Supporting Without Suffocating: Our Step-by-Step Guide to Dementia Care

Have you ever felt the confusion that comes from not knowing why you walked into a room? What about the confusion that comes from trying to stand up after a while of lying or sitting down, but your body fails to respond? In both cases, your brain goes before you, but your body takes a while to respond.

If you’ve ever experienced these situations before, then you can relate, even if just a little bit, to what people living with dementia have to deal with every waking moment. And to think that these little discomforts and bouts of confusion are worse than those brief moments you experience.

The sentences above read like a call to arms, don’t they? If they do, then you’re on the right track. But be careful, lest you become overbearing and controlling.

To aid you in not becoming overbearing and controlling, we’ve prepared this guide. Whether you’re the family carer, a professional, or just someone curious about this condition, this guide is for you.

And one day, it may save your life.

What is Dementia?

Dementia is not a specific disease; it is a term which is used to describe a group of related symptoms which interfere with a person's daily life as a result of some damage to the brain. Some of these symptoms affect the person's memory, personality, behaviour, reasoning and their body movement.

It is also a progressive condition, i.e. all the symptoms don't occur at once but worsen over time. The signs at the beginning may be as subtle as forgetting recent events once in a while, but it becomes more vivid as the disease advances to the extent that one may find it difficult to put words together.

What are the causes of dementia?

Most people believe that dementia is caused by ageing. The fact that most dementia cases have been recorded in patients over 65 gives some credence to these beliefs. It will interest you – if you fall into the category of people who believe this – that dementia and age are not related in any way.

You see, when the brain gets stressed by some ailments, some nerve cells can get fried. Dementia is the result of these nerve cells not working when the brain needs them to.

The most common type is Alzheimer's disease. This is a brain condition that slowly damages one's memory, thinking, learning and organising skills. It accounts for 60–80% of cases.

Other types are:

• Vascular dementia: If your loved one suffers a stroke, or they hit their head so hard that some blood vessels in their brain rupture, vascular dementia could be around the corner.
• Dementia with Lewy bodies: When the brain gets an abnormal deposit of proteins because of bad choices, this type of dementia is around the corner.
• Frontotemporal dementia: This type of dementia is exactly why the assumption that dementia and age are related died a natural death in medicine and science. In essence, this is young people’s dementia, and it chips away at their behaviour, personality, and communication (i.e. their language).

This is why you don’t just go looking for dementia treatments. Learning about what exactly you’re dealing with is the first step to providing great care.

Each type shows slightly different symptoms, but people often believe that once the doctor says it is dementia, that's all. They don't bother asking about the type or make further enquiries about the symptoms. They only want to know how it can be cured, which is actually a valid thought to have and a question to have. Knowing about the type helps to get an accurate diagnosis for effective care and management, however.

Common warning signs of dementia 

Just like how everyone experiences stress differently, the signs of dementia also differ from one individual to another. Some early symptoms are quite common, though, including:

• Memory loss: A key feature of early-stage dementia. They become clueless when names and numbers come up, or where they keep stuff.
• Loss of sense of direction, whether at home or in new locations..
• Having problems finding the correct words to express themselves, or understanding what others are saying to them.
• Poor concentration.
• Having problems learning new ideas or skills.
• Having difficulties with thinking, such as struggling to use logic during a discussion.
• Problems in perception and judging distance, for example, missing the edge of a chair when attempting to sit down.
• Coordination problems: Being unable to tell right from left, or to even turn on the television – a task they’ve done a billion times prior.
• Psychological changes like changes to temperament, emotional instability, and suddenly developing a terrible sense of judgment.

And no, there is no cure for dementia, unfortunately. Not yet, at least. But if you know what you’re dealing with and can identify the early warning signs easily, you can make managing it less stressful.

How to support someone with early-onset Dementia

Dementia is a life-limiting condition and has a lot of impact on one's life and family. If someone in your family is exhibiting early signs of dementia or has been diagnosed with dementia, this is the time that they need your support and love the most.

We are not just talking about providing medical treatment or visiting them once in a while. These are good. What we actually mean is that you have to be patient, creative, empathetic and willing to adjust your expectations and routines.

Here’s how to help someone diagnosed with dementia live with connection and purpose:

See things from their perspective:

They were an actual person with a life before dementia. You never had the same experiences, even if you were in the same circles all the time. Dementia only robbed them of their ability to do things as they normally would, leading to the confusion that they show and the overwhelming feelings that emanate from them.

How can you support them?

1. Be patient and calm during difficult moments.
2. Reassure them more often.
3. Respect and never nag them.

Probably the most important tip here is to watch out for yourself, for you cannot pour from an empty cup. Find people who relate, like a carer support group or just friends and family who love and can pick up the slack for you.

Keep conversations simple and comforting:

A study from Dementia Australia by CEO Maree McCabe revealed that “more than 60% of Australians hesitates to talk to someone with dementia because they “don’t know what to say”  while more than 50% said that “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.

Here are a few tips on how to communicate:

1. Try to be simple; don't use difficult words but short and clear sentences.
2. Be patient with them; ask one question at a time and give them time to respond.
3. Always maintain eye contact when communicating with them and reflect positive body language.
4. Avoid talking in noisy/busy environments to help them focus.

