Regardless of whether you’re a hard-working professional in the aged care industry, or a selfless family member that has taken on the responsibility to care for a loved, there is an emotional toll that can mount when caring for someone living with dementia.
Even the most caring, thoughtful, and well-intentioned dementia carer can be prone to frustration, and with that can come a level of guilt, and the feeling that you may not be suitable for the responsibility.
But in reality, the truth is that everyone is human.
The relationship between a carer and someone living with dementia is prone to many of the same frustrations experienced in our relationships with family members and spouses, and when you spend enough time with someone the chances of you pushing each other’s buttons tends to increase.
With that being said though, the relationship between someone living with dementia and a carer is unique, and one of the most overlooked aspects of this relationship is the fact that carers need to understand the emotional triggers and behaviours of themselves, just as much as those they care for.
Colin McDonnell is a Dementia Excellence Practical Lead at Scalabrini Aged Care & Residential Villages and has won multiple awards in the ‘best aged care practice’ and mental health space.
Colin spoke with HelloCare and highlighted a number of key areas of frustration for many of those caring for people living with dementia, as well as some tips on the best ways to avoid getting angry and improving your relationship with the person in your care.
Dealing with anger and aggression from anyone is an unpleasant feeling, yet dealing with these emotions for someone that you are trying to help and care for can be extremely frustrating.
A number of those caring for family members sacrifice their overall quality of life in order to take on the responsibility, which can make it easy to feel resentful and unappreciated when being subjected to angry aggressive behaviour.
According to Colin, frustration is to be expected, but part of avoiding getting angered as a carer is understanding where the other person’s aggression is coming from, and also being mindful of your own personality and identifying things you can do to alleviate tension.
“Firstly you have to know the person because that is how you identify a problem. It’s just like any relationship, you know what buttons to push and what results you get from pushing these buttons,” said Colin.
“People living with dementia have these buttons, and when you push them you will get a negative response or the so-called ‘behaviours’ that we hear about, but there’s literally no point in arguing or being aggressive yourself because it just makes things worse.”
“Changing scenery by taking the person outside or playing music that they enjoy can help, but it depends on a person’s interests. The more you know about a person, the more you will know what to avoid doing that triggers negative responses and what you can do to calm and combat that.”
“Respite in these situations is obviously the best thing, but in a situation where that isn’t an immediate option, you need to look for those small opportunities to have a chance to calm down, and a good way of creating these opportunities is by trying to engage the person your caring for with something very familiar from their past; these are known as implicit memories.”
“Implicit memories, are the things that we have done so much across our lives that they become second nature. These memories are extremely powerful and have an immediate instinctive effect on a person living with dementia. For instance, if a woman was a seamstress her whole life, give her the tools to start knitting if possible, or is she was a musician, give her an instrument.”
Being asked the same question, or having to do the same thing for someone over and over again, can begin to wear on a person’s patience very quickly.
And despite all the self-assuring and good intent that you may have, it’s natural for this type of behaviour to occasionally result in growing frustration for a carer, but it’s extremely important to remember that the person living with dementia is not frustrating you intentionally.
Colin believes that one of the keys to reducing the stress associated with repetitive behaviours, is by carers doing everything that they can to allow people living with dementia to enjoy an independent lifestyle.
“Write and label things around the living area to make things easier to navigate and help reduce some of the constant questions, because the more independent that person is, the better you will be in your ability to care,” said Colin.
“Label the fridge with what’s inside, label each draw on the chest of drawers with a reminder of what’s inside, or give the person clear visual access to a clock, if they keep asking for the time. These types of visual aids can have a big impact on someone who is struggling to do the little things.”
“Have set routines that the person understands, but remember that everyone has good days and bad days, so if they can’t do something that they normally can do, they’re not doing it on purpose.”
“Education is extremely important when caring for someone who is living with dementia because
the more knowledge you have about what’s going on, the more understanding you will have, and that will positively impact your ability to communicate.”
“93% of communication is body language and tone. And the majority of arguments stem from a person’s tone and pitch, it’s not what you say but how you say it. And the most important part of reducing tension is having a positive impact on the way you make that person feel.”
While everyone’s situation is different, for those who are caring for a loved one in their home, bedtime can become a literal nightmare due to a lack of proper sleep.
Feeling fatigued impacts a person’s critical thinking ability and also lends itself to becoming quickly agitated, and this is a bad recipe for someone who is trying to care for another person.
People living with dementia often have interrupted sleep patterns, and this movement and activity at night can interrupt the rest of carers who are in desperate need of recharging.
“Interrupted sleep can have a really big effect, no one functions at their best when they are sleep deprived, and people living with dementia have altered circadian rhythms so they will get up in the middle of the night, and that can really affect the wellbeing of a carer.
“Fatigue and poor care can become a horrible cycle for a carer and the only real solution is a proper respite, and the ability to get some solid rest,” said Colin.
“Curtains across the doors at night time can help to make the door less visible which can stop the person from wandering at night, and there are various relaxation techniques that can be utilised whenever you get a moment to yourself. Absolutely everyone needs a break.”
“We had a man that lived with us, whose wife would pick him up first thing in the morning and drop him off at night because she couldn’t live with him full-time and remain happy. So he basically just slept at our facility and that was it, and it was great for their relationship.”
It’s impossible to overstate just how difficult and selfless of a task it can be to care for a person living with dementia, and these pressures are increased ten fold for those living with and caring for a family member full time.
When your focus is placed solely on another person for prolonged periods of time, it’s not uncommon to virtually forget about your own wellbeing and let your own mental health deteriorate.
“Carers often burnout and many even die before the person they are caring for, because they get so stressed,” said Colin.
It’s important for carers to look inwards and try to recognise what triggers their anger and frustration when caring for someone living with dementia because this will make potentially heated situations easier to identify and avoid in the future.
Often, carers feel as if they can’t speak out about their own problems due to the guilt, but bottling these emotions can have a far worse effect in the long run, and affect the wellbeing of the carer and the person that they care for.
So reach out and get respite care when you can, and never be too proud to ask for help, because you can’t truly look after anyone until you learn to look after yourself.