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Your guide to living with dementia.

An older woman looking out the window smiling with cup of water in hand

As of 2024, according to Dementia Australia, it’s estimated there are more than 420,000 Australians living with dementia and that number is expected to increase to almost 1.1 million by 2058.

An extremely broad set of symptoms commonly affecting people over the age of 65, dementia is hard to diagnose and can present differently in different people. Understanding the type of dementia and the early warning signs can go a long way in establishing the right kind of support for the person with dementia.

The first step is to get a professional opinion to confirm the diagnosis, followed by creation of a plan for their future, both professional and personal.

What is dementia?

Dementia is not a single disease, but a broad set of symptoms that affects the cognitive abilities of a person, typically over the age of 65.The symptoms vary depending on the type of dementia that someone has.

Broadly speaking, there are four common types of dementia — Alzheimer’s Disease, Lewy Body Disease, Vascular Dementia and Frontotemporal Dementia.

Caused by damage to brain cells, typically through degeneration caused by ageing, dementia interferes with the cells’ ability to communicate with each other. As a result, it can impact the person’s capacity to perform everyday tasks, work and socialise.

What are the warning signs of dementia?

Dementia can be difficult to identify and diagnose. Family members may notice gradual changes in their loved one’s behaviour. Early warning signs of dementia may not be immediately obvious but look out for anything that appears out of the ordinary.

The most common signs include often forgetting appointments completely, difficulty forming sentences or answering questions, inability to find their way home in a familiar neighbourhood, rapid mood changes for no clear reason, withdrawal from social activities, among others. People living with dementia often become easily disoriented, may be unsure about what day or year it is, and confuse daytime with nighttime. Dementia impacts physical movement like balance and mobility.

How is dementia diagnosed?

Diagnosing dementia involves a multi-faceted approach and can only be conducted by a qualified medical practitioner.

A GP will often start with a series of medical and psychological tests. Blood tests may be ordered to check for evidence of other medical issues like poor liver function, abnormal sugar levels, autoimmune diseases and nutritional deficiencies. The patient may also be sent for brain imaging tests like an MRI or a CT scan to rule out other conditions such as brain tumours.

One of the most important elements in dementia diagnosis is to provide the doctor with plenty of supporting information about the patient’s behaviours, communication and physical mobility changes. This helps to formulate a broader picture of the patient’s overall condition.

Dementia: Getting your loved one to visit the doctor

Being faced with the possibility of a dementia diagnosis, the person might feel confronted and frightened by the suggestion of going to the doctor. If you feel a loved one needs to see a doctor, suggest a simple check-up for a symptom that the person is willing to accept.

Some dementia warning signs can be associated with other conditions. For instance, a urinary tract infection can cause mental confusion in the elderly. Beware of confusing symptoms caused by other conditions — such as strokes or nutritional deficiencies — that cause dementia-like symptoms. Only your doctor can offer a preliminary diagnosis or refer the person to an appropriate medical professional.

Keep a list of any warning signs you notice so you can raise these with the doctor, especially any changes that have occurred since your loved one’s last appointment.

Caring for a parent or loved one with dementia

Dementia care is as much about the emotional aspect as the physical. Aim to be compassionate and patient and try to anticipate their needs since they may not be able to communicate them effectively.

You will need to keep track of your loved one’s behavioural transitions. For instance, if the person was accustomed to driving everywhere they needed to go, you will have to communicate with them as to why they shouldn’t anymore, and put supports in place that allow them to maintain independence. Similarly, if they are finding it challenging to carry out everyday tasks, such as preparing meals for themselves and simply don’t eat as a result, you can find support that will assist them with this activity.

Learn more about how to care for a parent or loved one living with dementia.

Many of Mable’s community of Independent Support Workers are experienced in dementia care. You can book a support worker to help yourself or a loved one in many ways, whether it’s an everyday task such as gardening or more complicated ones, such as driving to appointments. Find out how support workers on Mable can help you with dementia care.

Other ways to care for a loved one with dementia include keeping the channels of communication open, encouraging physical and mental activity, creating a community network (friends, neighbours, local community centres), research and learn more about dementia, optimise your home environment so they navigate it safely and easily, and last but not least, remember to care for yourself.

