(Please ensure you have read the published Part 1 and Part 2 of this article, and have located the relevant appendices.)
The Little Boy and the Old Man
By Shel Silverstein
Said the little boy, “Sometimes I drop my spoon.”
Said the old Man, “I do too.”
The little boy whispered, “I wet my pants.”
“I do that too,” laughed the little old man.
Said the little boy, “I often cry.”
The old man nodded, “So do I.”
“But worst of all,” said the boy, “it seems
Grown-ups don’t pay attention to me.”
And he felt the warmth of a wrinkled old hand.
“I know what you mean,” said the little old man.
Dementia may challenge us as caregivers because of the fundamental complexity of the condition.
However, let us contemplate the viewpoint of a person living with dementia, without the hypercritical labels that we tend to place upon them.
We swiftly make these verdicts, based on our purely cognitive viewpoints, without even considering that it is logically the person living with dementia, who is the only true expert.
‘Lowered stress threshold’
It is paramount that we recognize one of the principal crucial factors related to a person who lives with dementia.
This is the fact that people who live with dementia, frequently do not have the ability to navigate stress levels as we do.
They have what is classified as a ‘lowered stress threshold’.
As normal, stress occurs at varying but undeniable phases throughout life and every day, for us all.
People living with dementia may find this ongoing, escalating pressure difficult to manage, given the ability to manage stress changes with the process of dementia.
What transpires when we do not meet a person living with dementias needs, or put unfair demands on them,strain develops because of these daunting expectations or activity, which can lead to further burden, trauma and frustration.
Only one stressful occurrence can instigate this cycle.
If we don’t recognise this as incredibly vital information, then we are neglecting to assist the person to deal with their lowered stress threshold.
Each stressful incident from that point forward may then increase the anxiety levels of that person, gradually, throughout the day, until the possibility of a catastrophic result may occur.
This may create negative outcomes in which a person living with dementia becomes unnecessarily distraught, and exhibit emotional frustration by becoming increasingly restless, agitated, or maybe even aggressive.
Or as I would suggest, just plainly, PISSED OFF!
In developing a model of care that supports communication by understanding the language of behaviour, it ought to be necessary to implement accurate and individualised assessment and evaluation of each individual living with dementia, taking into account, what may be successful for one person, may not be for another.
Being that all persons are products of their personal life experiences and transitions, it is essential to investigate and assess the ‘person’ to gain an overview of their entire lifecycle.
Clinical familiarity demonstrates an easier understanding of stress related responses, and this is enabled by an in-depth consideration of pre-morbid disposition, customs, pastimes, problem solving reactions, gender and profession.
Once a model of care has been developed, suggestions in relation to the process of implementing this should be a joint responsibility for all care staff, family and a multi-disciplinary team of health professionals involved with caring for a person living with dementia.
It doesn’t seem reasonable for interventions to be left to a select few to understand the diverse triggers to stress related responses, as consistency by all health professionals is required.
This enables a strong team approach in relation to issue’s that potentially impact on the quality of life for a person living with dementia.
By successfully capturing the origins behind why a person living with dementia has the need to exhibit a stress related response, means we may effectively remove those triggers from a person’s lifestyle, in turn addressing the issue of that specific behaviour.
Promotion of accurate identification of triggers to behavioural expression must consequently be paramount.
Setting the scene
From the moment, a person living with dementia arises, every single task is so much more complicated than we can possibly envisage, and even more exhausting than we can ever imagine.
Everyday tasks that we barely even think about, are composed of a myriad of 100’s-1000’s of steps until completion.
Even something as simple as getting dressed requires so much more concentration and energy from a person living with dementia, especially if, for instance, sequencing is an issue, lack of insight, poor short-term memory, processing of information and so on.
Besides the fact that the person is most probably of an older age, with other co-morbidities, hence may tire more quickly, may possibly be in pain and discomfort, or have issues with movement.
And what do we do in these cases?
Do we ever consider any of these issues in totality, when we rush a person from one activity to the next, without a break?????
“Time for breakfast. Time for an activity. Who are all these people? Time to go for a walk… I can’t see any familiar faces… Time to go to the toilet… sights, sounds and feelings – are jumbled. How did I get here? Time for physio. Time for the toilet again. Time for lunch. Time time time, expectations, expectations, expectations… will my family know where I am? … getting tireder and wearier and more exhausted by the minute..there is always something I have to do… let me rest… someone must be looking for me and worrying where I am… I’m old, I have sore joints, I live with dementia goddamit… Omgggggg mum’s gonna kill me if miss the bus home again… why are they all laughing at me… I hate bingo! I’m so so so tired… leave me be!”
Where are the golden years? Where is the relief that comes at a time in your life when you deserve to take a pause??
Why can I not just chill a little after every activity?
Even if it’s just a quick nana-nap in a chair for 20 minutes??? How lovely it would be…
“I so need to take a break!”
We all need time out, we all need to pause and catch our breath.
If we don’t have time out, we habitually become grumpy and cranky do we not?
Thus, what are we doing during these situations with people living with dementia, except becoming the trigger to the behavioural expression we moan constantly about!
It also makes complete and utter sense to recognize that, the more advanced the progression of dementia, the more frequent rest periods should be necessary.
This condition is exhausting!
The 5 P’s of Understanding Stress Related responses
❖ Define and describe the Problem
❖ Learn about the Person
❖ Brainstorm Possible causes
❖ Develop a Plan
❖ If it works, Pass it on.
(Part 4 to follow)
After reading your articles 1-3 on dementia persons rights & care I am looking forward to part 4.
The articles, as a carer of a relatively young dementia person will be helpful in negotiating the care of my LO who has declined quickly since entering an aged care facility.
In today’s environment where underpaid, under educated, under staffed facilities seem to use the discriptive words such as “aggressive & agitated” loosely, the client is left to linger and decline slowly over time.
I have been & will continue to advocate for my LO as best I can. Your articles remind me that I am on the correct track and I am voicing real concerns about his quality of care that impact his outcomes.