With almost 1.6 million people in Australia involved in the care of someone living with dementia, you’re not alone in the fight.
It may have taken you months or even years to admit that your loved one has dementia. But wading through the waves of emotions and accepting that the future may look different, is the first and most fundamental step in the care journey. Living with dementia looks a lot less scary when you can tackle it together, and fortunately, there are many ways to help you deal with difficult behaviour and communication challenges.
Here are 11 simple things to keep in mind when caring for a loved one with dementia.
1. Ask simple questions
Try to avoid asking any complex open-ended questions with multiple options, as it may cause your loved one anxiety and confusion. For example, yes or no questions such as “would you like pizza or pasta for dinner?” are much better received than “what would you like for dinner?”. When repeating a question, use the exact same wording as the first time. If they are still struggling to understand, wait a couple of minutes and rephrase the question.
Visual prompts such as images or appropriate body language can also help guide responses, especially when it comes to activities such as getting dressed.
2. Don’t argue
Always keep in mind that you should never argue or say ‘no’ to someone with dementia. Firstly, you won’t win… and secondly, it will likely upset and anger them. Cognitive loss coupled with strong desire, only causes people to be concerned with their own needs. Sadly, dementia damages a person’s ability to see both sides of an argument and as a caregiver, it’s your responsibility whether right or wrong, to admit defeat and attend to their needs.
According to Dementia Australia, when the going gets tough, distraction and avoidance can be the most useful approaches. Acknowledge if your loved one is upset and agitated, but then try to change the topic of conversation, or move onto another simple activity such as having a cup of tea or reading together.
3. Communicate with more than just words
According to the NHS (UK), your body language, tone and attitude display feelings and emotions far more effectively than words. You can simply set a positive mood through personal touch, facial expression and interacting in a respectful manner – who knows, a little hug or hand hold could go a long way.
When communicating with your loved one, speak slowly and in a reassuring tone of voice. While it’s important to use simple words and short sentences, refrain from raising your voice at any time.
4. Break everything down step-by-step
When it comes to doing activities together, it’s really important to break them down into a series of simple steps. For example, if baking a cake together, don’t move too fast or get too far ahead in the cooking process. Focus on each component individually and communicate this with your loved one – whether it’s turning on the oven or gathering ingredients.
“I’d come to the house and sometimes Frank would greet me at the front door only to forget how to walk back down the hallway. Channelling his very memorable time in the army, I’d say simple commands: ‘left, right, left, right’ – and together we’d march down the hallway.”
Jo, AnglicareSA care worker on her experience with home care client Frank.
5. Recognise difficult behaviours as expressions of unmet need
Take your loved one’s concerns seriously, not personally. View any effort to communicate distress or bursts of anger as a sign of needing urgent attention. The challenge is knowing what this ‘something’ may be, as your loved one may not have the capacity to effectively communicate their concern. You may need to look deeper to see whether the person needs reassurance about something they are unable to express verbally. While they may not be visually obvious, there’s plenty of possible reasons that could be causing distress, such as:
- feeling hot, cold;
- body pain;
- hunger, thirst;
- and even external factors such as noise and light.
6. See the person for who they’ve always been
Beware of treating someone as incompetent or as if they’re a shell of who they once were. Any sort of behaviour that rubs off as condescending or patronising will only cause harm to your relationship. Interact as if the person you know is still there. Turning to a smile, special word, memory or song may just light up their eyes.
7. Validate the person’s reality.
As dementia progresses, people’s understanding of the world and their relation to it changes. Trying to prove what may seem obvious to you will only cause frustration, anxiety, fear and anger.
Don’t be afraid to join your older loved one in their reality rather than attempting to force them back into yours or whatever you perceive is ‘right’. While you may be a husband or wife – if your loved one insists on calling you his daughter or son just go with the flow. As challenging as it is, you have fallen into the general ‘love’ category and the fine distinctions we usually make between various roles no longer apply.
“Sometimes we can’t question what they’re talking about because it’s real to them. A lot of them go back to being children – they want to go home to mum for a bit of love. Sometimes you have to play a role and act a part. The worst thing you can do is argue with somebody with dementia – they don’t know any different. Give them the love and care that they need and never say ‘no’. At the end of the day, does it matter what they think is wrong?”
Naomi – AnglicareSA residential care worker.
8. Tell a Joke
Laughter is not only therapeutic; recent studies have confirmed that telling jokes is beneficial to those with memory loss. Research from the University of New South Wales examined the effectiveness of professional humour therapists, Elder Clowns and Laughter Bosses in nursing homes – the core findings showed that agitation levels of residents decreased to the same extent as using anti-psychotic drugs, but without the same side effects. Another study conducted at the Osaka University in Japan found that the positive effects of humour can last for weeks after a therapy session.
9. Harness the sound of music
Music has the power to provoke distant memories, change moods, and provide brief moments to reconnect with loved ones. A 2015 study on the impact of musical therapy for dementia patients by the Anglia Ruskin University in Cambridge found an overall positive response, citing that it “improved participants’ dementia symptoms and general wellbeing, while also leading to a decline in occupational disruptiveness to staff.” As we learn more about our brains, music therapy will continue to actively support people to improve their health and wellbeing.
“It’s empowering to see clients living with dementia engaging and singing along to old songs – it almost brings out another person.”
Jenny, AnglicareSA aged care volunteer musician
10. Keep them active
Physical exercise is essential for maintaining adequate blood flow to the brain, and research increasingly shows that being active can slow down brain ageing. According to Dementia Australia, several studies have found that physical activity, at all stages of life, is associated with a lower risk of cognitive decline and dementia.
Exercise plays a role in improving moods, promoting a normal day-night routine and reducing stress and depression, which are commonly experienced by people with dementia. Regular aerobic exercise, such as walking for at least 30 minutes can result in greater focus, clarity, and is beneficial for cognitive health.
11. Take the time to look after yourself
Caring for a loved one with dementia can be lonely and exhausting. In order to provide the care they need, you must be prepared and in a positive space. While it’s important to educate yourself with best dementia practices, don’t forget to engage in self-care to ensure you’re in a healthy state of mind to support your loved one – whether it’s simply taking a break or designating the time to do the things you love. Build a support network around yourself and your loved one, and reach out to people that can lend a hand. Talking with colleagues, friends or family, or pursuing home care options, respite carers or joining a formal carer support group can all help.
The information above was gathered from a range of sources, including Dementia Australia, NHS (UK), Humour Foundation and AnglicareSA aged care employees.