Dr Kulh answers some commonly asked questions about dementia; what you can expect if you receive a diagnosis, and how we can become a more dementia-friendly society.

Q. The Australian Institute of Health and Welfare estimates there are currently more than 400,000 Australians living with dementia, and that more than 1.5 million people are involved in caring for someone living with dementia. What is dementia?

Dementia is a broad term referring to more than 100 different diseases that cause a progressive decline in a person’s cognitive function.

The most common form of dementia is Alzheimer’s Disease. It impacts a person’s memory, thinking and behaviour. Other forms of dementia include Lewy Body Disease, Vascular dementia, Frontotemporal dementia and secondary dementia.

Most people living with dementia are over the age of 65 years, however, dementia can occur in people of all ages. The Australian Institute of Health and Welfare estimates there were 27,800 people living with ‘younger onset dementia’ in 2021.

Q. What causes dementia?

Many different conditions can cause dementia, however, in most cases we may never know why someone has developed the disease.

According to the World Health Organisation, there are 12 recommendations for reducing the risk for cognitive decline. These are:

• Be physically active

• Stop smoking

• Eat a balanced diet

• Drink alcohol in moderation

• Do cognitive training

• Be socially active

• Look after your weight

• Manage hypertension (high blood pressure)

• Manage any diabetes

• Manage high cholesterol

• Manage depression

• And look after your hearing and manage hearing loss.

Q. What is your advice to someone who thinks they may have dementia?

The average time from symptom onset to diagnosis is between one and three years.

Accurate and timely diagnosis is really important when it comes to dementia, so the first step is to contact your GP as soon as you become concerned.

Several tests are necessary to determine if you have dementia, as well as what form of the disease. These tests will include a cognitive function assessment. There are also specific assessments for our First Nations people, including the KICA or Kimberley Indigenous Assessment Tool.

Once a diagnosis of dementia is confirmed, we turn our attention to working out why this has happened and the underlying cause. It is important to note not everyone who is cognitively impaired has dementia.

Determining the underlying cause involves screening blood tests and often imaging of the brain. It may also require a referral to a memory clinic, neurologist, geriatrician or psychiatrist.

The reason why an accurate and timely diagnosis is key is to determine whether the person has dementia or whether it is some other potentially reversible condition. If it is dementia, we want to know what type of dementia it is so we can best mitigate the impact on the individual and their loved ones.

Q. I have received a diagnosis of dementia, what happens next?

Depending on the form of dementia you have, treatments may differ quite significantly.

Currently, there is no cure for dementia. There are a number of medications available which can help with some of the early symptoms of dementia. These can be associated with side-effects so it is important to know the risks and benefits.

Supportive, best practice care for the person living with dementia, and care and support for their family and loved ones is key in this journey. Maintaining physical fitness and preventing frailty are also key to reducing the impact of dementia.

Q. What are the stages of dementia?

People with mild dementia often have issues with memory such as forgetting appointments, however, they remain independent with their mobility, can still perform some work functions and continue a fairly independent daily life.

Moderate dementia progresses into the next stage where one’s memory loss becomes deeper and may affect recollection of early personal life. There may be other issues around judgement, planning, being able to engage in more complex scenarios such as using public transport or managing finances. People with moderate dementia are mostly independently mobile, usually can feed themselves and can perform daily tasks if given the time and support. However, their ability to navigate an environment can sometimes become problematic.

Severe dementia is usually when people are very dependent on others. They may not be able to walk at all, language and ability to express themselves can become impaired and they need help with most activities of daily life.

It is important to note that there isn’t usually a smooth trajectory and the journey is different for everyone. A person will also have good days and bad days, no matter what stage of their dementia. The progression of dementia depends on the type of dementia. Progression from early to late stage can occur over 8-10 years in Alzheimer’s Disease whereas it is can be more rapid in Frontotemporal dementia where progression can occur over 4-8 years.

Q. This year’s Dementia Action Week is focused on making communities more dementia-friendly and reducing the stigma around dementia. Why is this important?

The stigma around dementia is only there because of ignorance. People may not understand dementia and this may lead people to become fearful and judgmental.

I hear from a lot of people living with dementia that from the time they received the diagnosis, people started treating them differently. A diagnosis of dementia isn’t a sentence and it doesn’t mean the person has changed. It means the person has a neurological disorder but they are “still them”.

We want people living with dementia to feel comfortable and enabled, so they can continue to function to the best of their ability. We have to make sure that people living with dementia have a say in the decisions affecting their lives. They should be able to participate in the decision making process and contribute to the community in the same way as anyone living with a disability.

So rather than say you’ve got a diagnosis of dementia and we’re going to treat you differently, we need to say that we understand you have a progressive neurological disorder and you do have some cognitive challenges but you’re “still you” and you can still contribute to the world. You will be treated with respect and dignity.

Enabling, empowering and respecting people living with dementia, so they can continue to live their lives to the best of their ability, is key to creating a dementia-friendly future.

For more information, including help sheets and resources about dementia, visit dementia.org.au