How strong is the impact of the disease itself?

Compared to non-care-givers (Goren et al., Reference Goren, Montgomery, Kahle-Wrobleski, Nakamura and Ueda2016, Laks et al., Reference Laks, Goren, Duenas, Novick and Kahle-Wrobleski2016) and informal care-givers of individuals without dementia (Ory et al., Reference Ory, Hoffman, Yee, Tennstedt and Schulz1999; Mafullul and Morriss, Reference Mafullul and Morriss2000; Moon and Dilworth-Anderson, Reference Moon and Dilworth-Anderson2015), care-givers of PwD experienced decreased work productivity, more care-giving–work conflicts or they stopped working. The subtype of dementia, the care recipient's stage of disease (Schäufele et al., Reference Schäufele, Köhler, Teufel, Weyerer, Schneekloth and Wahl2008, Reference Schäufele, Köhler, Hendlmeier and Suhr2016; Mould-Quevedo et al., Reference Mould-Quevedo, Tang, Harary, Kurzman, Pan, Yang and Qiao2013), the level of dementia-related impairments in general (e.g. Moore et al., Reference Moore, Zhu and Clipp2001; Small et al., Reference Small, McDonnell and Papadopoulos2002; Michalowsky et al., Reference Michalowsky, Thyrian, Eichler, Hertel, Wucherer, Flessa and Hoffmann2016) or the need for supervision during the day in particular (Webb and Harrison Dening, Reference Webb and Harrison Dening2016) conflicted with the care-giver's work-life, leading to reduced work hours followed by lost earnings. Therefore, caring for PwD implies an emotional, social and financial burden on care-givers, as a consequence of its restricting influence on their employment. However, this also depends on the individual characteristics of the care recipient, their care-givers and how they organise the care. For example, according to the literature, managing the care of individuals with severe cognitive impairment can foster care-giving satisfaction (de Labra et al., Reference de Labra, Millán-Calenti, Buján, Núñez-Naveira, Jensen, Peersen, Mojs, Samborski and Maseda2015) and lead to personal growth among care-givers (Leipold et al., Reference Leipold, Schacke and Zank2006; Ott et al., Reference Ott, Sanders and Kelber2007; Shim et al., Reference Shim, Barroso, Gilliss and Davis2013). It is possible that these developments can also positively affect the work-life of the care-givers, as the few neutral or even positive employment-related outcomes demonstrated.

The finding that patients’ ethnicity influenced the risk of reduced employment in a US sample (Covinsky et al., Reference Covinsky, Eng, Lui, Sands, Sehgal, Walter, Wieland, Eleazer and Yaffe2001) points to cultural aspects of care-giving. These are also important in terms of the relationship between informal care and care-givers’ working. We consider this aspect in the next section by discussing the impact of a care-giver's ethnicity.

Notably, we cannot entirely quantify the impact of the disease itself, as well as the direction of causality, due to the included study designs. The quantitative studies quoted above are cross-sectional. Further research should be prospective and include care-givers of individuals with and without dementia, to compare both groups and to determine causality.

Which conditions favour or detract from care-giving and concurrent employment?

