What is a "care crisis“ in dementia? Sonata Mačiulskytė, Chairperson of the European Dementia Carers Working Group shares her own experience


Anyone caring for a loved one at home faces many challenges. Often challenges are influenced by our inability to ask for help. It was the same for me. I want to share my experience. Some of the stressors that can lead to a crisis from the perspective of informal caregivers are: a lack of knowledge about care for people with dementia, miscommunication with doctors, a lack of time for personal and social activities, the emotional toll which can increase as dementia progresses, the escalating costs and caregiver exhaustion. The term "care crisis" has been used in the context of health and social policies for the last few years and usually refers to the economic problems caused by care provision. Some of the stressors listed above affected me, but my "care crisis" wasn't about that. My care crisis was ultimately caused by my lack of knowledge about the courses of Parkinson’s and dementia and, in the absence of an available network of people who could be involved in caregiving, I did not take decisive action from the very beginning to develop such a network.

The severity of my mother’s health decline, which required more intense care, coupled with the efforts I had to make to maintain constant professional engagement involved me in a vicious circle: although you can't run anymore, you have to, because if you stop, you will be kicked out of the circle. In my case, that circle symbolised a professional career, failure to cope with care, etc. My time resources for seeking help became so limited that searches for services at the daycare centre or respite services became random. There were also no close relatives or friends around, whom I could have asked for help. My ultimate approach was that, since my mother has paid taxes all her life, she has to be entitled to welfare services.

Our journey to a dementia diagnosis took six years. Despite the tremendous pace of progression and the long-undiagnosed dementia, each of my requests for help was met with additional conditions that seemed impossible to me. All this was accompanied by complete social isolation and the shame of disclosing how difficult it was for me to cope with the care. That's what the "care crisis" was for me. I sought help, but it was late, not concise enough, indecisive, inconsistent and insistent. I read a study, conducted in the middle of the 20th century, which concluded that the most important factors that influence people's reactions during, and the consequences of, crisis experiences are: personality, maturity and the possibility of receiving help at the right time. If I could have this time again, I would seek help earlier.