Working within the care sector requires a multifaceted approach to looking after people. There are some diagnoses, for example, that we can view as more rare than others or even attached to certain groups of people such as the elderly.
But the more we learn and research certain disabilities, the more we realise who they can affect. Dementia is one disability where our minds can relate to someone older, past 60, say. But it is not restricted to those over a certain age and with so many variants of the disability, it’s important we – as carers – have an updated viewpoint of the disability.
To find out and learn more about how dementia affects people of many age groups, and learn of the different types of dementia and how best to support those with the diagnosis (and those around the person), we reached out to Dementia Australia.
Dementia Australia is the national organisation that supports those living with the brain condition, as well as those around them. By advocating to the government and within communities for positive changes; supporting vital research and health workers to provide essential and groundbreaking care; and by providing trusted information, support services and education, Dementia Australia is able to pave the way to a future where dementia is not only truly understood, but hopefully, prevented.
Dr Kaele Stokes, Executive Director Services, Advocacy and Research for Dementia Australia, addressed our questions, so that we can provide well-informed care to those we support with dementia.
Let’s boost our knowledge of dementia together.
First things first: what is dementia?
On Dementia Australia’s website, dementia is defined as a “brain condition.” And, they are quick to confirm that “it’s not a normal part of ageing.”
This is interesting and points to our cultural understanding of dementia. We can assume that it’s something many of us will be diagnosed with as we get into our later years. And although it is more common after the age of 65, “dementia can happen to anybody.”
Dementia isn’t something that’s widely understood and this might be because it’s not one thing, it’s actually a variety of symptoms (i.e. can present differently in one person to the next) caused by disorders which affect the brain.
So, it’s not one specific disease. “It’s a broad term that covers the effects on people of a number of different medical conditions.”
A condition you might have heard of is Alzheimer’s disease (the most common cause of dementia), but there are many others.
Such as:
- Vascular dementia (restricted blood flow to the brain)
- Lewy body dementias (which describes dementia with Lewy bodies and Parkinson’s disease dementia)
- Younger onset dementia (relating to dementia that affects people under the age of 65)
- Frontotemporal dementia (dementia that affects the brain’s frontal and temporal lobes which can present differing symptoms from, say, vascular dementia)
- Alcohol-related brain injury (ABRI)
- HIV-associated dementia
- Chronic traumatic encephalopathy (CTE) dementia (caused by repeated knocks to the head)
Dr Kaele Stokes advised us that, “There are over 100 forms of dementia, with Alzheimer’s disease being the most common and well known.” So, really, it’s such a multifaceted and varied term given to a whole list of forms and symptoms.
Disability and dementia:
As we are a care organisation for those with a disability, it is important to understand how many medical conditions can affect someone to best improve our quality of care. It is also important to understand how a new diagnosis can affect someone with an existing disability and/or medical condition.
Now, dementia is considered a disability in its own right (as well as a disease) as it impacts a person’s physical, emotional and cognitive function which can then limit someone’s ability to perform everyday tasks. Things such as memory loss, behavioural and emotional changes and difficulty with communication which stem from dementia can make life rather challenging.
However, as it is more common for those above the age of 65 to be diagnosed with it, your funding of support will likely come from My Aged Care rather than the NDIS. But if you’re younger with this diagnosis, then it’s important you save all of your medical documentation and start your NDIS application.
Alzheimer’s disease:
With Alzheimer’s disease, your NDIS funding could be used to: “[Talk] to a counsellor or psychologist can also help people living with Alzheimer’s disease manage the changes in their behaviour and mood. There are also programs and services that can help people understand their diagnosis and plan for the future.”
“Occupational therapy can [also] help people living with Alzheimer’s disease to function well in their home,” as stated by Dr Kaele Stokes.
Down syndrome:
There’s also a link between Down syndrome and the diagnosis of Alzheimer’s disease, as presented on Dementia Australia’s website.
There is a higher chance of developing Alzheimer’s disease if you have Down syndrome (genetic condition where a person is born with an extra chromosome). But this doesn’t make it an easier to diagnose as the symptoms related to Alzheimer’s might be considered part of Down syndrome.
This just shows how everything can be interlinked and made much more complex and nuanced.
How is dementia diagnosed? Especially when someone has a diagnosis of a mental disorder already?
This is something we were truly interested to ask the team at Dementia Australia. Especially as someone in our care, who has a diagnosis of schizophrenia (a disorder that affects a person’s ability to feel, think and behave clearly) has now been diagnosed with frontotemporal dementia. And, as above with Down syndrome, some symptoms (of both schizophrenia and frontotemporal dementia) might fit into the intersection of a Venn diagram to depict this person’s impairments or challenges with everyday tasks.
Speaking to Dr Kaele Stokes at Dementia Australia, she informed us that, “There isn’t one single test that can determine if someone does or doesn’t have dementia.
Instead, doctors will do several different kinds of tests. The results of these tests will help them rule out some conditions, and get closer to working out what’s causing the changes.
That process can take time. Even after testing, your doctor may tell you it’s ‘possible’ or ‘probable’ that the individual has one or more conditions.” This means it can be a rather frustrating journey into the world of dementia, especially if someone already has a disability or medical diagnosis that affects their brain.
Frontotemporal dementia
“Frontotemporal dementia affects everyone differently. The condition is progressive, meaning symptoms may be mild at first but get worse over time.
Each type of frontotemporal dementia has its own signs and symptoms.
Symptoms of behavioural-variant frontotemporal dementia may include:
- The individual stop taking care of themselves and their personal hygiene
- Losing motivation, abandoning hobbies or avoiding social contact
- Becoming easily distracted or impulsive
- Feeling different about food, like craving sweet or unusual foods, or overeating
- Having difficulty in reasoning, judging things and planning
- Becoming less flexible, more selfish or unable to adapt to new situations
- Losing empathy and emotional warmth
- Losing inhibitions, like saying or doing things they normally wouldn’t
- Starting to do things over and over, like collecting, counting and tapping.”
Dementia isn’t something that’s cut and dry, unfortunately. It’s highly nuanced and as long as our care for an individual is adaptable and present, based on the information and history of those in our care, we can strive to provide that all-encompassing care model of support.
What services are there out there for carers of those with dementia, and those with the disease?
As well as providing up to date information and educational services to those in Australia, Dementia Australia also offers support for carers of people living with dementia to learn new ways to cope with their caring role, support wellbeing and connect with others in a similar situation.
“Dementia Australia offers free, confidential, professional counselling for individuals, families, couples and professional carers at all stages of a dementia journey.
Support groups are multi-session and delivered face-to-face, online or via telephone across Australia.
There are groups tailored to specific circumstances such as dementia type, people in rural and remote areas and other carer characteristics. All groups are facilitated by Dementia Australia’s specialists who provide additional information and support, tailored to the needs of participants.
Free and confidential, the National Dementia Helpline 1800 100 500 provides expert information, advice and support, 24 hours a day, seven days a week, 365 days a year.”
References:
https://www.dementia.org.au/about-dementia/types-dementia
https://www.dementia.org.au/about-dementia-australia
https://www.dementia.org.au/about-dementia
https://www.dementia.org.au/about-dementia/down-syndrome-and-alzheimers-disease