Giving voice to informal caregivers of community-dwelling older adults: A systematic review of empowerment interventions.

Taking care for older adults can place informal caregivers at risk for developing health problems. Therefore, interventions aiming to empower informal caregivers have been developed. Empowerment refers to a health promotion process including strategies to improve informal caregivers' self-care behaviours, stress-management and caregiving skills. In literature, empowerment-oriented interventions often target subsamples of informal caregivers defined through the care receiver's condition. These interventions, however, do not adequately capture the complexity of care needs and might even exclude informal caregivers taking care for older people without a specific diagnosis or with a subthreshold condition. Therefore, the aim of this systematic review is to provide an overview of the content and effectiveness of empowerment-oriented interventions directed at informal caregivers of community-dwelling older adults. Following the PRISMA guidelines, a systematic review was performed by searching the following databases: PubMed, PsycINFO, EMBASE and Web of Science. From a total of 6798 unique publications, 13 intervention studies, of which seven randomised controlled trials, were eligible for inclusion. According to the Mixed Methods Appraisal Tool, eight studies scored poor. The intervention studies under review represented different domains of empowerment, with cultivation of positive feelings being the most prevalent one. Social participation and physical health received little attention in interventions. Although no adverse intervention effects were observed, the studies reported mixed results with 57 positive and 47 neutral effects. The limited number and poor quality of studies emphasise the need for future research investigating the effectiveness of empowerment-oriented interventions targeting informal caregivers of older adults.

Social Participation in the Daily Lives of Frail Older Adults: Types of Participation and Influencing Factors.

OBJECTIVES: The advantages of social participation for older adults are well established and have been adopted in aging policy frameworks. However, little is known about the social participation of frail older adults. This research examined the types of social interaction of very frail older adults and the factors influencing this participation. METHOD: Interviews with 38 very frail older adults were analyzed using Levasseur and colleagues' (Levasseur, Richard, Gauvin, & Raymond (2010). Inventory and analysis of definitions of social participation found in the aging literature: Proposed taxonomy of social activities. Social Science and Medicine (1982), 71, 2141-2149) taxonomy activity levels of involvement with others. A qualitative hybrid approach with inductive and deductive thematic analyses was used. RESULTS: Participants often disengaged from activities with high involvement with others, preferring activities with less involvement. Low-key participation emerged as an important type of social participation enabling frail older adults to remain engaged in society. Key factors that influenced social participation were functional decline, and the physical (e.g., traffic, the disappearance of local stores) and social environment (e.g., social networks and the presence of meeting places such as community centers). DISCUSSION: Findings advance our knowledge and recognition of the different ways frail older adults participate in society. Despite their frailty, older adults wish to stay socially active. Focusing on the social environment in the frameworks and policies of Age-Friendly Cities and Communities will benefit these individuals.

Meanings of Care Convoys: The Structure, Function, and Adequacy of Care Networks Among Frail, Community-Dwelling Older Adults.

Researchers propose that the convoy of care model should be used to study care networks of frail, older individuals. Care convoys are defined as the evolving collection of individuals who may or may not have close personal connections to the recipient or to one another, but who provide care, including help with activities of daily living (ADLs) and instrumental activities of daily living (IADLs), socio-emotional care, skilled health care, monitoring, and advocacy. This study reports on community-dwelling older adults' experiences of their care convoy, how care convoys change over time, and perceived (positive) outcomes. A qualitative analysis among 65 semi-structured interviews with frail, community-dwelling older adults demonstrates a great variety in the composition of care convoys. Participants were often actively involved in their care convoy and valued the social/relational aspect of care. Care and support covered a wide range of activities, with some activities being provided by specific types of caregivers. Participants expressed the adequacy of their care convoy in terms of satisfaction and sufficiency. Noteworthy, participants who were satisfied with their care convoy did not necessarily receive sufficient help. Policies and practice should recognize the relational aspect of care, the complex interplay between all actors, and the dynamic character of care convoys.

Relational aspects of mastery for frail, older adults: The role of informal caregivers in the care process.

Frail, older care recipients are often thought of as individuals with a decreased mastery of everyday life skills. Various authors have proposed to acknowledge a relational dimension of mastery, defined as the ability to maintain control over one's life with the help of others. This study explores how frail, older adults experience relational aspects of mastery and the role of their informal caregivers in maintaining these aspects of mastery over the care process. Qualitative interviews (N = 121) were conducted in 2016 with potentially frail, community-dwelling older adults participating in the Detection, Support and Care for Older people: Prevention and Empowerment (D-SCOPE) project. A secondary analysis of 65 interviews reveals that, according to frail, older adults, informal caregivers contribute in various ways to the preservation of their mastery. This differs across the four elements of care: caring about (attentiveness), taking care of (responsibility), care-giving (competence), and care-receiving (responsiveness). However, in some cases, older adults experienced a loss of mastery; for example, when informal caregivers did not understand their care needs and did not involve them in the decision, organisation, and provision of care. A relational dimension of mastery needs to be acknowledged in frail, older care recipients since stimulating mastery is a crucial element for realising community care objectives and person-centred and integrated care.

