This is the third appendix to Leah Bisiani’s article “Understanding the Unequivocal Rights of People Living with Dementia: Express Yourself with Behavioural Expression”.

“Sundowning” could be considered another false perception that is constructed by distorted viewpoints utilised by society and the health profession in generating negative stereotypical attitudes towards people who live with dementia.

It seems humanity tend to prefer judging those that do not meet preconceived impressions of how we must present at a certain age.

Thus, we have a habit of designing ‘labels’ so that the general community, inclusive of the medical fraternity, continue to misunderstand, discriminate and misrepresent people living with dementia.

Personally, my belief is there is no such thing as “sundowning”, and the term itself, is yet another idiosyncratic response to us ‘not quite getting’ the reality of those we know or care for.

As we flounder in our ignorance, we attempt to pigeon hole behavioural expression from our subjective perspective, instead of ‘listening’ to the person living with dementia and applauding their ingenious and instinctual methods of communicating to us their needs are not being met effectively.

My theory is based on 30 years of experience rethinking dementia and the care we deliver, and is drawn from a more compassionate and empathetic vantage point.

Thus, I attempt as best I can within my cognitive limitations, to remove individual bias and enable joint decisions to be made, grounded on the persons outlook instead of our cognitive assertions.

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Please ponder over these possible alternatives, and thus acknowledge how the demeaning label “sundowning” could be regarded as disrespectful, dehumanizing and condemnatory.

Think about how that one word is fraught with undesirable and harmful connotations, that directly affect our attitudes towards a person living with dementia.

Additionally, the tone used when this word is articulated is often patronising and critical.

Imagine how YOU would feel to be described in this manner…

The simplified version

Reflect and consider an alternative awareness that is more respectful than defining people by behaviour, and instead, reach into ourselves so we can understand the language of dementia.

Essentially, “sundowning” seems to be a term fashioned by cognitively aware individuals for what they distinguish as behavioural expression that occurs in the latter part of the day.

Not even at sundown I may add, but from 3-4pm when an attempted definition is made. Weird?

The term has been invented around assumptions that are twisted by our unfair expectations towards people living with dementia.

When a person lives with cognitive changes and is doing their best to maintain a level of ability akin to a person with no cognitive changes, throughout an entire day, under our pushy direction, abiding by our rules, all for us: then does this not seem a disproportionately heavy burden to carry?

From the moment a person living with dementia arises, every single task is way more complicated than we can possibly envisage, and even more exhausting than we can ever imagine.

Everyday tasks that we barely even consider or think twice about, are comprised of a myriad of steps until eventual completion.

Frequently hundreds of steps may be involved for just one activity of daily living.

Even something as simple to us as getting dressed, requires an incredible amount of concentration and energy from a person living with dementia, especially when sequencing becomes an issue, compounded by altered insight, lessened short-term memory, changes in the processing of information and affected comprehension.

Besides the pertinent fact that the person is often, (not always), of an older age, who lives with significant other comorbidities, of which may result in the person tiring more quickly.

Then what do we do?

We habitually and conveniently ignore these elements of being old, tired, possibly in pain, may be breathless, may not have our choices met etc. and create time frames that surely cannot be expected of a person who feasibly cannot maintain them, even with assistance.

THEN, when a person is stressed to the max from being forced to meet our needs, we provide MORE draining activity labelled as ‘sundowning’ programmes.

Does this not make you feel tense and exhausted just thinking about how awfully wrong and wide of the mark this is???

Give me a break!!!!!

The needs of the person we care for should ‘never’ become secondary to ours.

“Time for breakfast. Time for an activity. Time to go for a walk. Time to go to the toilet. Time for physio. Time for the toilet again. Time for lunch. Time time time, expectations, expectations, expectations… getting tireder and wearier and more exhausted by the minute… let me rest… I’m old, I have sore joints, I live with dementia goddamit!!!”

No respite at a time in your life when you deserve to take a breath after every activity???

Even if it’s just a tiny nap in a chair for 20 minutes.

“I so need to take a break!!!!!!!!!”

We all need time out, we all need to pause and catch our breath, and if we don’t, we ALL get cranky do we not?

