Show Summary Details

Page of

PRINTED FROM the OXFORD RESEARCH ENCYCLOPEDIA, PSYCHOLOGY ( (c) Oxford University Press USA, 2016. All Rights Reserved. Personal use only; commercial use is strictly prohibited. Please see applicable Privacy Policy and Legal Notice (for details see Privacy Policy and Legal Notice).

date: 16 August 2018

Caregiving Issues for Older Adults

Summary and Keywords

Caring for an older adult who needs help or supervision is in many cases associated with mental and physical health issues, especially if the care recipient has dementia, although positive consequences associated with caregiving have also been reported. Several theoretical models have shown the relevance of psychological variables for understanding variations in the stress process associated with caregiving and how interventions may benefit from psychological techniques and procedures.

Since the 1990s it has been witnessed an increment in the number of studies aimed at analyzing caregiver health and developing and testing interventions for decreasing caregiver distress. Several examples of interventions for helping caregivers are considered empirically supported, including interventions for ethnically and culturally diverse caregivers, with psychotherapeutic and psychoeducational interventions showing strong effect sizes. However, efforts are still needed to maintain the results of the interventions in the long term and to make the interventions accessible (e.g., through technological resources) to a large number of caregivers who, because of time-pressure issues associated with caregiving or a lack of support, are not benefiting from them. Making these interventions available in routine healthcare settings would help a large population in need that presents with high levels of psychological suffering.

Keywords: Alzheimer, caregivers, coping, dementia, family, health, intervention, psychotherapy, stress

Impact of Family Caregiving

Considering global population aging and the link between aging and fragility and dependency rates, there is a growing need for long-term care (World Health Organization, 2015). According to the World Health Organization, in 2015 more than 47 million people suffered from dementia, and “the number is expected to triple by 2050” (World Health Organization, 2015). In addition to the older adults who need care because they have difficulty performing at least one basic task, there are also older adults who do not need direct care but may benefit from supervision and support (World Health Organization, 2015). Most of the care or support (83%) older adults in need receive is provided by family members, mainly by women family members (Alzheimer’s Association, 2016). The existence of family caregivers, carrying out what has been termed “invisible work,” has made it possible to respond to the growing need to provide care to older dependent adults (Wolff, Spillman, Freedman, & Kasper, 2016). However, though the aging population is growing, there has been a decline in the availability of informal or family caregivers because of the reduction in births, the increase in the number of women entering the paid workforce, and people living longer (World Health Organization, 2015). All this means that more and more women are becoming caregivers at a time in their lives (typically, middle-age) when they have additional stressors—employment, minor children in the home, and possibly their own physical or mental health issues, or both, to deal with.

Caregivers provide support or help for long periods of time, and it seems that those who care for people with dementia provide this care for a longer time than those caring for older people with other problems. According to the Alzheimer’s Association (2016), 47.4% of those caring for people with Alzheimer or other dementias have been caring for them for six or more years, compared with 29.4% who care for other older adults (e.g., with functional problems) for six or more years. In addition, those caring for a relative with dementia care for more hours per month than those who care for older adults without dementia (92 versus 65 hours, respectively). During all these years and hours, the care they provide includes such tasks as helping with activities of daily living, managing the behavioral symptoms of the disease (e.g., repetitive activities, agitation, or sadness), decision-making, hiring and supervising others who provide care, and so on. For most family caregivers, caring for an older adult with health problems has negative consequences on the caregiver’s physical and emotional health, and it may also involve potential financial problems, participation restrictions, and loss of work productivity (Wolff et al., 2016). Those taking care of relatives suffering from dementia show the highest levels of mental and physical health problems (Sallim, Sayampanathan, Cuttilan, & Ho, 2015); and caregivers of relatives suffering from frontotemporal dementia report higher levels of distress than do caregivers of relatives with Alzheimer’s disease. This is probably due, among other reasons, to the more intense behavioral problems of patients with frontotemporal dementia, which are more taxing for caregivers (de Vugt, Riedijk, Aalten, Tibben, van Swieten, & Verhey, 2006). Caring for a relative who suffers from dementia has been considered a prototypic situation of chronic stress (Vitaliano, Young, & Zhang, 2004) and has been defined as a natural experiment of extreme stress (Robinson-Whelen, Tada, MacCallum, McGuire, & Kiecolt-Glaser, 2001).

Although studies usually refer to caregivers as a unit, in reality there are many differences between them. In a study comparing caregivers from several European countries, Di Rosa et al. (2011) found up to seven different caregiver profiles. These ranged from the more usual one composed mostly of daughter caregivers who have low education levels, cohabit with the care recipient, care for the recipient for many hours per day, and experience high levels of negative impact to one composed of caregivers who, despite caring for care recipients with high functional impairment, show a low negative impact. Several theoretical models have been developed that may help to understand such differences between caregivers. Some of these models are reviewed in the section, “Understanding Caregivers’ Health: Theoretical Models.”

