pilot Randomized Controlled Trial

Family caregiving is an important form of informal care provided to frail, community‐dwelling older adults. This article describes a health and social collaborative case management (HSC‐CM) model that aims to optimize the support given to caregivers of frail elderly adults. The model was characterized by a comprehensive assessment to identify the caregiver's needs; a case management approach to provide integrated, coordinated, continued care; and multidisciplinary group‐based education customized to the caregiver's individualized needs. A pilot study using a randomized controlled trial study design was conducted to evaluate the effects of the HSC‐CM on caregiver burden and health‐related quality of life of family caregivers of frail elderly adults. Sixty family caregivers (mean age 61.3 ± 15.5) of frail older adults recruited from a community center for elderly adults in Hong Kong were randomly assigned to receive a 16‐week HSC‐CM intervention or usual care. Case managers who conducted a comprehensive assessment of the care dyads to identify caregiver needs using a case management approach to optimize care coordination and continuity led the HSC‐CM. These case managers served as liaisons for multidisciplinary efforts to provide group‐based education according to caregiver needs. Family caregivers who participated in the HSC‐CM had significantly greater improvement on the Caregiver Burden Index (p = .03) and on the Medical Outcomes Study 36‐item Short‐Form Survey subscales, including vitality (p = .049), social role functioning (p = .047), and general well‐being (p = .049). This study provides preliminary evidence indicating that client‐centered care, a case management approach, and multidisciplinary support are crucial to an effective caregiving support initiative. A full‐scale study is required to validate these findings.     

Complex Transitions from Skilled Nursing Facility to Home: Patient and Caregiver Perspectives

BackgroundPatients who undergo the complex series of transitions from the hospital to a skilled nursing facility (SNF) back to home represent a unique patient population with multiple comorbidities and impaired functional abilities. The needs and outcomes of patients who are discharged from the hospital to SNF before returning home are understudied in care transitions scholarship.ObjectiveTo study the patient and caregiver challenges and perspectives on transitions from the hospital to the SNF and back to home.DesignBetween 48 h and 1 week after discharge from the SNF, semi-structured interviews were performed with a convenience sample of patients and caregivers in their homes. Within 1 to 2 weeks after the baseline interview, follow-up interviews were performed over the phone.ParticipantsA total of 39 interviewees comprised older adults undergoing the series of transitions from hospital to skilled nursing facility to home and their informal caregivers.Main MeasuresA constructionist, grounded-theory approach was used to code the interviews, identify major themes and subthemes, and develop a theoretical model explaining the outcomes of the SNF to home transition.Key ResultsThe mean age of the patients was 76.6 years and 64.8 years for the caregivers. Four major themes were identified: comforts of home, information needs, post-SNF care, and independence. Patients noted an extended time away from home and were motivated to return to and remain in the home. Information needs were variably met and affected post-SNF care, including medication management, appointments, and therapy gains and setbacks. Interviewees identified independent function at home as the most important outcome of the transition home.ConclusionsPost-SNF in home support is needed rapidly after discharge from the SNF to prevent adverse outcomes. In-home support needs to be highly individualized based on a patient’s and caregiver’s unique situation and needs.Supplementary InformationThe online version contains supplementary material available at 10.1007/s11606-020-06332-w.KEY WORDS: care transitions, skilled nursing facility, home health, geriatrics     

Information Needs of Family Caregivers of Persons With Cognitive Versus Physical Deficits

This study compared information needs of caregivers of persons with dementia with caregivers of those who received rehabilitation treatment. Caregivers were provided a 48-item survey and asked to choose their top ten information needs. Dementia caregivers' (n = 33) top needs were dealing with forgetfulness/confusion (91%) and repeating questions/actions (61%) in care recipients. Rehabilitation caregivers' (n = 40) top needs were handling care recipients' mobility problems (75%) and dealing with their own stress (65%). Dementia caregivers focused on care recipients' needs related to behavioral symptoms, whereas rehabilitation caregivers focused on needs related to physical care of care recipients and their own needs.     