First, the socio-demographic factors identified in our study on informal care-givers for PwD are in line with the results of previous studies on informal care-givers in general. These studies concluded that socio-demographic factors are likely associated with less labour force participation, or workplace adjustments of informal care-givers in general (Lilly et al., Reference Lilly, Laporte and Coyte2007). Additionally, in informal care-givers of PwD, employment rates vary by age. Namely younger care-givers are more frequently gainfully employed than older care-givers. Gender differences were considered in several studies focusing on care-giving in general, where, in particular for women, a negative impact on employment was reported (e.g. Arber and Ginn, Reference Arber and Ginn1995; Wakabayashi and Donato, Reference Wakabayashi and Donato2005; Lilly et al., Reference Lilly, Laporte and Coyte2007; Viitanen, Reference Viitanen2010; Bauer and Sousa-Poza, Reference Bauer and Sousa-Poza2015). Notably, the majority of care-givers are female (Colombo et al., Reference Colombo, Llena-Nozal, Mercier and Tjadens2011). The reason for this gender difference may be their own conceptions, or gendered cultural and societal expectations, of caring for people in need such as children, elderly or disabled persons (Erol et al., Reference Erol, Brooker and Peel2015). Conceptions and expectations must also be considered in light of the history and structure of their family (Gröning and Kunstmann, Reference Gröning, Kunstmann, Bauer and Gröning2008). Female care-givers experience career disadvantages more often (Ruiz-Adame Reina et al., Reference Ruiz-Adame Reina, González-Camacho, Romero-García and Sánchez-Reyes Fernández2017), and we showed that this also extends to informal female care-givers of PwD. We note that the presented findings related to socio-demographic factors should be cautiously considered as interaction effects may exist. For instance, care-givers’ gender may influence the employment status, but a possible interaction effect of age can be assumed based on two studies included in this review (Cavallo and Fattore, Reference Cavallo and Fattore1997; Schäufele et al., Reference Schäufele, Köhler, Hendlmeier and Suhr2016). Due to the assumed interrelations among gender, age and kinship, future research should examine the relationship between informal care-giving and employment by taking all potential influencing factors into account. This is all the more critical if further growth in the number of people who balance employment with other roles, such as care-giving, is expected due to increasing employment rates of older persons and women (Kröger and Yeandle, Reference Kröger and Yeandle2013). With respect to income, our review reveals a result specific to dementia. Families with higher incomes are more likely to spend more time absent from work (Wilson et al., Reference Wilson, Van Houtven, Stearns and Clipp2007). Contradictory results, namely care-givers with low income being more absent from work, were found by a previous review that focused on care-giving in general (Lilly et al., Reference Lilly, Laporte and Coyte2007). However, the authors indicated that the impact was not solely related to care-giving, but, instead, was a common effect that can also be observed in the general population. Therefore, the conclusion that high-earning dementia care-givers are more likely to perform fewer work hours should be viewed as preliminary, and further research is recommended. We note that working care-givers in this US sample were older female spouses of veterans with dementia (who thus benefited from pensions for veterans) and were not representative of the general US population (Wilson et al., Reference Wilson, Van Houtven, Stearns and Clipp2007).

Care-giving-specific factors that enhance the adverse employment-related effects in care-givers include a close relationship, co-residence with the PwD, and being the primary care-giver or having more burdensome care-giver commitments (Lilly et al., Reference Lilly, Laporte and Coyte2007; Bauer and Sousa-Poza, Reference Bauer and Sousa-Poza2015). These factors also apply to care-givers of PwD (e.g. Covinsky et al., Reference Covinsky, Eng, Lui, Sands, Sehgal, Walter, Wieland, Eleazer and Yaffe2001; Bakker et al., Reference Bakker, de Vugt, van Vliet, Verhey, Pijnenburg, Vernooij-Dassen and Koopmans2013; Michalowsky et al., Reference Michalowsky, Thyrian, Eichler, Hertel, Wucherer, Flessa and Hoffmann2016). Again, interaction effects should be considered. Here, possible interrelations may occur among relationship, co-residence and care-giving intensity. Spousal care-givers living with the PwD often bear the care-giver responsibilities on their own if no other engaged care-giver lives nearby (Michalowsky et al., Reference Michalowsky, Thyrian, Eichler, Hertel, Wucherer, Flessa and Hoffmann2016). However, shared care-giving responsibilities between a spouse and a child of a PwD can relieve the affected household and maintain employment opportunities (Covinsky et al., Reference Covinsky, Eng, Lui, Sands, Sehgal, Walter, Wieland, Eleazer and Yaffe2001). Even after ruling out the endogeneity of the care-giving intensity, care-giving has a deterrent effect on a care-giver's employment, and this effect is mainly seen in the primary care-giver (Nguyen and Connelly, Reference Nguyen and Connelly2014). Additionally, in our review, evidence indicated that more hours of care-giving per day, and the duration of care-giving, led to a reduction of work in care-givers of PwD (Wilson et al., Reference Wilson, Van Houtven, Stearns and Clipp2007; Bakker et al., Reference Bakker, de Vugt, van Vliet, Verhey, Pijnenburg, Vernooij-Dassen and Koopmans2013). This finding is consistent with some studies focusing on care-giving in general, but contradicts others. For instance, if the caring responsibilities exceed ten hours per week, care-givers were more likely to reduce their work hours or to withdraw from the labour market (Lilly et al., Reference Lilly, Laporte and Coyte2007). On the other hand, Carr et al. (Reference Carr, Murray, Zaninotto, Cadar, Head, Stansfeld and Stafford2016) found no evidence of an association between the hours of care provided and exit from employment for both women and men. However, women who are responsible for high-intensity care (i.e. exceeding ten hours per week) are more likely to stop working over time than non-care-givers (Carr et al., Reference Carr, Murray, Zaninotto, Cadar, Head, Stansfeld and Stafford2016). In order to draw clear conclusions, further research is needed to clarify the association between the intensity of dementia care-giving and possible career disadvantages.

