Dementia and the Deaf community: knowledge and service access

Ferguson-Coleman, Emma; Keady, John; Young, Alys

doi:10.1080/13607863.2014.880405

Cited by 21 publications

(30 citation statements)

References 25 publications

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“…, , Ferguson‐Coleman et al . ). The research project included studies focussed on the development of linguistically appropriate screening instruments (previously there were none); the personal experience of Deaf people with dementia (they had never been previously directly interviewed); and how to facilitate better access to information and Deaf community awareness about dementia (findings reported here).…”

Section: Introductionmentioning

confidence: 97%

Understanding dementia: effective information access from the Deaf community's perspective

Young

Ferguson-Coleman

Keady

2014

Health Soc Care Community

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What is known about this topic• Deaf people who use sign language can experience dementia.• Deaf people are less likely to be diagnosed with dementia than hearing people.• Awareness and knowledge about dementia in the Deaf community is poor. What this paper adds• Deaf people want to generate awareness and information about dementia from a Deaf cultural perspective. AbstractThis study concerns older Deaf sign language users in the UK. Its aim was to explore how to enable effective information access and promote awareness and understanding of dementia from a culturally Deaf perspective. A purposive sample of 26 Deaf people without dementia participated in one of three focus groups facilitated directly in British Sign Language (BSL) without an intermediate interpreter. The sample was differentiated by age, role in the Deaf community, and diversity of educational attainment and professional experience. A phenomenological approach underpinned the thematic analysis of data. The findings demonstrate: (i) translation into (BSL) is a necessary but not sufficient condition to support understanding. Attention to culturally preferred means of engagement with information is vital; (ii) the content of information is best presented utilising structures and formats which cohere with Deaf people's visual cognitive strengths; and (iii) the importance of cultural values and cultural practices in raising awareness and building understanding of dementia. These include collective rather than individual responsibility for knowledge transfer and the pannational nature of knowledge transfer among Deaf people(s). The discussion demonstrates how these specific features of effective information access and awareness building have universal implications relevant to public engagement and the promotion of general knowledge consistent with the National Dementia Strategy (England).

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Section: Introductionmentioning

confidence: 97%

Understanding dementia: effective information access from the Deaf community's perspective

Young

Ferguson-Coleman

Keady

2014

Health Soc Care Community

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“…1 Services may not, however, reach everyone who needs them due to barriers associated with availability, accessibility and acceptability. [10][11][12] This body of evidence is predominantly descriptive, with insufficient attention to understanding causes and processes. 2,3 Since disadvantaged groups have a higher risk of developing dementia, 4 it is especially important to identify the extent of inequities in service access and to understand how best to address these (we use the term inequity to refer to an inequality that is likely to be seen as unfair).…”

Section: Introductionmentioning

confidence: 99%

DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND): A protocol paper

Farina

Hicks

Baxter

et al. 2019

Int J Geriat Psychiatry

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Objectives: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers. Method: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort-900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care. WS3: Relationship between use and costs of services and outcomes. WS4: Experiences of self-funders of care. WS5: Decision-making processes for people with dementia and carers. WS6: Effect of diagnostic stage and services on outcomes. WS7: Theory of Change informed strategy and actions for applying the research findings.Outcomes: During the life of the programme, analysing baseline results and then followup of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia.

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“…56 Focus groups were used because of their appropriateness in cultural terms as well as the exploratory nature of the research objectives. It has been remarked that Deaf culture is a particularly collective, rather than individualistic, culture, 7,57 and Deaf people often prefer group discussion over individual interviews to explore new ideas or information because this is more culturally coherent, 45 a trait observed in other cultural communities internationally such as Maori and First Nation peoples. 58 …”

Section: Designmentioning

confidence: 99%

“…Deaf people commonly experience highly limited access to information on a wide range of everyday subjects because it is not available in a signed language. 8,45 Means of incidental learning, such as overhearing, accessing popular media or interactions with multiple peer groups, are also affected. Consequently, it is recognised that many Deaf people experience what has been termed a 'low fund of information'.…”