Content of advance care planning among Japanese elderly people living at home: A qualitative study

Purpose of studyElderly peoples’ values and preferences for end-of-life care have not yet known in details. The aim of the present study was to investigate the end-of-life wishes and decision making among Japanese elderly people who required home care services. The study was designed to qualitative research strategies, using face to face interview data recorded in nursing care records, with a focus on advance care planning.Design and methodsA total of 102 elderly people (47 males, 55 females) of 6 home care support offices in Hyogo prefecture participated.Results and implicationsWe finally extracted the following 5 themes: anxiety about the future, abandonment of control, clinging to current daily life, precarious mutual support, delegating decision-making. While elderly people living at home generally feel anxious and fearful about the future, they seemed to try to avoid thinking too seriously about possible complications in their life.They also tend to leave end-of-life decision to someone else, and their decisions tend to change as they advance in age and as their condition deteriorates. Our findings suggest that medical professionals and care managers always support their patients’ decisions, allowing for the views of the informal caregivers on whom elderly people rely for decision-making.     

Caregivers' Perceived Roles in Caring for Patients With Heart Failure: What Do Clinicians Need to Know?

BackgroundPoor self-management of heart failure (HF) is an essential contributor to poor outcomes. Caregivers are involved in the care of HF patients, but caregiver interventions intended to improve the outcomes of patients have been largely unsuccessful. Improved knowledge of caregivers' desired roles in care may improve future interventions.Methods and ResultsThis qualitative study of 20 caregivers of HF patients recruited from an academic medical center used a general inductive approach, with insights from role theory, to analyze the data. Caregivers perceived themselves as health care managers and care plan enforcers, advocates for quality of life, and experts in the lived experience of HF at home. However, they encountered role strain (expectations of role exceed ability to perform role) and role conflict (incompatible or contradictory roles) when it seemed that these roles were incompatible with those that they felt the health care system saw them in. This resulted in expressions of anger and distrust towards the health care system.ConclusionsClinicians caring for patients with HF can seek to better empower and enable this care. Involving caregivers in disease management research and assessing their roles before intervention may hold promise for enabling and empowering caregivers to improve outcomes of HF patients.     

End-of-life care of elderly patients with dementia: A cross-sectional study of family carer decision-making

BackgroundDementia syndromes pose a major worldwide challenge to public health. In terminal stage of dementia, carers are responsible for decision making in end-of-life treatment and there may be multiple factors that contribute to the choice of a palliative or invasive treatment.AimTo identify possible factors that influence the decision-making of family caregivers on implementing invasive or palliative interventions for people with end stage dementia.DesignA structured interview with family caregivers of elderly patients addressing aspects of the following categories: elderly with dementia, caregiver, medical treatment history. Statistical analysis was performed to test whether there was a significant association between the carer's decision (invasive or palliative treatment) and the collected variables.Settingand participantsThe study was conducted in three hospitals in Brazil. Participants were family caregivers of inpatients with end stage dementiaResultsMost of caregivers chose not to perform invasive procedures. The factors with the greatest association with the decision for invasive care were: elderly with tracheostomy, dementia diagnosis for less than 2 years, caregiver's age less than 50 years, history of hospital admission in the last year, affirmation that interviewee would be surprised with the death of the elderly within 1 year and the denial that health care team has already explained about treatment options.ConclusionThere were identified several factors related to the carer, the elderly person and their medical treatment that may influence the choice between palliative and invasive care for the elderly person with dementia.     

