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. Author manuscript; available in PMC: 2025 Sep 1.
Published in final edited form as: J Popul Ageing. 2022 Aug 16;17(3):649–674. doi: 10.1007/s12062-022-09387-1

Health Outcomes of Elder Orphans: An Umbrella and Scoping Review of the Literature

Regina Roofeh 1,2, Dylan M Smith 3, Lauren Hale 3, Sean A P Clouston 3
PMCID: PMC11407751  NIHMSID: NIHMS1843482  PMID: 39295635

Abstract

Objectives:

As the population of elder orphans grows, little research has investigated the health outcomes of these socially and physically isolated older adults without caregiving support. Umbrella and scoping reviews were performed for studies examining health outcomes of older adults experiencing elements of elder orphanhood.

Methods:

Studies published 2010- June 2021 and indexed on PubMed, Web of Science, CINAHL, Medline, or SocINDEX were eligible. Results of included studies were examined both by individual category and overall to determine overlapping outcomes.

Results:

Umbrella review returned 1,686 studies, with 14 meeting criteria for social isolation (n=10) and physical isolation (n=4). The scoping review of studies examining unmet caregiving need returned 3,741 results: five met inclusion criteria.

Discussion:

Included studies reviewed differing health outcomes in older adults, with a focus on dementia, frailty, and healthcare utilization. Further studies are needed that appraise targeted policies and interventions to improve health outcomes of elder orphans.

Keywords: Elder orphan, umbrella review, social isolation, physical isolation, caregiving need

Introduction

Approximately 26% of older adults need assistance with household or self-care tasks (National Academies of Sciences Engineering and Medicine, 2016). Elder Orphans, older adults who are socially or physically isolated and who have unmet caregiving needs, are a vulnerable and growing population in the United States (US). Carney et al. describes this population as “aged, community-dwelling individuals who are socially and/or physically isolated, without an available known family member or designated surrogate or caregiver” (Carney et al., 2016). While many older adults may experience social isolation, physical isolation, or have unmet caregiving needs, it is their combined presence that distinguishes an older adult as an elder orphan. In our prior work, we used the National Health and Aging Trends Study to estimate that elder orphans comprised 2.62% of the US older adult population in 2011, with an additional 21.29% of older adults at risk for becoming an elder orphan (Roofeh et al., 2020). This group fits all the qualifications for elder orphanhood, with the exception that they continue to live with their spouse. Despite the growing literature surrounding the experiences of elder orphans, including investigation of their advance care planning needs and thoughts on the term “elder orphan,” study of their health and determination of adverse health outcomes that could be associated with elder orphan status remains limited (Montayre et al., 2019; Thaggard & Montayre, 2019).

Developing an understanding of the state of the literature surrounding the characteristics of elder orphan status will set a baseline of knowledge and identify areas of study that can be implemented to improve visibility for this potentially growing population. These characteristics, including social isolation, physical isolation, and limited caregiving help, have been previously studied individually and found to have varying health effects. For example, the health effects of social isolation in older adults are well represented in the literature and has been associated with increased risk of falls, dementia, cardiovascular disease, and other morbidities that contribute to increased healthcare utilization and mortality (Leigh-Hunt et al., 2017). Although often coexisting, physical isolation and homebound status is distinct from social isolation and can occur for older adults who have difficulty leaving home independently, regardless of the number or quality of their social relationships. Physical isolation and homebound status in older adults have been associated with increased risk of mortality, medication non-compliance, and higher healthcare utilization (Cohen-Mansfield et al., 2010; Musich et al., 2015). While the health effects of caregiving – for both the caregiver and care recipient – are well studied, the literature surrounding health outcomes for older adults who do not have caregivers is limited (Adelman et al., 2014). This population of older adults who do not have available caregiving support may be at increased risk for adverse health outcomes if they experience a health event where caregiving is required.

Although the concept of an “elderly orphan” was first noted in 1994 and the term “elder orphan” was first used in 2005, targeted studies of this population using this term have only recently begun to emerge in the literature after the recurrence of the term in 2016 (Carney et al., 2016; Soniat & Pollack, 1994; Varner, 2005). In recent years, the term “elder” has been replaced by “older adult” to refer to those over age 65 and additional terms, including “unbefriended older adult” and “kinless older adult”, have developed roughly concurrently to describe older adults without available caregivers or surrogates (Farrell et al., 2017; Lundebjerg et al., 2017; Margolis & Verdery, 2017). Although these three terms describe similar populations of older adults, they have distinct and nuanced definitions. “Kinless older adult” refers primarily to older adults without kin (e.g., spouse, children, siblings) to act as a caregiver or surrogate (Margolis & Verdery, 2017). “Unbefriended older adult” has the added distinction that an older adult has lost their decision-making capacity and does not have an advanced directive or surrogate to make decisions in their place (Farrell et al., 2017). “Elder Orphan” refers to older adults who do not have caregivers or surrogates and who are also socially and/or physically isolated (Carney et al., 2016). As the search strategy for this study relied on the term “elder orphan” and the definition provided by Carney et al., we continue to use “elder orphan” where necessary for clarity but have also used alternative terms where possible.

