Factors associated with disclosing a diagnosis of dementia to one’s social network: A systematic review

Abstract

Background Dementia, to a certain degree in the early stages, can be a concealable condition. People with dementia often feel stigmatized and choose not to disclose their diagnosis to others. While concealing the diagnosis can prevent further stigmatization, it can also contribute to psychological consequences and limited social support, and prevent access to services and resources. The decision to disclose a concealable diagnosis is personal and complex, and a nuanced understanding of this decision is of great relevance to practitioners and researchers. This review examines factors influencing the decision to disclose or conceal a diagnosis of dementia to or from others, including individuals’ attitudes and experiences regarding disclosure or concealment. Method The protocol of this review has been registered on PROSPERO (CRD42020192495). A systematic literature search was conducted in the MEDLINE, PsycINFO, Embase, Emcare, CINAHL and Scopus databases. Search terms related to ‘disclosure’ or ‘concealment’, and ‘dementia’. Any research design was included and no date or language restrictions were applied. The methodological quality of included studies was assessed using the Mixed Methods Appraisal Tool (MMAT). Data was analyzed by means of thematic synthesis. Result A total of sixteen studies published between 2000 and 2020 were included in the systematic review. Factors associated with disclosure and concealment were regrouped into codes and themes related to stigma, interpersonal relationships, personal identity, sense of control, privacy, symptom visibility, and advocacy and awareness. People with dementia may anticipate negative responses from others when they disclose their diagnosis to them, but reactions are often positive. Conclusion Results of this review suggest that the decision to disclose or conceal a diagnosis of dementia to or from one’s social network is highly individual and complex. People with dementia may often want to disclose, but do not know how. Raising awareness in the general public may support individuals in making optimal decisions about disclosure. Findings of this review will inform an empowerment intervention supporting disclosure decision‐making in people with dementia.

Is the Invisibility of Dementia a Super-Power or a Curse? A Reflection on the SUNshiners’ Questionnaire into the Public Understanding of Dementia as an Invisible Disability: A User-Led Research Project

“…Similar reflections have been seen from co-authors with lived experience in research by Ashworth et al [43], with people wishing to have more choice in how and when to disclose a dementia diagnosis. Raising public awareness may empower more people living with dementia to disclose their diagnosis and give space for positive reactions [44].…”