Challenges impacting on the quality of care to persons living with HIV/AIDS and other terminal illnesses with reference to Kanye community home-based care programme

HIV/AIDS has been found to be a challenging disease to humanity, its challenge spin-offs falling especially on to the caregivers of those infected and affected by the virus. This paper aims to discuss the challenges influencing the state of caregiving in the Kanye community home-based care (CHBC) programme in Botswana. The study was qualitative in design and explorative in nature, involving 82 primary caregivers in focus group discussions, and 5 CHBC nurses in individual interviews. Caregivers were found challenged by lack of community networks support, inadequate sanitary and care packages, poor shelter compromising privacy, inadequate income and food for their clients, inadequate care motivation as their volunteerism does not attract any payment, inadequate health personnel to offer psychosocial support like counselling, and an unconducive caring environment generally. Putting in place policies to redress caregivers' poverty, helping caregivers start income-generating projects, increasing community assistance and caregiving facilities are recommended as factors to address caregiver challenges.     

Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options

The objective of this study was gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in reentering the job market, and thus offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, whether training informal caregivers might help them transition into a paid caregiving or other health service role was explored. Caregivers (N = 55) of a chronically or terminally ill family member or friend in a suburban county near Chicago were interviewed. The interview guide addressed household economic effect of illness, emotional burden, and training program interest. Fifty‐six percent of caregivers were interested in training to work outside the home, caring for people in other households, 84% indicated a desire to learn more about health care, and 68% reported a desire to explore job possibilities in health care. Eighty‐two percent were experienced in working with an individual aged 50 and older. Informal caregivers' interest in a training program to bolster their qualifications for a role in the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly population and the desire of informal caregivers to find gainful employment, these informal caregivers could provide the impetus to invest in informal caregiver training.     

Frailty differences in older adults’ use of informal and formal care

ObjectivesThis study examines different combinations of informal and formal care use of older adults and investigates whether these combinations differ in terms of need for care (physical and psychological frailty) and enabling factors for informal and formal care use (social and environmental frailty).MethodsUsing cross-sectional data from the Belgian Ageing Studies (survey, N = 38,066 community-dwelling older adults), Latent Class Analysis (LCA) is used to identify combinations of informal and formal care use. Bivariate analyses are used to explore the relationship between the different combinations of care use and frailty.ResultsLatent Class Analysis (LCA) identified 8 different types of care use, which vary in combinations of informal and formal caregivers. Older adults who are more likely to combine care from family and care from all types of formal caregivers are more physically, psychologically and environmentally frail than expected. Older adults who are more likely to receive care only from nuclear family, or only from formal caregivers are more socially frail than expected.ConclusionsOlder adults with a higher need for care are more likely to receive care from different types of informal and formal caregivers. High environmental frailty and low social frailty are related with the use of care from different types of informal and formal caregivers. This study confirms that informal care can act as substitute for formal care. However, this substitute relationship becomes a complementary relationship in frail older adults. Policymakers should take into account that frailty in older adults affects the use of informal and formal care.     

Singaporean Caregivers’ Experiences of Placing a Relative into Long Term Care

ABSTRACT

Objective: Caregivers experience many difficulties and challenges with the process of providing care particularly at times of transition, such as when the care recipient moves into a nursing home. This qualitative study aims to understand caregiver experiences of this important process.

Methods: Twelve interviews were conducted with caregivers with an older relative in a nursing home in Singapore. The resulting data was analysed through thematic analysis.

Results: Five themes were identified: Filial and cultural expectations shape caregivers’ experience of pre-placement decisions and post-placement; View of the placement decision; Continued impact of caring; Engagement with the institution and Maintaining the relationship.

Conclusions: Caregivers were found to place significant emphasis on cultural values, specifically on filial piety. This impacted their caregiving role prior to placement, when making the decision to place their relative into a nursing home and in their continued involvement after placement. Despite the changing role, the placement experience was fraught with persisting difficulties involving maintaining the relationship with the resident and developing a new relationship with the nursing home.     