Understanding Caregivers’ Health: Theoretical Models

Caregiving is a long-term job in which caregivers face considerable adversity or strong demands that vary depending on the stage (becoming a caregiver, caregiving, or postcaregiving, e.g., bereavement and anticipated grief, and institutionalization) or the illness of the care recipient (e.g., type of dementia or stages of the dementia). Even though most of the caregivers (e.g., dementia family caregivers) face similar stressful situations, not all of them suffer the same negative effects (e.g., mental and physical health problems). Related to this is the fact that, though most of the research has reported negative effects associated with caregiving, there is also research that supports positive effects on caregivers’ health, including reduced mortality rates (Roth, Fredman, & Haley, 2015).

Several models have been developed and tested that may contribute to understanding how caregiving may be hazardous for some persons and positive for others. The models that have been influenced by the stress and coping model of Lazarus and Folkman (1984) have received the most empirical support, for example, the model of stress and coping adapted to caregiving by William Haley and collaborators (Haley et al., 1987) and the stress-process model by Leonard I. Pearlin and collaborators (Pearlin et al., 1990). These models share the idea that stressors do not have a direct impact on health. Several variables may act as resource or mediator variables buffering or modifying the effect of stressors on health. Some of the most studied resource variables are coping strategies, social support, and self-efficacy (e.g., Steffen et al., 2018). The stress and coping model has also been reviewed recently for the inclusion of social and cultural factors that may contribute to the caregiving process, such as familism (Knight & Sayegh, 2010). According to these models, a caregiver who has a strong reliance on familistic values (not obligations); a high level of support from the family, or from other social resources; and adaptive coping strategies may not suffer negative consequences from caregiving. A caregiver with this profile may, in fact, perceive caregiving as a great opportunity to give back to a relative what she received as a child (e.g., to a mother). The role of ethnicity (e.g., Hilgeman et al., 2009; Montoro-Rodriguez & Gallagher-Thompson, 2009) or of lesbian, gay, bisexual, and transgender (Coon, 2003) issues have also been analyzed in the caregiving stress process. Other interesting models aimed at understanding caregiver distress have received important empirical support. These include (a) the vulnerability or diathesis model, which states that caregiver stress may be explained by vulnerabilities in the carer that existed prior to caregiving (e.g., Vitaliano, Strachan, Dansie, Goldberg, & Buchwald, 2014); (b) behavioral models that highlight the impact of caregiving-related activity restriction and decrease in pleasurable activities on caregivers’ exposure to positive reinforcers (e.g., Mausbach et al., 2011); and (c) the cognitive-behavioral model, which stresses the importance of caregivers’ ways of thinking (e.g., having dysfunctional thoughts) in how they approach caregiving (e.g., not asking for help, assuming all caregiving tasks, not taking time for resting or leisure, etc.; Losada, Montorio, Knight, Márquez-González, & Izal, 2006). More recently, in the context of other treatment-related theoretical approaches, such as acceptance and commitment therapy or mindfulness-based therapies, other relevant variables have been suggested that may play a significant role in explaining caregivers’ health, such as experiential avoidance or cognitive fusion (Márquez-González, Cabrera, Losada, & Knight, 2018; Romero-Moreno, Márquez-González, Losada, Gillanders, & Fernández-Fernández, 2014; Spira et al., 2007).

Caregiving Issues for Older AdultsClick to view larger

Figure 1. Integrated model of the psychological impact of the dementias on caregivers, care recipients and families (Losada et al., 2017).

Thus many theoretical approaches are compatible with each other in terms of explaining caregivers’ distress. However, caregiving is a particularly complex process that also involves third parties, including the person receiving the care and the global family. Losada, Márquez-González, Vara-García, Gallego-Alberto, Romero-Moreno, and Olazarán (2017) have developed a theoretical model intended to integrate these factors—caregiver, care recipient, and family—that may contribute to the caregiving process. This model, shown in Figure 1, suggests that caregivers may enter the caregiving role with some vulnerabilities (e.g., previous own health problems or cultural values that may not be helpful, such as differing ideas about family obligations or a lack of social or communication skills; Vitaliano et al., 2014). The caregiver is faced with the illness of the relative (e.g., a frontotemporal dementia), and the care recipient is also entering a new stage in her life characterized by a reduced cognitive capacity that may lower the threshold for coping with life issues without suffering stress (Smith, Gerdner, Hall, & Buckwalter, 2004), and an illness that may contribute to presenting significant unmet needs (e.g., social contact; Cohen-Mansfield, Dakheel-Ali, Marx, Thein, & Regier, 2015). At this point in the process, several variables may have a significant influence on the attitude of the caregivers or the families toward caregiving. For example, caregivers’ lack of knowledge about Alzheimer’s may contribute to increased excess disability in the care recipient. Caregivers showing rigid dysfunctional thoughts (e.g., “only the closest family member knows how to care well”) may experience significantly reduced behavioral activation (e.g., leisure or social contacts) by focusing solely on their caregiving duties, with additional risk behaviors, such as not asking for help. Also, a lack of or wrong knowledge about the illness (e.g., “even in the earliest stages a dementia patient is not able to communicate properly nor is independent to enjoy leisure activities or having responsibilities”) or holding strong stereotypes about the elderly (e.g., “older adults are like kids”) may have important effects on care recipients’ behavior (e.g., leading to agitation or depressed mood). They can operate by increasing caregivers’ use of elderspeak (Kemper, Finter-Urczyk, Ferrell, Harden, & Billington, 1998), ignoring care recipients’ independent behaviors and reinforcing dependent behaviors (Baltes & Wahl, 1992), and so on. In a longitudinal study done by Vitaliano, Young, Russo, Romano, and Magana-Amato (1993), caregivers’ expressed emotion (e.g., criticism or overinvolvement) predicted negative care-recipient behaviors, such as being uncooperative, angry, or prone to wander. In this process, the family as a whole can also have an important influence, for example, validating the caregiver’s work or providing support before the burden appears. All these factors may contribute to an appraisal of the caregiving situation as burdensome, having a strong influence on caregivers’ and care recipients’ mental and physical health, care recipients’ intake of drugs aimed at controlling disruptive behaviors, family conflicts, or caregivers’ decision to institutionalize the care recipient. Regarding the latter, for example, families suggest that a combination of circumstances leads them to institutionalize a family member (Afram et al., 2014; Toot, Swinson, Devine, Challis, & Orrell, 2017), many of which are mentioned in the proposed model. For example, behavioral and psychological symptoms are one of the main reasons, alongside the dependency of the care recipient and the burden on the caregiver (Afram et al., 2014). The behavioral and psychological symptoms of dementia (BPSD) most strongly associated with institutionalization are physical aggression, psychosis, anxiety hallucinations, and depression (Toot et al., 2017). Some of the caregiver factors found to be linked to the decision to institutionalize are role captivity, poorer general health and caregiving relationship, lower attachment to the care recipient and higher stress and other mental indicators, such as caregivers’ depression (Toot et al., 2017).

