Living with Dementia Yields a Heteronomous and Lost Existence

Abstract

The purpose of this study was to investigate the lived experience of dementia for spouses where one of them is diagnosed as having dementia. The study has been conducted using a phenomenological approach. Unstructured interviews were chosen in order to investigate the informants' lived experiences of dementia, both for the person with dementia and for his or her spouse. The essence of the phenomenon, the lived experience of dementia, is that the persons with dementia and their spouses live in a heteronomous existence in which they are lost and are strangers in their own world. The result of this is a life without coherence and a new but unknown meaning that can make them feel uncertain and puts them in a quandary. Whatever those with dementia and their spouses do, they have no real influence over their situation, which leads to feelings of awkwardness, perplexity, and futility.

A Discussion of the Use of Virtual Reality in Dementia

“…They are more likely to experience confusion and difficulties recognizing familiar environments or people at some point in the progression of the disease [2]. Even in the early stages, a simple fear of forgetting someone's name or getting lost in a new environment may impede persons with dementia from participating in social activities, as does their difficulty in communicating [1,6]. Communication is critical to daily-life functioning as it provides a means to express one's needs or wishes [7].…”

“…Communication is critical to daily-life functioning as it provides a means to express one's needs or wishes [7]. Coupled with impaired memory, communication problems lead persons with dementia to have difficulties staying on topic [6,8]. Conversational partners thus abandon their efforts for communication out of frustration, further isolating the persons with dementia.…”

“…The result is that various important daily activities which require multi-tasking or undivided attention become challenging or impossible [9]. For instance, dementia might make it hard to socialize with several people at any given time [6].…”

Reframing Person-Centered Nursing Care for Persons With Dementia

“…Living with dementia has been described as a heteronomous existence; that is, persons with dementia become strangers in their own world (Svanstrom & Dahlberg, 2004). Self-identity is changed-not totally lost-and typically is preserved into the end stage of advanced dementia (Harris & Sterin, 1999;Sabat & Harré, 1992).…”

“…The consequence of this changing self-identity is a new form of life, a new way of living in the world that is fraught with incoherence and unknown meaning. As a result, imbalances in responsibility, futility, hopelessness, and even homelessness can occur (Svanstrom & Dahlberg, 2004), posing a continuous threat to perceptions of order and control (Nygard & Borell, 1998). As neurological impairment progresses in dementia, new opportunities for uncertainty surge, eroding one's confidence in interpreting daily life experiences (Phinney, 1998).…”