Informal caregiving for relatives and friends is a common experience in mid- and later-life that creates both opportunities and challenges for mental health and well-being. Caregiving can foster experiences that are beneficial to mental health, including increased purpose and feelings of mastery, but can also lead to poor mental health, including symptoms of anxiety and depression, as well as development of wishes for death and thoughts of suicide (i.e., passive and active suicide ideation) (National Academies of Sciences and Medicine, 2021). Data suggest that these negative mental health outcomes may have been exacerbated during the COVID-19 pandemic, with family caregivers being significantly more likely to experience serious suicidal thoughts during the pandemic compared to non-caregivers (Czeisler et al., Reference Czeisler, Lane and Petrosky2020).
In this issue, Zwar et al. (Reference Zwar, König and Hajek2023) present results from a longitudinal analysis of data from the Survey of Health, Ageing, and Retirement in Europe (SHARE), with a focus on transitions into caregiving roles and the development of passive suicide ideation (thoughts of being better off dead) among adults in mid- and later-life (i.e., age 50 or older). They found increased likelihood of developing passive suicide ideation among adults who became caregivers inside the household (providing support for activities of daily living) compared to those providing care outside the household. They also found increased likelihood of developing passive suicide ideation for those living in welfare systems that provide less comprehensive supports. As well, those providing care to parents (versus partners) inside the household had greater likelihood of reporting passive suicide ideation. These results are important because they identify conditions under which passive suicide ideation is more likely to occur during the transition to caregiving. This knowledge can identify at-risk sub-groups and suggest potential mechanisms underlying the association between caregiving and increased suicide risk.
Considering these findings in the context of prior research can further highlight potential mechanisms that account for the development of suicide ideation. Articles in prior issues of International Psychogeriatrics provide excellent examples. First, findings from Zwar and colleagues (this issue) suggest that providing in-home care for activities of daily living is associated with greater risk for developing passive suicide ideation than those providing care outside the home, which may be less frequent and intensive than daily care. In-home care may be more likely to result in suicide ideation due to greater frequency of managing behavioral changes and problems in persons with dementia (or other conditions requiring care). Zwar’s results also suggest that this is most likely to be the case for caregivers without significant supports available in certain welfare states in Europe. In a prior issue of International Psychogeriatrics, Burley et al. (Reference Burley, Casey, Chenoweth and Brodaty2023) explored supports and stressors that caregivers report as impacting their ability to cope with the behavioral changes that occur in persons with dementia. They found that the presence of professional supports and clarity around how to access these supports were perceived as useful, while perceptions of stigma around dementia were harmful to their abilities to cope. Similarly, Park et al. (Reference Park, Choi and Lee2018) found that dementia caregivers’ perceptions of unmet needs in the persons they were caring for accounted for the association between greater symptoms/impairment (in persons with dementia) and reduced satisfaction with caregiving. In turn, unmet needs may increase risk for feelings of guilt among caregivers, which was found to be associated with greater depressive symptoms by Roach et al. (Reference Roach, Laidlaw, Gillanders and Quinn2013) and could underlie (at least in part) feelings of distress among caregivers studied by Giebel et al. (Reference Giebel, de Boer and Gabbay2023) who were unable to be with loved ones with dementia during physical distancing restrictions during the COVID-19 pandemic.
Integrated with prior research, findings from Zwar and colleagues suggest that caregiving among adults in mid- and later-life may be most distressing and likely to be associated with suicide ideation when caregiving demands are high and supports are low. This pattern of findings suggests a key role for social connection as a mechanism whereby caregiving may confer risk for suicide ideation. Social connection—the quantity and quality of social ties that individuals have with other people—has been shown to be associated with both caregiving stress and suicide risk (Joling et al., Reference Joling, O'Dwyer, Hertogh and van Hout2017) and thus represents a target mechanism for suicide risk reduction in this growing population. In particular, loneliness (and belonging) and perceived burden on others are experiences posited by the Interpersonal Theory of Suicide to increase risk for suicide in the near term—proximal mechanisms (Van Orden et al., Reference Van Orden, Witte, Cukrowicz, Braithwaite, Selby and Joiner2010). The role of these interpersonal mechanisms among older adults in general—and caregivers in particular—is understudied and holds potential for increasing understanding of the day-to-day (proximal) mechanisms of suicide risk in later life and in identifying malleable intervention targets to reduce risk.