The integrated model described here assumes that dementia does not impact the sufferer alone, but represents a factor that can trigger a threat to the family as a whole. This process takes place in a context defined by the personal histories of the caregiver, the affected person, and the family and by specific characteristics (of the context, including the culture) that can benefit or jeopardize the process.

Psychological Interventions

Since the 1990s there has been a significant increase in the number of studies focused on caregiving issues, including looking at psychological interventions. Even though there is still room for improving the effects of these interventions on reducing caregivers’ distress (e.g., depression or anxiety), several meta-analyses and reviews have provided data leading to the conclusion that there are evidence-based psychological treatments that are helpful for family caregivers (e.g., Gallagher-Thompson & Coon, 2007; Logsdon, McCurry, & Teri, 2007; Pinquart & Sörensen, 2006).

For example, it may be possible to identify interventions that target the different dimensions postulated in the integrative model (Figure 1). Ways to detect caregivers who may be especially vulnerable to the negative effects associated with the caregiving demands should be considered. For example, people with a history of psychological problems, such as anxiety or depression or a neurotic personality, may be particularly at special risk (Hooker, Monahan, Bowman, Frazier, & Shifren, 1998; Russo, Vitaliano, Brewer, Katon, & Becker, 1995). Interventions in these cases may require special supervision by health and social professionals, and the participation of other relatives in the caregiving process, when it is available, may be expressly required.

Regarding psychologically related interventions focused on the care recipients’ illness, Logsdon et al. (2007) offer support for several intervention approaches. The progressively lowered stress threshold model (PLST; Smith, Gerdner, Hall, & Buckwalter, 2004) aims to provide caregiver training for preventing negative consequences associated with dementias, such as problematic behaviors, that may be considered an expression of unmet needs (Cohen-Mansfield et al., 2015). Among other principles, the PLST aims to teach caregivers to observe and listen to their relatives and to receive ongoing education, support, and training in problem-solving strategies (Smith et al., 2004). As reviewed by Logsdon et al. (2007), interventions based on the PLST are effective in reducing behavior problems. The PLST model shares with other models the importance of educating caregivers about dementias and, at the same time, training caregivers in skills they will need for coping with the behavioral and psychological symptoms of dementias. In this sense, empirical support has also been found for the ABC (antecedents-behavior-consequences) model (e.g., Burgio et al., 2001; Nogales-González, Losada, Márquez-González, & Zarit, 2014; Teri et al., 1998) that also benefits from behavioral-activation strategies (Teri et al., 2003). So it can be concluded that interventions targeted to provide education and skills for managing dementia, based on models such as the unmet needs model, the PLST, and the ABC, may be successful in buffering the effects of dementias on caregivers by targeting dimensions associated with the illness, but also by increasing caregivers’ knowledge and modifying caregivers’ behavior (they are more skilled, e.g., in managing antecedents and consequents of BPSD).