The aim of this study is to synthesize the current understanding of the health outcomes associated with the characteristics of elder orphanhood through an umbrella review of systematic reviews and meta-analyses referencing social isolation, physical isolation, older adults with unmet caregiving needs, and those who are aging alone. This review will rely upon the foundation of literature surrounding social isolation, physical isolation, and caregiving needs as individual concepts and attempt to identify areas of overlap to provide a holistic and novel view of the potential health outcomes of elder orphanhood.

Methods

Umbrella Review for Social Isolation, Physical Isolation, and Unmet Caregiving Need

Umbrella Study Design and Eligibility Criteria.

Sometimes referred to as a “review of reviews”, the method of umbrella reviews is used to provide a high-level understanding of a widely studied topic that can include qualitative and quantitative results from only reviews, including systematic, integrative, scoping reviews or meta-analyses (Aromataris et al., 2020). The areas of social isolation and physical isolation in older adults have been a valuable focus of investigation, resulting in a variety of studies and systematic reviews in the literature. The method of an umbrella review was chosen to incorporate the results of these systematic reviews and examine any trends across reviews for each component of elder orphanhood. While less studied than social isolation and physical isolation, the component of unmet caregiving need was also included in the umbrella review search to ensure full coverage of the literature.

The umbrella review was conducted in three sections matching the three main characteristics for elder orphanhood (social isolation, physical isolation, absence of caregivers). Searches were conducted in PubMed, Web of Science, CINAHL, Medline, and SocINDEX to identify systematic or scoping reviews, meta-analyses, or meta-syntheses examining the health outcomes of any of the three characteristics of elder orphanhood in older adults. Results were filtered by English language and publication year of January 2010 through June 2021. Search terms included indication for population of interest (older adult, elder, aging alone, or aging in place) and category of interest (social isolation or loneliness; physical isolation or homebound; lack of caregiv*, kinless, or unbefriended) (Supplemental Table 1).

Eligibility criteria included systematic or scoping reviews, meta-analyses, or meta-syntheses, with a focus social isolation, physical isolation, or unmet caregiving need and any physical or mental health concern as outcome of interest in older adults. Any condition relating to the physical (e.g. frailty, falls, cardiovascular disease, cancer), mental (e.g. depression, anxiety) or cognitive (e.g. dementia, cognitive decline) health of older adults were eligible for inclusion. Although there can be challenges with self-reported data in cases of participant poor mental health and cognitive decline, reviews that incorporated studies using self-reported data were included in the umbrella review if they were of sufficient methodological quality.

Studies examining interventions for social isolation, physical isolation, or unmet caregiving need or studies for interventions of health outcomes were excluded. These studies focused on the impact of the intervention in reducing social isolation, physical isolation, unmet caregiving needs, or their related health outcomes, rather than estimating the prevalence/severity of the health outcomes. Also excluded were studies examining the health outcomes of caregivers and those who receive care from informal caregivers. Although existing literature on elder orphans are based on samples age 65 years an older, a minimum age of study participants was not defined as part of the inclusion criteria, as many adults can experience the effects of aging younger than the traditional definition of 65 years (Carney et al., 2016; Montayre et al., 2019; Roofeh et al., 2020; Thaggard & Montayre, 2019). The main methodology, search strategy, and eligibility criteria were agreed upon by all authors prior to search, data extraction, and quality assessment.

Data Extraction and Quality Assessment.

Three separate searches were performed for each database in June 2021, comprising the three characteristics for elder orphanhood. Results were examined together during initial title and abstract review to ensure removal of duplicates and placement within the most appropriate category. Data extraction and quality assessment of included studies followed the guidelines for umbrella reviews established by the Joanna Briggs Institute (JBI) using the JBI Critical Appraisal Checklist (Aromataris et al., 2020). Records were evaluated based on search strategy, systematic record assessment, and review methodology using a scale from 0–11 points, with higher scores indicating higher quality. Prior to the quality assessment, a cutoff minimum of 6 points was set for study inclusion. The JBI Critical Appraisal Checklist assesses included studies to ensure that reviews were performed with an appropriate search strategy and data extraction methods, applied appropriate criteria, synthesized results reasonably, and were free of potential publication bias. The structured literature search, data extraction, and quality assessment were performed by the lead author with review by all authors. Reporting for this review is structured using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (Page et al., 2021).

Scoping Review for Unmet Caregiving Need

Scoping Review Study Design and Eligibility Criteria.

