Dispelling the Myth – “Sundowning” by Leah Bisiani MHlthSc., RN1., Dementia Consultant

Reprinted with kind permission

“Sundowning” is an area I feel is a distorted viewpoint and yet another “label” for cognitively aware people to use, when they misunderstand and misrepresent people living with dementia.

Personally, my belief is there is no such thing as “sundowning”.

That it is yet another term and response to us not quite getting the reality of those we care for, so as usual, try to pigeon hole behaviour from our perspective, instead of the person living with dementia.

I have a theory that I base on my experience in caring for people living with dementia throughout the last 30 years, and having the privilege of viewing life through their eyes.

Thus, I always make my decisions based on their perspective instead of a cognitive viewpoint.

Please ponder over possible alternatives, and thus acknowledge how the label “sundowning” could be viewed as disrespectful, dehumanizing and judgmental.

Think about how that one word has negative connotations attached to it, that affect our attitudes towards a person living with dementia.

Imagine how YOU would feel to be described this way…………

I will try and give you the simple version.

Consider this:

“Sundowning” is just a term created by cognitively aware individuals, for a form of behavioural expression that is twisted by our unfair expectations towards people living with dementia, in regard to them doing their best to maintain a certain level of ability throughout an entire day, under our rules, for us.

From the moment they get up, 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 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 sequencing is an issue, lack of insight, poor STM, processing of information and so on.

Besides the fact that the person is most probably of an older age, with other co-morbidities, where they tire more quickly anyway. Then we rush them from that activity to the next, without a break.

“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 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 get cranky do we not?

People living with dementia also have what we know is described as a ‘lowered stress threshold’, and we are all well aware of this are we not?

Therefore, if we are constantly expecting certain actions to be completed, the person to be active all of the time to fit in with our task orientated lives, without much needed rest periods, then it makes sense that stress levels, with high escalation of agitation, anxiety will continue to occur.

As it does when WE become overtired!!!!!!!

Thus, what are we doing here, except being a trigger to the very behavioural expression we whine about.

It also makes complete and utter sense to recognize that the more advanced the cognitive deficit, the more frequent rest periods should be necessary.

This condition is exhausting!!!!!!

I am not suggesting go to bed and drawing the curtains for 8 hours.

But allow a person time to ‘breathe’ in between.

Surely, we would all prefer the choice, when we get to an age that consists of further age related conditions, have worked hard our entire lives, and become increasingly tired, of putting our feet up regularly throughout the day, so we can feel less overwhelmed.

And really, who do we need to rush for????? We should be able to enjoy this part of life as it is supposed to be the long awaited golden years.

The conclusion therefore on Leah’s theory, is that ‘sundowning’ is a “made up word”, and fabricated condition.

It makes sense I believe, that by 4pm, when a person has been raced from one task to another, that they are by then, bouncing off the walls with stress due to over stimulation and exhaustion, mentally as well as physically – which is just as destructive as under stimulation and boredom.

This does not create a balanced environment.

THEN, we try to provide MORE activity labelled as ‘sundowning’ programmes, which usually mean that by bedtime the person is so intimidated by unfair expectations, that they won’t settle, and everyone turns around and labels them as “sundowning” or “resistive” or “unmanageable” all over again.

How very unfair and arrogant of us.

What we have completely neglected to do in these cases, is consider the person and their specific needs once again.

Then we begin our rants and sighs and complaints that we cannot settle that person.

And then, as is often the case, the use of medication interventions are utilised because we can’t cope with what we have created.

Dreadfully unfair and unacceptable in my view.

How on earth can we expect a person living with dementia to be settled at this stage of the day, when they have had a build-up of stress and anxiety?? And all because we have not taken into consideration their needs based on the fact they live with dementia, are usually older nor measured the progression of their condition/s.

And so the cycle begins………………………again WE are the triggers.

We may say, (because I have heard this comment so many times I now find it tiresome), “Oh but if they rest during the day they won’t sleep at night”.

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

Meaning no “so called” sundowning occurred.

And when a person living with dementia is calm at this stage of the day/evening, they are also calm at bedtime, (if their bedtime preference is met!!!), so they in fact settle beautifully, resulting in more productive sleep.