According to Gallagher-Thompson et al. (2012), psychoeducational-skill-building programs, psychotherapy counseling, and multicomponent interventions can be considered evidence-based interventions for family caregivers, with large effect sizes (Gallagher-Thompson & Coon, 2007; Gallagher-Thompson et al., 2012). Pinquart and Sörensen (2006) also found significant effect sizes for psychoeducational and cognitive behavioral therapies (CBTs) for reducing burden and depression in dementia family caregivers. In this study, differentiating psychoeducational interventions in terms of promoting the active participation of caregivers in the intervention versus educational content seemed to introduce a difference: the interventions that promoted active caregiver participation obtained significant effects, while those interventions that included only educational content showed effects only for increasing caregiver ability or knowledge, or both. Similar findings have been reported more recently in the meta-analysis by Weinbrecht, Rieckmann, and Renneberg (2016), who found that interventions focusing on training skills were superior to those which were more centered on the knowledge or affect domains. In the Pinquart and Sörensen (2006) study, the largest effect sizes for changing depression were found for CBT therapies, when compared with other types of intervention (e.g., psychoeducation, counseling, multicomponent interventions, or respite). These interventions are usually focused on training caregivers in skills that may increase their self-efficacy for coping with the caregiving process, targeting variables that, in the stress and coping models, are generally considered resource variables. Most of these interventions use CBT procedures that usually include a cognitive component, aimed at training caregivers to identify and change unhelpful thoughts or training them in reappraisal strategies, and behavioral components, aimed at increasing the number of positive reinforcers by training caregivers in skills for doing more pleasant everyday activities (Cheng, Fung, Chan, & Lam, 2016; Losada et al., 2015; Márquez-González et al., 2007). Some of this studies were done in the context of the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) multisite initiative (Burgio, Stevens, Guy, Roth, & Haley, 2003; Gallagher-Thompson, Coon, Solano, Ambler, Rabinowitz, & Thompson, 2003). Adding behavioral activation to psychoeducation strategies seem to be an effective way of increasing the effects of interventions, even when telephone-delivered (Au et al., 2015). There are also examples in the literature of interventions that have focused only in the behavioral activation of caregivers, such as the one developed by Moore et al. (2013), which was a brief intervention (only four sessions) aimed at training caregivers to monitor use of time, identify leisure activities, develop a hierarchy for prioritizing their activities, and participate in leisure activities. Moore et al. (2013) found significant reductions of depressive symptoms and cardiovascular risk at the end of the intervention.

Regarding studies aimed at analyzing the efficacy of family therapy for dementia family caregivers, Eisdorfer et al. (2003) developed an intervention using Structural Ecosystems Therapy combined with technology (computer-telephone) that was effective in reducing caregivers’ depressive symptoms. However, research on interventions that consider the family is very scarce, and theoretical approaches to family dynamics and mechanisms that contribute to caregivers and families suffering associated with caring for a relative with dementia are also scarce, with exceptions such as the Caregiver Family Therapy (Qualls, 2014). However, there is still a need for empirical studies analyzing the effect of family therapies on caregivers’ quality of life.

All the above-mentioned interventions share the focus on change (e.g., changing thoughts, changing how caregivers spend their time or changing antecedents or consequents of care recipients’ behaviors). However, it is not unusual to find caregivers who do not receive this change message well. This is sometimes because they do not show maladaptive thoughts or lack of interest in pleasant activities or sometimes because the implicit message in CBT interventions, “take care of yourself,” does not fit with their main interest of taking care of their relative (Márquez-González, Romero-Moreno, & Losada, 2010). Also, CBT has a clinical perspective that fits better with hedonic well-being, whereas many caregivers have values that fit better with finding meaning and life purpose or self-realization; that is, eudaimonic well-being (eudaimonia happens “when people’s life activities are most congruent of meshing with deeply held values and are holistically or fully engaged”; Ryan & Deci, 2001). In addition, in caregiving situations, many things that cannot be changed, such as some of the thoughts or emotions related to dementia caregiving (e.g., “it’s terrible to watch how my relative deteriorates,” or caregivers’ sadness or guilt associated with caregiving) or even characteristics of the illness that are sometimes not easy to accept (e.g., behavioral and psychological symptoms of the dementias, such as memory problems or frequent mood changes). It is not uncommon to find caregivers who do not want to accept their relative’s illness or who do not accept the negative emotions or thoughts that are usually related to dementia caregiving. The tendency to try to control or not accept (or avoid) thoughts or emotions, as well as other negative experiences, has been labeled “experiential avoidance” (e.g., Hayes, Wilson, Gifford, Follette, & Strosahl, 1996), a dimension that has been considered central to the explanation of psychopathological problems (Hayes et al., 1996). The number of studies that have analyzed the role of experiential avoidance in dementia family caregivers is sparse, but the data suggests that caregivers who score high in experiential avoidance have more depressive symptoms (Spira et al., 2007) and higher blood pressure (Losada et al., 2014) and show more attentional biases to caregiving related information (Márquez-González et al., 2018).

Experiential avoidance is a key target of Acceptance and Commitment Therapy (ACT) and other interventions (Hayes, Strosahl, & Wilson, 2012). ACT interventions have three main pillars: (a) accepting aversive experiences that cannot be changed (e.g., thoughts or emotions); (b) considering people’s values (global desired directions for life) and helping caregivers act in coherence with those values; and (c) taking action, with activities oriented to those values. Preliminary evidence has been found of the effects of ACT in reducing caregivers’ levels of anxious and depressive symptomatology (Losada et al., 2015).

However, in spite of the available interventions and their effects, there are several issues that suggest that greater efforts are needed in order to improve the efficacy of the interventions and, even more so, to make them available to most of the caregiving population and to reduce the attrition rates usually associated with participation in the interventions. For example, Weinbrecht et al. (2016) have reported that one-third of participants in their intervention refused to participate. In addition, although efficacious psychosocial interventions exist to respond to the issues of the caregivers (Gallagher-Thompson & Coon, 2007; Pinquart & Sörensen, 2006), “they are largely disconnected from routine health care delivery” (Wolff et al., 2016, p. 377). As indicated by Wolff et al. (2016), this disconnection suggests that there are no procedures for identifying caregivers at risk or alternatives to respond to their needs, for example, regarding their mental and physical health. In addition, when available, interventions show high effect sizes at postintervention that are diluted in follow-up periods ranging from 6 to 12 months, although exceptions have been published (Wilz & Soellner, 2016).

