Living with dementia from the perspective of older people: is it a positive story?

Abstract

Dementia, even at an early stage, may pose problems and challenge one's quality of life. Having accurate knowledge of what one experiences when living with dementia is important for developing proactive care for individuals with dementia and their families. The aim of our Grounded Theory study was to explore what it means for elderly people to live with early-stage dementia. We interviewed 20 elderly people with probable mild dementia and their family members. Living with dementia was often presented as a positive narrative, one that told of only minor problems and which stressed abilities and contentment with life. Being valued, rather than losing one's cognition or identity was central in their experience. More in-depth analyses of participants' narratives revealed, however, that they were constantly balancing their feelings of value and worthlessness, struggling to remain someone of value. This struggle was prompted by threats posed by dementia and by the persons' interactions with others. Superficially, a positive narrative may be understood as a lack of awareness or as denial due to cognitive loss. Our findings suggest, however, that we should look beyond this superficial view and seek to understand the narrative as an expression of one's attempt to counterbalance devaluation.