Making a home safer for someone with dementia

Safety is an important issue for someone with dementia. They may require assistance with tasks they could previously handle on their own, such as shaving with a razor, opening a can of food or using the stove or microwave.

However, a dementia diagnosis doesn’t necessarily mean that they should be restricted from being independent — it just means doing things differently and enabling them to continue living with dignity at home. And if you’re wondering whether home is the best place for someone living with dementia, the answer is yes. Familiarity and comfort can be extremely beneficial for a person living with dementia and so, it can help to tweak things around your house to ensure they are comfortable as well as safe. Refer to a checklist to optimise your home environment when you or a loved one is living with dementia.

You can also organise a home visit by an occupational therapist who can evaluate the home and the person’s capabilities.

Managing employment if you live with dementia

A person’s dementia diagnosis might impact their work. Their colleagues and employers may have noticed changes in their ability to meet work obligations, communicate effectively, achieve deadlines and manage their time.

While it’s their personal choice whether they want to inform their employer or not, it can be helpful to communicate with the employer to set expectations at work as well as making changes to best support the employee. The employer may be able to accommodate the person through reduced workload, altered responsibilities and shorter working hours.

A person living with dementia may also be eligible to receive supports and services through My Aged Care. If they are eligible for a Home Care Package, they can find the support services they need through Mable by using their home care package funding.

They can also access the Disability Support Pension via Centrelink. Know more about managing employment while living with dementia.

Dementia and planning for the future

Receiving a dementia diagnosis can be a daunting experience. Although it may be difficult to comprehend what a future with dementia looks like, it can be comforting to plan dementia care in advance and put measures in place around health, care, finances and legal matters. Aim to have these conversations before a dementia diagnosis, but if they haven’t occurred, then they should be introduced as early as possible so that the individual can be empowered to make their own decisions.

  • Health planning: As the condition progresses, the individual’s health needs will change and arrangements can be put in place according to their wishes. An advanced health directive allows the person to nominate their preferred decisions around emergency treatment. They can include DNR (Do Not Resuscitate) orders, DNI (Do Not Intubate) orders and other directives around life-sustaining care. The person can also include their wishes around organ and tissue donation.
  • Care planning: In-home dementia support services can include help around the home, support with toileting, showering and grooming, occupational therapy to make the home safer, transport to medical appointments, social engagement and more. A self-managed Home Care Package can be used on the Mable platform to find and book independent support workers to come into the home and provide these services. If the person with dementia is not capable of administering their own account, a nominated family member can administer it for them.
  • Longer term care planning: The day may come when it is no longer safe or manageable for the person with dementia to remain at home. Planning for the future involves exploring residential aged care options in advance, to be fully informed and ready for when the day does come.
  • End of life planning: Although a challenging discussion, it’s important to include your loved one in end of life planning, to discuss what they would want for themselves and to ensure they achieve a good quality of life.
  • Financial planning – An enduring power of attorney is a legal document that assigns a nominated person the right to make financial decisions for the person with dementia when they are no longer cognitively able to make them themselves.
  • Legal matters – Ensuring the individual’s Will is up to date is an important part of planning for the future for someone with dementia. A loved one can be nominated by the person to make decisions on their behalf when they become cognitively incapacitated.
    Using your Home Care Package to find dementia support

Using your Home Care Package to find dementia support

You can access in-home dementia support services at any time and Mable is the ideal platform for you to connect with Independent Support Workers who have dementia experience. If no Home Care Package is in place, you can still pay privately for services through Mable.

Once approved for a Home Care Package, the package funding can be used to pay for the support services. The individual’s needs will be assessed and a particular package level will apply which denotes the amount of funding provided. As the person’s needs progress, the package level can be reviewed so that a higher level of funding is available.

Some of the services that may be needed include assistance with the following:

• Meals and nutrition
• Medication
• Transport to and from appointments
• Personal care such as hygiene and toileting
• Continence care
• Domestic tasks
• Social engagement
• Nursing care
• Mobility equipment and aids
• Home safety evaluation and modification
• Podiatry, physiotherapy and other allied health services
• Nursing care
• Respite for family carers

Dementia-friendly in-home support makes an enormous difference to the wellbeing of the individual and their family.