The Social Environment's Relationship With Frailty: Evidence From Existing Studies.

Increasingly, policymakers assume that informal networks will provide care for frail older people. While the literature has mainly discussed the role of the family, broader social networks are also considered to be important. However, these social networks can diminish in later life. This systematic review investigates whether the social environment increases the risk of frailty or helps to prevent it. Findings from 15 original studies were classified using five different factors, which denoted five dimensions of the social environment: (a) social networks, (b) social support, (c) social participation, (d) subjective neighborhood experience, and (e) socioeconomic neighborhood characteristics. The discussion highlights that the social environment and frailty are indeed related, and how the neighborhood dimensions and social participation had more consistent results than social support and social networks. Conclusively, recommendations are formulated to contemplate all dimensions of the social environment for further research examining frailty and community care.

Access to care of frail community-dwelling older adults in Belgium: a qualitative study.

AIM: This paper aims to identify barriers that frail community-dwelling older adults experience regarding access to formal care and support services. BACKGROUND: Universal access to healthcare has been set by the World Health Organisation (WHO) as a main goal for the post-2015 development agenda. Nevertheless, regarding access to care, particular attention has to be paid to the so-called vulnerable groups, such as (frail) older adults. METHODS: Both inductive and deductive content analyses were performed on 22 individual interviews with frail, community-dwelling older adults who indicated they lacked care and support. The coding scheme was generated from the conceptual framework '6A's of access to care and support' (referring to work of Penchansky and Thomas, 1981; Wyszewianski, 2002; Saurman, 2016) and applied on the transcripts. FINDINGS: Results indicate that (despite all policy measures) access to a broad spectrum of care and support services remains a challenge for older people in Belgium. The respondents' barriers concern: 'affordability' referring to a lot of Belgian older adults having limited pensions, 'accessibility' going beyond geographical accessibility but also concerning waiting lists, 'availability' referring to the lack of having someone around, 'adequacy' addressing the insufficiency of motivated staff, the absence of trust in care providers influencing 'acceptability', and 'awareness' referring to limited health literacy. The discussion develops the argument that in order to make care and support more accessible for people in order to be able to age in place, governments should take measures to overcome these access limitations (eg, by automatic entitlements) and should take into account a broad description of access. Also, a seventh barrier (a seventh A) within the results, namely 'ageism', was discovered.

Interventions for frail community-dwelling older adults have no significant effect on adverse outcomes: a systematic review and meta-analysis.

BACKGROUND: According to some studies, interventions can prevent or delay frailty, but their effect in preventing adverse outcomes in frail community-dwelling older people is unclear. The aim is to investigate the effect of an intervention on adverse outcomes in frail older adults. METHODS: A systematic review and meta-analysis of Medline, Embase, the Cochrane Library, and Social Sciences Citation Index. Randomized controlled studies that aimed to treat frail community-dwelling older adults, were included. The outcomes were mortality, hospitalization, formal health costs, accidental falls, and institutionalization. Several sub-analyses were performed (duration of intervention, average age, dimension, recruitment). RESULTS: Twenty-five articles (16 original studies) were included. Six types of interventions were found. The pooled odds ratios (OR) for mortality when allocated in the experimental group were 0.99 [95% CI: 0.79, 1.25] for case management and 0.78 [95% CI: 0.41, 1.45] for provision information intervention. For institutionalization, the pooled OR with case management was 0.92 [95% CI: 0.63, 1.32], and the pooled OR for information provision intervention was 1.53 [95% CI: 0.64, 3.65]. The pooled OR for hospitalization when allocated in the experimental group was 1.13 [95% CI: 0.95, 1.35] for case management. Further sub-analyses did not yield any significant findings. CONCLUSION: This systematic review and meta-analysis does not provide sufficient scientific evidence that interventions by frail older adults can be protective against the included adverse outcomes. A sub-analysis for some variables yielded no significant effects, although some findings suggested a decrease in adverse outcomes. TRIAL REGISTRATION: Prospero registration CRD42016035429 .

Randomized controlled trial to evaluate a prevention program for frail community-dwelling older adults: a D-SCOPE protocol.

