Gabriele Wilz, PhD - Friedrich-Schiller-Universität (Friedrich Schiller University Jena)
People caring for an older family member, or a family member with dementia, are at high risk for developing health impairments such as exhaustion and depressive symptoms (Collins & Kishita, 2019; Kaddour & Kishita, 2019). As the population ages and caring for a family member becomes more and more common, there is an urgent need to bolster family caregivers’ (CGs) resilience. There is robust evidence that psychotherapeutic interventions can effectively improve family CGs mental health and quality of life (Cheng et al., 2019; Toepfer et al., 2021). A primary focus of psychotherapy with family caregivers should be addressing CGs dysfunctional and functional thoughts about caregiving (Risch et al., 2022; Wilz, 2023).
Cognitions Moderate the Experience of Caregiving
The family caregiving situation can certainly be characterized as a chronically and highly demanding situation. Nevertheless, people react to the demands of caregiving very differently. Some people experience caregiving as manageable or even rewarding, while other people suffer intensely. How a person experiences caregiving depends to some extent on their own, subjective appraisals and evaluations of the situation. According to the transactional stress model (Lazarus & Folkman, 1984) and generic cognitive models of depression and mental diseases (Beck & Haigh, 2014), cognitive appraisal processes play a decisive role in how people react to stressful situations and the formation of mental illness. Likewise, family CGs automatic thoughts and attitudes are seen as key determinants of their ability to contend with the strains (Risch et al, 2022; Losada, Montorio et al., 2006) and experience the positive aspects (Yu et al., 2018) of caregiving.
As Losada, Montorio, and colleagues (2006) describe, there are pathological and healthy cognitive pathways in caregiving. Dysfunctional thoughts and attitudes, such as perfectionism, unrealistic goals and standards, and irrational interpretations of the care recipient’s behavior are common (Risch et al., 2022). Among family caregivers, dysfunctional cognitions are strongly associated with the perceived burden of caregiving (Vázquez-Sánchez et al. 2012), physical and mental stress (Losada et al., 2011; McNaughton et al., 1995; Sullivan et al., 2016) and depression (Márquez-González et al., 2007; McNaughton et al., 1995). Moreover, CGs dysfunctional cognitions can elicit a negative emotional response towards the care recipient, which in turn can instigate a negative cycle of problematic interactions between the caregiver and care recipient (Losada, Montorio, et al., 2006). In contrast, caregivers who have functional cognitions about caregiving (e.g., high caregiving self-efficacy; confidence that one is able to manage the demands of caregiving) are more likely to experience positive aspects of caregiving (Semiatin & O’Conner, 2012).
Although well-established theoretical models and existing empirical evidence both point to family CGs cognitions as key determinants of their resilience, few caregiver intervention concepts have explicitly aimed to modify cognitions as a treatment goal (Wilz, 2023). The few existing studies found that cognitive behavior therapy (CBT) reduced CGs depression specifically by reducing their dysfunctional thoughts (Losada et al., 2011; Márquez-Gonzalez et al., 2007). These findings substantiate the importance of addressing CGs care-related cognitions in psychotherapeutic interventions.
Which Cognitions Matter? Four Domains of Dysfunctional and Functional Care-related Cognitions
Risch and colleagues (2022) proposed four domains of dysfunctional and functional care-related cognitions particularly relevant for family caregivers of people with dementia:
(1) Dysfunctional caregiving standards include a sense of bearing the sole responsibility for caregiving; perfectionism; and self-blame when caregiving ideals have not been met. Beliefs that caregiving “must” be provided on one’s own, or that “strangers” could not provide adequate care, may prevent caregivers from utilizing professional and informal sources of support. Some caregivers may see their need for support as a personal failure. Caregivers may feel guilty or ashamed if they think they are unable to provide adequate care on their own, or that they have fallen short of their own ideals. They may feel guilty delegating responsibility to someone else, even temporarily, or devoting time and attention to their own needs. Indeed, family caregivers of people with dementia with higher dysfunctional caregiving standards tend to have worse mental health (Cabrera et al., 2021; Losada et al., 2010; Losada, Robinson Shurgot, et al., 2006; McNaughton et al., 1995; Risch et al., 2022).
