Dementia Action Week

This Dementia Action Week (16-22 September), we’re encouraging everyone to take the first step to learn more about dementia and how you can help shape our community for the better.

“… just because I have dementia it doesn’t mean I am stupid. I have not lost my knowledge and life experience; it is just that I sometimes have difficulty in accessing the details.” – Person living with dementia

What is dementia?
Dementia is the term used to describe the symptoms of a large group of illnesses that cause a progressive decline in brain function. Symptoms often include memory loss, difficulty communicating, and personality changes. People living with dementia may also experience challenges with thinking, behaviour, recognising people, and understanding the use of everyday objects.

While Alzheimer's disease is the most common type, there are over 400 different forms of dementia, including vascular dementia, frontotemporal dementia, and Lewy body disease. Although dementia is more common in individuals over 65, anyone can develop it. ‘Younger onset dementia’ refers to dementia diagnosed before the age of 65.

Not all older people will develop dementia, but the risk increases with age. However, dementia is not a ‘normal part of ageing.’

Sadly, dementia is a terminal illness with no current cure, which means a diagnosis will shorten a person’s life expectancy.

Types of dementia
There are many medical conditions that can lead to dementia. Some of the most common types include:

• Alzheimer's disease is the most common form, caused by damage to brain neurons. It leads to memory loss, slower thinking, and behavioural changes. There is no cure, but treatments can help manage symptoms. Risk factors include age, physical inactivity, lack of mental exercise, smoking, obesity, diabetes, high cholesterol, and high blood pressure. Maintaining a healthy lifestyle can reduce the risk.

• Lewy body dementias, including dementia with Lewy bodies and Parkinson's disease dementia, are caused by protein tangles (Lewy bodies) in brain cells. These tangles disrupt the normal functioning of brain cells, leading to symptoms that affect movement, thinking, and behaviour. The exact causes of Lewy body formation are unclear, but genetic and environmental factors may play a role.

• Vascular dementia is caused by reduced blood flow to the brain. It affects reasoning, planning, judgment, attention, and daily life. Often occurring with Alzheimer’s, it can be challenging to diagnose. Risk factors include high blood pressure, cholesterol, diabetes, obesity, smoking, inactivity, heart problems, and strokes. A healthy lifestyle can reduce the risk.

• Childhood dementia is a rare genetic condition that affects memory, behaviour, emotions, and communication. It is progressive and has no cure. Many children with childhood dementia don’t survive beyond the age of 10. Worldwide, approximately one in 2,900 babies are born with the condition. In Australia, an estimated 1,394 children were living with dementia in 2021.

Key data

• Dementia is the leading cause of death for Australian women

• Dementia is the second leading cause of death for all Australians

• 19 per 1,000 people in Murrumbidgee have a diagnosis of dementia, higher than both the State (17 per 1,000) and National (15 per 1,000) rates

• Dementia prevalence rates are 3-5 times higher among Indigenous Australians

• The number of Australians living with dementia is predicted to double by 2058

• On average, a dementia diagnosis takes three years

• Almost 29,000 Australians live with younger onset dementia

• 54% of people in permanent residential aged care have dementia

• 2 in 3 people with dementia are thought to be living in the community

• More than 1.6 million Australians are involved in caring for someone with dementia, with over 335,000 providing consistent unpaid care

• It is estimated that $3 billion of the Australian Government’s $195.7 billion health and aged care expenditure in 2018-19 was directly for dementia

Still Here photographic exhibition
The Still Here exhibition reminds us that behind every person living with dementia is a unique individual with dignity and grace. It runs until 21st September at Leeton Museum and Art Gallery.

How to support people living with dementia in our community
A person with dementia may forget your name, but they will always remember how you made them feel. The best way to help someone with dementia is to stay interested, stay in touch, and let them know they are loved.

• Include, encourage, empower
  People living with dementia can still participate in many activities. Create opportunities for them to contribute and stay connected to their communities. Simple actions like asking someone to share their ideas can make them feel included and empowered. Notice when someone needs more time or space to participate, and ask questions that lead to inclusive conversations, like ‘What made you want to move to this town?’

• Communication is key
  Effective communication is essential when interacting with people living with dementia. Here are some tips:

  • Be present and listen with your heart

  • Talk directly to the person, not the carer

  • Greet with a smile and make eye contact

  • Use simple language and speak clearly

  • Express one idea at a time

  • Be patient and allow time for responses

  • Don’t prejudge their understanding

  • Respect their dignity

• Look out for people in your community
  Simple gestures like saying hello and showing kindness can make a difference. Introducing yourself each time you meet, using both your name and theirs, is a helpful way to build rapport.

Our work
Through our Dementia Support Pathways activity, we have engaged with people living with dementia and their loved ones. While many stories were filled with grief and frustration, we were also inspired by the strength and dedication of carers.

During our conversations, participants shared the following:

“It is so isolating in all respects. Not just for the person diagnosed, but also for the people close to them. It is difficult to talk to people about it without getting upset.”

“You can feel guilty for accessing respite or other care because you feel like you failed your caring responsibilities. It is hard to know when the right time is to put them in to care.”

“I used to get so cranky at my husband for doing silly things but now that we know it was the early stages of the disease, I feel so guilty that I was getting so upset with him.”

“Once we left the appointment in which my husband was diagnosed, I googled Lewy body on my phone and we both just wept. It has a shorter life expectancy than Alzheimer’s by 7 years.”

“You often get so caught up in the day-to-day of caring for the person with dementia that you don’t take time for yourself until it is too late.”

As a result of these stories, we created several resources:

• A localised dementia directory, with over 4,000 copies distributed

• An online directory that had 954 views from 507 users last financial year

• GP resource packs

• HealthPathways pages

We continue to raise awareness through community events, the distribution of Dementia Guides and ‘Family and friends matter’ booklets, and the facilitation of Last Days workshops.