StepUp for Ageing Research asks about your medical conditions and tests which may be unfamiliar to you. You do not need to answer these questions, but providing this information may help match you to studies. The information provided here may help you. Dementia is more common in older people and some questions relate to dementia.
How should I describe my symptoms?
Most ageing research studies are looking for particular people. Often this can be based on the severity of someone’s dementia. To help ensure you are matched to the right studies, you are asked to describe your symptoms or the volunteer’s symptoms selecting from four options: mild, moderate, severe and unknown. Everyone experiences dementia in their own way and the definitions which follow are general in nature. Please view ‘The progression of dementia‘ on Dementia Australia’s website, which describes these stages in more detail.
- Mild (Early stage): Typical symptoms of early stage dementia include: loss of memory for recent events, repeating oneself, becoming slower at grasping new ideas, finding it harder to make decisions and showing signs of confusion.
- Moderate (Middle stage): Typical symptoms of middle stage dementia include: needing more support to help manage day-to-day living, needing frequent reminders or help to eat, wash, dress and use the toilet; repeating the same question or phrase; becoming increasingly forgetful, particularly of names; and failing to recognise people or confuse them with others.
- Severe (Late stage): Typical symptoms of late stage dementia include: pronounced loss of memory, with inability to recognise familiar objects, surroundings or even loved ones, although there may be sudden flashes of recognition; an increasing amount of help needed with day-to-day activities, becoming more dependent on others for care needs; and becoming increasingly frail, and possibly starting to shuffle or walk unsteadily.
Is dementia the same as Alzheimer’s?
No. Dementia is a general term relating to a loss of cognitive function. There are several types of dementia, which are caused by different underlying changes in the brain. The most common form is Alzheimer’s, accounting for about two thirds of dementia cases. Other common forms include vascular dementia, Lewy body dementia and frontotemporal dementia. You can find out more about types of dementia at: https://www.dementia.org.au/information/about-dementia/types-of-dementia.
Does dementia only happen to older people?
No. The onset of dementia usually occurs after the age of 65. However, about 5% of people with Alzheimer’s disease will develop symptoms before the age of 65 – sometimes in their 30’s and 40’s.
What are plaques and tangles and what are the tests to see these?
The hallmark of Alzheimer’s disease is development of plaques and tangles of certain proteins in the brain. The plaques, sometimes called clumps, are made up of a form of protein called amyloid. The tangles are due to clustering of a protein called tau within the brain cells. If you have been diagnosed with dementia or have participated in clinical trials in the past, you may have undergone tests (i.e., a positron emission tomography (PET), magnetic resonance imaging (MRI) scan, or lumbar puncture) and may have been told whether the tests revealed the presence of amyloid plaques and tau deposits in your brain or cerebrospinal fluid. The presence of these biomarkers provides evidence of Alzheimer’s disease and assists with diagnosis. Another important feature of Alzheimer’s disease is the progressive loss of brain cells. However, loss of brain cells is common to most forms of dementia and therefore is not specific to Alzheimer’s disease.
Alzheimer’s disease can be only speculatively diagnosed based on memory and cognitive assessments alone, since declines in memory and cognition are common to other forms of dementia. Therefore, biological tests are becoming more widely used.
For further information on Amyloid Plaques, Professor John O’Brien from the University of Cambridge explains more in this video.
What is APOE4 and how am I tested?
The APOE (apolipoprotein E) gene is involved in making certain proteins. People who carry APOE4, a version of the gene, have an increased genetic risk of developing Alzheimer’s disease. Knowing whether someone carries APOE4 helps scientists look for early brain changes in study volunteers and compare the effectiveness of treatments for people with different versions of the APOE gene. About half of the people carrying one copy of the APOE4 gene will never develop the disease. The risk of Alzheimer’s is increased further for people with two copies of the APOE4 gene.
APOE testing is not routinely available on Medicare. Some people may be aware of whether they have it if they have taken a private genetic test or been told as part of a previous research study.