Glossary

Aboriginal and/or Torres Strait Islander: A person of Aboriginal and/or Torres Strait Islander descent who identifies as an Aboriginal and/or Torres Strait Islander.

Additional diagnosis: The diagnosis of a condition or recording of a complaint that requires provision of care. In this report, additional diagnoses are from episodes of admitted patient care (hospitalisation) and either coexists with the principal diagnosis or arises during the episode of care. Multiple diagnoses may be recorded.

Age-specific rates: The number of events for a specified age group over a specified period (for example, a year) divided by the total population at risk of the event in that age group.

Age-standardised rates: Age-standardised rates enable comparisons to be made between populations that have different age structures. Direct standardisation was used in this report, in which the age-specific rates are multiplied by a constant population. This effectively removes the influence of the age structure on the summary rate. Where age-standardised rates have been used, this is stated throughout the report.

All age-standardised rates in this report have used the June 2001 Australian total estimated resident population as the standard population.

Alzheimer’s disease: A degenerative brain disease caused by nerve cell death resulting in shrinkage of the brain. A common form of dementia.

Anatomical Therapeutic Chemical (ATC) classification: Anatomical Therapeutic Chemical (ATC) codes are used to classify medicines. The ATC classification of medicines is recommended by the World Health Organization, and is the Australian standard for presenting and comparing drug usage data. The ATC classification groups medicines according to the body organ or system on which they act, and their therapeutic and chemical characteristics. More information on the ATC classification system can be found at structure and principles.

Associated cause(s) of death: A cause(s) listed on the medical certificate of cause of death, other than the underlying cause of death. They include the immediate cause, any intervening causes, and conditions that contributed to the death but were not related to the disease or condition causing death. See also cause(s) of death.

Attributable burden: The disease burden attributed to a particular risk factor. It is the amount of burden that could be avoided if the risk factor were removed or reduced to the lowest possible exposure.

Australian population: The Estimated Resident Population (ERP) is used to count the Australian population in this report (see Estimated Resident Population in data sources). The ERP includes all people, regardless of nationality or citizenship, who usually live in Australia (except for foreign diplomatic personnel and their families).

Average length of stay: The average number of patient-days for admitted patient episodes (referred to as hospitalisation in this report). Patients who have an admission and a separation on the same date are allocated a length of stay of 1 day.

Behaviours and psychological symptoms of dementia (BPSD): Refer to a range of non-cognitive symptoms common among people with dementia. These include – agitation, anxiety, apathy, depression, hallucinations or delusions, insomnia, risky behaviour, resistive behaviour, verbal aggression and wandering. 

Burden of disease (and injury): The quantified impact of a disease or injury on a population using the disability-adjusted life years (DALY) measure. 1 DALY is equivalent to 1 healthy year of life lost.

Carer: Carer refers to people who provide any informal assistance (help or supervision) to people with disability or older people. In the ABS Survey of Disability, Ageing and Carers (SDAC) for an individual to be considered a carer, the assistance they provide must be ongoing, or likely to be ongoing, for at least 6 months. People who provide formal assistance (on a regular paid basis, usually associated with an organisation) are not considered to be a carer for the purpose of this report. In the ABS SDAC, a carer is either a primary carer or an other carer.

Cause(s) of death: All diseases, morbid conditions or injuries that either resulted in or contributed to death – and the circumstances of the accident or violence that produced any such injuries – that are entered on the medical certificate of cause of death. Causes of death are commonly reported by the underlying cause of death or associated cause(s) of death.

Community-based aged care: Support services that assist older people to continue to live independently at home. This may include healthcare and nursing services, home modifications and assistance with daily activities. This report focuses on government-subsidised community-based aged care services.

Comorbidities/ co-existing health conditions: Defined in relation to an index disease/condition, a comorbidity or co-existing health condition includes any additional disease that is experienced by a person while they have the index disease (in this instance, dementia).

Comprehensive assessment: A comprehensive assessment is provided by Aged Care Assessment Teams for people with complex and multiple care needs to determine the most suitable type of care (home care, residential or transition care). By law, a comprehensive assessment is required before someone can receive government-subsidised residential, home, or transition care.