As none of the studies returned for the caregiving section of the umbrella review met criteria, an additional, separate scoping review was performed for caregiving. Similar to the methods of umbrella reviews, scoping reviews are designed to include the breadth of information available on a particular topic. Scoping reviews are distinct in that they synthesize results from any type of study available on a topic, including reviews, meta-analyses, or primary studies (Peters et al., 2020). As the available literature on the health effects of unmet caregiving needs in older adults was expected to be limited, the scoping review methodology was chosen to capture all available peer-reviewed literature.

Searches for this scoping review were conducted in the same databases to identify any records relating to the health outcomes of older adults who do not have family or friends to act as caregivers or surrogates. As caregiving can be provided by a variety of sources, results were not limited to kin-only caregivers. Results were filtered using the same criteria as the umbrella review (English language and publication date from January 2010 – June 2021), with the exception that any peer-reviewed record could be included. Search terms were also the same for population of interest and caregiving need (Supplemental Table 2). Except for expanded publication type, eligibility criteria remained the same. A meta-analysis of studies was not performed because of the small number of studies returned and the heterogeneity of study designs and health outcomes of the studies included.

Results

Umbrella Review

Overall Database Search Results.

The aim of this umbrella review and subsequent scoping review was to examine the current literature surrounding the health outcomes related to the main components of elder orphan status, including social isolation, physical isolation, and lack of caregiving support. To estimate the potential health effects of being an elder orphan the reviews for each component were performed separately and areas of overlap in health outcomes were highlighted.

A total of 1,686 results were returned spanning the social isolation, physical isolation, and unmet caregiver need searches (Figure 1). After removal of duplicates, 1,095 records were reviewed and 1,034 were excluded based on title and/or abstract. Three records could not be retrieved, and full text review was completed for 58 records. Of these, 44 records were excluded for the following reasons: did not focus on social isolation, physical isolation, or unmet caregiving need (n=14), did not focus on any health outcome (n=13), not a systematic or scoping review, meta-analysis, or meta-synthesis (n=11), review of interventions (n=5), and study population not exclusive to older adults (n=1). A total of 14 records met criteria and were included for review. These records were split and reviewed as addressing social isolation (n=10), physical isolation (n=4), or unmet caregiver need (n=0). Because of the minimal records found for physical isolation, records that were not exclusively focused on physical isolation but included physical isolation as an explanatory factor and analyzed it separately were included in the review (Besora-Moreno et al., 2020).

Fig. 1.

Fig. 1

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Flow diagram of umbrella search results for social isolation, physical isolation, and caregiving needs in older adults

Studies meeting inclusion criteria were assessed for methodological quality using the JBI Critical Appraisal Checklist. This checklist assigns 0–11 points per review and a minimum of six points was used as a cutoff for study inclusion. All reviews that met inclusion criteria for the social isolation or physical isolation categories earned a minimum of six points on the JBI Critical Appraisal Checklist, with all but two scoring nine points or above. A critical appraisal checklist was not used for the studies included in the scoping review, as they were of varying methodology and there is not yet a standard critical appraisal checklist for scoping reviews.

Social Isolation.

Characteristics and findings of included systematic reviews and meta-analyses examining social isolation and related health outcomes in older adults are outlined in Table 1. Of the 10 studies included, four were systematic reviews, one was a meta-analysis, three were mixed systematic review and meta-analysis, and two were scoping reviews. All reviews included scored moderate (six of 11 possible points) to high (11 of 11 possible points) in methodological quality and all reviews set a participant age minimum of 50 years for included studies. Four measured social isolation and loneliness via objective measures, five used subjective measures and self-report, and one used both forms of measurement. Each of the 10 included studies examined a different health outcome in older adults, spanning cognitive function, suicidal ideation, sleep disturbances, depression, fatigue, general health outcomes, dementia, frailty, falls, and healthcare utilization.

Table 1.

Characteristics and findings of included systematic reviews and meta-analyses examining social isolation and related health outcomes in older adults

