Support for family and carers
Understanding dementia
Dementia is a condition that generally affects older people. However, dementia is not a natural part of ageing. We can all experience forgetfulness and occasional memory loss but if you are worried and it starts to affect your daily life you should make an appointment to see your GP. Dementia is caused by deterioration in brain function. This guide aims to help you understand more about dementia, what it is, how it is caused and how to help someone who has dementia.
What is dementia?
Dementia is the term used to describe a group of conditions which affect the brain (known as neurological disorders)1. There are many different subtypes of dementia, but all of them are progressive. This means that the affected person's brain functions will continue to change over time.
Some of the main symptoms of dementia are memory loss, mood changes, using words incorrectly or sometimes the inability to think quickly or express what they want to say, as well as struggling to complete daily tasks. Each person with dementia will be affected in different ways.
How many people are affected by dementia?
In 2022, Dementia Australia estimates 487,500 Australians are living with dementia and almost 1.6 million Australians involved in the care of someone with dementia.
Dementia is the second leading cause of death of Australians. 2
Different types of dementia
Overall, there are over 100 subtypes of dementia that someone could be diagnosed with. The most common types, including their causes and symptoms, are listed below.
It is important to note that symptoms vary widely for each person affected by dementia.
Alzheimer's Disease
This is the most common form of dementia and it mainly affects people over 65. Up to 1 in 10 Australians over 65 years of age are affected by Alzheimer’s disease.3
Causes: Alzheimer’s disease is thought to be caused by a build-up of two types of proteins around the brain cells. These proteins are called tau, which forms ‘tangles’ within the brain cells, and amyloid, which forms plaques on the brain cells. Scientists currently do not know why this abnormal protein build-up occurs. After these proteins have built up, neurotransmitters which send signals around the brain decrease and shrinkage occurs in different parts of the brain that affect memory, vision and more.4
Symptoms: There are a variety of symptoms associated with Alzheimer’s disease which increase as someone enters the later stages of the disease.5
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Early stages – memory lapses and forgetfulness, mood changes including agitation and anxiety. The affected person is also likely to have periods of confusion.
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Middle stage – memory problems worsen, and confusion increases. They may experience speech problems, obsessive behaviour, delusions, frequent changes in mood and hallucinations. At this stage, the affected person might need extra support with day-to-day tasks such as maintaining hygiene, eating and getting ready in the morning.
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Later stages – the above symptoms will progress, and more physical symptoms will emerge. The affected person may have problems with mobility, eating, speaking and may develop urinary or bowel incontinence, a type of incontinence called ‘functional incontinence’. At this stage, they might need full time assistance from a carer. Learn about the different types of incontinence here.
Vascular Dementia
This is the 2nd most common dementia diagnoses for people over 65. Symptoms are dependent on which part of the brain is affected.
Causes: Vascular dementia is a form of dementia caused by circulatory problems in the brain. When blood stops reaching brain cells, they will eventually die. Conditions such as transient ischaemic attacks (TIA), stroke or brain haemorrhage could lead to vascular dementia.6
Symptoms: As with other forms of dementia, symptoms will usually worsen over time. If the dementia is stroke-related, it may progress in a ‘stepped’ way, with periods of stability before stages of rapid decline in cognitive ability. Someone with vascular dementia might experience the following:
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Issues with memory
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Issues with organisation and decision making
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Issues with speech
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Mood changes such as depression and anxiety (this is common in early stages as the affected person is usually aware of their condition and the difficulties cause by it)
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Behaviour that is out of character
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Lack of awareness
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Problems with mobility in later stages
Frontotemporal Dementia
Frontotemporal dementia is the 2nd most common form of dementia for people under the age of 65.
Causes: Frontotemporal dementia is caused by the death of nerve cells and pathways in the brain’s temporal and frontal lobes.7
Symptoms: This is a progressive form of dementia which affects behaviour, personality, and language. Symptoms develop relatively slowly but worsen as time goes on. People with frontotemporal dementia may experience the following:
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Changes to behaviour (including lack of motivation and impulsive or inappropriate behaviour)
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Changes to personality (they may start to appear selfish or uncaring)
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Problems with language and speech clarity
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Problems with cognitive abilities like organisation and planning
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Repetitive behaviours
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Compulsive behaviours (they may over-eat, smoke, or overindulge – for example, drink more alcohol than they usually would)
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Problems with memory in later stages
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Physical changes in later stages. The affected person may find it difficult to look after themselves.
Frontotemporal Dementia can sometimes be confused with other conditions such as depression, stress, anxiety and obsessive-compulsive disorder.