The burden of informal care-givers is one of the most well-studied outcome variables (Merrilees, Reference Merrilees2016). Burden also affects the work-life of employed care-givers. Psychological burdens such as role overload, worries and depression cause absence from work and conflicts at work (Edwards et al., Reference Edwards, Zarit, Stephens and Townsend2002; Dunham and Dietz, Reference Dunham and Dietz2003; Wilson et al., Reference Wilson, Van Houtven, Stearns and Clipp2007). Beyond this, perceived care-giving–work conflicts exert a significant influence on the burden of care-givers of PwD. Concurrent chronic illnesses of care-givers may exacerbate the situation (Wang et al., Reference Wang, Robinson and Carter-Harris2014). To prevent care-givers’ burden, dementia care-givers can derive benefit from leisure social activities (Schüz et al., Reference Schüz, Czerniawski, Davie, Miller, Quinn, King, Carr, Elliott, Robinson and Scott2015). Taking leave from care-giving is another common strategy to manage the burden (de la Cuesta-Benjumea, Reference de la Cuesta-Benjumea2011). To this end, working offers an opportunity because employment provides both a reprieve from care-giving and fulfilment (Eldh and Carlsson, Reference Eldh and Carlsson2011). Nevertheless, the experience of care-givers depends on internal factors such as resilience, self-efficacy, coping strategies and how they evaluate their responsibilities (Merrilees, Reference Merrilees2016). Employment may mean an additional strain, or a counterbalance for the care-giving burden at home. Based on the provided evidence of this review, care-givers of PwD who have high attentional control and seek formal support can experience fewer role conflicts (Morimoto et al., Reference Morimoto, Furuta, Kono and Kabeya2019). Moreover, they can gain positive work experiences (Edwards et al., Reference Edwards, Zarit, Stephens and Townsend2002) despite their perceived and evident strain from combining care-giving and working. Ties to other colleagues or clients at the workplace promote social participation of care-givers, which can positively influence their wellbeing (Cannuscio et al., Reference Cannuscio, Colditz, Rimm, Berkman, Jones and Kawachi2004; Nay et al., Reference Nay, Bauer, Fetherstonhaugh, Moyle, Tarzia and McAuliffe2015). Being capable of managing both roles enhances the satisfaction and happiness of care-givers in general (Eldh and Carlsson, Reference Eldh and Carlsson2011; van Campen et al., Reference van Campen, de Boer and Iedema2013). Care-givers of PwD also stated that working is a refuge from the demands of care-giving (Harris, Reference Harris1998; Dunham and Dietz, Reference Dunham and Dietz2003; Kohler et al., Reference Kohler, Döhner, Kofahl and Lüdecke2012). For some women, the reduced value of work is an enrichment that re-aligns the balance between work and family life (Kohler et al., Reference Kohler, Döhner, Kofahl and Lüdecke2012).