Engage their mind and body

There is an adage which says that “an idle man's mind is the devil’s workshop”. When you have a loved one whose life has been made tougher by this condition, help them tap into their adventurous side once again by finding things they can do. Let them explore within safe zones that you create.

The easiest way to do this is to find something they used to love doing and make it much simpler for them to do it. Muscle memory can work wonders in such scenarios.

You can do things like:

• Walking in parks and community gardens
• Doing arts and crafts
• Play and listen to their favourite music together.
• Look through old photo albums and shared memories.
• Folding of laundry (the repetitive motion can be soothing).

Keep communication open between family and support workers

This is an important aspect that must be maintained by a support worker who is staying or living with a person diagnosed with dementia who doesn't have family nearby. Always keep family members up to date about the condition of the person because it helps to keep them in the picture and enables them to walk and work with you throughout the journey.

Create a community network

According to McCabe of Dementia Australia, “Dementia can be one of the most profoundly isolating conditions, despite the fact that it is impacting so many people”. But, you don’t have to do it alone; reach out to friends, families and others, including local community centres, to build a community network that can step up when you may be unavailable.

Take time to research

This can't be overemphasised! Just as we can’t cook or sew without learning about it, the same goes for caring for a person diagnosed with dementia. Dementia is a multifaceted disease, i.e. it consists of various forms whose signs manifest in different ways.

When they become aggressive, distant, anxious, or agitated, what are you going to do when you don’t know how to handle them? It all begins with knowing what exactly is the driving force behind those emotions. You cannot support a person with dementia without doing research on the condition first. You’re only setting yourself up for unnecessary stress.

Provide them personal care with dignity:

As dementia advances, personal care can become a challenge. Basic hygiene (brushing of teeth, washing hands after using the bathroom, and so on), eating and even dressing can become tedious. This can affect a person with dementia to the point where low self-esteem and self-doubt become their roommates.

What helps?

• Maintain their routine from wake-up time to meal time and the type of food they eat.
• Choose clothes that are easy to wear.
• Use visual or verbal cues (e.g., hand them their toothbrush).
• Don't overcrowd; respect their privacy and choices.
• Introduce any new carer or support worker gradually.

Services like Support Network offer experienced, independent caregivers who provide tailored personal care in the comfort of the person’s home, ensuring support and trust.

Optimise their home for safety and comfort

In most cases, people diagnosed with Dementia usually feel very safe at home. But, there could also be potential risks at home due to difficulty in movement and with remembrance. This can be resolved with familiar routines and patterns.

Here’s how to improve the home environment:

• Remove things that can make them trip or fall (like rugs and cords).
• Attach labels to the doors or cupboards with words or pictures.
• Ensure good lighting of the house.
• Install grab bars in the bathroom.
• Use clocks with large numbers and calendars for easy understanding.
• Create a quiet, calm atmosphere.

Remember to care for yourself:

How many times have we mentioned that dementia care is exhausting? Not enough, really, because it can never be overemphasised. This is why, along with the tips, strategies and guidelines that we share in our guides, we will always have a section for you, the carer.

You’re human. When things get tough, it’s normal for you to feel different feelings. But you can’t let them get to you; otherwise, you’ll lose focus on the end goal of the labour of love you’ve undertaken when you decided to take care of someone with dementia.

Make sure to:

• Join a carers’ support group around you.
• Take breaks to reflect and recharge. Contact someone to provide respite care as you do this.
• See a therapist to help you sort out your feelings
• Co-opt family into caregiving
• Reach out to Support Network for help

How to communicate with people with dementia

You see, dementia is tough to deal with. Not just for the sufferer, but for the carers, family members, and community around them. Everything becomes more tedious, such that even a hand extended for a handshake can cause a meltdown. Your smile can be threatening, and your laugh can sound like the shriek of a banshee. It is tough.

Communication, in cases like this, is almost as difficult as rocket science. But just like there are experts in rocket science, you can become a “dementia whisperer”. You only need the following tools in your communication arsenal:

Learning: Always stay updated on what the doctors say, what the researchers say, and most importantly, what the person you’re caring for IS NOT saying.

Adaptation: Always be ready to switch up when necessary. Dementia reverses adults into toddlers. If you have to use child speak, then do it. But only that one time, so that it doesn’t become commonplace. The goal is to keep them grounded in reality as much as possible, despite their brain's best efforts to take them elsewhere.

Empathy: Walk in their shoes and see from their perspective. Then you can be able to keep them grounded.

Courage: Dispel the fear of making them sad. If you carry on that way, you’ll be stuck and achieve nothing.

Find support through Support Network

A tree doesn't make a forest. What do we mean? We mean that you can't do it alone. In fact, nobody can do it alone because we are all different individuals, and how we react to situations and circumstances differs.

People living with dementia are also not excluded; the way they react to this reality also varies greatly. That is why it is important that you help them to maintain a sense of self and identity; this can be as simple as completing the daily activities they are used to or following the same routines they are used to, because it can help them to be more confident and reassured.

Many of Support Network’s community workers are experienced in dementia care and may be able to provide social, domestic, and personal assistance for those living with dementia and their families. Most importantly, because they’re independent, they may be able to commit to a long-term support relationship so that you can have confidence in the continuity of care.

Learn more about in-home aged care support. You can find this on the Support Network.

If your loved one is eligible for a Home Care Package, you can choose to self-manage and book a support worker through Support Network.