It is not being suggested that the person goes to bed and draws the curtains for 8 hours either, as yes, this would likely affect sleep at night.

But why do we have such a problem with allowing a person time to ‘breathe’ in between?

Often heard are care partners stating, “if I let that person sleep during the day or have a nap they won’t sleep at night”. This is yet another tiresome fallacy to be dispelled.

If by bedtime a person has become so anxious and agitated related to the removal for the need to rest during the day, then it is unlikely they will settle.

They may not even sleep at all because they are so overtired and wound up by us.

Then everyone turns around and labels the person as ‘sundowning’ or ‘resistive’ or ‘unmanageable’ all over again.

How very unfair and conceited of us.

Any person then doesn’t sleep at night due to this level of amassed stress, compounds pressure related responses by ‘further’ complications that occur as a result of ‘lack of sleep’.

As is sadly often the case, the use of medication interventions such as chemical restraint may then be administered and utilised because we can’t cope with what we have created.

Culminating to decisions consisting of medicating others purely for communicating unmet need is inappropriate, unacceptable and considered elder abuse.

Thus, the cycle continues and the person living with dementia continues to be judged on a situation we have developed by our unawareness.

If perchance, we were decent enough to understand the essential need for restful periods throughout the day, it would demonstrate the person living with dementia would most likely be calm and relaxed by the time they wanted to go to bed.

They would then potentially have ‘more productive sleep’ because they are not now going to bed uptight and overwrought by our insensitive and thoughtless actions.

It also makes complete and utter sense to recognize that the more advanced the cognitive changes, the more frequent and lengthy rest periods should be necessary to recuperate from the never ending relentless expectations of those around the person.

Changed perceptions of stress

People living with dementia correspondingly have what we very well know is described as a ‘lowered stress threshold’.

This is a meaningful feature of living with dementia and cannot be ignored as inconsequential.

Therefore, if we are constantly expecting certain actions to be completed to meet ‘our’ schedule, and for the person to be active continually to fit in with ‘our’ task orientated lives, it is likely that individual shall tell us that we are expecting way too much.

If a person living with dementia is pushed from one task to another, without the much-needed rest periods they rationally require, then it makes sense that stress related responses, with high escalation of agitation and anxiety, will obviously continue to occur.

As it does when WE become overtired and rushed without time to take a breath!!!!!!!

Thus, what are we doing here, except becoming a trigger to the very behavioural expression we whine and roll our eyes about.

This condition can become a gruelling and wearing experience if we continue to be so impervious to the person and what they are going through.

It occurs purely because we cease basing understanding and care on personal changes to physical and cognitive ability.

Surely, we would all prefer our own choice and preferences, to be respected, especially when we get to an age that consists of further age-related conditions, have worked hard our entire lives, and are becoming increasingly tired?

Why on earth can’t a person put their feet up regularly throughout the day, so they can feel less overwhelmed.

Where is the freedom to rest up and enjoy yourself?

And really, who does the person living with dementia need to rush for?????

They should be given the liberty to appreciate this part of their life, just as we would all expect, and relish every moment.

After all, it is supposed to be the long awaited golden years!!

Sundowning goes down

The conclusion therefore, is ‘sundowning’ is a ‘made up word’, and a fabricated condition.

As described and examined, it makes perfect sense, that by 4pm on any afternoon, when a person has been raced from one task to another, that they are bouncing off the walls with stress due to over stimulation and exhaustion.

This fatigue may be experienced mentally as well as physically – which can be just as destructive as a person being under stimulated and bored senseless.

I have proven successfully that by providing revitalization and restful periods in between every activity, reduced ALL incidence of anxiety related behavioural expression by late afternoon.

Meaning no “so called” sundowning occurred!!!!

Thus, this incorrect and falsified perspective of ours about behaviour does not create a balanced environment for a person living with dementia.

This cycle must cease… WE are the triggers to this vicious circle.

“Don’t push me so I am at breaking point and am trying to communicate to you that you have it all wrong. Don’t push me to exhibit behavioural expression to demonstrate that you aren’t meeting my needs. And stop labelling me when you created this reaction that you then so quickly judge me on!!!!!!!”

© Leah Bisiani – MHlthSc/DipBus/RN.1/Dementia Consultant. 2018.

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