Parkinson's Disease
Parkinson’s disease is most common in people over 50, with the disease affecting 1 in 308 Australians - more than 100,000 people.8
Causes: Parkinson’s disease is a progressive neurological condition characterised by a loss of nerve cells in the brain, with the damage usually occurring over several years. Possible causes of Parkinson’s disease include genetic, environmental and chemical factors.9
Symptoms: There are a range of physical and psychological symptoms associated with Parkinson’s disease, with the main three symptoms being:
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Shaking or tremors
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Stiffness and inflexible muscles
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Increasingly slow movement
Other symptoms include:
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Problems with balance
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Pain
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Depression
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Insomnia
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Memory loss
Other common dementia diagnoses include the following:
Young onset dementia – also known as ‘working age’ or ‘early onset’ dementia, this is where dementia is diagnosed under the age of 65.
Lewy body dementia – accounts for 15% of diagnoses. In its early stages, Lewy body dementia can present as Alzheimer’s and is often misdiagnosed as such. It largely affects motor control and movement.
Huntington’s disease – a genetic chromosomal disorder that is usually diagnosed for people aged 30-50 years old. One of the main characteristics is a person’s motor functions deteriorating, affecting their ability to move.
Mixed dementia – the term used when someone is diagnosed with more than one type of dementia. This is the case for 1 in 10 dementia diagnoses.
Dementia treatments
Dementia is a condition which has no cure, making it difficult for the person affected and their family and friends to come to terms with the diagnosis.
However, there are therapies, medicines and other treatments which can help to alleviate the symptoms of dementia. Upon diagnosis, doctors will work with the person and their family/carers to find the most suitable care and treatment plan.
Medicines
Medicines available for the treatment of dementia are able to temporarily reduce symptoms. Most available medicines have been developed to treat Alzheimer’s disease.
Other medicines may be prescribed to help with challenging behaviours and conditions related to dementia like heart problems, stroke and high blood pressure.
Therapy
A large proportion of treating dementia does not involve medication. Therapeutic treatments can be very effective in helping patients to cope with their condition and are key to them leading a good quality of life as the condition progresses. Available therapies include10:
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Talking therapy
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CBT (Cognitive Behavioural Therapy)
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Cognitive rehabilitation
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‘Life story’ therapy and reminiscence work
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Art, music & singing therapies
How to look after someone with dementia
Becoming a carer to someone with a dementia diagnosis can be challenging, especially if they are a family member or friend. If you have decided you are the best person suited to care for them, it would help if you knew what to expect in regard to their increasing care needs, physical changes and behavioural changes. As time goes on, someone with dementia might need help with the following11:
Everyday tasks – shopping, tidying, gardening, getting dressed. These are tasks which you should involve them with if possible.
Eating & drinking – as their condition progresses, eating and drinking might become difficult. They may not feel thirsty so won’t drink enough to stay hydrated or they could forget to eat. Therefore, you may need to help them to manage their eating and drinking by assisting with shopping, helping to prepare food, and making sure they are eating a healthy diet.
Hygiene – personal hygiene can be a cause of anxiety for a person with dementia. Be calm and sensitive when approaching the subject of washing and put them at ease about being helped during such a personal activity. Consider moist cleansing tissues for everyday cleansing and wash gloves when the person is not able to shower or bathe frequently or with ease.
Incontinence management & using the toilet –Bowel incontinence and urinary incontinence are common in middle and late stages of dementia, alongside other problems with using the toilet. This can be upsetting for the person, so it is important to remember that it is not their fault and help them feel at ease with you helping them during their toileting routine.12
MoliCare’s quality continence products can be used as part of a full incontinence care routine – use the MoliCare product finder by clicking here to find the right incontinence products for you or your loved ones.
Know when to seek further help – As a carer, it is vital to know when you need to seek help with managing care needs. Don’t let yourself become overwhelmed and know where to go for advice. There are several organisations that you can turn to:
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National Dementia Helpline – 1800 100 500
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Dementia Behaviour Management Advisory Service – 1800 699 799
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Parkinson’s Australia Info Line – 1800 644 189
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HealthDirect – 1800 022 222
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Carers Gateway – 1800 422 737
Medical Advice Disclaimer / DISCLAIMER: This website does not provide medical advice.
The information, including but not limited to, text, graphics, images, and other material contained on this website are for informational purposes only. No material on this site is intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read on this website.
References
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https://www.dementiauk.org/understanding-dementia/what-is-dementia/
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https://www.healthdirect.gov.au/alzheimers-disease
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https://www.nhs.uk/conditions/alzheimers-disease/causes/
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https://www.nhs.uk/conditions/alzheimers-disease/symptoms/
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https://www.alzheimers.org.uk/about-dementia/types-dementia/vascular-dementia
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https://www.nhs.uk/conditions/frontotemporal-dementia/symptoms/
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https://www.alzheimers.org.uk/about-dementia/types-dementia/treatments-dementia
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https://www.carersaustralia.com.au/carers-of-older-people/caring-for-someone-with-dementia/
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https://www.alzheimers.org.uk/get-support/daily-living/toilet-problems-continence