(2) Dysfunctional thoughts and attitudes about dementia include misinterpretations of the care recipient’s behavior; irrational expectations; and inaccurate assumptions about the pathogenesis and course of the disease. Family members often experience the behavioral symptoms of dementia as expressions of spite, ignorance, or defiance. Such misinterpretations can be emotionally burdensome and lead to conflicts with the care recipient. Some family caregivers harbor the belief that their past behavior caused their family member to develop dementia. Among family caregivers of people with dementia, more accurate knowledge about dementia and caregiving may predict better mental health, while dysfunctional attitudes toward dementia have been associated with higher depression and anxiety (Risch et al., 2022).
(3) Functional thoughts and attitudes about self-care include CGs beliefs about leisure and regeneration, and the importance of recovery for the quality of care. Clinical experience suggests that caregivers who take care of themselves tend to cope better with the caregiving situation over the long term. Positive beliefs about self-care might help caregivers to acknowledge their own needs and individual limits, and enable them to mentally distance themselves from the caregiving situation when appropriate. Evidence suggests that caregivers who engage in more self-care and leisure activities, and perceive more leisure time, also perceive less burden and have better mental health (Losada et al., 2010; Romero-Moreno et al., 2011; Schüz et al., 2015; Waligora et al., 2018). Based on their literature review, Oliveira and colleagues (2019) concluded that interventions designed to improve CGs health and lifestyle improved CGs depression, perceived burden, and quality of life.
(4) Functional thoughts and attitudes concerning acceptance include assumptions about the controllability of the caregiving situation; how caregivers process negative, unchangeable events; and detachment in stressful situations (i.e., taking the perspective of an observer who is less affected by the situation; Kalish et al., 2005). According to the model of acceptance and commitment therapy (ACT; see Hayes et al., 2006), acceptance is the willingness to experience unchangeable, adverse external (e.g., a family member’s dementia diagnosis) and internal (e.g., negative emotions and thoughts) events without trying to avoid or suppress them (e.g., denial, substance use). Among family caregivers, acceptance is associated with better mental health (Risch et al., 2024; Losada et al., 2015) and lower depression (Spira et al., 2007). In contrast, the avoidance or suppression of negative thoughts and emotions (i.e., experiential avoidance) is associated with worse depression, anxiety, physical health, and health-related quality of life (Risch et al., 2024; Goodwin & Emery, 2016; Wenze et al., 2018). Functional thoughts and attitudes concerning acceptance are associated with lower depression and anxiety in family caregivers of people with dementia (Risch et al., 2022, 2024). Caregivers who approach the caregiving situation with a certain degree of detachment and a high degree of acceptance may be able to react to stressful situations more pragmatically and permit themselves more leisure time.
Strategies for Addressing CGs Care-related Cognitions
Interventions for family caregivers of people with dementia should aim to reduce dysfunctional attitudes towards dementia and dysfunctional caregiving standards while, at the same time, also aim to foster functional cognitions related to self-care and acceptance. In the first sessions of work with CGs, psychotherapists should therefore focus on uncovering and identifying CGs own, individual automatic and unconscious thought patterns. The questionnaire from Risch and colleagues (2022) can aid in the assessment of family CGs dysfunctional and functional cognitions about caregiving.
In the next step, therapists should work with family caregivers to clarify the links between the caregiver’s dysfunctional (unhelpful) cognitions on the one hand, and their behavior, emotions and experience of burden on the other hand. Acknowledging factors such as incongruence; role discrepancies; motives for caregiving; and social, cultural, and familial norms as reference points for self-appraisals can support developing clarity and new constructive perspectives. Once the links between specific cognitions and specific caregiving experiences have been established, caregivers are in a better position to resolve conflicts between their caregiving tasks and their own values and needs; clarify their motivation for caregiving; and approach their caregiving decisions more deliberately. Subsequently, CGs dysfunctional cognitions can be evaluated, questioned and re-negotiated. Through Socratic dialogue, guided discovery, and Ellis’ ABC Model (A: Activating Event, B: Beliefs, C: Consequences, Ellis, 1973), the therapist and caregiver can work out alternative, more helpful ways of thinking as well as possibilities to practice these new ways of thinking in real life.
Approaches based on ACT are conducive to strengthening family CGs functional cognitions about self-care and acceptance. In line with an ACT-based approach, therapists should direct their focus toward helping caregivers come to terms with the unchangeable aspects of the care recipient’s condition and the caregiving situation. It can be particularly helpful to facilitate the expression of distressing emotions and coping with loss and grief. Therapists can also employ ACT-based approaches to encourage family caregivers to live in closer alignment with their own values and needs (Risch et al., 2024).
