Everyday experiences of post-diagnosis life with dementia: A co-produced photography study

Abstract

There has been surprisingly little research capturing people’s everyday lives in the early years following a diagnosis of dementia. This project was co-produced by three people with dementia and two university researchers. The co-researchers with dementia formulated the aims of this project as: (1) to explore post-diagnosis life with dementia and (2) to use data collection methods as a form of peer support and confidence building for the participants. The intent was to provide the opportunity to learn new skills and support participants to share their experiences without putting them on the spot. Five participants with recent diagnoses received a photography lesson and cameras to take photographs of their everyday lives. This was followed with a focus group in which the photographs were discussed. The participants used their photographs to explain: (1) the differences between their past and present with dementia, (2) how dementia affected their thought processes, (3) pets and grandchildren as facilitators of reciprocal joy and support, (4) the emotional effects of living with a dementia diagnosis, and (5) the solace and stability of nature in a changing world. The participants’ creative use of photography supported them to express the complex emotions felt after a diagnosis of dementia and they reported the benefit of doing this in an environment with peers going through the same experiences. The role of the co-researchers with dementia was the key to the success of this project, drawing on their own experiences to design the project and support the participants. Future research should draw on the experiences of people with dementia to design research projects and care interventions.

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

“…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.…”

“…This could also lead to feelings of shame. In response to disruptions in daily life and failures, such as home accidents, negative emotions such as frustration, anger, depression and for some even despair are described [ 76 , 77 , 89 , 98 , 100 , 111 , 119 ]. Another frequently shared emotion, was increasing fear and uncertainty when going outside, or the fear of losing control related to further cognitive decline [ 72 , 75 , 79 , 100 , 101 , 103 , 117 , 123 ].…”

“…One study report that participants shared how relationships with close family members improved in an emotional way [ 122 ]. The importance of reciprocity in family relationships is highlighted in six studies, for example by helping family members or spending time with their grandchildren [ 68 , 77 , 111 , 116 , 120 , 122 ].…”

“…The assistance of relatives, or tools such as schedules and notes is reported to be supportive [ 74 , 82 , 111 , 118 ]. In seven studies participants expressed that they experienced taking care of household chores, such as cooking, cleaning and taking care of pets, as meaningful [ 74 , 77 , 78 , 82 , 87 , 101 , 109 ]. By doing these activities they maintained their routines, and sensed reciprocity and responsibility.…”

“…Thirty-two studies describe experiences with leisure activities. Several of these studies describe this as social, cognitive and physical engagement, for experiencing meaningful days and reducing stress [ 67 , 70 , 77 , 89 , 95 , 102 , 104 , 116 , 119 , 120 ]. Participants wanted to focus on activities they had always done for as long as possible, and discover new activities [ 69 , 70 , 78 , 104 , 116 , 119 , 122 ].…”