Reference Type of Review Number of Studies (participants) Explanatory Variable Health Outcome Results
Boss et al., 2015 Systematic 10 Loneliness (self-report via Likert scales) Cognitive function (verbal reasoning, global/executive function) Negative association with loneliness and global cognitive function/general cognition.
Some correlation between loneliness and verbal fluency
Chang et al., 2017 Meta-Analysis 31 (203,152) Structural (marital status, social network) and functional (perceived loneliness, social support) Late life suicidal ideation Overall Increased suicidal ideation in older adults with discordant social relationships (OR=1.57)
Increased suicidal ideation with perceived loneliness (OR=2.24), perceived poor social support (OR=1.59)
Choi et al., 2015 Systematic Sleep disturbance: 6
Depression: 8
Fatigue: 2		 Subjective and objective isolation; loneliness Sleep Disturbances
Depression
Fatigue		 Sleep disturbance: Social isolation and loneliness increases sleep disturbances
Depression: Social isolation and loneliness associated with depressive symptoms
Fatigue: Social support lessened severity of fatigue; lack of social support played important role in explaining fatigue
Courtin & Knapp, 2017 Scoping 128 Social isolation or loneliness General health outcomes (depression, cardiovascular health, quality of life) Loneliness is an independent risk factor for depression
Persistence of depression was partially explained by social isolation
Loneliness/social isolation associated with cardiovascular disease risk
Loneliness and social isolation have adverse effects on physical and mental health in old age
Evans et al., 2019 Systematic: 65
Meta-Analysis: 51 (102,035)		 Social isolation (social network contact, social engagement/activity) Cognitive decline (global/executive cognitive function, memory) Significant association between social activity and improved cognitive outcomes. Larger social networks and engagement in social activity has small contribution to prevent poor cognitive function
Some association between social isolation and cognitive function, but studies were small and similar
Kuiper et al., 2016 Systematic: 43
Meta-Analysis 30 (19 structural [26,614], 8 functional [5,368], 7 both [14,027])		 Social relationships (social network size, social activity level) Longitudinal cognitive decline Poor social relationships associated with higher risk of cognitive decline, but strength of this association and importance of different aspects of social relationships is unclear
Lara et al, 2019 Systematic: 11
Meta-Analysis: 8 (37,339)		 Loneliness (perceived social isolation or subjective loneliness) Longitudinal development of dementia or mild cognitive impairment Loneliness associated with increased risk of dementia (RR=1.26
Mehrabi & Béland, 2020 Scoping 26 (64,959) Measurement for loneliness and/or social isolation Frailty
Other health outcomes		 Frailty: Some association between social isolation / loneliness and frailty, but direction is unclear
Loneliness and social isolation may have a moderator role on path from frailty to health
Other health outcomes: Sparse evidence for relationship between social isolation and health outcomes
Petersen et al., 2020 Systematic 17 (72,065) Social isolation, loneliness, or living alone Falls Significant association with social isolation and higher loneliness scores, though direction of association unclear
Significant association with living alone, and living with other people reduced number of falls
Valtorta et al., 2018 Systematic 126 (226,678) Social relationships (via objective availability of others, perceptions of relationships, or multidimensional measure) Healthcare utilization (physician visits, ED use, hospital admissions, and length of stay) Strong association between multidimensional measure of social relationships and early hospital readmission. Smaller social network was associated with longer hospital stays
Evidence did not indicate that those with weaker social networks had higher than needed use of ambulatory care
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Four studies had some overlap around cognitive function. Although these reviews could not be statistically combined, all trended toward evidence of positive association between cognitive decline and poor social relationships or loneliness. Two studies used subjective measurements of social isolation and loneliness and two used objective measures. A systematic review of studies that used self-reported loneliness to measure components of cognitive function in older adults determined a negative association between loneliness and global cognitive function and general cognition (Boss et al., 2015). Similarly, Lara et al. used self-reported perception of loneliness and determined an increased risk of dementia (Lara et al., 2019). These findings align with results of studies using objective measures of social relationships to measure longitudinal cognitive decline. A systematic review and meta-analysis determined that poor social relationships were associated with higher risk of longitudinal cognitive decline, although the strength of the association and relative importance of different social relationships is unclear (Kuiper et al., 2015). Further, a systematic review and meta-analysis by Evans et al. examined objective measures of social isolation on general cognitive decline and determined a significant positive association between social activity and improved cognitive outcomes, but larger social networks and social engagement only had a small contribution to prevent poor cognitive function (Evans et al., 2019).

Three studies used both subjective and objective measures of social isolation to assess mental health outcomes in older adults. Using both types of measures for isolation and loneliness, a systematic review of sleep disturbances, depression, and fatigue in older adults determined that social isolation and loneliness were associated with an increase in depression and sleep disturbances, while the presence of social support lessened the severity of fatigue (Choi et al., 2015). Consistently, a meta-analysis using objective measures of structural and functional social isolation to assess late life suicidal ideation in older adults determined that discordant social relationships, perceived loneliness, and perceived poor social support were associated with overall increased suicidal ideation (Chang et al., 2017). Because of the reciprocal nature between isolation and depression, the included studies were unable to fully distinguish the causal direction of these associations. A scoping review by Courtin and Knapp assessed general health outcomes associated with subjective measures of social isolation and loneliness, including cardiovascular health, general quality of life, and depression (Courtin & Knapp, 2017). This study determined that social isolation and loneliness were positively associated with cardiovascular disease risk and general adverse outcomes in physical and mental health of older adults. Additionally, this review determined that loneliness was an independent risk factor for depression and persistence of depression was partially explained by social isolation.

Valtorta et al. reviewed studies using objective measures of social relationships to assess outcomes related to healthcare utilization (Valtorta et al., 2018). This study determined a strong negative association between social relationships and sooner hospital readmission after hospitalization and those with smaller social networks having increased hospital length of stay. Interestingly, there was no indication that those with weaker social networks had higher than needed use of ambulatory care, meaning socially isolated adults did not use healthcare services as a means of social interaction.