One fact that may contribute to increasing the effect sizes of the interventions for caregivers may be related to the individualization of the approaches for helping them. As Zarit and Femia (2008) commented, “Caregivers are a heterogeneous population with heterogeneous risk profiles” (p. 8), and general interventions may thus not provide the best benefits for all of them. More recently, a meta-analysis of interventions for elderly caregivers reached a similar conclusion: “More customized approaches lead to higher efficacy” (Weinbrecht et al., 2016, p. 1625). There is thus a clear need for individualizing interventions, and this individualization must be guided by a correct assessment of caregivers’ circumstances. For example, whereas one caregiver may show a significant level of depression due to a lack of social skills when asking for help that could provide him or her with social or instrumental support, another caregiver may suffer significant levels of depression due to the frequency of the disruptive behaviors of his relative. Professionals should be trained in making assessments that could allow them to select the most critical areas for each caregiver. In addition, they should be trained in strategies for providing different skill sets for the caregivers, depending on the vulnerabilities identified through the assessment, in a similar way to what was done in the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) II study (Belle et al., 2006). The role that new technologies (e.g., internet or smartphone applications) may play in responding to caregivers’ needs seems promising (Gallagher-Thompson et al., 2012), but studies that analyze this issue are still few and far between.


As the model described in this article (Figure 1) attempts to demonstrate, dementia caregiving is a process that involves factors of the care recipient as well as of the caregiver and the family. Therefore, including family caregivers and other family members as members of an interdisciplinary team in the assessment and decision-making process regarding the care dependent will receive would result in a better-defined, more-efficient and higher-quality response (Wolff et al., 2016). Although each problem may need individualized intervention, advances in procedures for assessing specific caregiver needs and providing caregivers with the best-fitting intervention are also required.

The significant rise in the number of older people suffering from problems linked to dependence, such as dementias, combined with the decrease in the availability of family members for caring for an older relative and the demanding tasks such care involves are contributing factors to an increasing difficulty for families in maintaining their caregiver role in community settings. Even though there are differences between countries in the level of service provision for helping families with care tasks, including countries in which such services are completely lacking or inaccessible, there is an urgent need to improve care-support strategies (Lamura et al., 2008). Making the interventions that have shown to be effective available for most of the caregivers that may need them is a big challenge for the future. Initiatives similar to the “Improving Access to Psychological Therapies (IAPT)” that have been implemented in the United Kingdom for increasing the availability of CBT interventions for depression and anxiety disorders (Clark et al., 2009) may be a necessary strategy for increasing the ability to respond to the significant needs shown by the caregivers, a population that supports most of the help that is provided to loved ones in need.

Further Reading

Gallagher-Thompson, D., Tzuang, M. Y., Brodaty, H., Charlesworth, G., Gupta, R., Lee, S. E., . . . Shyu, Y. I. (2012). International perspectives on nonpharmacological best practices for dementia family caregivers: A review. Clinical Gerontologist, 35, 316–355.Find this resource:

Knight, B., & Losada, A. (2011). Family caregiving for cognitively or physically frail older adults: Theory, research, and practice. In K. W. Schaie & S. L. Willis (Eds.), Handbook of the Psychology of Aging (7th ed., pp. 353–365). New York, NY: Academic Press.Find this resource:

Knight, B. G., & Sayegh, P. (2010). Cultural values and caregiving: The updated sociocultural stress and coping model. Journals of Gerontology: Series B, Psychological Sciences and Social Sciences, 65, 5–13.Find this resource:

Logsdon, R. G., McCurry, S. M., & Teri, L. (2007). Evidence-based psychological treatments for disruptive behaviors in individuals with dementia. Psychology and Aging, 22, 28–36.Find this resource:

Losada, A. (2015). Theories to understand stress and coping in caregivers. In N. Pachana (Ed.), Encyclopedia of geropsychology. New York, NY: Springer.Find this resource:

Losada, A., Montorio, I., Knight, B. G., Márquez, M., & Izal, M. (2006). Explanation of caregivers distress from the cognitive model: The role of dysfunctional thoughts. Psicología Conductual, 14, 115–128.Find this resource:

Márquez-González, M., Romero-Moreno, R., & Losada, A. (2010). Caregiving issues in a therapeutic context: New insights from the acceptance and commitment therapy approach. In N. Pachana, K. Laidlaw, & Bob Knight (Eds.), Casebook of clinical geropsychology: International perspectives on practice (pp. 33–53). New York, NY: Oxford University Press.Find this resource:


Afram, B., Stephan, A., Verbeek, H., Bleijlevens, M. H., Suhonen, R., Sutcliffe, C., . . . RightTimePlaceCare consortium. (2014). Reasons for institutionalization of people with dementia: Informal caregiver reports from 8 European countries. Journal of the American Medical Directors Association, 15, 108–116.Find this resource:

Alzheimer’s Association (2016). 2016 Alzheimer’s disease facts and figures. Alzheimer’s and Dementia, 12, 459–509.Find this resource:

