Caring for someone with dementia is extremely difficult due to the constant, unpredictable demands that are present 24 hours a day. The care goes beyond just physical assistance; it requires a constant state of vigilance because the person with dementia is at risk of confusion, wandering off, or causing dangerous situations. This constant vigilance leads to chronic sleep deprivation and severe exhaustion in the caregiver.
A major source of stress is the unpredictable behavior of the loved one, including rapid mood swings, aggression, apathy, or suspicion. Because dementia is a progressive disease, care needs are constantly increasing. The caregiver must continually adapt to the deteriorating situation, which creates a feeling of never being able to catch their breath or establish a stable routine.
Emotionally, the burden may be even heavier. Informal caregivers experience “anticipatory grief”—constantly saying goodbye to the person they knew while that person is still alive. The relationship inevitably changes from one of equals to that of caregiver-care recipient, leading to deep feelings of loneliness and frustration about the increasingly difficult communication.
The combination of these factors often leads to social isolation and serious health problems. The intensive care leaves little time or energy for a social life, hobbies, or work, often causing the informal caregiver to become lonely. In addition, chronic stress and overload often lead to physical complaints, an increased risk of depression, and burnout, while attention to one’s own health fades into the background.
In short, the burden of informal care in dementia lies in the unique and relentless combination of physical, mental, and emotional strain that never ends. It is a challenge that pushes the caregiver to their limits, making support in the form of respite care, case management, and contact with peers essential.
Courage is not having the strength to continue.
It is continuing when you no longer have the strength.
Napoleon Bonaparte
