Introduction

Providing care to persons with dementia is an experience related to challenges and opportunities. Family caregivers are the mainstay of support for people with dementia and subsequently embody crucial players in the terrain of dementia management. To whom does actually the term family caregiver refer? The term encompasses partners, children, relatives, neighbours or friends, who provide care primarily within the framework of a personal relationship rather than on the basis of financial remuneration. Both the contexts of informal care and the constellations of individual caregivers are highly variable. Family caregivers may live with, nearby, or far away from the person with dementia and provide care of shorter or longer duration episodically, daily or occasionally. Living with the care recipient is related to greater challenges, since this case people have little choice in refusing or accepting to take on the caregiving role, were shown to be less aware of the toll that caregiving is taking on them and are physically and mentally more vulnerable due to their older age and related morbidities. At the early stages of dementia the caregiver may help with instrumental activities of daily living such as management, financial issues, planning of phycisian’s consultations, shopping, making appointments and providing transportation. Whilst as the symptoms progress the involvement of caregivers concentrates on less complex activities such as bathing, dressing, eating, or toileting and in severe dementia the caregiver’s constant supervision may be necessary.

Family caregivers may experience deep despair during the course of the dementia syndrome. According to the World Alzheimer Report 2016 the provided care is characterized by fragmentation, lack of coordination, whilst it is not tailored to individual needs of people living with dementia and their carers. The gap between the increasing real-life needs and the lack of responsiveness to these needs triggers the development of depression, fears or even suicidal thoughts in caregivers. Such mental constellations lead to low sense of competence and control and subsequently undermine the quality of the care provided to persons with dementia. Family caregivers desperately seek existential balance and meaning in the shifting and unstable landscape of dementia. Despite the public campaigns and systematic efforts to sensitize communities to issues related to dementia, daily life at home, caring for and living with people suffering from dementia embodies a hidden, uncompehended, and highly uncertain world, in which they are in fact supposed to scrape through alone. In the following lines light will be shed to what does actually mean to live with dementia from the perspective of family members who try to be involved more or less actively in the care of their loved one.