The self of people with dementia is not unextended in time: Although the remembering self may be gradually fading away, the remaining experiencing self is a self with inner depth, mirroring the life history of the individual. That is not meant to dispute the significant burdens, challenges, and difficulties that come with a dementia diagnosis for both the diseased person as well as family members and friends. Nevertheless, understanding the complexity of the self of people with dementia can help to counterbalance our bias towards the rational and intellectual understanding of who we are. Humans are not only storytellers; humans are also beings with an extremely rich and embodied inner perceptual world (for recent empirical studies with healthy subjects, see, e.g., [
]). This insight has a number of important implications for engaging with people with dementia. First, it would be shortsighted to describe people with dementia as being endangered of losing their self or even of “‘unbecoming’ a self” [
, p. 36]. The remembering self of people with dementia does indeed become increasingly fragmented during the course of the disease while the experiencing self does not or at least to a far smaller degree. Keeping this in mind seems to be of greatest importance as it has been shown that treating people with dementia as if they had already lost their sense of self, may work as a self-fulfilling prophecy, i.e. it may accelerate the disease [
]. Second, losing the abilities of the remembering self, i.e. losing the ability to narrate one’s own life, probably scares many people. It does so because we tend to think of ourselves as storytellers. Acknowledging the importance of body memory can help us to correct this bias and to perceive the perspective of people with dementia as a perspective
s own right
. This has important ethical consequences: when living with dementia is characterized as a radically different state of mind, centered around the experiencing rather than the remembering self, and not so much or at least not solely as a deficient, deteriorated condition, there is reason to believe that terms like autonomy and personhood are still meaningful and that the possibility of encountering other people remains of vital importance, even for people with later stage dementia. Third, our notion of well-being is dominated by the perspective of the remembering self (see [
]): Whether we are happy with our life largely depends on the way we evaluate our life as a whole. For people with dementia, however, the experiential dimension of well-being may become more important. Thus, although the loss of the remembering self may be experienced as negative by people with dementia, living with dementia does not necessarily mean leading an unhappy life. Although symptoms of depression and anxiety are admittedly quite common among people with dementia, it can be shown that even “those who are, from a cognitive standpoint, severely demented” [
, p. 269] can and do experience well-being. Fourth, the shift from the remembering to the experiencing self needs to result in different kinds of interactions with people with dementia. In fact, recognizing and accepting the person’s reality instead of trying to correct it is one of the core principles in person-centered dementia care (for recent reviews see, e.g., [
]). Forcing a narrative upon people with dementia, which they cannot relate to, either because they have forgotten that this narrative used to be the narrative of their life or because this narrative has simply lost its importance, is frustrating for all people involved. Instead, it seems important to validate the momentary feelings, needs, and perceptions of the individual. An interesting concept in this respect is the so-called companionship of themes of being (see, e.g., [
]). Fifth, the knowledge about the structure of the self of people with dementia can inform the development of adequate interventions and environments. The architecture of nursing homes, for instance, should be and is in fact adjusted to the needs and perceptual habits of people with dementia [
]. Besides general rules of thumb regarding the design of well-suited environments, it seems important to acquire profound knowledge about the
person with dementia. Although people with dementia may benefit from sensory stimulation and from a rich perceptual environment in general, they will probably benefit even more when the stimulation is aligned with their prior sensory experiences and present preferences. Thus, knowing the person with dementia, i.e., knowing past and present beliefs and needs, likes and dislikes, is another aspect in person-centered dementia care for a good reason.
In short, dementia is neither a return to childhood nor a living death. Although the disease disrupts well-established ways of interacting with each other and thus profoundly changes the relationship between the diseased person and his or her family and friends, the self of people with dementia is not a blank slate. Rather, people with dementia still have access to a complex life history.