Daring to tell: the importance of telling others about a diagnosis of dementia

Abstract

Learning to live with a diagnosis of dementia is a complex process. Being able to talk about the diagnosis to others represents a major challenge for some people with dementia. This study explores the experiences of people with dementia, and members of their families, around the task of informing others during the six months immediately following their diagnosis of dementia. Five people with dementia living in the community, and their immediate family members, were recruited into an ethnographic study. Data were collected through recorded interviews and participant observation, and were analysed through a grounded theory method within a continuing iterative process. Findings suggest that participants recognised the need to tell others about their diagnosis but these conversations were difficult to initiate and manage, and hindered the processing of emotions. Findings are discussed in relation to implications for practice.

Citizenship in action: the lived experiences of citizens with dementia who campaign for social change

“…Rather than passively accepting the tragic discourse of loss and demise typically associated with dementia, those directly affected by this condition are beginning to unite and seek opportunities to exert real influence in policy processes and society more generally (Clare, Rowlands andQuin, 2008, MacRae, 2008; Bartlett, 2014). For example, in recent years, user-led groups like the Scottish Dementia Working Group (SDWG) have been established to influence public policy and attitudes (Weaks, 2012 et al), others have taken an active role in the work of Alzheimer's Associations (Beard, 2004a), educated health care students about the lived experience of dementia (Hope et al, 2007) and become self-advocates (Knauss and Moyer, 2006). In short, people with dementia are participating in their local communities, and the lens of citizenship is becoming increasingly apposite in the context of people with dementia (see, for example, Gilmour and Brannelly, 2010; Bartlett and O'Conner, 2010).…”

To what extent does diagnosis matter? Dementia diagnosis, trouble interpretation and caregiving network dynamics

“…, Weaks et al . ). Furthermore, the emphasis on diagnosis in dementia research is partly due to a methodological necessity: most researchers can recruit their participants, only because they are diagnosed and under the assumption that diagnosis marks the beginning of medical monitoring and family caregiving, or even a ‘biographical disruption’ in patients’ lives (Bury ).…”

“…Many works address pathways to dementia diagnosis, from a familial perspective (Koehn et al 2014, Krull 2005, or a professional perspective (Gove et al 2015, Hansen et al 2008). Furthermore, they examine how relatives make interpretations of and react to the diagnosis disclosure, highlighting either diverse representations of the disease (Belgrave et al 2004, B eliard andEideliman 2014), diverse reactions to its announcement (Aminzadeh et al 2007, Robinson et al 2005, Smith and Beattie 2001 or diverse social impacts, especially on relationships (Vernooij-Dassen et al 2006, Weaks et al 2015. Furthermore, the emphasis on diagnosis in dementia research is partly due to a methodological necessity: most researchers can recruit their participants, only because they are diagnosed and under the assumption that diagnosis marks the beginning of medical monitoring and family caregiving, or even a 'biographical disruption' in patients' lives (Bury 1982).…”

The Experience of Relations in Persons with Dementia: A Systematic Meta-Synthesis

“…Many PWD postpone telling others about their disease because of the stress and feelings they experience when they receive the diagnosis of dementia. However, one of the most recently published articles highlights the importance of openness and telling others about the diagnosis, which might give hope for a more transparent society [32]. …”