Why do ethnic elders present later to UK dementia services? A qualitative study

Mukadam, Naaheed; Cooper, Claudia; Basit, Behzad; Livingston, Gill

doi:10.1017/s1041610211000214

Cited by 108 publications

(228 citation statements)

References 8 publications

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“…This lack of trust was also aligned with a perception that mental health services could only offer a diagnosis of dementia rather than treatment, intervention or general support. For many carers, a diagnosis would not change their circumstances and therefore, was not perceived as useful (Mukadam, Cooper, Basit, & Livingston, 2011).…”

Section: Perception Of Dementia As a Normal Process Of Ageingmentioning

confidence: 99%

What do we know about the attitudes, experiences and needs of Black and minority ethnic carers of people with dementia in the United Kingdom? A systematic review of empirical research findings

2014

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This paper reviews recent literature on the experiences, attitudes and needs of caring for someone with dementia in Black and minority ethnic communities in the United Kingdom. Eight articles, which investigated carer experiences from Black and minority ethnic communities when caring for someone with dementia, were critically appraised. All eight studies used a qualitative methodology. The review identified several themes and issues across the qualitative studies. These included memory loss being viewed as a normal process of ageing, care being perceived as an extension of an existing responsibility, a poor understanding of what support services provide, the influence of migration, the impact of stigma, and increased female responsibility.Methodological limitations of the research literature studies are also highlighted and clinically relevant implications are discussed, alongside recommendations for future research in this area.

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Section: Perception Of Dementia As a Normal Process Of Ageingmentioning

confidence: 99%

What do we know about the attitudes, experiences and needs of Black and minority ethnic carers of people with dementia in the United Kingdom? A systematic review of empirical research findings

2014

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“…In the UK very few studies exist on stigma, information needs and support issues in relation to these communities. Those UK studies that have been done [23,24] have been very small scale but indicate significant culturally specific values and expectations need to be taken into account. The dearth of research on the Irish population is a concern as it has the estimated highest prevalence of dementia of any ethnic group from the 2011 Census data.…”

Section: Differential Impact Of Dementia In Black and Minority Ethnicmentioning

confidence: 99%

Black, Asian and Minority Ethnic Communities and Dementia – Where Are We Now?

Truswell¹

2014

J Alzheimers Dis Parkinsonism

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Produced for the Race Equality Foundation's Better Health briefing paper series. The Race Equality Foundation (www.raceequalityfoundation.org.uk) is a UK not-for-profit organization that seeks to influence national policy on support and services for black and minority ethnic communities by developing evidenced-based better practice to promote equality.This briefing looks at developments in the UK since the launch of the National Dementia Strategy in 2009. It uses census data to estimate the number of black and minority ethnic people living with dementia in the UK, and proposes innovative solutions for care, including the use of community dementia navigators.The briefing argues that:• Existing policy recommendations have not been taken into account when developing information and services to meet needs of black and minority ethnic communities.

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“…However, Black and Minority Ethnic (BME) populations access dementia services later in their illness,3, 4, 5, 6, 7 despite being at higher risk of dementia than their White counterparts 8. Timely diagnosis of dementia benefits patient and carer through better care planning, delayed care home entry, prolonged autonomy, access to social care, and reduced crises and costs 9, 10, 11…”

Section: Introductionmentioning

confidence: 99%

“…Barriers to help‐seeking for dementia are diverse and include failing to identify or acknowledge symptoms, concerns about outcomes of receiving a diagnosis, conception of dutiful family care; attitudes towards service providers, ability, and willingness to divulge private or sensitive information 7, 14. Some of these are not specific to dementia, but others about the meaning of memory loss, the idea that dementia is only a disease of white women, and the outcomes of a diagnosis are 14.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

The IDEMCare Study—Improving Dementia Care in Black African and Caribbean Groups: A feasibility cluster randomised controlled trial

Roche

Mukadam

Adelman

et al. 2018

Int J Geriat Psychiatry

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ObjectiveWe evaluated the feasibility and acceptability of a tailored evidence‐based intervention, consisting of a leaflet and a letter, to encourage timely help‐seeking for dementia in Black elders.MethodsParticipating GP surgeries were randomised to send either the intervention or a control leaflet about ageing well to Black patients aged ≥50 years old without known dementia. We interviewed patients 2 weeks later about the intervention's acceptability using closed and open‐ended questions, and they completed a Theory‐of‐Planned‐behaviour questionnaire about what they would do if they developed memory problems, which they also completed 4 months later.ResultsFive of 26 surgeries approached agreed to invite patients. Sixty‐five patients responded, of whom 61 (93.8%) agreed to participate. At 2 weeks, we consented and interviewed 47/61 (77%), of whom 24 received the intervention, and at 4 months we followed up 43/47 (91.5%). At 2 weeks, 44/47 (93.6%) found either intervention acceptable to receive by post, including 23/24 of the intervention. Nineteen of 24 (79.2%) reported reading the intervention leaflet compared with 13/23 (56.5%) controls. The intervention leaflet made 16/24 (66.7%) think about visiting their doctor for memory problems and led 4 to help‐seeking behaviour. We calculated that 191 patients and 24 surgeries are required for an efficacy trial.ConclusionsGiven the intervention is acceptable, inexpensive, and unlikely to cause harm, we judge it appropriate to disseminate it without a full‐scale trial. Recruitment attainment, retention, and projected sample size calculation indicated feasibility for a larger trial.

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Why do ethnic elders present later to UK dementia services? A qualitative study

Cited by 108 publications

References 8 publications

What do we know about the attitudes, experiences and needs of Black and minority ethnic carers of people with dementia in the United Kingdom? A systematic review of empirical research findings

What do we know about the attitudes, experiences and needs of Black and minority ethnic carers of people with dementia in the United Kingdom? A systematic review of empirical research findings

Black, Asian and Minority Ethnic Communities and Dementia – Where Are We Now?

The IDEMCare Study—Improving Dementia Care in Black African and Caribbean Groups: A feasibility cluster randomised controlled trial

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