One of the simplest and most effective analogies that I have ever heard used to describe dementia was that if you liken a person’s brain to a regular set of traffic lights – the average person processes thoughts in ‘green’ and ‘red,’ but living with dementia is like being stuck in ‘amber.’
Changes in the way that the brain works can result in major changes in the way that a person with dementia understands and delivers communication, leaving many important thoughts stuck somewhere between an idea, and a response within the mind.
As expected, living day-to-day life in a state that teeters between confusion and being lost in translation takes an enormous toll on a person’s emotional wellbeing which can often result in adverse physical and emotional occurrences that are often categorized as ‘behaviors.’
Caring for a person who is living with dementia requires a level of patience and understanding that goes far beyond anything that most people could fathom, but there has been talk recently that the majority of ‘behaviors’ in aged care settings are the result of poor communication and a lack of understanding between staff and their residents.
Gerontology Consultant and former aged care facility manager, Nicole Smith, made waves online recently stating that many experts believe that up to 85% of aged care residents “behaviors” could actually be responses to their living environment and the way that they are being treated by staff.
Nicole sat down with HelloCare and shared her thoughts on why she believes that the majority of negative reactions that we see from people living with dementia have more than our ability to understand them, rather than their ability to understand us.
“People in aged care environments are moved in at a time of their life when they have a reduced cognitive capacity, at an age where they might not handle change very well,” said Nicole.
“We then expect these people who have often been taken from the most familiar surroundings and trusted people in their lives and expect them to just fit in with what we do, rather than adapting to their cognitive state.”
Nicole believes that labeling certain resident actions as ‘behaviors’ removes any examination of the circumstances that potentially cause them, and that poor understanding and communication between an aged care staff members and people living with dementia are the most common cause of these reactions.
“Imagine being woken up at 4.30 am because you have soiled yourself and have a complete stranger trying to take your clothes off and give you a shower. This person has just woken up, they are often confused, they don’t know the person undressing them,” said Nicole.
“A poor reaction to this circumstance can get written up as a verbal refusal of care.”
“I’m not only speaking from an academic perspective because I worked in aged care for 14 years and I have seen all of this. I have worked it, I’ve lived it, and I’ve breathed it.”
“Unfortunately, the majority of these so-called ‘behaviors’ are caused by the way that staff is communicating, or not communicating with those that they care for.”
One of the best assets that someone caring for a person with dementia has, is their ability to understand and adapt to that person’s needs.
Unfortunately though, developing this kind of understanding takes time, which is a resource that most staff do not have an abundance of.
Staff cutbacks within the aged care space are well documented, which is evidenced by the constant stream of speculation regarding mandated ratios.
Even though aged care staff is often pressured to perform their duties under extreme time restrictions, Nicole Smith believes that this is compounding the problem rather than the entire cause.
“Absolutely time plays a role, I’ve heard the statistics around 6 minutes to shower and dress a resident, but to be honest it is not just a factor of time,” said Nicole.
“If you don’t have a good culture within your workforce, and people with the right temperament who have been specifically trained in dementia, the chances are that you would still be seeing these reactions even if you had 20 minutes per individual in the morning.”
In her role as a manager of an aged care facility, Nicole incorporated regular staff duties into her daily routine as well as making the decision to spend two full days of each month on the floor with staff, performing regular duties like changing continence pads, mopping floors and assisting with feeding at mealtimes.
Actively participating in these duties gave Nicole a better understanding of the issues that her staff faced, but also allowed her to lead by example in terms of the type of communication and the way in which she interacted with residents.
According to Nicole, the lack of understanding can not be blamed on the staff themselves, as the circumstances that lead to poor care outcomes like dementia behaviors are actually a result of poor training and leadership from management within facilities.
“This is not the staff’s fault, facilities and management need to get engaged and get out on the floor to motivate and lead their team to provide the type of communication and care that they want,” said Nicole.
“Management need to be leaders, not bosses. They need to be engaging in culture change programs like the Butterfly Program, the Eden Alternative, and Montessori.”
“Unless you are actively engaged in a culture change program, prepared to spend money on education, and modeling the type of care that you want your staff to give – you can’t blame the people on $23.00 per hour for not giving the right care.”
“The foundations of caring for an elderly person starts with their training, and we need to train staff to care with compassion and empathy first and foremost, and then ensure that they have the knowledge required to do a great job”
“There should be no registered nurses working in aged care unless they have a postgraduate degree in dementia, or they are working towards one, and all PCA’s should have significant dementia training alongside their Certificate 3 and 4 credentials.”
“Carer’s are the pillars of every aged care facility, in fact, they should probably sit at the top of every organisational chart due to the impact that they have on the lives of residents.”
