Caring for a parent or loved one with dementia

A family member caring for a parent with Dementia.

As of 2023, it was estimated that 411,100 Australians live with dementia, with approximately 70% of cases living in the community, and not in residential aged care. According to 2022 statistics provided by Dementia Australia, an estimated 1.6 million people in Australia are involved in the care of someone living with dementia.

For those helping a loved one with dementia, much of your concern or fear may come from not knowing what’s likely to happen in the future.

What is dementia?

Dementia is not a specific disease. It’s a collection of symptoms caused by disorders that affect the brain, resulting in difficulties around memory, coordination, mood, behaviour, language and reasoning. It causes a gradual loss of cognitive functioning which, in time, impacts a person’s day-to-day life and activities. The most common cause of dementia is Alzheimer’s disease. Dementia diagnosis is more common after the age of 65.

Find support through Mable

Many of Mable’s community of Independent Support Workers are experienced in dementia care. They may be able to provide social, domestic and personal assistance for those living with dementia and their families.

“Every person living with dementia is different and every family situation is different,” says Debbie, who provides dementia care services via the Mable platform. “We are all individuals, with our own unique likes, dislikes, feelings and experiences. Maintaining a sense of self and identity can help the person living with dementia to feel more confident and reassured. For some, this can mean completing the daily activities they are used to or following the same routines.”

Familiar surroundings and routines are reassuring to people living with dementia, meaning, generally, they are much happier living in their own home, although that’s not always possible for everyone.

Warning signs of dementia

Although there are common symptoms of dementia, each individual can be affected in different ways. Depending on the type of dementia and its progression, symptoms can include:

  • Memory loss, especially around more recent events. In the early stages of dementia, the person may misplace objects or forget what they were planning to do
  • Difficulty finding their way around, especially in new or unfamiliar surroundings
  • Problems finding the correct words or understanding what others are saying to them
  • Poor concentration Problems learning new ideas or skills
  • Difficulties with thinking, such as having trouble using logic during a discussion
  • Problems in perception and judging distance, for example, missing the edge of a chair when attempting to sit down
  • Changes to physical abilities, such as difficulties coordinating movement during domestic chores
  • Psychological changes, for example, becoming irritable, saying or doing inappropriate things or becoming suspicious or aggressive.

How to support someone with early onset dementia

If someone in your family is exhibiting early signs of dementia, now is the time to learn more and start thinking about – and planning for – the future.

Spark a comfortable conversation

Dementia Australia CEO Maree McCabe revealed that “more than 60 per cent [of Australians] said they didn’t know what to say to someone with dementia, while more than 50 per cent said they were worried they wouldn’t be understood, that they would say the wrong thing or that they might hurt the feelings of a person living with dementia”.

You can begin to communicate with the person by remaining calm and patient during conversation, keeping sentences short and simple, and allowing time for them to understand what you’ve said.

Encourage mental and physical activity

It’s helpful to encourage activities that can directly engage residual skills, help stimulate the mind and promote self-esteem. This can be done by understanding their interests and allowing them to choose activities they would like to take up and are likely to benefit from, such as visiting a local garden or a farm.

Keep communication open between family and support workers

For people living with dementia who don’t have family nearby, it’s critical that a support worker keeps family members up to date on their condition.

Create a community network

According to McCabe of Dementia Australia, “dementia can be one of the most profoundly isolating conditions, despite the fact it is impacting so many people”. Friends and neighbours are generally keen to help. Reach out to them and others, including local community centres, to build a support network that can step up when you may be unavailable.

Take time to research

Dementia is a multifaceted disease and the signs of dementia are extremely diverse. If you’re supporting someone who is experiencing a gradual decline in physical and mental capabilities as a result of dementia, you can find out more on the Dementia Australia website about how to cope with common behaviours such as aggression, agitation, anxiety, depression and disinhibition.

Adapt your methods of personal care

Dementia can come with challenging physical effects that can inhibit a person’s ability to carry out personal tasks such as eating, maintaining good hygiene, sleeping, and managing incontinence. Find out more about personal care for people with dementia.

Optimise the person’s home environment

To ensure the person with dementia can live independently and safely, you may wish to review their home environment. There are many potential challenges in the immediate home and community environment for people living with dementia and it is important to know what they might be and how to best deal with them.

Remember to care for yourself

Caring for a person with dementia can be challenging. Remember to look after yourself. Try to organise a family and friend schedule to look after your loved one or find a local Independent Support Worker through Mable to get the tailored support you need.

How to communicate with people with dementia

In the early stages of dementia, a person may struggle to find the right words or mix up the order of words while speaking. As their dementia progresses, they may lose track of what they were saying mid-sentence or forget your name and the names of others close to them. They can also ask the same question again and again. This can be distressing for carers, family and friends.

  • Use simple, short sentences
  • Allow them time to understand what you say
  • Where appropriate, use physical communication to convey affection
  • Avoid talking in noisy/busy environments to help them focus.

To know more about how to best communicate with people living with dementia, visit the Better Health website.

Arranging for in-home care

As dementia progresses, the person may not have insight into their own care needs and may be resistant to outside help. Therefore, dementia support might be accepted more readily if it’s introduced in the earlier stages of dementia.

In-home support services can help with the personal care, for example, getting the person up in the morning, helping them to shower and dressing, and then supporting them to get to bed at night. Housework and shopping assistance can also be provided. The number and frequency of visits will depend on the individual’s needs.

Mable’s community of independent support workers offer social and domestic assistance, as well as personal care assistance. Importantly, because they’re independent, they may be able to commit to a long-term support relationship so that you can all have confidence in continuity of care.

If your loved one is eligible for a Home Care Package, you can choose to self-manage and book a support worker through Mable. Sign up for free and find support workers who undergo rigorous onboarding processes including police checks, references and qualifications.