Two reviews acknowledged the relationship between social isolation and falls or frailty but were unable to determine its place in the causal pathway. A scoping review using subjective measures of social isolation and loneliness to assess frailty in older adults, determined an association between frailty and social isolation and/or loneliness but suggested that social isolation and/or loneliness could be a moderator along the path from health to frailty, rather than a fully causal factor (Mehrabi & Béland, 2020). An additional study using subjective measures of social isolation and loneliness in a systematic review of falls in older adults determined that falls had a significant positive association with social isolation, increased loneliness scores, and living alone, but the authors note that the direction of the pathway remains unclear (Petersen et al., 2020).

Physical Isolation.

Table 2 outlines characteristics and findings of included systematic reviews and meta-analyses examining physical isolation and related health outcomes in older adults. Three of the four studies combined systematic reviews and meta-analyses, and the fourth study was an integrative review. All studies rated at least nine of 11 points for methodological quality on the JBI Critical Appraisal Checklist. Two studies used living alone as the explanatory variable, with one study using homebound status and one study including living alone among other variables. All studies used at least a minimum participant age of 50 years as inclusion criteria. The health outcomes addressed in these reviews included malnutrition, incident dementia at follow up, frailty, and need for and access to non-primary health services (dental, nutrition, vision, pharmacy, and psychiatry services).

Table 2.

Characteristics and findings of included systematic reviews and meta-analyses examining physical isolation and related health outcomes in older adults

Reference Type of Review Number of Studies (participants, if noted) Explanatory Variable Health Outcome Results
Besora-Moreno et al., 2020 Systematic: 40
Meta-Analysis: 16 (61,818)		 Socioeconomic factors (marital status, living alone) Malnutrition / risk of malnutrition Significant relationship between malnutrition and living alone (OR=1.92), single relationship status (OR=1.73)
Older adults who ate with other people consumed more calories than those who ate alone
Desai et al., 2020 Systematic Meta-Analysis 12 Living alone at baseline Incident dementia at follow up Individually, few studies indicated significant risk of dementia
Pooled data determined a significant risk of incident dementia associated with living alone (RR=1.3)
Population attributable fraction determined that 8.9% of cases of incident dementia were attributable to living alone
Kojima et al., 2020 Systematic: 50
Meta-Analysis: 44
Cross Sectional (113,374); 6 Longitudinal (38,549)		 Living alone Frailty status Older adults living alone were significantly more likely to be frail, but not necessarily more likely to develop frailty
Older men living alone significantly more likely to be frail
Sterling-Fox, 2019 Integrative 10 Homebound status Need and access to: dental, nutrition, vision, pharmacy, psychiatry services Poor diet, dental care, polypharmacy, and vision decline are prevalent among homebound older adults.
Barriers to accessing care include physical limitations, poverty, finances, insurance, medical condition
Barriers to dental and vision care include difficulty communicating, fear of falling, embarrassment, perceived unimportance of care, local logistical barriers
Homebound older adults need, but often do not have access to, dental, optical, and psychological services.
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Three of the four studies that met inclusion criteria for physical isolation used living alone as the explanatory variable related to their chosen health outcome. A systematic review and meta-analysis of studies examining older adults living alone at baseline assessed incident dementia at follow up (Desai et al., 2020). While few of the individual studies reviewed indicated significant increased risk of dementia, the pooled results of the meta-analysis determined an increased risk of dementia, with a population attributable fraction of 8.9% of cases in the pooled data attributable to living alone. Another systematic review and meta-analysis of studies used living alone as the explanatory factor and focused on frailty in the older adult participants, with pooled results indicating that older adults who live alone were more likely to be frail, but not necessarily more likely to develop frailty over time (Kojima et al., 2020). A systematic review and meta-analysis by Besora-Moreno et al. did not focus exclusively on older adults who lived alone but did analyze this population separately and determined a significant relationship between living alone, single relationship status and increased malnutrition (Besora-Moreno et al., 2020).

An integrative review of studies of homebound older adults assessing their need for and access to non-primary health services determined that homebound older adults often experience poor diet and dental care, vision decline, and polypharmacy, but face barriers to accessing care for these needs (Sterling-Fox, 2018). These barriers often stem from physical limitations in leaving the home, but also include difficulties in communication, finances, embarrassment, and perceived unimportance of care. While homebound older adults do not necessarily live alone, this study aligns with the results of the review by Besora-Moreno et al. in demonstrating that older adults who experience a form of physical isolation are at increased risk of poor diet and malnutrition.

Unmet Caregiving Need.

There were no results returned for systematic reviews focusing on health outcomes of older adults with unmet caregiving needs. Although this alone is an important result, an additional scoping review was performed to locate any studies regarding health outcomes of older adults without caregivers currently in the literature.

