Cognisance Co-Designing the Dementia Diagnostic Process and Post-Diagnostic Care (Cognisance)

DOI

The Cognisance data set consists of a mix of quantitative and qualitative research. We collected data on experiences with post-diagnostic dementia support and we carried out an evaluation of a website and campaign: Forward with Dementia.

To investigate the experiences of post-diagnostic dementia support, surveys were distributed to people with dementia (N=23), informal caregivers (N=134) and health and social care providers (N=20). Additionally, qualitative research focussed on barriers and facilitators with post-diagnostic dementia support. The qualitative data used a mix of strategies (online focus groups, telephone, online, face-to-face and dyadic interviews). We included 6 people with dementia, 10 informal caregivers and 11 health and social care professionals. To evaluate the website and campaign of Forward with dementia data on reach, effectiveness adoption and implementation was collected. A short evaluation questionnaire of the website yielded 23 responses. A short questionnaire on campaign events yielded 44 responses. A questionnaire on experience with Forward with dementia was completed by 14 informal caregivers. Qualitative data was collected with 2 people with dementia, 10 informal caregivers, 4 health and social care providers and 4 key stakeholders.

Access to (part of) these data is restricted because they contain (pseudonymized) personal data and were collected based on informed concent and ethical permission. After filing a request for the data, the researcher who deposited the data will be informed. If the data depositor considers the request reasonable the data depositor will contact the requester for further information and discuss the request with Maastricht University data managers to set up a data sharing agreement. The 'creative commons CC BY 4.0' applies to any unrestricted data in this data collection.

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Identifier
DOI https://doi.org/10.34894/GE0GHE
Metadata Access https://dataverse.nl/oai?verb=GetRecord&metadataPrefix=oai_datacite&identifier=doi:10.34894/GE0GHE
Provenance
Creator Wolfs, Claire; Vugt, Marjolein de; Verhey, Frans; Hevink, Maud
Publisher DataverseNL
Contributor Wolfs, Claire
Publication Year 2023
Funding Reference JPND; JPND, 180626
Rights info:eu-repo/semantics/openAccess
OpenAccess true
Contact Wolfs, Claire (Maastricht University)
Representation
Resource Type Qualitative data; Dataset
Version 1.0
Discipline Life Sciences; Medicine