Gabriele Wilz, PhD - Friedrich-Schiller-Universität (Friedrich Schiller University Jena)
“Anger is completely normal” – Emotion regulation and stress management for family caregivers of people with dementia
The extreme demands of family caregiving
People who care for a family member with dementia face an abundance of complex, challenging, and time-consuming demands. Caregivers support care recipients with the activities of daily life (e.g., household management; assistance with food and fluid intake; personal hygiene, especially for incontinence; visiting public authorities, attending doctor visits). Caregivers also work to provide a supportive socioemotional context for the care recipient through, for example, conversation and activities. Caregivers also manage the behavioral and psychological symptoms of dementia, such as orientation disorders, confusion, self-threatening behavior, or personality changes. Caregivers often find managing the behavioral and psychological symptoms especially challenging; the care recipient’s behavioral and psychological symptoms are stronger predictors of the caregiver’s well-being and institutionalization of the care recipient than the care recipient’s functional or cognitive impairments, the number of caregiving tasks, or duration of care (Coen et al., 2002; Perren et al., 2006).
The challenges of caring for a family member with dementia are often compounded by number of factors. For instance, caregiving tasks are constantly evolving as the person’s dementia progresses. Caregivers are often working or taking care of their children at the same time that they are providing care. Sleep deprivation, social isolation, lack of leisure time, and loss of personal freedom can further increase stress. Given these multifaceted demands and constraints, it is unsurprising that family caregivers are more likely to experience depressive symptoms and anxiety (Collins & Kishita, 2020; Kaddour & Kishita, 2020), lower quality of life (Kurz & Wilz, 2011), and physical morbidity (Cheng et al., 2017) than their non-caregiving peers.
Anger, rage, and aggression
Family caregivers sometimes react to the extreme demands of caregiving with anger, rage and unintentional aggression. The experience of such strong, negative emotions and impulses can set a vicious cycle in motion. Caregivers feel ashamed or guilty, especially when they have acted out aggressively toward the person with dementia. They reproach themselves for their emotions and lack of self-control. They may feel depressed or anxious about their ability to control their own impulses, doubt their caregiving competence, and ultimately lose self-esteem. The negative feelings and self-blame add to the burden of caregiving, thereby increasing the likelihood that the caregiver will react to challenging situations with anger, rage and aggression.
Caregivers’ anger and subsequent self-reproach can also have serious negative consequences for care recipients. Highly-burdened family caregivers and family caregivers who doubt their competence are more likely to act abusively toward the care recipient (Fang et al., 2019; Karrasch, 2008; Välimäki et al., 2020; Konopik et al., 2022; Sasaki et al., 2007; Stall et al., 2019). In fact, elder abuse and especially psychological violence (typically unintended) frequently occur in high-burden informal caregiving situations. About 5% of caregivers report at least one incidence of physical violence (e.g., shaking or hitting the care recipient); far more report losing patience or lashing out verbally.
In light of its negative impact on caregivers as well as care recipients, addressing anger should be an integral part of psychotherapy with family caregivers (Wilz, 2024). Specifically, therapists and caregivers should work together to reduce caregivers’ anger and impulsive reactions, but also foster caregivers’ acceptance of burdensome emotions in situations that cannot be changed.
Psychotherapeutic strategies for reducing anger, improving emotion regulation, and fostering acceptance
An important aspect of working with family caregivers is de-pathologizing anger and aggressive impulses. Clarifying that it is normal to experience negative emotions and impulses in challenging, stressful situations usually has an immediate, alleviating effect. Family caregivers are relieved to learn that other family caregivers have similar emotions and impulses. Family caregivers should have the opportunity to openly discuss incidences of aggression. Therapists should communicate that aggression is understandable, but also clearly undesirable and avoidable. Family caregivers should be encouraged to reflect on how aggressive reactions can be prevented in the future.
Often family caregivers do not know what to do with their negative emotions; they lack an outlet for their anger. Caregivers should therefore be encouraged to vent and act out their anger in therapy sessions. Crying, screaming, or physical exercises can relieve tension and help caregivers manage stress. It should be noted, however, that this “acting out” of anger should not occur in the presence of the care recipient, as people with dementia can be overwhelmed by the expression of strong negative emotions.
The therapist and family caregiver should also work together to develop strategies to defuse acute feelings of anger. Being able to distance themselves from their emotions can help caregivers analyze a situation more clearly. The therapist and family caregiver should therefore identify how the individual caregiver can distance themselves and “cool down” in acute problem situations (e.g., leaving the room, going for a walk) (Kaluza, 2015). The therapist and caregiver then analyze the extent to which specific problem situations could be improved. Caregivers must have a degree of emotional detachment in order to make this decision. Behavior and situation analyses can be used to analyze the highly stressful situation in more detail and find out strategies for dealing with them constructively. When the caregiver recognizes that it would be possible to improve the situation, the therapist can use problem-solving training to identify and assess potential courses of action.
Some stressful aspects of the caregiving situation cannot be changed, such as the care recipient’s recurring challenging behavior. Therapeutic work should thus not only to address how the caregiving situation could be improved, but also foster caregivers’ acceptance of negative thoughts and emotions in situations that cannot be changed. Here acceptance means perceiving and experiencing negative thoughts and feelings without trying to change or avoid them. There is robust empirical evidence that trying to avoid negative emotions is counterproductive. Research has shown, for instance, that suppressing negative emotions is associated with lower well-being, lower interpersonal functioning, and lower positive affect (Gross & John, 2003). Caregivers who tend to deny or avoid their negative emotions have higher levels of emotional distress (Spira et al, 2007) and higher mean arterial pressure (an indicator of physiological stress; Losada et al., 2014). In contrast, family caregivers of people with dementia with more functional thoughts regarding acceptance have lower depression, anxiety, and grief, and higher psychological quality of life (Risch et al., 2022; Wrede et al., 2024). Working with caregivers to improve their acceptance of negative emotions that cannot be changed can therefore help them maintain their health and well-being. Strategies from acceptance and commitment therapy (e.g., Hayes et al., 2008) are particularly helpful for decreasing caregivers’ experiential avoidance, that is, the tendency to avoid unchangeable aversive emotions, sensations or thoughts (Risch et al., 2024).
Finally, therapists and caregivers should work together to reduce the caregiver’s general level of tension. Relaxation exercises and addressing how the caregiver can pursue valued activities within the constraints of the caregiving situation can help caregivers to reduce stress over the long-term, and thereby lessen the likelihood of anger, rage and impulsive reactions.
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References
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