Dementia NBPDS

Identifying and definitional attributes
Metadata item type:	Data Set Specification
METEOR identifier:	737872
Registration status:	Health, Standard 05/10/2022
DSS type:	Data Set Specification (DSS)
Scope:	The Dementia National Best Practice Data Set (NBPDS) aims to ensure national consistency in relation to defining and recording information on people with dementia and their carers across the health, aged care and social welfare sectors, including: Aged care service providers Allied health Cognitive and memory clinics Community care Disability service providers General practice Mental health Public health Specialists in private practice The Dementia NBPDS provides concise and unambiguous definitions for items related to dementia diagnosis, treatment and management. It aims to standardise the collection of dementia information in Australia across a range of data sets, including those used in clinical practice, clinical registries, epidemiological research and surveys. Admitted patient care, emergency department and mortality data are not in scope for this data set specification, as they fall under other National Minimum Data Sets. While these are not specific to dementia, the coding and capture of dementia in those collections is well specified, documented and nationally (and internationally) agreed.

Collection and usage attributes
Statistical unit:	A Person.
Guide for use:	The Dementia NBPDS encourages national consistency in the definition, collection and recording of information on people with dementia in a range of clinical and non-clinical settings across the health, aged care and social welfare sectors. It contains clusters of items specific to clinical settings and self-reported settings, as well as general items encouraged for collection in all settings. These definitions may prospectively influence existing and emerging collection arrangements. For example, a practice that currently reports on services provided to people with dementia may choose to adjust how components of a diagnosis are captured to align with this nationally consistent specification.
Collection methods:	This data set is designed to be used by a range of health, aged care and disability service providers and establishments that create, use or maintain records on clients with dementia. The data set can be applied to ongoing administrative collections or to survey collections, in both clinical and non-clinical settings.
Comments:	Glossary terms that are relevant to this NBPDS include: Dementia Diagnosis Disability Family Gender Informal carer Sex Veteran
Source and reference attributes
Submitting organisation:	Australian Institute of Health and Welfare
Relational attributes
Related metadata references:	See also Aged Care National Minimum Data Set 2023-24 Aged Care, Standard 30/06/2023

Metadata items in this Data Set Specification

Seq No.	Metadata item	Obligation	Max occurs
-	Activity and participation need for assistance cluster	Optional	1
-	Person—activity and participation life area, disability code N	Mandatory	9
-	Person—need for assistance with activities in a life area, disability code N	Mandatory	9
-	Dementia clinical diagnosis cluster *Conditional obligation:* This cluster should only be completed by a clinician after a clinical diagnosis of dementia.	Conditional	1
-	Person—clinical type of dementia, code NN *DSS specific information:* If more than one dementia type is diagnosed record all types for this item.	Mandatory	99
-	Person—dementia diagnosing clinician, code NN	Mandatory	99
-	Person—method of dementia diagnosis, code NN	Mandatory	99
-	Date—accuracy indicator, code AAA	Optional	3
-	Person—ADF veteran status, code N	Optional	2
-	Person—area of usual residence, statistical area level 2 (SA2) code (ASGS Edition 3) N(9)	Mandatory	1
-	Person—country of birth, code (SACC 2016) NNNN	Optional	1
-	Person—date of birth, DDMMYYYY	Mandatory	1
-	Person—date of death, DDMMYYYY *DSS specific information:* Only to be answered if the person has died. This data element should be collected in conjunction with the Date—accuracy indicator, code AAA data element as an indicator of the accuracy of the components of a reported date.	Optional	1
-	Person—dementia comorbidities, diagnosis code (ICD-10-AM Twelfth edition) ANN{.N[N]} *DSS specific information:* Any diseases or health conditions diagnosed (apart from dementia) should be recorded, using appropriate ICD-10-AM diagnosis codes assigned following the conventions of the ICD-10-AM. Exclude ICD-10-AM codes used to assign dementia types in Person—clinical type of dementia, code NN.	Optional	99
-	Person—dementia diagnosis status, code N	Mandatory	1
-	Person—dementia risk factors, code NN *DSS specific information:* Risk factors present or recorded at diagnosis of dementia should be recorded.	Optional	99
-	Person—diagnosis date of dementia, DDMMYYYY *DSS specific information:* This data element should be collected in conjunction with the Date—accuracy indicator, code AAA data element as an indicator of the accuracy of the components of a reported date.	Optional	1
-	Person—gender, code X *Conditional obligation:* This data element is collected on a Conditional basis with the element Person—sex, code X. Data must be reported for at least one of the two elements, either Sex or Gender. Data may be reported for both elements.	Conditional	1
-	Person—Indigenous status, code N	Optional	1
-	Person—informal carer existence indicator, yes/no/not stated/inadequately described code N	Optional	1
-	Person—informal carer relationship to care recipient, code N[N] *Conditional obligation:* This item should only be completed if CODE 1 Yes was selected for Person—informal carer existence indicator, yes/no/not stated/inadequately described code N. *DSS specific information:* For this collection CODE 3 Mother should also include step mothers and mothers-in-law. For this collection CODE 4 Father should also include step-fathers and fathers-in-law.	Conditional	99
-	Person—living arrangement, dementia code NN	Optional	1
-	Person—main language other than English spoken at home, code (ASCL 2016) N[NNN]	Optional	1
-	Person—marital status, code N	Optional	1
-	Person—non-clinically reported dementia type, code NN *Conditional obligation:* This item should only be used if dementia has been clinically diagnosed but is also being reported by the person or their carer in a non-clinical setting. Non-clinical settings include survey responses, part of an ACAT assessment or a community based aged care service provider setting and other settings that are not clinically reported, i.e. completed as part of a survey response.	Conditional	1
-	Person—proficiency in spoken English, code N	Optional	1
-	Person—residential setting, dementia code NN	Optional	1
-	Person—sex, code X *Conditional obligation:* This data element is collected on a Conditional basis with the element Person—gender, code X. Data must be reported for at least one of the two elements, either Sex or Gender. Data may be reported for both elements. *DSS specific information:* In the Dementia NBPDS a person’s sex is understood to be reported as at the time of data collection.	Conditional	1
-	Person—year of first arrival in Australia, date YYYY *Conditional obligation:* This item should only be completed if Australia was not selected for the data element Person—country of birth, code (SACC 2016) NNNN. *DSS specific information:* This data element should be collected in conjunction with the Date—accuracy indicator, code AAA data element as an indicator of the accuracy of the components of a reported date.	Conditional	1

Dementia NBPDS

Identifying and definitional attributes

Collection and usage attributes

Source and reference attributes

Relational attributes

Metadata items in this Data Set Specification

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Dementia NBPDS

Data Set Specification Attributes

Identifying and definitional attributes

Collection and usage attributes

Source and reference attributes

Relational attributes

Metadata items in this Data Set Specification

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