NDLI: What do health professionals need to know about young onset dementia? An international Delphi consensus study

Content Provider	Springer Nature : BioMed Central
Author	Couzner, Leah Day, Sally Draper, Brian Withall, Adrienne Laver, Kate E. Eccleston, Claire Elliott, Kate-Ellen McInerney, Fran Cations, Monica
Abstract	Background People with young onset dementia (YOD) have unique needs and experiences, requiring care and support that is timely, appropriate and accessible. This relies on health professionals possessing sufficient knowledge about YOD. This study aims to establish a consensus among YOD experts about the information that is essential for health professionals to know about YOD. Methods An international Delphi study was conducted using an online survey platform with a panel of experts (n = 19) on YOD. In round 1 the panel individually responded to open-ended questions about key facts that are essential for health professionals to understand about YOD. In rounds 2 and 3, the panel individually rated the collated responses in terms of their importance in addition to selected items from the Dementia Knowledge Assessment Scale. The consensus level reached for each statement was calculated using the median, interquartile range and percentage of panel members who rated the statement at the highest level of importance. Results The panel of experts were mostly current or retired clinicians (57%, n = 16). Their roles included neurologist, psychiatrist and neuropsychiatrist, psychologist, neuropsychologist and geropsychologist, physician, social worker and nurse practitioner. The remaining respondents had backgrounds in academia, advocacy, or other areas such as law, administration, homecare or were unemployed. The panel reached a high to very high consensus on 42 (72%) statements that they considered to be important for health professionals to know when providing care and services to people with YOD and their support persons. Importantly the panel agreed that health professionals should be aware that people with YOD require age-appropriate care programs and accommodation options that take a whole-family approach. In terms of identifying YOD, the panel agreed that it was important for health professionals to know that YOD is aetiologically diverse, distinct from a mental illness, and has a combination of genetic and non-genetic contributing factors. The panel highlighted the importance of health professionals understanding the need for specialised, multidisciplinary services both in terms of diagnosing YOD and in providing ongoing support. The panel also agreed that health professionals be aware of the importance of psychosocial support and non-pharmacological interventions to manage neuropsychiatric symptoms. Conclusions The expert panel identified information that they deem essential for health professionals to know about YOD. There was agreement across all thematic categories, indicating the importance of broad professional knowledge related to YOD identification, diagnosis, treatment, and ongoing care. The findings of this study are not only applicable to the delivery of support and care services for people with YOD and their support persons, but also to inform the design of educational resources for health professionals who are not experts in YOD.
Related Links	https://bmchealthservres.biomedcentral.com/counter/pdf/10.1186/s12913-021-07411-2.pdf
Ending Page	12
Page Count	12
Starting Page	1
File Format	HTM / HTML
ISSN	14726963
DOI	10.1186/s12913-021-07411-2
Journal	BMC Health Services Research
Issue Number	1
Volume Number	22
Language	English
Publisher	BioMed Central
Publisher Date	2022-01-02
Access Restriction	Open
Subject Keyword	Public Health Health Administration Health Informatics Nursing Research Young onset dementia Health professionals Delphi study Knowledge Consensus
Content Type	Text
Resource Type	Article
Subject	Health Policy

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

Measuring organisational readiness for patient engagement (MORE): an international online Delphi consensus study

Developing consensus-based policy solutions for medicines adherence for Europe: a delphi study

What should we know about dementia in the 21st Century? A Delphi consensus study

What do patients and the public know about clinical practice guidelines and what do they want from them? A qualitative study

Strategies to enhance risk communication about medicines in Malaysia: a Delphi study among multinational experts

What is a research derived actionable tool, and what factors should be considered in their development? A Delphi study

Identifying competencies for integrated knowledge translation: a Delphi study

“what do policy makers need to know about the skills of young people.

Nursing-sensitive quality indicators for quality improvement in Norwegian nursing homes – a modified Delphi study

What do health professionals need to know about young onset dementia? An international Delphi consensus study

Similar Documents

Measuring organisational readiness for patient engagement (MORE): an international online Delphi consensus study

Developing consensus-based policy solutions for medicines adherence for Europe: a delphi study

What should we know about dementia in the 21st Century? A Delphi consensus study

What do patients and the public know about clinical practice guidelines and what do they want from them? A qualitative study

Strategies to enhance risk communication about medicines in Malaysia: a Delphi study among multinational experts

What is a research derived actionable tool, and what factors should be considered in their development? A Delphi study

Identifying competencies for integrated knowledge translation: a Delphi study

“what do policy makers need to know about the skills of young people.

Nursing-sensitive quality indicators for quality improvement in Norwegian nursing homes – a modified Delphi study

What do health professionals need to know about young onset dementia? An international Delphi consensus study