Humans at all ages have a fundamental need to connect with others in positive and mutually beneficial ways, leading to a sense of belonging to meaningful relationships and groups, including family and friends (Baumeister & Leary Reference Baumeister and Leary1995; Cacioppo et al., Reference Cacioppo, Hawkley, Norman and Berntson2011). Positive social connections provide feelings of security and a means for regulating emotional distress and soothing oneself, as well as social support that exerts effects on health by bolstering people’s sense of belonging, purpose, and control (Umberson et al., Reference Umberson, Crosnoe and Reczek2010). As well, positive social relationships and the support they provide during times of stress can buffer the psychological and physiological consequences of stressors that account for the association between chronic stress and poor health/disease (Uchino, Reference Uchino2006). Indeed, dementia caregivers who report high social support appear to be buffered from negative effects of caregiving (Wang et al., Reference Wang, Ma and Han2018). Providing care for a loved one with dementia can impact all dimensions of social connection in several ways, both positive and negative (Hajek et al., Reference Hajek, Kretzler and Konig2021). First, caregiving strain occurs when caregiving introduces new social roles and responsibilities on top of existing roles and responsibilities, producing the feeling of being stretched too thin and disconnected from valued relationships and groups. Caregiving also leads to losses, including reduced time for socializing, changes in relationships with family and friends, and changes in the relationship between the caregiver and the person with dementia as the disease progresses that can lead to the loss of an important relationship. Caregiving responsibilities may also lead to relationship conflict, due to not feeling understood or supported by other family members or friends, disagreements in how care should be provided, and feelings of resentment due to difficulties leaving a dementia patient alone at home. Caregiving strain, losses, and conflict have been shown to be correlated with lower social disconnection, but few studies have examined how daily experiences of these caregiving stressors serve as proximal contributors to suicide risk throughout the day.
Building upon findings by Zwar and colleagues (and others), Dr Van Orden (author of this commentary) and colleagues at the University of Rochester Medical Center are starting a study using ecological momentary assessment with dementia caregivers to examine loneliness, belonging, and perceived burden throughout the day as proximal mechanisms whereby caregiving may increase thoughts of suicide. The study is designed to test the hypothesis that daily caregiving (stressors/benefits) will be associated with suicide ideation via changes in three indices of subjective social connection—loneliness, belonging (to family and friends), and perceptions of burden on others (e.g., due to perceived failings in the caregiving role). Subjects will be 200 dementia family caregivers (age 50+) who report significant loneliness, caregiving stress, and recent (past month) suicide ideation. The study design includes a baseline interview, 10 days of smartphone-based monitoring (caregiving stressors/benefits, subjective disconnection, suicide ideation), and 6-month follow-up interview. Interviews will characterize (and assess change in) caregiving relationships, obtain comprehensive histories of suicide ideation/behavior, and elicit information from caregivers about functional limitations of persons with dementia (care receivers). The study will also explore whether caregiver suicide ideation impacts the quality of relationships with care receivers and accelerates functional decline. This study builds upon prior work using daily diary methodologies with dementia caregivers to study suicide risk (Puga et al., Reference Puga, Wang, Rafford, Poe and Pickering2023) by focusing specifically on the role of social connection, given that it could serve as a malleable intervention target for caregivers throughout the progression of dementia.
Identifying mechanisms whereby caregiving impacts mental health and suicide risk is important given that the number of adults in mid- and later-life who will provide unpaid dementia care will continue to grow in the coming decades due to population aging. Given the growing literature documenting increased risk for suicide ideation in the context of family caregiving in the absence of sufficient supports for managing stressors, intervention studies are needed to identify the most effective and acceptable strategies to support caregivers in their roles that will in turn optimize caregivers’ emotional health and well-being and prevent suicide. Promoting social connection—to formal supports, informal supports, and meaningful relationships—is a promising strategy to promote well-being among dementia caregivers (Van Orden & Heffner, Reference Van Orden and Heffner2022) and to prevent suicide in later life (Lutz et al., Reference Lutz, Van Orden, Bruce and Conwell2021).