To summarise, socio-demographic factors have no specific relevance for care-givers of PwD, as they can also be observed in care-givers of persons without dementia as well as in the general population. However, care-giving-specific factors, in particular the intensity of care, apparently lead to greater career disadvantages among care-givers of PwD. Studies measured the intensity of care as the relational and local closeness to the care recipient, e.g. Covinsky et al. (Reference Covinsky, Eng, Lui, Sands, Sehgal, Walter, Wieland, Eleazer and Yaffe2001). Future studies should consider the time-commitment aspect of care-giving in greater depth, which can be permanent, as well as the availability and presence of all potential care-givers. Additionally, the interdependence between dementia care-giver burden and conflicts based on other responsibilities should be considered. Furthermore, informal care-giving should be seen in light of the cultural or religious background of those involved. In this review, we identified only one study (Kosberg et al., Reference Kosberg, Kaufman, Burgio, Leeper and Sun2007) that considered care-giver's ethnicity, which found no statistically significant influence on care-givers’ employment status. Another study found that the patient's ethnicity had a significant impact on the care-giver's employment status (Covinsky et al., Reference Covinsky, Eng, Lui, Sands, Sehgal, Walter, Wieland, Eleazer and Yaffe2001). Since care-giving dyads’ ethnicities and culture may influence dementia care-giving and care-givers’ outcomes such as burden (Etters et al., Reference Etters, Goodall and Harrison2008, Sun et al., Reference Sun, Ong and Burnette2012), country-specific or societal aspects might also affect care-givers’ work-life. Recently published literature on the reconciliation between informal care-giving and working has originated from different countries (e.g. New Zealand (Alpass et al., Reference Alpass, Keeling, Allen, Stevenson and Stephens2017) and Japan (Honda et al., Reference Honda, Date, Abe, Aoyagi and Honda2014)). Cross-national, original studies or reviews seem to be lacking. However, it might be of interest to examine in future research the impact of ethnicity, culture or religion on the reconciliation between informal (dementia) care-giving and working in more detail. This is because employment may not always be an additional strain for informal care-givers, but rather a counterbalance for care-giving strain at home. This possibility raises the questions as to which care-givers’ conditions affect concurrent care-giving and working, as well as boost or relieve dementia care-givers’ burden. In addition to care-givers’ characteristics and their potential interrelations, characteristics of the care recipient and circumstances of the care-giving context should also be considered, in order to account for the complexity of care-giving.

The facilitating effect of the care-giving context

Although different responsibilities within family and social life can be challenging, we emphasise the potential of other informal network members. Since care-givers value informal support more than formal support (Pinquart, Reference Pinquart and Suhr2016), the focus shifts to the involvement of family and social resources. Notably, the supportive potential of the family or other persons within the social environment has seldom been considered in studies using quantitative evidence (only in Schäufele et al., Reference Schäufele, Köhler, Hendlmeier and Suhr2016), whereas qualitative studies have granted deeper insights into the topic. The family members of PwD share the same experiences within caring or supervision (Innes et al., Reference Innes, Abela and Scerri2011). Also, acquaintances who are going, or have gone, through similar situations can act as understanding and consoling partners (Dunham and Dietz, Reference Dunham and Dietz2003).

Various professional, supportive services exist and are used by informal care-givers of PwD. Employed care-givers of PwD are more likely to use paid services than non-employed care-givers (Schäufele et al., Reference Schäufele, Köhler, Hendlmeier and Suhr2016). This may indicate that employed care-givers are more able to afford these services, or that they appreciate continuing to work. In the long term, the utilisation of supportive services also has the potential to reduce the income losses of the care-giver (Gaugler et al., Reference Gaugler, Zarit, Townsend, Stephens and Greene2003). This finding emphasises the relevance of formal supportive services supplementing informal care, and even more so, where care-givers have used supportive services for a longer period of time. However, the service use of dementia care-givers depends not only on the care-giving requirements but also on their characteristics and needs, which may change over time. Care-givers who perceived a greater burden also use more services for themselves (Martindale-Adams et al., Reference Martindale-Adams, Nichols, Zuber, Burns and Graney2016). Thus, from a societal perspective, additional health care and service use by care-givers themselves must be reflected in measurements of dementia care costs (Deb et al., Reference Deb, Thornton, Sambamoorthi and Innes2017).