Confidence intervals: A confidence interval is a range of values that is used to describe the uncertainty around an estimate, usually from a sample survey. Generally speaking, confidence intervals describe how different the estimate could have been if the underlying conditions stayed the same but chance had led to a different set of data (for example a different survey sample). Confidence intervals are calculated with a stated probability, 95% is used throughout the report; using this probability, there is a 95% chance that the confidence interval contains the true value. Confidence intervals are only reported for survey data in this report.

COVID-19: A disease of the respiratory system, particularly in the early stages of the illness, caused by the coronavirus SARS-CoV-2. Common early symptoms are similar to other respiratory illnesses, but the infection can have a wide variety of manifestations. In some people the infection can progress to become a more severe disease, with the immune system overreacting, resulting in inflammation and lack of oxygen to many parts of the body. This can lead to multiple organ failure and death. Severe symptoms tend to develop in the second week of the disease.

Crude rates: A crude rate is defined as the number of events over a specified period (for example, a year) divided by the total population at risk of the event.

Culturally and linguistically diverse (CALD): There are a number of ways to define culturally and linguistically diverse people. Generally, people who were born overseas, have a parent born overseas and/or who speak a variety of languages are considered to be in the CALD population. In this report, information on people with dementia from CALD backgrounds is presented for available measures (i.e. people who were born in non-English speaking countries) rather than as a group (i.e. people from CALD backgrounds).

Data linkage/linked data: Bringing together (linking) information from two or more data sources believed to relate to the same entity, such as the same individual or the same institution. The resulting data set is called linked data. In this report, data linkage is used to bring together information from datasets that indicates a population of interest (such as people with dementia) with other datasets that include information on other characteristics or service usage.

Dementia: A term used to describe a group of similar conditions characterised by the gradual impairment of brain function. It is commonly associated with memory loss, but can affect speech, cognition (thought), behaviour and mobility. An individual’s personality may also change, and health and functional ability decline as the condition progresses. Dementia is a fatal condition.

Dementia-specific medications: Prescription medications specifically used to treat the symptoms of dementia. There are 4 dementia-specific medications – Donepezil, Galantamine, Rivastigmine and Memantine – currently subsidised under the Pharmaceutical Benefits Scheme and Repatriation Pharmaceutical Benefits Scheme. These medications can be prescribed to patients with a confirmed diagnosis of Alzheimer’s disease made by (or in consultation with) a specialist or consultant physician under specific clinical criteria. In order to continue treatment, patients must demonstrate a clinically meaningful response to the treatment. This may include improvements in the patients’ quality of life, cognitive function and/ or behavioural symptoms.

Direct expenditure: Expenditure directly related to the treatment or provision of services for a specific disease. It does not include indirect expenditure, such as travel costs for patients, the social and economic burden on carers and family, and lost wages and productivity.

Disability adjusted life years (DALY): A year (1 year) of healthy life lost, either through premature death or equivalently through living with disability due to illness or injury. It is the basic unit used in burden of disease estimates.

Donepezil: A dementia-specific medication approved in Australia for the treatment of mild to moderate Alzheimer’s disease. It is an acetylcholinesterase inhibitor and works by blocking the actions of the enzyme acetylcholinesterase, which destroys acetylcholine – a major neurotransmitter for memory. The use of this medicine may lead to increased communication between nerve cells and slow dementia progression

Fatal burden: The burden of disease from dying prematurely as measured by years of life lost (YLL). Often used synonymously with years of life lost.

First Nations people: A person who identifies themselves as being of Aboriginal and/or Torres Strait Islander origin.

First Nations status: A term used to describe whether or not a person identifies as being of Aboriginal and/or Torres Strait Islander origin.

Frontotemporal dementia: A type of dementia caused by progressive damage to the frontal and/or temporal lobes of the brain. Frontotemporal dementia is more commonly seen in people with younger onset dementia

Galantamine: A dementia-specific medication approved in Australia for the treatment of mild to moderate Alzheimer’s disease. It is an acetylcholinesterase inhibitor and works by blocking the actions of the enzyme acetylcholinesterase, which destroys acetylcholine – a major neurotransmitter for memory. The use of this medicine may lead to increased communication between nerve cells and slow dementia progression.

