Please list any other organisations you have collaborated with on this submission.
Who you have consulted with
I have been part of a discussion about a submission from the NHMRC National Institute for Dementia Research (NNIDR), but this is an additional private submission which may overlap substantially with the one from NNIDR.
What is your submission about?
Please provide a brief summary of your submission
Topic name
Please consider including a response option 'memory problems' for item 23 in the previous census about why the person need assistance or supervision.
Choose your area of interest
Please select one item
(Required)
Population
Sex and gender
Households and families
Aboriginal and Torres Strait Islander peoples
Income and work
Unpaid work and care
Education and training
Ticked
Disability and carers
Housing
Location
Transport
Cultural diversity
Religion
Other topic
Topics on Disability and carers
Choose one or more of the following topics that relates to your submission
Please select all that apply
Ticked
Need for assistance
Unpaid care (due to the disability, long term illness or old age of another person)
Other/unknown
Assessment Criteria 1
1.
This topic is of current national importance.
National Importance
With increasing longevity, more people are likely to develop severe memory problems, cognitive impairments and dementia. But it is very difficult to obtain data at a population level that can be used for policy development and program monitoring around providing support services to enable people with these problems to remain living in the community (rather than permanent residential aged care). National health surveys, and even surveys of disability, tend to miss elderly people with these problems. Consequently estimates of the numbers of people living with these limitations vary wildly, and are a source of concern to ABS staff in the health area.
Assessment Criteria 2
2.
There is a need for data from a Census of the whole population.
For whole population
Problems with memory, cognition and dementia are not limited to any geographical area. They are predominantly limited to the elderly, say people aged over 75 - but this is a growing proportion of the population. This response option could be added to those for item 23 in the 2016 census.
Assessment Criteria 3
3.
The topic can be accurately collected in a form which the household completes themselves.
Easy to answer
I believe the response 'memory problems' in the context of a person needing assistance or supervision would be easily understood.
This is only an addition of one response option added to an existing item.
While there will be some subjectivity in respondents knowing how to answer, it is in the context of the person needing assistance or supervision.
It would be quick to answer.
Assessment Criteria 4
4.
The topic would be acceptable to Census respondents.
Acceptable
I believe this response option would be inoffensive.
Among people who care for others living with cognitive impairment and dementia, this recognition of a major issue in their lives is likely to be appreciated - someone cares enough to ask, and to do so in a sensitive way.
Assessment Criteria 5
5.
The topic can be collected efficiently.
Collected efficiently
In my opinion this one addition to the response items is unlikely to cause any problems of coding (it isn't text), processing, or need any additional instructions.
Assessment Criteria 6
6.
There is likely to be a continuing need for data on this topic in the following Census.
Continuing need
Time series data on memory problems, cognitive impairment and dementia will become increasingly important for decades to come. Even if incidence rates (e.g. numbers of new cases in a given period per 10,000 population) were to decline due to improvements in prevention and treatment, population ageing will ensure that the numbers of people living with these conditions will grow - this is indeed one of the challenges for Australia in the future.
Assessment Criteria 7
7.
There are no other alternative data sources or solutions that could meet the topic need.
No alternatives
Data of clinically recognised cases of dementia are recorded in many sources: hospital data, death certificates, Medicare and aged care assessments. These data can be integrated via record linkage - indeed this has been done by my own research group and by the Australian Institute of Health and Welfare. However coverage in any one source is not great and using capture-recapture methods we have estimated the undercount is about 20%. This level or error is too large for the purposes of policy and program monitoring, where detailed diagnosis (e.g. Alzheimer's disease vs some other form of dementia) is much less important than the need for assistance and supervision.
Any further comments?
If you would like to tell us anything else about your submission, please comment below.
Further comments
Hopefully my submission is self explanatory. However if any further information is required I'll happily provide it.