BACKGROUND: Frail community-dwelling older adults, whom might experience problems regarding physical, cognitive, psychological, social and environmental factors, are at risk for adverse outcomes such as disability, institutionalization and mortality. People in need of help do not always find their way to care and support services and are left undetected. The aim of the D-SCOPE project is to detect frail community-dwelling older adults who previously went unnoticed and to improve their access to care and support. Goal is to increase their frailty-balance, quality of life, meaning in life, life satisfaction, mastery, community inclusion and ageing well in place. METHODS/DESIGN: The study is a prospective, longitudinal randomized four-armed controlled trial with follow-up at 6 months. The study group aims to include 900 community-dwelling older adults aged 60 years and over from 3 municipalities in Flanders (Belgium). While selecting the study group, risk profiles for frailty will be taken into account. Participants will be randomly selected from the census records in each municipality. Data will be collected prospectively at baseline (T0) and at follow-up, 6 months after baseline (T1). At baseline, participants who are at least mild frail on one of the 5 domains of frailty (CFAI-plus) or feel frail based on the subjective assessment of frailty will be randomly assigned to (1) the study group or (2) the control group. A mixed method design with the inclusion of quantitative and qualitative data analyses will be used to evaluate the efficacy and experiences of the detection and prevention program on frailty. DISCUSSION: The study will contribute to an innovative vision concerning the organization of care and support, and a timely and accurate detection and support of community-dwelling older adults at risk for frailty. TRIAL REGISTRATION: This trial was registered at ClinicalTrials.gov, on May 26, 2017, identifier: NCT03168204 .

Frailty differences in older adults' use of informal and formal care.

OBJECTIVES: This 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). METHODS: Using 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. RESULTS: Latent 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. CONCLUSIONS: Older 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.

Detecting frail, older adults and identifying their strengths: results of a mixed-methods study.

BACKGROUND: The debate on frailty in later life focuses primarily on deficits and their associations with adverse (health) outcomes. In addition to deficits, it may also be important to consider the abilities and resources of older adults. This study was designed to gain insights into the lived experiences of frailty among older adults to determine which strengths can balance the deficits that affect frailty. METHODS: Data from 121 potentially frail community-dwelling older adults in Flemish-speaking Region of Belgium and Brussels were collected using a mixed-methods approach. Quantitative data were collected using the Comprehensive Frailty Assessment Instrument (CFAI), Montreal Cognitive Assessment (MoCA), and numeric rating scales (NRS) for quality of life (QoL), care and support, meaning in life, and mastery. Bivariate analyses, paired samples t-tests and means were performed. Qualitative data on experiences of frailty, frailty balance, QoL, care and support, meaning in life, and mastery were collected using semi-structured interviews. Interviews were subjected to thematic content analysis. RESULTS: The "no to mild frailty" group had higher QoL, care and support, meaning in life, and mastery scores than the "severe frailty" group. Nevertheless, qualitative results indicate that, despite being classified as frail, many older adults experienced high levels of QoL, care and support, meaning in life, and mastery. Respondents mentioned multiple balancing factors for frailty, comprising individual-level circumstances (e.g., personality traits, coping strategies, resilience), environmental influences (e.g., caregivers, neighborhood, social participation), and macro-level features (e.g., health literacy, adequate financial compensation). Respondents also highlighted that life changes affected their frailty balance, including changes in health, finances, personal relationships, and living situation. CONCLUSION: The findings indicate that frailty among older individuals can be considered as a dynamic state and, regardless of frailty, balancing factors are important in maintaining a good QoL. The study investigated not only the deficits, but also the abilities, and resources of frail, older adults. Public policymakers and healthcare organizations are encouraged to include these abilities, supplementary or even complementary to the usual focus on deficits.

Identifying frailty risk profiles of home-dwelling older people: focus on sociodemographic and socioeconomic characteristics.

OBJECTIVES: This paper investigates risk profiles of frailty among older people, as these are essential for detecting those individuals at risk for adverse outcomes and to undertake specific preventive actions. Frailty is not only a physical problem, but also refers to emotional, social, and environmental hazards. METHODS: Using data generated from the Belgian Ageing Studies, a cross-sectional study (n = 28,049), we tested a multivariate regression model that included sociodemographic and socioeconomic indicators as well as four dimensions of frailty, for men and women separately. RESULTS: The findings indicated that for both men and women, increased age, having no partner, having moved house in the previous 10 years, having a lower educational level and having a lower household income are risk characteristics for frailty. Moreover, when looking at the different frailty domains, different risk profiles arose, and gender-specific risk characteristics were detected. DISCUSSION: This paper elaborates on practical implications, and formulates a number of future research recommendations to tackle frailty in an aging society. The conclusion demonstrates the necessity for a thorough knowledge of risk profiles of frailty, as this will save both time and money and permit preventive actions to be more individually tailored.