In sum, psychotherapists working with family caregivers should consider following an integrative approach combining aspects of CBT and ACT that together address CGs dysfunctional and functional cognitions about caregiving while supporting skillful relationship with the challenges inherent in the CGs role. The Tele.TAnDem intervention concept is an effective psychotherapeutic intervention for family caregivers based primarily on CBT and ACT (Wilz, 2023). The manual provides comprehensive and specific guidance on how therapists can work with caregivers to recognize debilitating thought patterns, and develop alternative, potentially stress-reducing and encouraging ways of thinking.
Beck, A. T., & Haigh, E. A. P. (2014). Advances in cognitive theory and therapy: The generic cognitive model. Annual Review of Clinical Psychology, 10, 1-24. https://doi.org/10.1146/annurev-clinpsy-032813-153734
Cabrera, I., Márquez-González, M., Kishita, N., Vara-García, C., & Losada, A. (2021). Development and validation of an Implicit Relational Assessment Procedure (IRAP) to measure implicit dysfunctional beliefs about caregiving in dementia family caregivers. The Psychological Record, 71(1), 41-54. https://doi.org/10.1007/s40732-020-00445-8
Cheng, S.-T., Au, A., Losada, A., Thompson, L.W. & Gallagher-Thompson, D. (2019). Psychological interventions for dementia caregivers: What we have achieved, what we have learned. Current Psychiatry Reports, 21(59), 1-12. https://doi.org/10.1007/s11920-019-1045-9
Collins, R. N., & Kishita, N. (2019). Prevalence of depression and burden among informal caregivers of people with dementia: A meta-analysis. Ageing & Society, 40(11), 1-38. https://doi.org/10.1017/S0144686X19000527
Ellis, A. (1973). Humanistic psychotherapy: The rational-emotive approach. New York: McGraw-Hill.
Goodwin, C.L., & Emery, C.F. (2016). Lower experiential avoidance is associated with psychological well-being and improved cardiopulmonary endurance among patients in cardiac rehabilitation. Journal of Cardiopulmonary Rehabilitation and Prevention, 36(6), 438-444. https://doi.org/10.1097/HCR.0000000000000182
Hayes, S.C., Luomaa, J.B., Bond, F.W., Masudaa, A., & Lillies, J. (2006). Acceptance and Commitment Therapy: Model, processes and outcomes. Behaviour Research and Therapy, 44(2006), 1–25. https://doi.org/10.1016/j.brat.2005.06.006
Kaddour, L., & Kishita, N. (2019). Anxiety in informal dementia carers: A meta-analysis of prevalence. Journal of Geriatric Psychiatry and Neurology, 33, 161-172. https://doi.org/10.1177/0891988719868313
Kalisch, R., Wiech, K., Critchley, H.D., Seymour, B., O'Doherty, J.P., Oakley, D.A., Allen, P., & Dolan, R.J. (2005). Anxiety reduction through detachment: Subjective, physiological, and neural effects. Journal of Cognitive Neuroscience, 17(6), 874-83. https:// doi:10.1162/0898929054021184
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. Springer.
Losada, A., Márquez-González, M., & Romero-Moreno, R. (2011). Mechanisms of action of a psychological intervention for dementia caregivers: Effects of behavioral activation and modification of dysfunctional thoughts. International Journal of Geriatric Psychiatry, 26(11), 1119–1127. https://doi.org/10.1002/gps.2648
Losada, A., Márquez-González, M., Romero-Moreno, R., Mausbach, B.T., López, J., Fernández-Fernández, V., & Nogales-González, C. (2015). Cognitive-behavioral therapy (CBT) versus acceptance and commitment therapy (ACT) for dementia family caregivers with significant depressive symptoms: Results of a randomized clinical trial. Journal of Consulting and Clinical Psychology, 83(4), 760-772. https://doi.org/10.1037/ccp0000028
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(1), 115-128.