Scoping Review

Overall Database Search Results.

A total of 3,741 results were returned for the secondary scoping review of studies relating to older adults who have unmet caregiving needs (Figure 2). After removal of duplicates, 2,792 records were reviewed and 2,752 were excluded based on title and/or abstract. Two records could not be retrieved, and full text review was completed for 38 records. Of these, 33 records were excluded for the following reasons: perspective on how to care for those without caregivers (n=20), lacked health outcomes (n=7), inclusion of perspective of caregiver (n=5), and age distribution too young (n=1). A total of five records met criteria and were included for review. Because of the minimal records found for older adults without caregivers, two records that were not exclusively focused on older adults or those without caregivers but included older adults without caregivers and analyzed them separately were included (Adamuz et al., 2020; Berglund et al., 2019). While the remaining three studies focused on older adults and were mindful of older adults without caregivers in their design, older adults without caregiving resources only made up a portion of the overall included samples.

Fig. 2.

Fig. 2

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Flow diagram of scoping search results for literature regarding older adults who have unmet caregiving needs

Unmet Caregiver Need.

Characteristics and findings of included studies examining health outcomes of older adults without caregivers are outline in Table 3. Design types for these studies included retrospective medical chart review, surveys, nested cohort studies, and secondary data analyses. Presence of an unfulfilled caregiving need was determined either through subjective indication from the participant or objective measures of presence of spouses and children. Participant age was noted for all included studies. Two studies using the Health and Retirement Survey (HRS) reported a minimum participant age of 50 years. Three studies reported either a median or average participant age of 50 years or older. Health outcomes examined focused primarily on the participant’s interaction with healthcare services, including reported avoidance of medical care, placement in a skilled nursing facility, location of death, and in-hospital adverse events. One study examined longitudinal time to mortality for participants.

Table 3.

Characteristics and findings of included studies examining caregiving need and related health outcomes in older adults

Reference Type of Study Sample Type and Age Explanatory Variable Health Outcome Results
Adamuz et al., 2020 Case control retrospective chart review Hospitalized patients in a public hospital in Catalonia, Spain
Median Age: 67 years		 Lack of caregiver support In hospital adverse events, pressure ulcers, falls, aspiration pneumonia, or mortality Patients without caregiving support represented 3% of the sample
Lack of caregiving support was independently associated with in hospital adverse events and mortality
Berglund et al., 2019 Survey Random selection of Swedish national population registry (age range 16–84)
Average Age: 50.7 years		 Lack of instrumental support Avoidance of medical care Medication non-adherence Respondents without instrumental social support represented 5% of sample
More likely to avoid seeking medical care (crude OR=2.98, remaining significant with adjustment) and be non-adherent with medication (crude OR=2.86, remaining significant with adjustment)
Blackburn et al., 2018 Nested cohort study using matched Medicare data REasons for Geographic and Racial Differences in Stroke (REGARDS) Study Average Age: 77 years Indication that participant could identify someone to caregiving, if needed Placement in skilled nursing facility (SNF) after stroke Participants unable to identify a caregiver represented 19.1% of the population
When stratified by sex, at 5-year follow up men unable to identify a caregiver had increased risk of SNF placement (HR=3.15)
Patterson et al., 2020 Secondary data analysis Health and Retirement Study
50 years or older		 Family embeddedness (presence of partners, children, or siblings) Time to mortality Respondents with no partner or children represent 6.8% of the sample and have an increased mortality risk (HR=1.48)
Respondents with no partner, children, or siblings represent 1% of sample and have an increased mortality risk (HR=1.79)
Plick et al., 2021 Secondary data analysis Health and Retirement Study 51 years or older Kinlessness, defined as not having a spouse or children Location of death (as a proxy for high-intensity EOL treatment) Kinless participants represented 7.4% of the sample Kinless were not significantly more likely to die in hospital
Kinless were significantly more likely to die in SNF and less likely to die at home
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While all the reviewed studies included and analyzed older adults with unmet caregiving needs, none of the studies focused on this population exclusively. A retrospective chart review used the lack of caregiver support as a domain of care complexity, which represented 3% of the overall study sample (Adamuz et al., 2020). This study determined that patients without caregiving support were at increased risk for in-hospital mortality and hospital based adverse events, including pressure ulcers, falls, and aspiration pneumonia. Similarly, Berglund et al. identified that 5% of respondents to a randomly selected survey of the Swedish National Population Registry self-reported lack of instrumental social support (Berglund et al., 2019). These respondents were more likely to avoid seeking medical care and were more likely to be non-adherent to recommended medication use.

The study by Blackburn et al. included the highest sample portion of older adults who could not identify a caregiver, if needed, at 19.1% (Blackburn et al., 2018). Male participants in the subset of the sample were at increased risk for long term placement in a skilled nursing facility at 5-year follow up after initial occurrence of stroke.