Which again benefits the person living with dementia in every way.

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

So, there you go…………………………….

Does that make sense???

I hope this has assisted to alter perceptions on another myth surrounding the life of a person living with dementia.

May 2017

Biography: Leah Bisiani is a highly skilled registered nurse/dementia consultant, having completed her Masters in Health Science/dementia stream, and Diploma in Business/Frontline Management, with more than 30 years’ experience in aged /dementia specific care.

After completing her Registered Nurse training at the Alfred Hospital in 1985, Leah undertook further studies and management/corporate employment within the aged care industry, establishing a knowledge and experience base placing her at the forefront of the industry, with her primary area of expertise being dementia specific care.

Leah has a passionate dedication towards Best Practice and is constantly researching and utilizing progressive and innovative approaches to obtain the highest possible quality of life for older people living with dementia. She distributes and publishes her evidence based research within the medical field, aged care sector and community, enabling others to accomplish maximized care for people living with dementia.

Self-development has been a priority, and has not only benefited Leah in her chosen pathway, but allowed her to expand on her proficiency, working in consulting, research, education/learning and development. Her goals continue to be focused on creating the ultimate benchmark for dementia specific care. Her vision has changed cultures and philosophies of care, providing a powerful voice that confront current practice, thus advocates and upholds the rights of all people living with dementia.

Leah has successfully demonstrated how creating environments in which persons with dementia continue to thrive, enables continuation of life based on recognition of self, and valuing individual preference and choices.

As a result of her ground-breaking and highly effective work, Leah’s increased profile has inevitably resulted in numerous, ongoing invitations over the years to lecture at leading national and global conferences on topics directly associated with her research, specifically behavioural expression and lifestyle.

Leah won both the 2010/11 Lend Lease ‘Australian’, and ‘Global’, Award for “Excellence in Innovation” for her personcentred models of care, designed for people living with dementia.

This award recognised Leah’s contribution to the aged care sector and specifically to the lives of those living with dementia.

Her pioneering revelations have enabled people living with dementia to attain maximised and enriched lifestyles, and furthermore, successfully empowered and motivated care partners to embrace her dreams of change.

In 2012 Leah was published by Sage Publications in regard to her research, and continues to write key articles for the “International Dementia Journal”, “Australian Dementia Journal” and various key dementia journals globally.

Leah was privileged to be invited to become an “International Care Team Member” of the ICA, (International Caregivers Association), a revered panel of dementia experts, based in Mapleton, USA, in 2014.

Having developed herself as a leader in the field, Leah has further added to her repertoire and become an advisory board member with the “Alive Inside Foundation”, USA. The Alive Inside Foundation is a non-profit organization dedicated to inspiring an Empathy Revolution—using education, intergenerational practices, music, and film. They empower youth and local communities to create meaningful, shared experiences that link generations, transform dementia care and expand aliveness globally.

Leah contributes her assistance to “Dementia Alliance International”, an Australian based registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world. They seek to represent, support, and educate others living with dementia, and the wider dementia
community. They strive to provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

This provides Leah another niche area in which she can continue to make a difference to, and enrich the lives of people living with dementia.

In 2015 Leah published a submission to the Victorian Law Reform regarding her support of medicinal cannabis as a healing medicine.
Leah is interested in advancing the development of medicinal cannabis clinical promotion and has presented at the, “Cann10 International Medicinal Cannabis Conference”, in Tel Aviv, Israel in September 2016, and “CannaTech Conference” in March 2017, where she was also Master of Ceremonies.
She has since become a popular and prominent speaker at foremost Australian and Global medicinal cannabis conferences, symposiums and summits, discussing the promising therapeutic benefits of medicinal cannabis for the treatment of chronic intractable pain in the older population.
Leah co-authored – “Understanding pain in aged care: the UNPAC study – exploring the nature and treatment of chronic pain in the Australian aged care setting” Published Feb.2018 in the Journal of Pharmacy Practice and Research.to examine and demonstrate supportive evidence within this arena.
As per the words of Ghandi, Leah believes:

“Be the Change You Want to See in the World”.

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