The caregiver

Dementia is a disease that not only affects the persons, who are suffering from dementia, but also the people who constantly take care of them. Literature on this subject is extensive, in particular as regards the phenomena of burnout and care load (known as “burden”), especially in the cases in which the patients with dementia have behavioral disorders, such as anxiety, depression, irritability, apathy, impulsiveness and aggressiveness, which make care management more complex and burdensome for the caregiver. The scientific literature demonstrates how a high care load is able to negatively influence the quality of life of the caregiver who constantly takes care of the person with dementia, leading the caregiver to manifest discomfort (Nobili et al., 2011; Seng et al ., 2010).

The caregivers who constantly take care of their families affected by cognitive impairment are subjected to physical, psychological, emotional and social stress; all this falls within what is called burden, or care burden (Sorrell, 2014). People under constant stress are more likely to get sick, either mentally (generalized anxiety disorder or frequent panic attacks, depressive disorders) or physically, because acute and prolonged stress affects the immune system by lowering the body’s defenses and decreasing the healing abilities of body tissues, and limits the normal functioning of the organs (e.g. chronic fatigue syndrome).

In the literature, there are some tools that can be used to evaluate this type of discomfort, such as the Caregiver Burden Inventory (CBI) (Novak M. and Guest C., Gerontologist, 29, 798-803, 1989) and Zarit Burden Inventory (1987).

From the studies conducted by Hiel et al. (2015) on the health of caregivers who constantly assist a family member suffering from dementia at home, it seems that the stress deriving from caring for the family member could significantly increase the risk of incurring diseases such as hypertension and cardiovascular risk. The results of a study published in 2014 (Adelman, Tmanova, Delgado, Dion and Lachs, 2014) suggested that there are higher levels of psychological burden in caregivers who are spouses of the patient affected by cognitive impairment, who assist the family member for many hours during the day, with advanced age and a low level of education. Depression, social withdrawal, financial difficulties and the condition for which it was not the caregiver who voluntarily chose to be such, but had to adapt to the sudden needs of the family member, are further factors which might play a significant role, although, at present, the exact impact of these factor is not clear.

Neurodegenerative diseases are pathologies that are also characterized by a long progression and a long process of care; unfortunately, however, the increase in the need for long-term care is not directly correlated with the services currently available, since these can be insufficient and inadequate (Burgio et al., 2010). “Long Term Care” (LTC) is a long-term care path: this is a protective solution that starts when persons suffering from neurodegenerative diseases stop being self-sufficient (https://forecasts.en/wiki/ terms/long-term-care).