Sooner or later? Issues in the early diagnosis of dementia in general practice: a qualitative study

Iliffe, Steve; Manthorpe, Jill; Eden, Alison

doi:10.1093/fampra/cmg407

Cited by 190 publications

(221 citation statements)

References 17 publications

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“…One study that used the nominal group technique (where group members identify problems, brain storm solutions, then vote on these solutions) with participants attending dementia training had 990 participants (Iliffe et al, 2003).…”

Section: Qualitative Findingsmentioning

confidence: 99%

Communicating a diagnosis of dementia: A systematic mixed studies review of attitudes and practices of health practitioners

Low¹,

McGrath

Swaffer

et al. 2018

Dementia

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The aim of this study is to systematically review practitioners' practices and attitudes in regards to communicating a diagnosis of dementia. A systematic search was conducted of Scopus, Web of Science and PubMed for English language original empirical papers. A sequential explanatory mixed studies analysis approach was used. Twenty-five quantitative descriptive, two intervention, six mixed methods descriptive and 21 qualitative studies were included. Pooled analysis showed that 34% of GPs and 48% of specialists usually/ routinely tell the person with dementia their diagnosis, and 89% of GPs and 97% specialists usually/routinely tell the family the diagnosis. Euphemistic terms such as 'memory problems' are more often used to describe dementia than medical terms. Practitioners' decision to diagnose and communicate the diagnosis of dementia are influenced by (a) their own beliefs regarding dementia and treatment efficacy and their confidence in diagnosis and communication; (b) patient circumstances including level of awareness, level of severity and family support; (c) the health and social care system including access to specialist and diagnostic services, reimbursement for diagnosis/management and availability of services and (d) cultural norms in relation to dementia including stigma, labels, and common clinical practice. The diagnosis and communication of diagnosis of dementia are intertwined processes and should be concurrently addressed in interventions. Multicomponent approaches to address these practices could include guideline development, practitioner education, anti-stigma public health campaigns, offering post-diagnosis treatments and support and sufficient reimbursement for practitioners for time spent managing dementia.

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Section: Qualitative Findingsmentioning

confidence: 99%

Communicating a diagnosis of dementia: A systematic mixed studies review of attitudes and practices of health practitioners

Low¹,

McGrath

Swaffer

et al. 2018

Dementia

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show abstract

“…[24][25][26] Suboptimal systems and insufficient guidance for generalist and specialist services that encounter patients with dementia and other comorbid conditions result in the duplication of services, delays in the identification of problems and ultimately patients being admitted to hospital or transferred to long-term care earlier than is necessary. 9,27 Improving the organisation and delivery of services for PLWD remains a key government target.…”

Section: Rationale For the Researchmentioning

confidence: 99%

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

Bunn

Burn

Goodman

et al. 2016

Health Serv Deliv Res

116

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BackgroundAmong people living with dementia (PLWD) there is a high prevalence of comorbid medical conditions but little is known about the effects of comorbidity on processes and quality of care and patient needs or how services are adapting to address the particular needs of this population.ObjectivesTo explore the impact of dementia on access to non-dementia services and identify ways of improving the integration of services for this population.DesignWe undertook a scoping review, cross-sectional analysis of a population cohort database, interviews with PLWD and comorbidity and their family carers and focus groups or interviews with health-care professionals (HCPs). We focused specifically on three conditions: diabetes, stroke and vision impairment (VI). The analysis was informed by theories of continuity of care and access to care.ParticipantsThe study included 28 community-dwelling PLWD with one of our target comorbidities, 33 family carers and 56 HCPs specialising in diabetes, stroke, VI or primary care.ResultsThe scoping review (n = 76 studies or reports) found a lack of continuity in health-care systems for PLWD and comorbidity, with little integration or communication between different teams and specialities. PLWD had poorer access to services than those without dementia. Analysis of a population cohort database found that 17% of PLWD had diabetes, 18% had had a stroke and 17% had some form of VI. There has been an increase in the use of unpaid care for PLWD and comorbidity over the last decade. Our qualitative data supported the findings of the scoping review: communication was often poor, with an absence of a standardised approach to sharing information about a person’s dementia and how it might affect the management of other conditions. Although HCPs acknowledged the vital role that family carers play in managing health-care conditions of PLWD and facilitating continuity and access to care, this recognition did not translate into their routine involvement in appointments or decision-making about their family member. Although we found examples of good practice, these tended to be about the behaviour of individual practitioners rather than system-based approaches; current systems may unintentionally block access to care for PLWD. Pathways and guidelines for our three target conditions do not address the possibility of a dementia diagnosis or provide decision-making support for practitioners trying to weigh up the risks and benefits of treatment for PLWD.ConclusionsSignificant numbers of PLWD have comorbid conditions such as stroke, diabetes and VI. The presence of dementia complicates the delivery of health and social care and magnifies the difficulties that people with long-term conditions experience. Key elements of good care for PLWD and comorbidity include having the PLWD and family carer at the centre, flexibility around processes and good communication which ensures that all services are aware when someone has a diagnosis of dementia. The impact of a diagnosis of dementia on pre-existing conditions should be incorporated into guidelines and care planning. Future work needs to focus on the development and evaluation of interventions to improve continuity of care and access to services for PLWD with comorbidity.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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“…Some recent studies have specifically highlighted stigma as a factor that may interfere with timely diagnosis (218)(219)(220)(221) and with communicating the diagnosis (175,218,222,223). On the basis of a five-country qualitative study involving multidisciplinary focus groups, the researchers concluded that stigma is the most powerful obstacle to timely diagnosis (220).…”

Section: Workforce Attitudes and Knowledgementioning

confidence: 99%

Nursing Students' Intentions to Work in Dementia Care: Influence of Age, Ageism, and Perceived Barriers

McKenzie

Brown

2014

Educational Gerontology

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Sooner or later? Issues in the early diagnosis of dementia in general practice: a qualitative study

Cited by 190 publications

References 17 publications

Communicating a diagnosis of dementia: A systematic mixed studies review of attitudes and practices of health practitioners

Communicating a diagnosis of dementia: A systematic mixed studies review of attitudes and practices of health practitioners

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

Nursing Students' Intentions to Work in Dementia Care: Influence of Age, Ageism, and Perceived Barriers

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