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ID
Source
Brief title
Health condition
Any type of dementia
Sponsors and support
Intervention
Outcome measures
Primary outcome
Access to dementia care services
Secondary outcome
Well-being
Background summary
Background: People from disadvantaged backgrounds often experience difficulties in accessing and using health care services. Often, this is linked to health illiteracy, as people from disadvantaged backgrounds may struggle obtaining and understanding basic health information. So, it may be difficult for people from disadvantaged backgrounds to access formal dementia care when needed. Whilst research has looked at access to formal dementia care, little evidence exists on how health inequalities and health illiteracy might affect using formal dementia care.
Method: Data will be collected in England and in the Netherlands. This study comprises of two projects. Project 1 is a questionnaire for informal carers of people with dementia, which will be handed out to them via memory clinics at NHS Trusts across the North West Coast region, via the ENRICH and Join Dementia Research network, and via support groups from dementia Carers UK. Similar methodologies will be employed in the Netherlands, where questionnaires will be handed out via long-term care providers (e.g. community nurses and case managers) memory clinics, nursing homes and organisations such as the Alzheimer café. National ethical approval will be sought separately. The questionnaires asks information about their basic demographics, the person they care for with dementia, and his/her formal dementia care utilisation and health care utilisation. Completed questionnaires can then be returned via free post envelopes. Project 2 involves 20 semi-structured interviews with people with dementia and their informal carers to explore their experiences of trying to and accessing and utilising formal dementia care services in England, and 20 in the Netherlands. Recruitment for this project will be similar to the questionnaire project.
Analysis: It is anticipated to receive back 500 carer questionnaires. Findings will be analysed through frequency analysis, bivariate correlation analysis, and multiple regression (a) to explore how formal dementia care receipt varies between people with dementia from disadvantaged and advantaged backgrounds, and to compare between England and the Netherlands; and (b) to explore to what extent socio-economic factors predict formal dementia care. Data from the interviews will be analysed using thematic analysis.
Potential implications: Findings from this study will help to understand how socio-economic factors might hinder people with dementia and their carers in accessing and utilising formal dementia care services, and understand any national variations between England and the Netherlands. Subsequently, it could be possible to address some of these barriers through interventions, to enable people from any background, whether disadvantaged or advantaged, to access the right dementia care they need at the right time.
Study objective
People from more disadvantaged backgrounds face barriers in accessing post-diagnostic dementia care.
Study design
Single point in time
Intervention
The current study is not an intervention study. Participants will be asked to fill in a questionnaire about the topic, or to participate in a semi-structured interview.
Inclusion criteria
- Carer of a person with any stage and type of dementia
- 18 years or older
Exclusion criteria
No exclusion criteria
Design
Recruitment
IPD sharing statement
Followed up by the following (possibly more current) registration
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Other (possibly less up-to-date) registrations in this register
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In other registers
Register | ID |
---|---|
NTR-new | NL7912 |
Other | METC Z : METCZ20190089 |