“It is absurd when you consider the number of people living with dementia in aged care, that there is no legislation that dementia training be a part of a PCA’s requirements.”
“We have to make this industry more esteemed to garner respect. And then we can reduce ageism and ensure elderly people are being treated the way in which they should be.”
The reasons that ANY people go into residential care is because they can’t be looked after safely at home.
Empathy is the skill most important in care, from babies to the elderly.
Is someone seriously going to suggest that the new model Registered Nurses trained in university are better carerers than when they were trained on the Hospital floor where they were in contact every day with their patients.
The Government sets the criteria for qualifications required in residential facilities, clearly they believe the standard and the rate of pay is adequate to meet the needs.
We have all heard of “bedside manner”, some doctors and nurses have remarkable qualifications but are cold and aloof so again empathy is the key stone to care.
Empathy is when an AIN working their butts off in a private facility stays and doesn’t move to another type to get salary packaging and other advantages not available to private facilities.
Another qualification isn’t worth the paper it’s written on without empathy and care. Look at child care for example, these baby sitters are now rediculously referred to as educators but it hasn’t changed anything for the child.
I just have a question for you. When you say these baby sitters are now ridiculously referred to as Educators, excuse me, why are you calling Child Care workers (Educators) baby sitters. Have you been to a Child Care Centre? Their lowest qualification is Certificate 3 & most are made to get their diploma which takes 2-3 years of study & are still paid a very low wage. But yet we expect these people to have our children totally ready for school. Children going to school need to be able to do alot more these days & who teaches these children? The staff at the Centres.
Thank you for a great article. Dementia care is a special art in its own right. You mention “all PCA’s should have significant dementia training”. Excuse my ignorance, but what or who is a PCA?
Hi Paul,
A PCA is a Personal Care Assistant.
It was perfectly obvious to me when my wife was in her first nursing home that she was exhibiting a lot of behaviours like dragging chairs and and being confused The home she was in had shared rooms locked cupboards keeping her and residents out of personal things and toilets down the hall that were used by people not in control of bowels Residents were placed in Hippo pants to prevent injuries from falls Having come from a home environment where she had some control but could not be left her bowel habits deteriorated and she was not very happy The environment was excessively noisy with hard surfaces everywhere . I found another home with single rooms and on-suite and no hippo pants and plenty of carpet and softer surfaces
The main thing was the first environment was a shock to her and stress was great after coming from a home environment. from a secure environment to almost bedlam. As stress was removed in the new home she began to read and talk more and manage her own toileting better and chair dragging behaviours stopped stopped. Yes behaviours are affected by stress yet so many homes are still thinking of dementia patients as inmates to be controlled by what ever means when hygiene (things that remove stress slow No loud noise, individual rooms keeping residents to their own spaces ie beds and rooms rather than invading other rooms al have a cumulative effect She lived her life in the best possible way not degrade or treated as a mental inmate but cared for person. This is an example of the disparity in our nursing homes. The first was private for profit the second a non profit. The care was like “chalk and cheese”. No organisation is perfect but to be horribly imperfect need to be addressed in the aged care system. where people have to suffer in some terrible homes .
Having either observed, or heard of situations where it occurs, this is also, I believe true of people with dementia being cared for by loved ones who do not understand how, nor have they been taught, to communicate with the person in their care, or they just don’t know how to cope with this strange phenomenon…they are generally as confused as the person with the condition.
Anton i think you are confusing empathy with loyalty… your definition of empathy is completely incorrect.
Empathy is the ability to be able to identify, experience and connect with the emotional needs of someone who is under your care.
My mother had dementia. On one occasion, when we were at the Dr.’s, she wasn’t speaking too well. The Dr. turned to me and asked if I understood everything that my mother said. I replied, truthfully, that I didn’t always understand what my mother was saying, but she understood EVERYTHING that I said. He got the points that-
1. You don’t just assume that a dementia sufferer doesn’t understand what is going on or being said around them so treat them with as much respect as you would anyone else.
2. Don’t assume that just because the dementia sufferer doesn’t have the ability to articulate in one moment that they won’t be able to in the next or the next day.
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The elephant in the room remains…… ratios in aged care facilities. It matters little how much empathy you have or additional qualifications to care for dementia residents, if you are trying to care for 20 residents at a time. Dealing with Dementia residents takes time, which is just not available when there are insufficient staff. For some (like me) it wasn’t about the money, though this is of concern for most. The other problem with requiring additional study of course, is that it is unaffordable for some. With most Certificate courses costing in the thousands, adding more cost is just unfair when you are only receiving $23 per hour.