Home Support Assessment: A home support assessment is provided by Regional Assessment Services for people seeking community-based entry-level support that is provided under the Commonwealth Home Support Programme.

Hospitalisation: An episode of hospital care that starts with the formal admission process and ends with the formal separation process. An episode of care can be completed by the patient being discharged, being transferred to another hospital or care facility, or dying, or by a portion of a hospital stay starting or ending in a change of type of care (for example, from acute to rehabilitation).

Impairment: Any loss or abnormality of psychological, physiological or anatomical structure or function.

Incidence: The number of new cases (of an illness or event) that occur during a given period. Compare with prevalence.

Lewy body dementia/ dementia with Lewy bodies: A type of dementia caused by the degeneration and death of nerve cells in the brain due to the presence of abnormal spherical structures, called Lewy bodies, which develop inside nerve cells.

Life expectancy: Indication of how long a person can expect to live, depending on the age they have reached. Technically, it is the average number of years of life remaining to a person at a particular age if age-specific death rates do not change.

Mean/average: The expected value of a particular variable if you were to select an observation at random from a population. Calculated by adding together the values of a variable across the total population and dividing the result by the number of observations in the population.

Median: The midpoint of a list of observations that have been ranked from the smallest to the largest.

Mild cognitive impairment: Significant memory loss, more than expected for the individual’s age, with no other changes in cognitive function. People with mild cognitive impairment are still able to function independently. Mild cognitive impairment increases the risk of Alzheimer’s disease, but it does not mean that the development of dementia is certain.

Mixed dementia: Multiple types of dementia affecting the same person. Mixed dementia is common in the population. The most common combination is Alzheimer’s disease and vascular dementia.

Memantine: A dementia-specific medication approved in Australia for the treatment of moderately severe to severe Alzheimer’s disease. It works by blocking the neurotransmitter glutamate, which causes damage to brain cells and is present in high levels in people with Alzheimer’s disease.

Mode of separation: The status of a patient at the end of the hospital episode, in terms of where they were discharged to or if they died.

Modifiable risk factors: Risk factors that can be modified or reduced (such as tobacco smoking).

Morbidity: The ill health of an individual and levels of ill health in a population or group.

Mortality: Number or rate of deaths in a population during given time period.

Non-fatal burden: The burden of disease from living with ill-health as measured by years lived with disability. Often used synonymously with years lived with disability (YLD).

Non-Indigenous: People who have not indicated that they are of Aboriginal or Torres Strait Islander descent.

Non-modifiable risk factors: Risk factors that cannot be modified or reduced (such as aging or genetics).

Out-of-pocket costs: The total costs incurred by individuals for health care services over and above any refunds from Medicare and private health insurance funds.

Palliative care: Care in which the clinical intent or treatment goal is primarily quality of life for a patient with an active, progressive disease with little or no prospect of cure.

Patient days: Total patient days is the total number of days for all patients who were admitted for an episode of care and who separated during a specified reference period. A patient who is admitted and separated on the same day is allocated 1 patient day.

Pharmaceutical Benefits Scheme (PBS): A scheme through which the Australian Government subsidises the cost of a wide range of prescription medicines. Most prescriptions for General Schedule medicines (Section 85) are dispensed through community pharmacies, but the PBS is also available through eligible public hospitals to patients on discharge, and day patients. Several drugs are also distributed under alternative arrangements where these are considered more appropriate (Section 100).

Prescription: An authorisation issued by a medical profession for a patient to be issued a particular medication. For dementia-specific medications, typically a prescription (script) authorises a person to receive one month’s supply of medication.

Prevalence: The number or proportion (of cases or events) in a population at a given time. For example, the number of people alive who have been diagnosed with dementia in a single year. Compare with incidence.

Primary carer: A primary carer is the carer who provided the most informal, ongoing assistance for a person with a disability. In the ABS Survey of Disability, Ageing and Carers , for a person to be considered a primary carer they must be aged 15 or over and assist with 1 or more core activity tasks (mobility, self-care or communication). Their assistance must be ongoing, or likely to be ongoing, for at least 6 months. In this report, the primary carer had to be living in the same household as their care recipient.

Principal diagnosis: The principal diagnosis is the diagnosis considered to be chiefly responsible for occasioning an episode of patient care (hospitalisation).

