Coping with Everyday Life for Home-Dwelling Persons with Dementia: A Qualitative Study

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

“…Thoft and Ward [ 116 ] report that participants felt alone as it was difficult to accept that there was no cure for the disease. Two studies mention that participants were afraid of becoming ‘second-class citizens’ who others would look down on [ 84 , 95 ]. Another three studies mention participants who did not accept the diagnosis or denied the outcome [ 68 , 80 , 123 ].…”

“…Several everyday life changes related to dementia have been reported. One broad category of change refers to cognitive decline, such as concentration difficulties and forgetting daily events, names of people and places, people’s faces, birthdays and retrieving stored items [ 68 , 70 , 71 , 73 , 86 , 88 , 92 , 95 , 100 , 102 , 103 , 114 , 116 , 117 , 119 , 122 , 123 ]. Two studies report that participants were aware that their ability to learn had decreased; and therefore, newer tasks were harder to remember [ 95 , 116 ].…”

“…One broad category of change refers to cognitive decline, such as concentration difficulties and forgetting daily events, names of people and places, people’s faces, birthdays and retrieving stored items [ 68 , 70 , 71 , 73 , 86 , 88 , 92 , 95 , 100 , 102 , 103 , 114 , 116 , 117 , 119 , 122 , 123 ]. Two studies report that participants were aware that their ability to learn had decreased; and therefore, newer tasks were harder to remember [ 95 , 116 ]. A substantial number of studies report on challenges in communication: participants did not find the right words, repeated themselves in conversations, forgot what they wanted to say, or found it difficult to follow conservations as their focus was reduced [ 71 , 77 , 88 , 95 , 100 , 101 , 111 , 116 , 118 , 121 , 122 ].…”

“…Two studies report that participants were aware that their ability to learn had decreased; and therefore, newer tasks were harder to remember [ 95 , 116 ]. A substantial number of studies report on challenges in communication: participants did not find the right words, repeated themselves in conversations, forgot what they wanted to say, or found it difficult to follow conservations as their focus was reduced [ 71 , 77 , 88 , 95 , 100 , 101 , 111 , 116 , 118 , 121 , 122 ]. This was illustrated by one of the participants as follows: “Sometimes I notice that I don’t give the right answers, you know, stray from the theme.…”

“…Coping strategies are mentioned in all 26 studies, including trying to ignore or hide difficulties, using humour, using creative expressions, avoiding stress, maintaining daily structure, staying active, focusing on what they can still do, finding meaningful ways to (re)engage and seeking social and religious support. In several of these studies, a shift in attitude to what was important for them in life is described, for example by paying more attention to ‘little things’ and living in the ‘now’ [ 67 , 73 , 83 , 86 , 88 , 89 , 95 , 101 , 102 , 105 , 110 , 116 , 122 ]. One of the participants voiced this concern as followed: “Take it as it is and live today” [ 100 ] (p. 276).…”