Losada, A. Pérez-Peñaranda, A., Rodriguez-Sanchez, E., Gomez-Marcos, M.A., Ballesteros-Rios, C., Ramos-Carrera, I.R., Campo-de la Torre, Ma A., & García-Ortiz, L. (2010). Leisure and distress in caregivers for elderly patients. Archives of Gerontology and Geriatrics, 50(3), 347-350. https://doi.org/10.1016/j.archger.2009.06.001
Losada, A., Robinson Shurgot, G., Knight, B. G., Márquez, M., Montorio, I., Izal, M., & Ruiz, M. A. (2006). Cross-cultural study comparing the association of familism with burden and depressive symptoms in two samples of Hispanic dementia caregivers. Aging & Mental Health, 10(1), 69-76. https://doi.org/10.1080/13607860500307647
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 programme. Aging & Mental Health, 11(6), 616-625. https://doi.org/10.1080/13607860701368455
McNaughton, M.E., Patterson, T.L., Smith, T.L., & Grant, I. (1995). The relationship among stress, depression, locus of control, irrational beliefs, social support, and health in Alzheimer’s disease caregivers. The Journal of Nervous and Mental Disease, 183, 78–85. https://doi.org/10.1097/00005053-199502000-00003
Oliveira, D., Sousa, L. & Orrell, M. (2019). Improving health-promoting self-care in family carers of people with dementia: a review of interventions. Clinical Interventions in Aging, 14, 515-523. https://doi.org/10.2147/CIA.S190610
Risch, A. K., Mund, M., & Wilz, G. (2022). The Caregiver Thoughts Scale: An instrument to assess functional and dysfunctional thoughts about caregiving. Clinical Gerontologist, 4, 1-14. https://doi.org/10.1080/07317115.2022.2153775
Risch, A. K., Lechner-Meichsner, F., & Wilz, G. (2024, March 23). Evaluation of telephone-based acceptance and commitment therapy for caregivers of persons with dementia. PsyArXiv. https://doi.org/10.31234/osf.io/apbuh
Romero-Moreno, R., Márquez-González, M., Mausbach, B.T., & Losada, A. (2011). Variables modulating depression in dementia caregivers: A longitudinal study. International Psychogeriatrics, 24(8), 1316-1324. https://doi.org/10.1017/S1041610211002237
Semiatin, A.M., & O'Connor, M.K. (2012). The relationship between self-efficacy and positive aspects of caregiving in Alzheimer's disease caregivers. Aging & Mental Health, 16(6), 683-688. https://doi.org/10.1080/13607863.2011.651437
Schüz, B., Czerniawski, A., Davie, N., Miller, L., Quinn, M. G., King, C., Carr, A., Elliott, K.-E. J., Robinson, A., & Scott, J. L. (2015). Leisure time activities and mental health in informal dementia caregivers. Applied Psychology: Health and Well-Being, 7(2), 230-248. https://doi.org/10.1111/aphw.12046
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. https://doi.org/10.1300/J018v30n04_04
Sullivan, K.A., Beattie, E., Khawaja, N.G., Wilz, G., & Cunningham, L.C. (2016). The Thoughts Questionnaire (TQ) for family caregivers of people with dementia. Dementia, 15, 1474 - 1493. https://doi.org/10.1177/1471301214553038
Toepfer, N. F., Sittler, M. C., Lechner-Meichsner, F., Theurer, C., & Wilz, G. (2021). Long-term effects of telephone-based cognitive-behavioral intervention for family caregivers of people with dementia: Findings at 3-year follow-up. Journal of Consulting and Clinical Psychology, 89(4), 341–349. https://doi.org/10.1037/ccp0000640
Vázquez-Sánchez, M.Á., Aguilar-Trujillo, M.P., Estébanez-Carvajal, F.M., Casals-Vázquez, C., Casals-Sánchez, J.L., & Heras-Pérez, M.C. (2012). The influence of dysfunctional thoughts on the burden of the dependent person caregiver; Enfermeria Clinica, 22(1), 11-17. https://doi.org/10.1016/j.enfcli.2011.07.002
Waligora, K. J., Bahouth, M. N., & Han, H.-R. (2018). The self-care needs and behaviors of dementia informal caregivers: A systematic review. The Gerontologist, 59(5), e565-e583. https://doi.org/10.1093/geront/gny076
Wenze, S.J., Gaugler, T.L., Sheets, E.S., & DeCicco J.M. (2018). Momentary experiential avoidance: Within-person correlates, antecedents, and consequences and between-person moderators. Behavior Research and Therapy, 107, 42-52. https://doi.org/10.1016/j.brat.2018.05.011
Wilz, G. (2023). Psychotherapeutic support for family caregivers of people with dementia. Hogrefe Publishing.
Wilz, G., Reder, M., Meichsner, F., & Soellner, R. (2018). The Tele.TAnDem intervention: telephone-based CBT for family caregivers of people with dementia. The Gerontologist, 58(2), e118-e129. https://doi.org/10.1093/geront/gnx183
Yu, D.S.F, Cheng, S.T., & Wang, J. (2018). Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. International Journal of Nursing Studies, 79, 1- 26. https://doi.org/10.1016/j.ijnurstu.2017.10.008