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Informal caregiving for relatives and friends is a common experience in mid- and later-life that creates both opportunities and challenges for mental health and well-being. Caregiving can foster experiences that are beneficial to mental health, including increased purpose and feelings of mastery, but can also lead to poor mental health, including symptoms of anxiety and depression, as well as development of wishes for death and thoughts of suicide (i.e., passive and active suicide ideation) (National Academies of Sciences and Medicine, 2021). Data suggest that these negative mental health outcomes may have been exacerbated during the COVID-19 pandemic, with family caregivers being significantly more likely to experience serious suicidal thoughts during the pandemic compared to non-caregivers (Czeisler et al., Reference Czeisler, Lane and Petrosky2020).
In this issue, Zwar et al. (Reference Zwar, König and Hajek2023) present results from a longitudinal analysis of data from the Survey of Health, Ageing, and Retirement in Europe (SHARE), with a focus on transitions into caregiving roles and the development of passive suicide ideation (thoughts of being better off dead) among adults in mid- and later-life (i.e., age 50 or older). They found increased likelihood of developing passive suicide ideation among adults who became caregivers inside the household (providing support for activities of daily living) compared to those providing care outside the household. They also found increased likelihood of developing passive suicide ideation for those living in welfare systems that provide less comprehensive supports. As well, those providing care to parents (versus partners) inside the household had greater likelihood of reporting passive suicide ideation. These results are important because they identify conditions under which passive suicide ideation is more likely to occur during the transition to caregiving. This knowledge can identify at-risk sub-groups and suggest potential mechanisms underlying the association between caregiving and increased suicide risk.
Considering these findings in the context of prior research can further highlight potential mechanisms that account for the development of suicide ideation. Articles in prior issues of International Psychogeriatrics provide excellent examples. First, findings from Zwar and colleagues (this issue) suggest that providing in-home care for activities of daily living is associated with greater risk for developing passive suicide ideation than those providing care outside the home, which may be less frequent and intensive than daily care. In-home care may be more likely to result in suicide ideation due to greater frequency of managing behavioral changes and problems in persons with dementia (or other conditions requiring care). Zwar’s results also suggest that this is most likely to be the case for caregivers without significant supports available in certain welfare states in Europe. In a prior issue of International Psychogeriatrics, Burley et al. (Reference Burley, Casey, Chenoweth and Brodaty2023) explored supports and stressors that caregivers report as impacting their ability to cope with the behavioral changes that occur in persons with dementia. They found that the presence of professional supports and clarity around how to access these supports were perceived as useful, while perceptions of stigma around dementia were harmful to their abilities to cope. Similarly, Park et al. (Reference Park, Choi and Lee2018) found that dementia caregivers’ perceptions of unmet needs in the persons they were caring for accounted for the association between greater symptoms/impairment (in persons with dementia) and reduced satisfaction with caregiving. In turn, unmet needs may increase risk for feelings of guilt among caregivers, which was found to be associated with greater depressive symptoms by Roach et al. (Reference Roach, Laidlaw, Gillanders and Quinn2013) and could underlie (at least in part) feelings of distress among caregivers studied by Giebel et al. (Reference Giebel, de Boer and Gabbay2023) who were unable to be with loved ones with dementia during physical distancing restrictions during the COVID-19 pandemic.
Integrated with prior research, findings from Zwar and colleagues suggest that caregiving among adults in mid- and later-life may be most distressing and likely to be associated with suicide ideation when caregiving demands are high and supports are low. This pattern of findings suggests a key role for social connection as a mechanism whereby caregiving may confer risk for suicide ideation. Social connection—the quantity and quality of social ties that individuals have with other people—has been shown to be associated with both caregiving stress and suicide risk (Joling et al., Reference Joling, O'Dwyer, Hertogh and van Hout2017) and thus represents a target mechanism for suicide risk reduction in this growing population. In particular, loneliness (and belonging) and perceived burden on others are experiences posited by the Interpersonal Theory of Suicide to increase risk for suicide in the near term—proximal mechanisms (Van Orden et al., Reference Van Orden, Witte, Cukrowicz, Braithwaite, Selby and Joiner2010). The role of these interpersonal mechanisms among older adults in general—and caregivers in particular—is understudied and holds potential for increasing understanding of the day-to-day (proximal) mechanisms of suicide risk in later life and in identifying malleable intervention targets to reduce risk.
