Working with family caregivers of people with dementia: The importance of functional thoughts and accepting the unchangeable

There is no doubt that caring for a family member or friend with dementia is extremely challenging. Family caregivers have often entered into the caregiving role due to a sense of obligation, without much deliberation or preparation. They frequently lack knowledge about the care recipient’s condition or support services. Many family caregivers throw themselves fully into the caregiving role, to the deferment of their own needs. They may have unrealistic expectations, blame themselves for their loved one’s poor health or difficult behavior, or believe that they are the only person able to provide sufficient support. Family caregivers also experience a lot of difficult situations and emotions, such as the loved one’s declining health, changes in the relationship with the care recipient (e.g., role reversal, loss of intimacy, dependency); guilt; resentment of the caregiving situation; and grief. It is well-documented that family caregivers have elevated rates of depression and anxiety, lower quality of life, and higher physical morbidity.

Strong evidence supports the effectiveness of interventions based on cognitive behavioral therapy for reducing caregivers’ depression, anxiety and perceptions of caregiver burden (e.g., Cheng et al., 2019; Töpfer et al., 2021; Wilz et al., 2018). One basic premise of CBT is that how people feel is determined by the way in which they interpret and react to situations rather than by the situations per se. CBT-based approaches focus on helping caregivers to gain a more complete and accurate understanding of the situation, identify specific areas where change might be possible, and modify some of their thoughts and behaviors so that the caregiving situation becomes more bearable. Therefore, CBT-based approaches are highly suitable for helping family caregivers to better understand and cope with their loved one’s behavior, addressing caregivers’ dysfunctional thoughts or attitudes, increasing caregivers’ engagement in positive and meaningful activities (also with the care recipient), and helping caregivers solve practical problems (e.g., identify and implement relevant support services). Cognitive restructuring, and guidance to promote caregivers’ problem-solving capacities, emotion regulation, stress management, self-care, and coping with loss and grief can be particularly useful.

It is crucial, however, for therapists to also recognize that many aspects of the caregiving situation cannot be modified. Caring for a family member or friend with dementia means directly experiencing the massive alterations caused by the disease. The relationship with the affected person changes and is gradually lost in its previous form. There is no way to reverse a dementia diagnosis, or avoid the pain of experiencing the changes in a loved one’s personality as the disease progresses. Helping caregivers come to terms with the averse and unchangeable aspects of the caregiving experience is thus an equally important part of helping them to adapt. Caregivers who are able to adopt a more accepting attitude become less preoccupied with the distress of the caregiving situation, and better able to (re-)engage with the positive aspects of life (Risch et al., 2022).

When it comes to bolstering family caregivers’ acceptance, approaches based on acceptance and commitment therapy (ACT; Hayes et al.,1999) are particularly suitable. The central premise of ACT is that trying to control or change painful emotions or psychological experiences are counterproductive; suppressing negative thoughts and emotions ultimately leads to more distress. A primary aim of ACT is therefore to adopt a non-judgemental, more accepting mindset, and decrease experiential avoidance. ACT also uses value-oriented behavioral activation to gradually encourage pursuit of one’s own personal goals and values. ACT-based approaches include, for example, verbalizing and normalizing negative emotions, developing strategies for regulating emotions in acute stressful situations, mindfulness exercises, and working on the general level of tension. The three existing randomized controlled studies have found that ACT effectively reduces family caregivers’ distress and improves their well-being (Losada et al, 2015; Márquez-González et al, 2020; Risch, Lechner-Meichsner, & Wilz, 2024). 

In conclusion, an integrative approach based on both CBT and ACT can support family caregivers better than traditional CBT alone (Wilz, 2023). To illustrate, therapists are more likely to improve caregivers’ self-care when they take not only a problem-solving approach (e.g., helping caregivers to plan and implement activities within the immense and very real constraints of the caregiving situation), but also by taking an acceptance-based approach (e.g., helping family caregivers to accept the guilt and stress they may associate with leaving care in the hand of another so they can enjoy social situations or focus on other responsibilities). The Tele.TAnDem intervention concept (Wilz, 2023) incorporates elements of CBT and ACT, as well as client-centered psychotherapy. The intervention can be delivered to groups or individuals; face-to-face, via telephone, or online. Six randomized controlled trials have confirmed the effectiveness and feasibility of the intervention in various settings (Meichsner et al., 2019; Töpfer et al., 2021; Wilz et al., 2018). The intervention manual provides specific, comprehensive guidance on working with family caregivers and includes case examples, excerpts from real therapy sessions, work sheets, and therapeutic exercises.

References:

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 

Hayes, S. C., Strosahl, K., Wilson, K. G., Bissett, R. C., Pistorello, J., Toarmino, D., . . . McCurry, S. M. (2004). Measuring experiential avoidance: A preliminary test of a working model. The Psychological Record, 54(4), 553–578. https://doi.org/10.1007/BF03395492 

Losada, A., Marquez-Gonzalez, M., Romero-Moreno, R., Mausbach, B. T., Lopez, J., Fernandez-Fernandez, V., & Nogales-Gonzalez, 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

Márquez-González, M., Romero-Moreno, R., Cabrera, I., Olmos, R., Pérez-Miguel, A., & Losada, A. (2020). Tailored versus manualized interventions for dementia caregivers: The functional analysis-guided modular intervention. Psychology and Aging, 35(1), 41–54. https://doi.org/10.1037/pag0000412

Meichsner, F., Töpfer, N. F., Reder, M., Soellner, R., & Wilz, G. (2019). Telephone-based cognitive behavioral intervention improves dementia caregivers quality of life. American Journal of Alzheimers Disease & Other Dementias. https://doi.org/10.1177/1533317518822100 

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

Risch, A. K., Mund, M., & Wilz, G. (2022). The Caregiver Thoughts Scale: An Instrument to Assess Functional and Dysfunctional Thoughts about Caregiving. Clinical Gerontologist, 1-14. https://doi.org/10.1080/07317115.2022.2153775

Töpfer, 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 

Wilz, G. (2023). Psychotherapeutic support for family caregivers of people with dementia. Hogrefe Publishing.

Wilz, G., Weise, L., Reiter, C., Reder, M., Machmer, A., & Soellner, R. (2018). Intervention helps family caregivers of people with dementia attain own therapy goals. American Journal of Alzheimer’s Disease & Other Dementias, 33(5), 301 – 308. https://doi.org/10.1177/1533317518769475

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. doi: 10.1093/geront/gnx183