Section: Introductionmentioning

confidence: 99%

“…51 Lack of cultural competence of health practitioners also plays a part in Deaf people's less than optimum engagement with treatment. 45,[52][53][54] In this context it is, therefore, very rare for any health service to be offered to Deaf people where the practitioner is Deaf themselves and shares a common culture, and where the treatment/intervention might be delivered directly without the requirement of an interpreter being present. The BSL-IAPT service that potentially formed one arm of a future trial was a rare exception to this situation in being directly delivered by Deaf people in BSL to other Deaf people.…”

Section: Introductionmentioning

confidence: 99%

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Evaluating the effectiveness and cost-effectiveness of British Sign Language Improving Access to Psychological Therapies: an exploratory study

Young

Rogers

Davies

et al. 2017

Health Serv Deliv Res

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BackgroundImproving Access to Psychological Therapies (IAPT) is a National Institute for Health and Care Excellence-approved approach to intervention for depression and/or anxiety. This exploratory study sets the groundwork for comparing psychological therapies for Deaf sign language users experiencing anxiety and/or depression, delivered in British Sign Language (BSL) by a Deaf therapist with usual access through an interpreter within the IAPT national programme.Objectives(1) To explore the following questions: (a) is BSL-IAPT more effective than standard IAPT for Deaf people with anxiety and/or depression? and (b) is any additional benefit from BSL-IAPT worth any additional cost to provide it? (2) To establish relevant BSL versions of assessment tools and methods to answer research questions (a) and (b). (3) To gauge the feasibility of a larger-scale definitive study and to inform its future design.DesignA mixed-methods exploratory study combing an economic model to synthesise data from multiple sources; a qualitative study of understanding and acceptability of randomisation and trial terminology; statistical determination of clinical cut-off points of standardised assessments in BSL; secondary data analysis of anonymised IAPT client records; realist inquiry incorporating interviews with service providers and survey results.SettingsIAPT service providers (NHS and private); the Deaf community.ParticipantsDeaf people who use BSL and who are clients of IAPT services (n = 502); healthy Deaf volunteers (n = 104); IAPT service providers (NHS and private) (n = 118).InterventionsIAPT at steps 2 and 3.Main outcome measuresReliable recovery and reliable improvement defined by IAPT; Deaf community views on the acceptability of randomisation; BSL terminology for trial-related language; clinical cut-off measurements for the BSL versions of the Patient Health Questionnaire-9 items (PHQ-9) and the Generalised Anxiety Disorder-7 (GAD-7); a valid BSL version of the EuroQol-5 Dimensions five-level version (EQ-5D-5L); costs, quality-adjusted life-years and incremental cost-effectiveness ratios.Data sourcesIAPT service provider anonymised records of the characteristics and clinical outcomes of Deaf BSL users of BSL-IAPT and of standard IAPT; published literature.ResultsRandomisation may be acceptable to Deaf people who use IAPT if linguistic and cultural requirements are addressed. Specifications for effective information in BSL for recruitment have been established. A valid EQ-5D-5L in BSL has been produced. The clinical cut-off point for the GAD-7 BSL is 6 and for the PHQ-9 BSL is 8. No significant difference in rates of reliable recovery and reliable improvement between Deaf users of standard IAPT or BSL-IAPT has been found. Whether or not BSL-IAPT is more cost-effective than standard IAPT is uncertain.LimitationsThe small number of participating standard IAPT services who have seen Deaf clients means that there is statistical uncertainty in the comparable clinical outcome result. Clinical cut-off scores have not been verified through gold standard clinical interview methodology. Limited data availability means that whether or not BSL-IAPT is more cost-effective than standard IAPT is uncertain.ConclusionsThere is a lack of evidence to definitively compare reliable recovery and reliable improvement between Deaf users of standard IAPT and BSL-IAPT. Instrumentation and prerequisites for a larger-scale study have been established.Future workA prospective observational study for definitive results is justified.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Dementia and the Deaf community: knowledge and service access

Abstract: Locating problems of late diagnosis within the Deaf community's poor awareness and knowledge of dementia fails to recognise the structural barriers Deaf people face in timely access to services and accurate recognition of dementia-related changes.

Cited by 21 publications

References 25 publications

Understanding dementia: effective information access from the Deaf community's perspective

Understanding dementia: effective information access from the Deaf community's perspective

DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND): A protocol paper

Evaluating the effectiveness and cost-effectiveness of British Sign Language Improving Access to Psychological Therapies: an exploratory study

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