The importance of familiarity with caregiving for public caregiver stigma: Evidence from a cross-sectional study in Germany

ObjectivesThis study aimed to investigate the association between familiarity with caregiving and public stigma towards informal caregivers of older individuals.Material and methodsThe sample for this Online-Survey was identified using a quota-system based on German micro census data (N=1037; aged 18 years and older, living in Germany). Familiarity with caregiving was assessed by asking whether the participant has experience in or has friends or relatives with experience in informal or professional caregiving for individuals aged 65 years or older. Public caregiver stigma was assessed by analyzing the emotional, behavioral and cognitive reactions towards caregivers as described in a vignette.ResultsAdjusted regressions analyses indicated that experience in providing informal care was associated with increased appreciative feelings and statements, and decreased social distance. Experience in providing professional care was associated with increased devaluing statements. Having friends or relatives who have experience in informal caregiving was associated with decreased social distance. Having friends or relatives who have experience in professional caregiving was associated with decreased devaluing feelings, increased appreciative feelings and decreased social distance.ConclusionsResults indicate that familiarity with caregiving, through one's own informal care experience or through contact with informal or professional caregivers, reduced public stigma towards informal caregivers. Moreover, experience with informal care or contact with professional caregivers increased appreciation of informal caregivers. However, increased negative stigmatizing statements were indicated among participants with experience in professional caregiving. Fostering contact and cooperation between informal caregivers and non-caregivers, as well as with professional caregivers may help reduce stigmatizing reactions.     

Pediatric Asthma: Caregiver Health Literacy and the Clinician's Perception

Health literacy was assessed in pediatric asthma caregivers attending a university-based clinic. The medical provider's perception of caregiver health literacy was also examined. Eighty-six percent of the caregivers had adequate health literacy, 4% and 10% had marginal and inadequate health literacy, respectively. Health literacy was significantly higher for caregivers who were younger (p = 0.039) and had a higher level of education (p = 0.037). An agreement analysis revealed moderate agreement between provider perception of caregiver's health literacy and measured health literacy (Kappa = 0.51). The results suggest that medical providers may not accurately assess caregivers' actual health literacy level.     

What causes grief in dementia caregivers?

Alzheimer's disease (AD) is the most prevalent neurodegenerative disease in the world. Most AD patients become dependent on their relatives, i.e. family caregivers. Providing care to a person with AD influences caregiver's life and leads to feelings of grief, which often precede caregiver depression. The purpose of the article was to evaluate the Meuser and Marwit Caregiver Grief Inventory (MM-CGI-50) for use in Polish family caregivers and to find out determinants of grief of family caregivers of AD individuals living in Poland. A sample of 151 spouse and adult child caregivers of community-dwelling AD patients (95 females and 56 males) was interviewed to determine the influence of such factors as caregiver's age, gender, family relation to the care recipient (CR) and caregiving-related changes in caregiver's working time, leisure time and material status to find out the impact of caregiving role on intensity of caregiver grief. Caregiver grief was measured by means of MM-CGI-50. Additionally, carers were administered a questionnaire including patient's and caregiver's demographics. Also, CR's dementia assessment was informant-based and determined with investigator-administered clinical dementia rating (CDR) scale. Of all analyzed factors, only caregiver's informant dementia rating significantly influenced caregiver grief. To conclude, the effect of caregiver's age, gender, family relation to the CR and caregiving-related changes in caregiver's working time; leisure time and material status could not be found. To add, MM-CGI-50 can be effectively used to assess grief in Polish family caregivers of AD patients.     

Current Marital Functioning as a Mediating Factor in Depression Among Spouse Caregivers in Dementia

Abstract

A model of spousal caregiving was constructed in which current marital functioning was hypothesized to predict caregiver depression independent of the patient's clinical status and caregiver characteristics including burden. The sample was comprised of 96 consecutive marital dyads seeking evaluation at a university-based cognitive disorders program. The results of path analysis supported a model in which current marital functioning was significantly and independently associated with the caregiver's mental health. Specifically, spouse caregivers reporting low marital cohesion and satisfaction endorsed significantly more depressive symptoms. These findings supported the model's central premise that relational losses are discretely related to the mental health of spouse caregivers and warrant consideration in the assessment and care of spouse caregivers.