Humans at all ages have a fundamental need to connect with others in positive and mutually beneficial ways, leading to a sense of belonging to meaningful relationships and groups, including family and friends (Baumeister & Leary Reference Baumeister and Leary1995; Cacioppo et al., Reference Cacioppo, Hawkley, Norman and Berntson2011). Positive social connections provide feelings of security and a means for regulating emotional distress and soothing oneself, as well as social support that exerts effects on health by bolstering people’s sense of belonging, purpose, and control (Umberson et al., Reference Umberson, Crosnoe and Reczek2010). As well, positive social relationships and the support they provide during times of stress can buffer the psychological and physiological consequences of stressors that account for the association between chronic stress and poor health/disease (Uchino, Reference Uchino2006). Indeed, dementia caregivers who report high social support appear to be buffered from negative effects of caregiving (Wang et al., Reference Wang, Ma and Han2018). Providing care for a loved one with dementia can impact all dimensions of social connection in several ways, both positive and negative (Hajek et al., Reference Hajek, Kretzler and Konig2021). First, caregiving strain occurs when caregiving introduces new social roles and responsibilities on top of existing roles and responsibilities, producing the feeling of being stretched too thin and disconnected from valued relationships and groups. Caregiving also leads to losses, including reduced time for socializing, changes in relationships with family and friends, and changes in the relationship between the caregiver and the person with dementia as the disease progresses that can lead to the loss of an important relationship. Caregiving responsibilities may also lead to relationship conflict, due to not feeling understood or supported by other family members or friends, disagreements in how care should be provided, and feelings of resentment due to difficulties leaving a dementia patient alone at home. Caregiving strain, losses, and conflict have been shown to be correlated with lower social disconnection, but few studies have examined how daily experiences of these caregiving stressors serve as proximal contributors to suicide risk throughout the day.
Building upon findings by Zwar and colleagues (and others), Dr Van Orden (author of this commentary) and colleagues at the University of Rochester Medical Center are starting a study using ecological momentary assessment with dementia caregivers to examine loneliness, belonging, and perceived burden throughout the day as proximal mechanisms whereby caregiving may increase thoughts of suicide. The study is designed to test the hypothesis that daily caregiving (stressors/benefits) will be associated with suicide ideation via changes in three indices of subjective social connection—loneliness, belonging (to family and friends), and perceptions of burden on others (e.g., due to perceived failings in the caregiving role). Subjects will be 200 dementia family caregivers (age 50+) who report significant loneliness, caregiving stress, and recent (past month) suicide ideation. The study design includes a baseline interview, 10 days of smartphone-based monitoring (caregiving stressors/benefits, subjective disconnection, suicide ideation), and 6-month follow-up interview. Interviews will characterize (and assess change in) caregiving relationships, obtain comprehensive histories of suicide ideation/behavior, and elicit information from caregivers about functional limitations of persons with dementia (care receivers). The study will also explore whether caregiver suicide ideation impacts the quality of relationships with care receivers and accelerates functional decline. This study builds upon prior work using daily diary methodologies with dementia caregivers to study suicide risk (Puga et al., Reference Puga, Wang, Rafford, Poe and Pickering2023) by focusing specifically on the role of social connection, given that it could serve as a malleable intervention target for caregivers throughout the progression of dementia.
Identifying mechanisms whereby caregiving impacts mental health and suicide risk is important given that the number of adults in mid- and later-life who will provide unpaid dementia care will continue to grow in the coming decades due to population aging. Given the growing literature documenting increased risk for suicide ideation in the context of family caregiving in the absence of sufficient supports for managing stressors, intervention studies are needed to identify the most effective and acceptable strategies to support caregivers in their roles that will in turn optimize caregivers’ emotional health and well-being and prevent suicide. Promoting social connection—to formal supports, informal supports, and meaningful relationships—is a promising strategy to promote well-being among dementia caregivers (Van Orden & Heffner, Reference Van Orden and Heffner2022) and to prevent suicide in later life (Lutz et al., Reference Lutz, Van Orden, Bruce and Conwell2021).
Conflict of interest
None.
Source of funding
This paper was supported by a grant from the National Institute on Aging to Dr Van Orden (R01AG082882, PI, Van Orden).