Prion diseases: Prion diseases are a group of rare neurodegenerative conditions caused by abnormally folded proteins in the brain.

Rate: One number (numerator) divided by another number (denominator). The numerator is commonly the number of events in a specified time. The denominator is the population ‘at risk’ of the event. Rates (crude, age-specific and age-standardised) are generally multiplied by a number such as 100,000 to create whole numbers. In some instances, for example with prescription volumes or expenditure amounts in magnitude, a multiplier of 100 is used to aid comprehension.

Remoteness: Remoteness is classified according to the Australian Statistical Geography Standard 2016 Remoteness Areas structure, usually based on location of current residence. Data on the location of usual residence may be collected differently across data sources. ABS correspondences are used to assign data from one type of geographic region to another, for example, Statistical Area Level 2 (SA2) to Remoteness Areas.

Repatriation Pharmaceutical Benefits Scheme (RPBS): A scheme through which the Australian Government subsidises the cost of a wide range of prescription medicines for veteran (DVA) health care card holders. Like the Pharmaceutical Benefits Scheme (PBS) most prescriptions for General Schedule medicines (Section 85) are dispensed through community pharmacies, but the PBS is also available through eligible public hospitals to patients on discharge, and day patients. Several drugs are also distributed under alternative arrangements where these are considered more appropriate (Section 100).

Residential aged care: A program that provides personal and/or nursing care to people in a residential aged care facility. As part of the service, people are also provided with meals and accommodation, including cleaning services, furniture and equipment.

Respite care: An alternative care arrangement for dependent people living in the community, giving people – or their carers – a short break from their usual care arrangements. Friends, family or the community may also provide informal respite.

Risk factor: Any factor that represents a greater risk of a health condition or health event.

Rivastigmine: A dementia-specific medication approved in Australia for the treatment of mild to moderate Alzheimer’s disease. It is an acetylcholinesterase inhibitor and works by blocking the actions of the enzyme acetylcholinesterase, which destroys acetylcholine – a major neurotransmitter for memory. The use of this medicine may lead to increased communication between nerve cells and slow dementia progression.

Separation: A separation is the formal process where a hospital records the completion of an episode of treatment and/or care for an admitted patient – in this report, described by the term hospitalisation.

Socioeconomic areas/disadvantage: Defined in this report using the Socio-Economic Index for Areas (SEIFA), summary measures of socioeconomic disadvantage and advantage. Socioeconomic disadvantage data in this report is typically reported using the Index of Relative Socioeconomic Disadvantage (IRSD). The Index of Relative Socio-economic Disadvantage (IRSD) is a general socio-economic index that summarises a range of information about the economic and social conditions of people and households within an area. A low score indicates relatively greater disadvantage in general. A high score indicates a relative lack of disadvantage in general.
 
This report disaggregates some results by five socioeconomic groups. Each group has the fifth of the population with an increasing IRSD score: the first group has the 20% of the population of interest who live in areas with the highest IRSD score (are the most disadvantaged) and the fifth group contains the 20% of the population of interest who live in areas with the highest IRSD score (are the least disadvantaged).

Statistical discharge: A statistical discharge is a mode of separation assigned to patients for whom the intent of care changed during their stay in hospital (for example, from acute care to palliative care).

Supplementary code: A supplementary code is assigned for chronic conditions that are part of the current health status on admission that do not meet criteria for inclusion as a principal or additional diagnosis on the patient’s hospital record.

Underlying cause of death: The disease or injury that initiated the train of events leading directly to death, or the circumstances of the accident or violence that produced the fatal injury. See also cause(s) of death and associated cause(s) of death.

Vascular dementia: A form of dementia mainly caused by haemodynamic (blood flow to the brain) disorders (e.g. strokes), thromboembolism (small blood clots that block small blood vessels in the brain), small blood vessel disease in the brain and bleeding into or around the brain.

Years lived with disability (YLD): The number of years of what could have been a healthy life that were instead spent in states of less than full health. YLD represent non-fatal burden.

Years of life lost (YLL): The number of years of life lost due to premature death, defined as dying before the ideal life span. YLL represent fatal burden.

Younger onset dementia: Dementia that develops in people aged under 65.