Finally, positive influencing factors may lie more in the care-giving context than in the affected care-givers or PwD. Detailed knowledge of these contextual factors of care-giving, which can usually be influenced, could lead to effective approaches to support informal care-givers if they are also employed. Satisfaction with social support enhances informal care-givers’ perceptions of dementia care-giving (Lee and Choi, Reference Lee and Choi2013), and self-help groups promote dementia care-givers’ mental health in general (Schüz et al., Reference Schüz, Czerniawski, Davie, Miller, Quinn, King, Carr, Elliott, Robinson and Scott2015). However, for employed care-givers of PwD, extensive evidence is still lacking. We conclude that the relevance of the informal network, including family members, has not been sufficiently investigated, although evidence to date suggests that they would hold a pivotal role in the support of care-givers. However, before researchers approach this particular topic, the implications of dementia on family life should be considered in more detail.

Successful combining of care-giving and employment contributes to sustaining informal care-giving in dementia

The effects on employment are evident, although we did not quantify their size due to the descriptive nature of this review. The many negative consequences described above illuminated the predominantly adverse impact of dementia care-giving on work-life; neutral or positive consequences were seldom reported. However, we would like to emphasise once again that some qualitative studies describe the compensatory and restorative effect of employment in informal dementia care-giving if both responsibilities can be combined (e.g. Dunham and Dietz, Reference Dunham and Dietz2003; Kohler et al., Reference Kohler, Döhner, Kofahl and Lüdecke2012). This integration of qualitative evidence yielded several nuanced findings that should be pursued by further mixed-methods or quantitative research approaches.

Despite the predominantly adverse impact of dementia care-giving on work-life, the overall employment rate is similar to the employment rates of care-givers in general. For example, the labour force participation rates of all informal care-givers in Germany grew between 2001 and 2012. In particular, the employment rate of female care-givers rose from approximately 37 per cent to 61 per cent, whereas the male employment rate increased from approximately 46 per cent to 67 per cent (Geyer and Schulz, Reference Geyer and Schulz2014). Although these increased employment rates were lower than those of non-care-givers’ employment rates, the difference was not statistically significant in all observed years. The number of both full-time and part-time or marginally working care-givers increased in the same period. The percentages of part-time and marginally employed care-givers were even higher than the percentages of the overall population of working age (Geyer and Schulz, Reference Geyer and Schulz2014). In contrast to the increased labour force participation rates, the average amount of time per day spent care-giving remained at almost three hours in this representative national sample of general care-givers (Geyer and Schulz, Reference Geyer and Schulz2014). We assume that increased working despite care-giving is compensated by the sacrifice of leisure time, with which comes potential consequences for the care-givers’ health. Therefore, this development is worthy of further investigation with a specific focus on dementia care-givers. However, further studies must consider interaction effects, such as the effects of care-giving and age, and control for these factors to avoid overestimating any effect. Decreased labour force participation and impaired working of care-givers of employment age not only imply financial productivity loss for care-givers of PwD but also losses for society in general. Dementia care-givers’ productivity loss from a societal perspective has already been covered in the literature using different measurements (e.g. Leicht and König, Reference Leicht and König2012; Lenox-Smith et al., Reference Lenox-Smith, Reed, Lebrec, Belger and Jones2016; Deb et al., Reference Deb, Thornton, Sambamoorthi and Innes2017).

