Challenges in disclosing and receiving a diagnosis of dementia: a systematic review of practice from the perspectives of people with dementia, carers, and healthcare professionals

Abstract

Background: Disclosing a diagnosis of dementia is a key process involving people with dementia, carers, and healthcare professionals (HCPs) that can facilitate access to treatment and support. Receiving a diagnosis of dementia may represent a change in identity and loss of a planned-for future, resulting in an emotional impact for both people with dementia and carers. Delivering the diagnosis of dementia can be difficult and draining for HCPs. Methods: We conducted a systematic review that included studies which explored the experience of giving or receiving a diagnosis of dementia from the perspectives of people with dementia, carers, or HCPs. All study designs were eligible except for previous literature reviews. Findings were analyzed thematically and grouped into categories and then synthesized into a narrative review. The quality of all included studies was assessed. Results: Fifty-two studies were included in this review. Findings indicated that receiving a diagnosis is generally a negative process for people with dementia, carers, and HCPs and leaves carers in particular feeling uncertain over the prognosis and future of the person they care for. Disclosing a diagnosis of dementia is a difficult and complex process, for which formal training and guidance is lacking. Carers in particular would welcome more opportunity for realistic and hopeful discussions of the implications of receiving a diagnosis of dementia. Conclusions: Changes in some aspects of disclosure, such as providing a truthful diagnosis to the person with dementia, have occurred over the last decade. A process approach involving pre-diagnostic counseling and follow-up appointments could enable discussions regarding prognosis and the future, create opportunities to clarify the diagnosis, and reduce emotional burden on HCPs. There is a need for more objective evidence that considers the perspectives of all individuals involved.

Talking about future decision-making capacity and advance care planning in diagnosis disclosure of dementia

“…The discussion on available support, treatments, and preferences for the future needs to be done timely before the person with dementia becomes less able to be involved in their care plan and decisions, which often leads to suboptimal care for the person with dementia in later stages. Yates et al (2021) conducted a systematic review to identify common practices for diagnosis disclosure of dementia and challenges attached to it from different individuals involved. They found that the process generally causes negative experiences to people with dementia, carers, and HCPs.…”

“…Despite the expected declining decisional capacity at the later stages, it is not uncommon that people with dementia are excluded from the discussions too early, including at the diagnosis disclosure sessions (Karnieli-Miller et al, 2012;Yates et al, 2021;Donnelly et al, 2019). Some families would prefer HCPs not to discuss the diagnosis and advance care decisions directly with the patients; conversely, they would like to be informed if they are the persons with dementia themselves, similar to HCP's attitudes (van den Dungen et al, 2014).…”

“…HCPs are sometimes reluctant to disclose the diagnosis and discuss a care plan with people with dementia, even sometimes with their family members or companions. This can be because they feel pessimistic about dementia trajectory and limited curative treatments and worry about upsetting patients and families (van den Dungen et al, 2014;Yates et al, 2021). Some HCPs also acknowledged that social and health care resources would be scarce in their community: some might simply not know about their available resources (Bradford et al, 2009).…”

“…Different cultural and social perceptions around dementia symptoms make it even more challenging for HCPs when disclosing the diagnosis to the person with dementia and their family with different background (Cipriani and Borin, 2015). Yates et al (2021) found some HCPs might prefer using euphemisms, but all HCPs in some recent studies used direct terms like "dementia" in diagnostic disclosure (Bailey et al, 2019;Dooley et al, 2018). This would suggest cultural shift in practice that tends to be more open, although those who use clear diagnostic terms still downplay when discussing prognosis and available treatments (Dooley et al, 2018).…”

“…Many family members find that the diagnosis disclosure is a positive experience to be confirmed and relieved of their anxiety over the patients' symptoms (Werner et al, 2013;Yates et al, 2021), but they may start to recognize their changing role and growing responsibility as a carer (Karnieli-Miller et al, 2012). Although some people with dementia can experience short-term negative or catastrophic reactions from the diagnosis disclosure, they want to be involved in the conversations to know what happens to them and what they can do for their future (Yates et al, 2021). This could give them a sense of hope and help them through their diagnosis, developing a plan to live well with dementia; however, this still needs to be realistic.…”