Dementia is a chronic deteriorating condition, in which patients experience symptoms such as: cognitive and functional decline, behavioral problems, lack of insight, and personality change. During the course of the illness, the number and severity of symptoms increase and daily functioning and participation in social activities become increasingly difficult for dementia patients, which leads to them becoming more dependent on the care of others.
Usually family members or friends provide care to patients, acting as informal caregivers. Care provision can be a serious burden for caregivers and can have an adverse effect on their mental and physical health, particularly if care is provided frequently or for a prolonged period of time. The progressive and often unpredictable illness process seems to be challenging for caregivers. The burden of caregiving is not only associated with the provision of care. It is also associated with the fact that caregivers, who are often faced with multiple concurrent stressful events and extended constant stress, have to learn to cope with the various symptoms of the illness, both cognitive and behavioral.
“Caregiver burden” is a term that includes all the consequences of caring for a chronically ill patient: economic, social, physical and psychological. In particular, when compared to non-caregivers, caregivers of patients with dementia often experience psychological, behavioral, and physiological effects that can contribute to impaired immune system function. When compared to caregivers of patients with other chronic diseases, such as cancer, caregivers of patients with dementia experience greater burden. The same has been reported for depression and anxiety. Depressive symptoms are also common in caregivers of dementia patients. Rates of depression in caregivers of patients with dementia range, among studies, from 10,5% up to 83%. Caregivers’ burden and depression are highly associated, although their association remains complex. Thus, the burden that caregivers experience is considered to be a key component in dementia treatment.
Despite that, the majority of caregivers lacks support, has poor knowledge of available formal services, and has no guidance on how to plan ahead for the relative’s care needs. It has also been suggested that caregivers should develop effective coping strategies and receive professional support during the course of illness, which may improve their ability to handle the continuously changing conditions and increasing needs of the person with dementia.
Providing support to caregivers is, therefore, essential to promote their well-being and prevent serious caregiver burden. In line with that, numerous interventions have been implemented, aiming either at reducing the objective amount of care provided or at improving the caregiver’s well-being and coping skills via psychoeducational or supportive interventions, support groups, or multicomponent interventions.