Policy implications

To draw practical implications regarding the sub-group of dementia care-givers, we note that, on the one hand, these care-givers experience considerable career disadvantages. This effect has great importance because perceived care-giving–work conflicts are one of the greatest stressors leading to burden (Pinquart, Reference Pinquart and Suhr2016). This stressor is particularly seen, as we have shown, among working care-givers of PwD with severe cognitive impairments and who lived with the care recipient. In addition, they were mostly female, but this does not apply specifically to care-givers of PwD, but in general due to the gender distribution of care-giving responsibilities nowadays (Erol et al., Reference Erol, Brooker and Peel2015). On the other hand, concurrent working does not necessarily lead to exacerbated burden. Admittedly, more time at work may provide relief and counterbalance the adverse effects of care-giving (Pinquart, Reference Pinquart and Suhr2016). Combining care-giving with a paid job is associated with greater happiness (van Campen et al., Reference van Campen, de Boer and Iedema2013). Our results – based on the qualitative evidence – also hint at this effect in care-givers of PwD. Care-givers’ priorities are providing care, followed by paid employment and the ability to maintain a healthy and balanced life (Horrell et al., Reference Horrell, Breheny and Stephens2014). So, politicians and employers are asked to minimise career disadvantages caused by care-to-work or work-to-care conflicts, and to promote the counterbalancing effect of combining care-giving and working (e.g. Colombo et al., Reference Colombo, Llena-Nozal, Mercier and Tjadens2011).

Legal regulations should protect care-givers of PwD, so they do not fear adverse consequences of career disadvantages due to their care-giving responsibilities. Policies and laws greatly differ among different countries (Arksey and Morée, Reference Arksey and Morée2008; Hoff and Hamblin, Reference Hoff and Hamblin2011; Lilly, Reference Lilly2011). In Germany, for example, the regulations on Care-giver Leave and Family Care-giver Leave recently became effective. They offer family care-givers the right to take time off work for a specific period and to arrange work more flexibly during care-giving (Federal Minister for Family Affairs, Senior Citizens, Women and Youth, 2016). Similar regulations are included in the Family and Medical Leave Act in the USA, although they are considered improvable (Chen, Reference Chen2016). In contrast, legal regulations and workplace policies to support working family care-givers in China are still missing (Pei et al., Reference Pei, Luo, Lin, Keating and Fast2017). The dissemination of legislative efforts, comparable to those implemented in Germany, is desirable, and their efficacy should be scientifically assessed.

Furthermore, workplaces are and will be an essential source of support for employed care-givers. We have shown that employment provides reprieve and distraction from care-giving, fulfilment, self-confidence and social participation to care-givers of PwD. Employers should aim at developing and implementing care-giver-supportive work environments in which all employees enjoy the same degrees of respect and appreciation. Such care-giver-friendly workplace policies (CFWPs) are ‘intentional organisational changes, whether in practices, policies or culture, to support employees’ lives outside of work by reducing work–family conflict’ (Ramesh et al., Reference Ramesh, Ireson and Williams2017). Components of such a workplace can include (a) support services (e.g. resource and referral services, information services, counselling, support groups, workshops and seminars on care-giving issues), (b) flexible work arrangements (e.g. flexible work schedules, reduction of hours to part-time, job sharing, working from home or telecommuting-work), (c) financial assistance and relief (e.g. subsidised care-giving services), and (d) unpaid and paid leaves (Arksey, Reference Arksey2002; Hoff et al., Reference Hoff, Reichert, Hamblin, Perek-Bialas and Principi2014; Ireson et al., Reference Ireson, Sethi and Williams2016, Ramesh et al., Reference Ramesh, Ireson and Williams2017). Care-giver-friendly employers should have in mind that employees aged 40 or more, especially women, could be faced with already existing or future care-giving responsibilities. They should inform them of their options and support them. Especially among women (Schneider et al., Reference Schneider, Trukeschitz, Mühlmann and Ponocny2013) and care-givers with intermittent care responsibilities (Brown and Pitt-Catsouphes, Reference Brown and Pitt-Catsouphes2013), flexible work arrangements play an important role in experiencing fewer care-giving–work interactions and reduced burden. Further recommendations can include training for managers and supervisors to promote a friendly atmosphere for employed care-givers. For instance, open-door and guaranteed confidentiality policies between employers and employees can be established to foster communication between them, and reduce possible prejudices and reservations regarding CFWPs. Visible CFWPs will become an increasingly important part of business and management plans geared towards sustainability (Ramesh et al., Reference Ramesh, Ireson and Williams2017). However, more detailed knowledge of how workplaces can be transformed into care-giver-supportive work environments is necessary (Lilly, Reference Lilly2011; Ramesh et al., Reference Ramesh, Ireson and Williams2017).