Both Patterson et al. and Plick et al. performed a secondary data analysis on the Health and Retirement Study and both used the presence of partners or children as the measure of unmet caregiving support, with Patterson et al. also including the presence of siblings (Patterson et al., 2020; Plick et al., 2021). Patterson et al. analyzed this data to examine differences in time to mortality for this population, and determined that those with no partner or children and those with no partner, children, or siblings all were at increased risk for mortality (Patterson et al., 2020). Plick et al. examined a similar subset of the sample, but only included those who did not have a spouse or children, to assess the location of death (Plick et al., 2021). Their analysis determined that this population was not at increased risk for in-hospital mortality but were at increased risk for dying in a skilled nursing facility, and not dying at home. These results are a diversion from the in-hospital mortality outcomes presented by Adamuz et al. but are potentially more accurate due to population and data collection methods available to the HRS, as compared to those available to a retrospective chart review.

Discussion

The initial umbrella review examined 14 reviews and meta-analyses focused on the health outcomes of older adults experiencing social or physical isolation and the subsequent scoping review examined five studies focused on the health outcomes of older adults may have unmet caregiving needs. The included studies considered a variety of health outcomes and overlapped in the study of dementia, frailty, and healthcare utilization.

Figure 3 diagrams the area of overlap in health outcomes found for social isolation, physical isolation, and unmet caregiving need. Physical isolation and unmet caregiving needs were both associated with decreased preventative healthcare utilization. Both social and physical isolation presented an increased risk of dementia in older adults, with one study reporting a direct population attribution fraction for incident dementia to physical isolation (Desai et al., 2020). Social and physical isolation were also associated with increased risk of frailty in older adults, although the time course of this relationship remains unclear. Healthcare utilization and interaction with healthcare institutions were at least partially addressed in relation to social isolation, physical isolation, and unmet caregiving needs, spanning use and access to preventative care through need for long term placement in a skilled nursing facility.

Fig. 3.

Fig. 3

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Diagram of overlap of health outcomes of Social Isolation, Physical Isolation, and Caregiver Need. Solid purple line indicates an increase in that outcome in older adults experiencing that explanatory factor and orange dashed line indicates a decrease in the health outcome

Although these studies are not suitable to be statistically combined, the overlap in results does provide an area of focus for potential increased health risks elder orphans may experience. While the overlap in studies for health outcomes often occurred between two of the three potential contributors to elder orphanhood, the addition of the third contributor may introduce areas of added complication. For example, studies focusing on social isolation and physical isolation both determined a longitudinal increased risk of dementia (Desai et al., 2020; Lara et al., 2019). If the lack of a caregiver or surrogate is an added factor, as it would be for elder orphans, this could introduce an area of increased risk in the care and health outcomes of the older adult. While elder orphans in the healthcare setting are often independent older adults, they are at risk for becoming unbefriended older adults (i.e. older adults without surrogates or advanced directives and who lack capacity to provide informed consent) if they lose their decision making capacity (Farrell et al., 2017; Montayre et al., 2018). This population of older adults is at higher risk for state guardianship, skilled nursing facility residence, and trouble meeting basic care needs (Catlin et al., 2021). In response to this risk, some kinless older adults who are mindful of their vulnerable status have built informal support networks and made advance planning arrangements (Montayre et al., 2019; Thaggard & Montayre, 2019).

Relatedly, the literature surrounding frailty in older adults is still determining the course of relationship between isolation and frailty. The combination of the reviewed studies suggests that those who are either physically or socially isolated are more likely to be frail. While the study of social isolation was unable to determine where social isolation fell on the causal pathway to frailty, a longitudinal review of those who are physically isolated determined that frailty was not more likely to develop over time (Kojima et al., 2020; Mehrabi & Béland, 2020). Regardless of the pathway to frailty, older adults who experience frailty will likely need family or friends to provide caregiving support (Lee et al., 2018). For those who do not have caregivers, development of frailty could lead to continued worsening health and nursing home placement (Kojima, 2018).

Healthcare utilization and interaction with healthcare institutions was one area of overlap between all three contributors to elder orphanhood and may serve as an indicator for areas of increased risk for elder orphans. Both physical isolation and unmet caregiver needs were associated with underutilization of preventative care services, particularly around medication adherence. While there was indication of increased rates of polypharmacy for homebound older adults, there was also indication that those without caregivers are more likely to be non-adherent with medication use and avoid seeking medical care (Berglund et al., 2019; Sterling-Fox, 2018). This combination could lead to adverse health outcomes for older adults, with social isolation posing additional barriers to health while living in the community. These contributors to elder orphanhood can also lead to poor health outcomes once an older adult is hospitalized. The combined studies reviewed suggest than this population may be at increased risk for adverse events and longer hospital stays, rapid readmissions, and placement in a skilled nursing facility after discharge (Adamuz et al., 2020; Plick et al., 2021; Valtorta et al., 2018). Additionally, those without caregivers may be at increased risk for long-term placement and death in a skilled nursing facility (Blackburn et al., 2018; Plick et al., 2021).

