‘Rydym Eisiau Gwybod’—the dementia diagnosis disclosure preferences of people in North Wales

Page, Sean; Davies-Abbott, Ian; Ingley, Sanjay; Bee, Penny

doi:10.1002/gps.4203

Cited by 5 publications

(6 citation statements)

References 4 publications

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“…Studies were conducted in clinic and community settings, in the UK (Eccles et al, 2009, Bennett et al, 2018, Hillman, 2017, Innes et al, 2012, Manthorpe et al, 2013, Milby et al, 2017, Page et al, 2015, Peel, 2015, Samsi et al, 2014, Stokes et al, 2014, Vince et al, 2017, Lecouturier et al, 2008, Bailey et al, 2019, USA (Burns et al, 2017, Lim et al, 2016, Lingler et al, 2016, Connell et al, 2009, Carpenter et al, 2008, Campbell et al, 2008, Bradford et al, 2011, Grill et al, 2017, Grossberg et al, 2010, Sakai and Carpenter, 2011, Wynn and Carpenter, 2017, Zaleta and Carpenter, 2010, Zaleta et al, 2012, Champlin, 2020, China (Zou et al, 2017), The Netherlands (van Wijngaarden et al, 2018, Brazil (Shimizu et al, 2008, Belgium (Segers, 2009, Mormont et al, 2012, Australia (Phillips et al, 2012, Mastwyk et al, 2014, Hansen et al, 2008, Denmark (Nielsen et al, 2018), Ireland Cahill, 2013, Foley et al, 2017), Canada (Lee and Weston, 2011), Finland (Laakkonen et al, 2008…”

Section: Settingmentioning

confidence: 99%

“…The majority of articles agreed it was beneficial for carers to accompany the person with dementia to disclosure meetings (Phillips et al, 2012, Page et al, 2015, Nielsen et al, 2018, Grossberg et al, 2010, Bradford et al, 2011, Lingler et al, 2016, Abe et al, 2019, Bailey et al, 2019, Giezendanner et al, 2018. Family members often wanted more information, and could receive education to help them cope in the future (Phillips et al, 2012, Bailey et al, 2019.…”

Section: People Involvedmentioning

confidence: 99%

“…Family members often wanted more information, and could receive education to help them cope in the future (Phillips et al, 2012, Bailey et al, 2019. Carers represent a reassuring presence for the HCP (Page et al, 2015), can help them communicate the diagnosis more effectively to the person with dementia (Grossberg et al, 2010), and help to recall details of the diagnosis (Bradford et al, 2011, Bailey et al, 2019. One study found that, within its sample, people with MCI showed a lack of health literacy, suggesting carers were necessary to help process and understand the information provided (Lingler et al, 2016).…”

Section: People Involvedmentioning

confidence: 99%

“…100% of respondents discussed issues such as handling medications and 87% discussed driving. Page et al, 2015: 'Rydym Eisiau Gwybod' the dementia diagnosis disclosure preferences of people in North Wales 253 people with dementia attending memory assessment services…”

Section: %mentioning

confidence: 99%

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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

Yates

Stanyon

Samra

et al. 2021

Int. Psychogeriatr.

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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.

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Section: Settingmentioning

confidence: 99%

Section: People Involvedmentioning

confidence: 99%

Section: People Involvedmentioning

confidence: 99%

Section: %mentioning

confidence: 99%

See 2 more Smart Citations

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

Yates

Stanyon

Samra

et al. 2021

Int. Psychogeriatr.

View full text Add to dashboard Cite

show abstract

“…Disclosure is not a simple process, balanced by concerns of causing distress, harming self-respect (Lee, 2019) further complicated by the presence of carers whose needs may not reflect those of the person (Hillman, 2017) and the need to observe moral and legal rights (Karnieli-Miller et al, 2007). Both patients and carers express a right to know (Mahieux et al, 2018; Mastwyk et al, 2016; Page et al, 2015) and the right not to know (Segers, 2009; Somme et al, 2013), although those who prefer not to know were less likely to have their preference honoured (Page et al, 2015).…”

Section: Resultsmentioning

confidence: 99%

Truth, hope and the disclosure of a dementia diagnosis: A scoping review of the ethical considerations from the perspective of the person, carer and clinician

et al. 2022

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This paper explores contemporary approaches to balancing truth with the provision of hope during the disclosure of a dementia diagnosis. We discuss the ethical significance of these practices as they relate to each member of the triad – the person, the carer and the clinician – at the point of diagnosis and beyond. The process of disclosing a diagnosis of dementia is complex. It encompasses breaking bad news while balancing hope, with truth about a progressive life-limiting condition. The process of receiving the diagnosis likewise challenges the person who may be unprepared for the diagnosis, while carers seek information and supports. The impact of receiving a diagnosis of dementia can be life-changing and harmful at the personal level – for both the person and carer. This risk of harm becomes a critical consideration for clinicians when deciding on the level of truth: what information should be relayed and to whom? That risk is also balanced against the ethical issue of patient autonomy, which includes the right to know (or not) and make informed decisions about therapeutic interventions. While the consensus is that the autonomy of the person living with dementia must be upheld, controversy exists regarding the extent to which this should occur. For instance, at diagnosis, it is common for clinicians to use euphemisms rather than the word dementia to maintain hope, even though people and carers prefer to know the diagnosis. This practice of therapeutic lying is a pervasive ethical issue in dementia care, made more acceptable by its roots in diagnosis disclosure.

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The experiences of family caregivers in response to a dementia diagnosis disclosure

Chen

Lin

2022

BMC Psychiatry

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Background Dementia is a serious disease that can lead to disability because it impacts the individual’s memory, cognition, behavior, and capacity to perform activities of daily living. While most people prefer to receive a full diagnostic disclosure, the actual care requirements of family caregivers of persons with dementia are often unknown after a dementia diagnosis is disclosed. The primary aim of this study was to explore the experiences of family caregivers in response to a dementia diagnosis disclosure and analyze the care needs of caregivers. Methods A qualitative study conducted in accordance with COREQ guidelines. The grounded theory approach was undertaken in 20 family caregivers of persons with dementia, who were selected using purposive sampling. Data were analysed using the constant comparative method. Results The core category of this study was "diagnostic disclosure: Start the long road of care challenges", which was defined as describing the experiences of family caregivers of persons with dementia after first being informed of diagnosis. Five major categories describing the experiences of family caregivers following a dementia diagnosis was developed: ‘deciding to seek medical attention,’ ‘the moment of disclosure,’ ‘conveying information,’ ‘maintaining the persons’ functioning,’ and ‘receiving support and living well with dementia.’ Subcategories within each major category also emerged. Conclusions Clear diagnostic disclosure is important for ensuring that positive developments can occur in response to disclosure. Healthcare professionals must develop strategies to prevent disclosure from triggering overreactive emotions from persons with cognitive impairments, assist them in understanding their illness in a tactful manner, and ensure that they understand how to cooperate in any subsequent care plans.

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‘Rydym Eisiau Gwybod’—the dementia diagnosis disclosure preferences of people in North Wales

Cited by 5 publications

References 4 publications

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

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

Truth, hope and the disclosure of a dementia diagnosis: A scoping review of the ethical considerations from the perspective of the person, carer and clinician

The experiences of family caregivers in response to a dementia diagnosis disclosure

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