Reducing the burden of dementia care-givers is a global political objective and promising efforts already exist (Livingston et al., Reference Livingston, Sommerlad, Orgeta, Costafreda, Huntley, Ames, Ballard, Banerjee, Burns, Cohen-Mansfield, Cooper, Fox, Gitlin, Howard, Kales, Larson, Ritchie, Rockwood, Sampson, Samus, Schneider, Selbæk, Teri and Mukadam2017). Employed care-givers of PwD are a sub-group of critical importance because of the presumed double burden if political and social actors do not address care-to-work or work-to-care conflicts. The common goal of legal regulations and workplace policies should be the successful combination of care-giving and working. When we achieve this, it may enhance care-givers’ satisfaction, sustain informal care-giving in dementia and reduce productivity loss.

Strengths and weaknesses

The first strength of this mixed-studies review is the provision of rich contextual details of this complex topic for the first time, in a systematic manner. By considering mixed evidence, we highlight the qualitative results that are available that complement quantitative results. The second strength is that we have identified two neglected research areas related to the interplay between informal care-giving and employment. Firstly, if we understand informal care-giving as a societal task with shared responsibilities, we should look in depth at the potential of the informal network (i.e. relatives, friends, neighbours) to influence the balance of employment and care-giving among informal care-givers. Their support could be a valuable contribution to the mitigation of the strain arising from care-giving and could facilitate the care-givers’ participation in the labour market. Secondly, care-givers’ characteristics, such as personality traits and coping skills, play an essential role in the mastering of both care-giving and working. Recently published findings provided initial evidence for this role (Morimoto et al., Reference Morimoto, Furuta, Kono and Kabeya2019); based on this, further research is needed. Perspectives on care-giving should be broadened to account for the fact that informal care-giving in dementia also offers the opportunity for personal growth (Leipold et al., Reference Leipold, Schacke and Zank2006; Ott et al., Reference Ott, Sanders and Kelber2007; Shim et al., Reference Shim, Barroso, Gilliss and Davis2013). Both practical and psychological services – particularly counselling and educational services (Piersol et al., Reference Piersol, Canton, Connor, Giller, Lipman and Sager2017), but also specialist support (Bunn et al., Reference Bunn, Goodman, Pinkney and Drennan2016) for informal care-givers of PwD, are necessary to support their highly valuable care responsibilities.

Weaknesses of this mixed-studies review include the narratively synthesised evidence provided, limitations of the included studies, the possibility of publication bias and the sensitivity of the literature search approach, as well as study selection. We provided interpretive evidence derived from narrative data synthesis. Based on the enormous heterogeneity of the designs, methods and sample characteristics of the included studies, fair comparisons were not possible and pooling of data was not feasible. The included studies are limited given the majority of quantitative studies used cross-sectional data. Therefore, no causalities between care-giving-related exposures and employment-related outcomes could be drawn. Future studies with longitudinal follow-up are suggested to explore causal relationships. Publication bias could also have influenced our results, as the results of no effects of informal care-giving on care-givers’ employment are less likely to be published. We can further presume that the researchers’ perspective has been focused more on the adverse effects on employment than on positive work experiences due to the presumed care-giving–work conflict. The sensitivity of our search strategy and study selection was high in order to gain a broader picture. Therefore, we accounted for the complexity of this topic, rather than providing a brief outline enabled by higher specificity. We built search terms on limited phrases, screened a considerable number of electronic databases (which was simplified by using one meta-database including 11 internal databases and ten external databases) and all screening steps were conducted by two reviewers. Nevertheless, we cannot exclude the possibility of unidentified studies. Additionally, we did not assess the disease severity of the observed care recipients with Alzheimer's disease or related dementia, how informal care-giving was defined by the studies nor how the observed care arrangements were organised. The majority of included studies originated from North American and European countries. However, how health-care systems and circumstances arrange informal care for an elderly or impaired related person differ strikingly from country to country. Thus, our conclusions should be interpreted with caution in terms of country-specific conclusions. Lastly, we solely focused on informal care-giving factors and excluded working conditions that also influence care-givers’ employment.