The personal impact of disclosure of a dementia diagnosis: a thematic review of the literature

Abstract

Background: Decisions around disclosure of a diagnosis of dementia are not always patient-centred; a plethora of literature supports the notion that physicians do not always clearly and directly disclose the diagnosis to the person with dementia. Aim: To conduct a thematic review of the literature in relation to the effects of disclosing a dementia diagnosis to the person with dementia. Method: The literature was searched between February 2013 and June 2013. To enable detailed appraisal and analysis, only studies conducted from 2006 onwards were reviewed. Results: The perceived negative impacts of disclosure, i.e. depression and suicidal tendencies, were not as common as the background literature suggests. Disclosure had many positive outcomes, for example in terms of future planning and the ‘relief’ that a recognised disease was the cause of the symptoms as opposed to ‘old age’. Discussion: The person with dementia has a right to disclosure in all instances, even if to decline a formal diagnosis. Through omission of a clear diagnosis, the person is disempowered. A clear diagnostic framework is absent. Diagnosis should take place over multiple sessions, not only to facilitate coping but also for practical reasons, for example to allow adequate recall.

The biomarker-based diagnosis of Alzheimer's disease. 1—ethical and societal issues

“…The findings from research studies may add elements to the discussion on when and how to disclose the diagnosis. For instance, studies show that anxiety does not increase after diagnostic feedback (Carpenter et al, 2008), but feelings of loss are experienced after disclosure (Mitchell et al, 2013). However, whether disclosing a diagnosis of AD is harmful to the person at a time when symptoms are mild and the individual is not yet demented is still being debated.…”

Experiences of shame for people with dementia: An Interpretative Phenomenological Analysis

“…"I don't feel that I am… playing a part… in my life" (Brian). Similarly, Mitchell et al (2013) note that fears about stigma were attached to 'loss of the self', meaning that participants experienced their illness taking precedence over their self. Theories explain that an individual feels shame when they evaluate themselves as failing to live up to social standards, thus perceiving themselves as inferior and at risk of rejection (Ellis, 1977;Gilbert, 2009;Isenberg, 1940).…”

Recognition of preclinical signs of dementia: A qualitative study exploring the experiences of family carers and professional care assistants

“…The sooner the treatment is begun, the better the outcome (partly due to a better starting point), so medication should be given much earlier in the disease process to have any real impact (Alzheimer's Association, ). Even though identification of a preclinical condition may have negative consequences, such as low mood due to anticipated loss of autonomy, social status and aspects of self (Mitchell, McCollum, & Monaghan, ), people with dementia prefer an explanation for the difficulties they encounter (van den Dungen et al., ). Other benefits of early diagnosis include empowerment of the individual to make choices about the future, follow health promotion advice, get their affairs in order and be open with family and friends to maximise understanding and support (Mitchell et al., ).…”

“…Even though identification of a preclinical condition may have negative consequences, such as low mood due to anticipated loss of autonomy, social status and aspects of self (Mitchell, McCollum, & Monaghan, ), people with dementia prefer an explanation for the difficulties they encounter (van den Dungen et al., ). Other benefits of early diagnosis include empowerment of the individual to make choices about the future, follow health promotion advice, get their affairs in order and be open with family and friends to maximise understanding and support (Mitchell et al., ). Implementation of these strategies would result in significant financial savings from delayed admissions to care homes (Banerjee & Wittenberg, ).…”