Limitations

Although umbrella reviews are a valuable method to gather an expansive view of the literature available for a particular topic, they also face limitations in control of methods and scope. The major limitation for this study is the scope of conclusions that can be made from the results of the review. This study compiles the extensive literature surrounding social isolation, physical isolation, and unmet caregiving need, but cannot fully describe if there is a compounding effect or interaction between these components of elder orphanhood. Further studies are needed to determine how these components are related or interact with each other. An additional limitation is the minimal number of studies that focus on older adults without caregivers. The initial umbrella review of this variable returned no results and the subsequent scoping review returned only studies that included those without caregivers as a small portion of the study population. While some relevant results could be pulled from these studies, more widespread and focused study on older adults without caregivers is needed.

Directions for Future Study

Both social isolation and physical isolation are common areas of study for both their effects on older adults and interventions on how to mitigate those effects. Further studies to determine how social isolation and physical isolation interact would be valuable, particularly for those who have unmet caregiving needs.

The scarcity of studies concentrating on older adults without caregivers may be indicative of a larger phenomenon within the older adult’s interaction with the healthcare and research environment. Inclusion of older adults in research may often require the assistance of a caregiver or surrogate to facilitate participation, even when the older adult has the capacity to provide their own consent. For older adults experiencing cognitive decline or capacity limitations, the facilitation and consent of a legal surrogate becomes essential for the older adult’s participation in research. This may result in older adults without needed caregivers being less likely to participate in research that is not designed with inclusion criteria and methods that are mindful of this population.

Based on the results of the umbrella and scoping reviews for older adults with unmet caregiving needs, future studies for this population could focus on the provision of support and intervention prior to the older adult’s interaction with resource-intensive healthcare institutions like hospitals and skilled nursing facilities. It is estimated that primary care physicians, and geriatricians in particular, encounter older adults without caregivers or surrogates frequently and may serve as an introductory mechanism for this population of older adults to connect with needed resources and provide interventions for unmet caregiving needs (Farrell et al., 2019). Future studies should attempt to engage this population of older adults while they remain in the community to build a better understanding of their health status, risks, and preferences for care. This engagement may help to guide interventions to keep this population safe in the community for longer. As the United States relies heavily on caregiving provided by family and friends, providing comprehensive resources in the community to those who do not familial support may be a mechanism to improve health outcomes and allow this population to remain in the community safely (National Alliance for Caregiving (NAC) & AARP Public Policy Institute, 2020).

Additionally, in light of efforts by kinless older adults to establish advance care planning documents, studies to assess their broader interaction with healthcare institutions, particularly related to placement in skilled nursing facilities and receipt of goal-concordant care, would be beneficial to target interventions and policies for this population. Due to the acknowledged barriers for inclusion of older adults without caregivers in human-subjects research, secondary data analysis of larger data sets may serve as a proxy measure to estimate health outcomes of those who fit elder orphan criteria.

Conclusion

As the population of older adults expands, the literature surrounding their health outcomes and contributors to health will continue to grow. Currently, the literature regarding social and physical isolation in older adults is robust, but there is minimal research that includes older adults who have unmet caregiving needs. Although this umbrella and scoping review of the literature provides a valuable baseline for the current understanding of the potential health outcomes related to these components of elder orphanhood, the health outcomes described are approximate based on the available literature and cannot incorporate elements of overlap between these components. In particular, the lack of studies focused on older adults with unmet caregiving needs highlights a significant gap in the literature that should be addressed to meaningfully direct future studies.

Overall, the research reviewed provides guidance for next steps and potential intervention targets for older adults experiencing social or physical isolation but does not have sufficient evidence on how unmet caregiving needs would interact with efficacy of any intervention. Interventions for older adults experiencing social isolation or physical isolation are diverse in both setting and participant engagement, ranging from in-person social interaction to individual-level intervention, and have recently expanded to include technological methods (Fakoya et al., 2020). While these interventions may be valuable for independent older adults or older adults with caregivers who can facilitate participation, there is a risk that the benefit of the intervention would not be accessible to older adults with unmet caregiving needs. Barriers in accessibility, both physical and technological, are possible for older adults with unmet caregiving needs and interventions for social or physical isolation may require additional routes for inclusion. Targeting and inclusion of older adults without caregivers as populations of interest is essential for determining whether an intervention is valuable for the health and well-being of this population.

Supplementary Material

Supplemental Tables

Funding

Sean A. P. Clouston, PhD, was funded by the National Institute on Aging (NIH/NIA RF1 AG058595)

Footnotes

Declarations

Conflicts of Interest

The authors have no relevant financial or non-financial interests to disclose.

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