Au, A., Gallagher-Thompson, D., Wong, M. K., Leung, J., Chan, W. C., Chan, C. C, . . . Chan, K. (2015). Behavioral activation for dementia caregivers: Scheduling pleasant events and enhancing communications. Clinical Interventions in Aging, 10, 611–619.Find this resource:

Baltes, M. M., & Wahl, H. W. (1992). The dependency-support script in institutions: Generalization to community settings. Psychology and Aging, 7, 409–418.Find this resource:

Belle, S. H., Burgio, L., Burns, R., Coon, D., Czaja, S. J., Gallagher-Thompson, D., . . . Zhang, S. (2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups. Annals of Internal Medicine, 145, 727–738.Find this resource:

Burgio, L. D., Allen-Burge, R., Roth, C. L., Bourgeois, M. S., Dijkstra, K., Gerstle, J., . . . Bankester, L. (2001). Come talk with me: Improving communication between nursing assistants and nursing home residents during care routines. The Gerontologist, 41, 449–460.Find this resource:

Burgio, L., Stevens, A., Guy, D., Roth, C. L., & Haley, W. E. (2003). Impact of two psychosocial interventions on white and African American family caregivers of individuals with dementia. The Gerontologist, 43, 568–579.Find this resource:

Cheng, S. T., Fung, H. H., Chan, W. C., & Lam, L. C. (2016). Short-term effects of a gain-focused reappraisal intervention for dementia caregivers: A double-blind cluster-randomized controlled trial. American Journal of Geriatric Psychiatry, 24, 740–750.Find this resource:

Clark, C. M., Layard, R., Smithies, R., Richards, D. A., Suckling, R., & Wright, B. (2009). Improving access to psychological therapy: Initial evaluation of two UK demonstration sites. Behaviour Research and Therapy, 47, 910–920.Find this resource:

Cohen-Mansfield, J., Dakheel-Ali, M., Marx, M. S., Thein, K., & Regier, N. G. (2015). Which unmet needs contribute to behavior problems in persons with advanced dementia? Psychiatry Research, 228, 59–64.Find this resource:

Coon, C. W. (2003). Lesbian, gay, bisexual and transgender (LGBT) issues and family caregiving. San Francisco, CA: Family Caregiver Alliance.Find this resource:

Di Rosa, M., Kofahl, C., McKee, K., Bień, B., Lamura, G., Prouskas, C., . . . Mnich, E. (2011). A typology of caregiving situations and service use in family carers of older people in six European countries: The EUROFAMCARE study. GeroPsych: The Journal of Gerontopsychology and Geriatric Psychiatry, 24, 5–18.Find this resource:

Eisdorfer, C., Czaja, S. J., Loewenstein, D. A., Rubert, M. P., Arguelles, S., Mitrani, V. B., & Szapocznik, J. (2003). The effect of a family therapy and technology-based intervention on caregiver depression. The Gerontologist, 43, 521–531.Find this resource:

Gallagher-Thompson, D., & Coon, D. W. (2007). Evidence-based psychological treatments for distress in family caregivers of older adults. Psychology and Aging, 22, 37–51.Find this resource:

Gallagher-Thompson, D., Coon, C. W., Solano, N., Ambler, C., Rabinowitz, Y., & Thompson, L. W. (2003). Change in indices of distress among Latina and Caucasian female caregivers of elderly relatives with dementia: Site specific results from the REACH National Collaborative Study. The Gerontologist, 43, 580–591.Find this resource:

Gallagher-Thompson, D., Tzuang, M. Y., Brodaty, H., Charlesworth, G., Gupta, R., Lee, S. E., . . . Shyu, Y. I. (2012). International perspectives on nonpharmacological best practices for dementia family caregivers: A review. Clinical Gerontologist, 35, 316–355.Find this resource:

Haley, W. E., Levine, E. G., Brown, S. L., & Bartolucci, A. A. (1987). Stress, appraisal, coping, and social support as predictors of adaptational outcome among dementia caregivers. Psychology and Aging, 2, 323–330.Find this resource:

Hayes, S. C., Strosahl, K., & Wilson, K. G. (2012). Acceptance and commitment therapy: The process and practice of mindful change. New York, NY: Guildford.Find this resource:

Hayes, S. C., Wilson, K. G., Gifford, E. V., Follette, V. M., & Strosahl, K. (1996). Experiential avoidance and the behavioral disorders: A functional dimensional approach to diagnosis and treatment. Journal of Clinical Psychology, 64, 1152–1168.Find this resource:

Hilgeman, M. M., Durkin, C. W., Sun, F., DeCoster, J., Allen, R. S., Gallagher-Thompson, D., & Burgio, L. (2009). Testing a theoretical model of the stress process in Alzheimer’s caregivers with race as a moderator. The Gerontologist, 49, 248–261.Find this resource:

Hooker, K., Monahan, D. J., Bowman, S. R., Frazier, L. D., & Shifren, K. (1998). Personality counts for a lot: Predictors of mental and physical health of spouse caregivers in two disease groups. Journals of Gerontology: Series B, Psychological Sciences and Social Sciences, 53, 73–85.Find this resource:

Kemper, S., Finter-Urczyk, A., Ferrell, P., Harden, T., & Billington, C. (1998). Using elderspeak with older adults. Discourse Processes, 25, 55–73.Find this resource:

Knight, B. G., & Sayegh, P. (2010). Cultural values and caregiving: The updated sociocultural stress and coping model. Journals of Gerontology: Series B, Psychological Sciences and Social Sciences, 65, 5–13.Find this resource:

Lamura, G., Mnich, E., Nolan, M., Wojszel, B., Krevers, B., Mestheneos, L., & Döhner, H. (2008). Family carers’ experiences using support services in Europe: Empirical evidence from the EUROFAMCARE study. The Gerontologist, 48, 752–771.Find this resource:

Lazarus, R., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer.Find this resource:

Logsdon, R. G., McCurry, S. M., & Teri, L. (2007). Evidence-based psychological treatments for disruptive behaviors in individuals with dementia. Psychology and Aging, 22, 28–36.Find this resource:

Losada, A., Márquez-González, M., Romero-Moreno, R., & López, J. (2014). Development and validation of the experiential avoidance in caregiving questionnaire (EACQ). Aging and Mental Health, 18, 897–904.Find this resource:

Losada, A., Márquez-González, M., Romero-Moreno, R., Mausbach, B., López, J., Fernández-Fernández, V., & Nogales-González, C. (2015). Cognitive behavioral therapy (CBT) versus acceptance and commitment therapy (ACT) for dementia family caregivers: Results of a randomized clinical trial. Journal of Consulting and Clinical Psychology, 83, 760–772.Find this resource:

Losada, A., Márquez-González, M., Vara-García, C., Gallego-Alberto, Romero-Moreno, & Olazarán, J. (2017). Impacto psicológico de las demencias en las familias: Propuesta de un modelo integrador. Revista Clínica Contemporánea, 8, 1–27.Find this resource:

Losada, A., Montorio, I., Knight, B. G., Márquez, M., & Izal, M. (2006). Explanation of caregivers’ distress from the cognitive model: The role of dysfunctional thoughts. Psicología Conductual, 14, 115–128.Find this resource:

Márquez-González, M., Cabrera, I., Losada, A., & Knight, B. G. (2018). Attentional avoidant biases as mediators in the association between experiential avoidance and blood pressure in dementia family caregivers. Aging and Mental Health, 22, 669–677.Find this resource:

Márquez-González, M., Losada, A., Izal, M., Pérez-Rojo, G., & Montorio, I. (2007). Modification of dysfunctional thoughts about caregiving in dementia family caregivers: Description and outcomes of an intervention program. Aging and Mental Health, 11, 616–625.Find this resource:

Márquez-González, M., Romero-Moreno, R., & Losada, A. (2010). Caregiving issues in a therapeutic context: New insights from the acceptance and commitment therapy approach. In N. Pachana, K. Laidlaw, & Bob Knight (Eds.), Casebook of clinical geropsychology: International perspectives on practice (pp. 33–53). New York, NY: Oxford. University Press.Find this resource:

Mausbach, B. T., Roepke, S. K., Depp, C. A., Moore, R., Patterson, T. L., & Grant, I. (2011). Integration of the pleasant events (PE) and activity restriction (AR) models: Development and validation of a “PEAR” model of negative outcomes in Alzheimer’s caregivers. Behavior Therapy, 42, 78–88.Find this resource:

Mitrani, V. B., Feaster, D. J., McCabe, B. E., Czaja, S. J., & Szapocznik, J. (2005). Adapting the structural family systems rating to assess the patterns of interaction in families of dementia caregivers. The Gerontologist, 45, 445–455.Find this resource:

Mittelman, M. S., Ferris, S. H., Shulman, E., Steinberg, G., Ambinder, A., Mackell, J. A., & Cohen, J. (1995). A comprehensive support program: Effect on depression in spouse-caregivers of AD patients. The Gerontologist, 35, 792–802.Find this resource:

Montoro-Rodriguez, J., & Gallagher-Thompson, D. (2009). The role of resources and appraisals in predicting burden among Latina and Caucasian female caregivers: Test of an expanded socio-cultural model of stress and coping. Aging and Mental Health, 13, 648–658.Find this resource:

Moore, R. C., Chattillion, E. A., Ceglowski, J., Ho, J., von Känel, R., Mills, P. J., . . . Mausbach, B. T. (2013). A randomized clinical trial of behavioral activation (BA) therapy for improving psychological and physical health in dementia caregivers: Results of the Pleasant Events Program (PEP). Behaviour Research and Therapy, 51, 623–632.Find this resource:

Nogales-González, C., Losada, A., Márquez-González, M., & Zarit, S. H. (2014). Behavioral intervention for reducing resistance in care recipients to attending adult day care centers: A pilot study. Clinical Gerontologist, 37, 493–505.Find this resource:

Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583–591.Find this resource:

Pinquart, M., & Sörensen, S. (2006). Helping caregivers of persons with dementia: Which interventions work and how large are their effects? International Psychogeriatrics, 18, 577–595.Find this resource:

Qualls, S. H. (2014). Family therapy with ageing families. In N. A. Pachana & K. Laidlaw (Eds.), The Oxford handbook of clinical geropsychology (pp. 710–732). Oxford, UK: Oxford University Press.Find this resource:

Robinson-Whelen, S., Tada, Y., MacCallum, R. C., McGuire, L., & Kiecolt-Glaser, J. K. (2001). Long-term caregiving: What happens when it ends? Journal of Abnormal Psychology, 110, 573–584.Find this resource:

Romero-Moreno, R., Márquez-González, M., Losada, A., Gillanders, D. T., & Fernández-Fernández, V. (2014). Cognitive fusion in dementia caregiving: Psychometric properties of the Spanish version of the Cognitive Fusion Questionnaire. Behavioral Psychology, 22, 117–132.Find this resource:

Roth, C. L., Fredman, L., & Haley, W. E. (2015). Informal caregiving and its impact on health: A reappraisal from population-based studies. The Gerontologist, 55, 309–319.Find this resource:

Russo, J., Vitaliano, P. P., Brewer, D. D., Katon, W., & Becker, J. (1995). Psychiatric disorders in spouse caregivers of care recipients with Alzheimer’s disease and matched controls: A diathesis-stress model of psychopathology. Journal of Abnormal Psychology, 104, 197–204.Find this resource:

Ryan, R. M., & Deci, E. L. (2001). On happiness and human potentials: A review of research on hedonic ad eudaimonic well-being. Annual Review of Psychology, 52, 141–166.Find this resource:

Sallim A. B., Sayampanathan, A. A., Cuttilan, A., & Ho, R. C. M. (2015). Prevalence of mental health disorders among caregivers of patients with Alzheimer disease. Journal of Post-Acute and Long-Term Care Medicine, 16, 1034–1041.Find this resource:

Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. JAMA, 282, 2215–2219.Find this resource:

Smith, M., Gerdner, L. A., Hall, G. R., & Buckwalter, K. C. (2004). History, development, and future of the progressively lowered stress threshold: A conceptual model for dementia care. Journal of the American Geriatrics Society, 52, 1755–1760.Find this resource:

Spira, A. P., Beaudreau, S. A., Jimenez, D., Kierod, K., Cusing, M. M., Gray, H. L., & Gallagher-Thompson, D. (2007). Experiential avoidance, acceptance, and depression in dementia family caregivers. Clinical Gerontologist, 30, 55–64.Find this resource:

Steffen, A. M., Gallagher-Thompson, D., Arenella, K., Au, A., Cheng, S. T., Crespo, M., . . . Romero-Moreno, R. (2018). Validating the revised scale for caregiving self-efficacy: A cross-national review. The Gerontologist.Find this resource:

Teri, L., Gibbons, L. E., McCurry, S. M., Logsdon, R. G., Buchner, C. M., Barlow, W. E., . . . Larson, E. B. (2003). Exercise plus behavioral management in patients with Alzheimer disease: A randomized controlled trial. JAMA, 290, 2015–2022.Find this resource:

Teri, L., Logsdon, R. G., Whall, A. L., Weiner, M. F., Trimmer, C., Peskind, E., & Thal, L. (1998). Treatment for agitation in dementia patients: A behavior management approach. Psychotherapy: Theory, Research, Practice, Training, 35, 436–443.Find this resource:

Toot, S., Swinson, T., Devine, M., Challis, D., & Orrell, M. (2017). Causes of nursing home placement for older people with dementia: A systematic review and meta-analysis. International Psychogeriatrics, 29, 195–208.Find this resource:

Vitaliano, P. P., Strachan, E., Dansie, E., Goldberg, J., & Buchwald, D. (2014). Does caregiving cause psychological distress? The case for familial and genetic vulnerabilities in female twins. Annals of Behavioral Medicine, 47, 198–207.Find this resource:

Vitaliano, P. P., Young, H. M., Russo, J., Romano, J., & Magana-Amato, A. (1993). Does expressed emotion in spouses predict subsequent problems among care recipients with Alzheimer’s disease? Journal of Gerontology, 48, 202–209.Find this resource:

Vitaliano, P. P., Young, H. M., & Zhang, J. (2004). Is caregiving a risk factor for illness? Current Directions in Psychological Science, 13, 13–16.Find this resource:

de Vugt, M. E., Riedijk, S. R., Aalten, P., Tibben, A., van Swieten, J. C., & Verhey, F. R. J. (2006). Impact of behavioural problems on spousal caregivers: A comparison between Alzheimer’s disease and frontotemporal dementia. Dementia and Geriatric Cognitive Disorders, 22, 35–41.Find this resource:

Weinbrecht, A., Rieckmann, N., & Renneberg, B. (2016). Acceptance and efficacy of interventions for family caregivers of elderly persons with a mental disorder: A meta-analysis. International Psychogeriatrics, 28, 1615–1629.Find this resource:

World Health Organization. (2015). World report on ageing and health. Luxembourg, Belgium: World Health Organization.Find this resource:

Wilz, G., & Soellner, R. (2016). Evaluation of a short-term telephone-based cognitive behavioral intervention for dementia family caregivers. Clinical Gerontologist, 39, 25–47.Find this resource:

Wolff, J. L., Spillman, B. C., Freedman, V. A., & Kasper, J. D. (2016). A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Internal Medicine, 176, 372–379.Find this resource:

Zarit, S. H., & Femia, E. E. (2008). A future for family care and dementia intervention research? Challenges and strategies. Aging and Mental Health, 12, 5–13.Find this resource: