How do doctors deliver a diagnosis of dementia in memory clinics?

Dooley, Jemima; Bass, Nick

doi:10.1192/bjp.2017.64

Cited by 29 publications

(29 citation statements)

References 34 publications

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“…23 A study of diagnostic practices in UK memory services also found that doctors tended to focus on positive aspects and downplay the progressive nature and prognosis of dementia. 24 Clinicians distinguished between defining dementia as progressive and terminal. They often had to repeat to family that dementia was progressive, raising the question as to how well the person with dementia and family interpret and understand the information provided.…”

Section: Discussionmentioning

confidence: 99%

The role of the memory service in helping carers to prepare for end of life: A mixed methods study

Moore

Goodison

Sampson

2018

Int J Geriat Psychiatry

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Objectives The objective of the study is to explore current practice and the role taken by UK memory services in helping carers of people with dementia prepare for the end of life. Methods We used mixed methods including a survey (48 responses/51% response rate) and semistructured interviews (n = 12) with clinicians working in UK memory services accredited by the Memory Services National Accreditation Programme. We used descriptive statistics to report survey findings and thematically analysed interview and survey qualitative data. Results Surveys: services routinely discussed with carers the progressive nature of dementia (89%), legal arrangements (health: 72%; finances: 74%), advance care planning (63%), and implications of loss of capacity (61%). Fewer services routinely discussed the terminal nature of dementia (41%) and meaning of death (11%) with carers. Most (89%) agreed that these conversations were in line with their role. Interview findings corresponded with survey findings. Themes included diagnosis considered too early to discuss end of life, discussions being inconsistent with a “living well” approach, people with dementia being resistant to conversations, and discussions of spirituality crossing professional boundaries. Services' capacity for follow‐up with carers impacted on ability to broach these topics. Conclusions More in‐depth and distressing topics such as end of life and advance care planning require longer follow‐up to establish relationships to broach difficult topics. Variability in follow‐up practices between services created inequity in the extent to which memory services could address these topics. More research is required to investigate the best method for broaching these topics with carers and the person with mild dementia within different health care contexts.

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Section: Discussionmentioning

confidence: 99%

The role of the memory service in helping carers to prepare for end of life: A mixed methods study

Moore

Goodison

Sampson

2018

Int J Geriat Psychiatry

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“…Primarily, whilst this study has information about caregivers' DRs, we do not have information about how the diagnosis was conveyed to the caregivers. This information may have influenced their DRs; for instance, healthcare professionals may use terms such as 'memory problems' during diagnostic meetings or highlight the uncertainty of the diagnosis (Dooley, Bass, & McCabe, 2018). This study used a quantitative approach; had the study incorporated qualitative data collection, this would have allowed further exploration of the caregivers' responses.…”

Section: Discussionmentioning

confidence: 99%

Caregivers’ beliefs about dementia: findings from the IDEAL study

Quinn

Jones

Martyr

et al. 2019

Psychology & Health

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Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers' DRs on their well-being, satisfaction with life (SwL) and caregiving stress. Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study. Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline. Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person's condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition. Conclusion: Healthcare professionals should assess and gain an understanding of caregivers' DRs in order to provide more tailored information and support.

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“…A small study conducted in UK memory clinics in 2012 found doctors usually avoided the word 'dementia' (Peel, 2015). However, a more recent video observation of diagnostic feedback meetings 2014-2016 found that dementia was always named (Dooley et al, 2018). However, the doctors described strategic and individualised use of 'dementia' and 'Alzheimer's' labels.…”

Section: Discussionmentioning

confidence: 99%

“…A small observational study of 5 patients during memory clinic consultations in 2015 found that doctors tended not to explicitly name "dementia" or "Alzheimer's Disease" (Peel, 2015). However, a more recent study of UK memory clinics found that doctors consistently named dementia when delivering the diagnosis (Dooley, Bass, & McCabe, 2018). This may potentially reflect an increasing culture of disclosure in recent years (Hellstrom & Torres, 2013).…”

Section: Introductionmentioning

confidence: 99%

‘How do they want to know?’ Doctors’ perspectives on making and communicating a diagnosis of dementia

Bailey

Dooley

2018

Dementia

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Recent drives to facilitate earlier identification of dementia have led to increased memory clinic referrals and diagnoses. This study explored the perspectives of memory clinic doctors on making and delivering diagnoses. Four focus groups were conducted with 13 psychiatrists and two geriatricians in the UK. Transcripts were coded line by line using NVIVO. Thematic analysis identified 39 categories, 18 sub-themes and eight overarching themes. Inter-rater reliability on 31% of the data was 0.89. Increased public awareness of dementia was viewed positively in facilitating access to diagnosis and treatment. Doctors viewed diagnosis as a process and expressed concerns about limited pre-diagnostic counselling and post-diagnostic support. In diagnostic delivery doctors sought to develop a narrative drawing on the patient's report of symptoms and adjust explanations to patient preferences and awareness. However, tailoring the delivery to the individual patient was challenging when meeting for the first time. These consultations often involved three participants (doctor, patient and relative), who were felt to have differing needs and expectations. Doctors emphasized that delicacy was required in deciding in what could be discussed in front of both parties, however also stressed the importance of explicitly naming 'dementia'. Efforts were made to balance honesty and hope when discussing prognosis and medication. The work was sometimes emotionally distressing, with limited supervision. Existing communication training was felt to be inadequate for consultations involving triads or people with cognitive impairment. Delivering a dementia diagnosis is a nuanced and challenging task. Negotiating honest descriptions of a life-limiting condition whilst instilling hope is further complicated when cognitive impairment affects comprehension. Misunderstandings at the time of feedback may limit patient opportunities for informed future planning afforded by early diagnosis. Doctors in memory clinics would benefit from evidence based training and supervision to prepare them for these emotionally challenging and complex consultations.

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How do doctors deliver a diagnosis of dementia in memory clinics?

Abstract: Doctors are naming dementia to patients. Direct approaches reflect attempts to ensure clear diagnosis. Downplaying and avoiding prognosis demonstrates concerns about preserving hope but may compromise understanding about and planning for the future. Declaration of interest None.

Cited by 29 publications

References 34 publications

The role of the memory service in helping carers to prepare for end of life: A mixed methods study

The role of the memory service in helping carers to prepare for end of life: A mixed methods study

Caregivers’ beliefs about dementia: findings from the IDEAL study

‘How do they want to know?’ Doctors’ perspectives on making and communicating a diagnosis of dementia

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