Sep 27, 2018

Understanding the Unequivocal Rights of People Living with Dementia: Express Yourself with Behavioural Expression (Part 5)


(Please ensure you have read the published Part 1, Part 2, Part 3 and Part 4 of this article, and have located the relevant appendices.)

Interventions/strategies for catastrophic and high-risk stress related responses:

Immediate management if a person or others are in danger or at risk!

o Remove distractions and secure all exits.
o Remove person/s from potential danger – includes all other people in the vicinity.
o If the issue is related to the attendance of another person, remove them immediately from view.
o Remain calm and relaxed – smile, be gentle.
o Approach slowly.
o Establish non-threatening eye contact and do not break this contact.
o Use the person’s name or their preferred title.
o Be respectful and reassure.
o NEVER raise your voice.
o Validate the persons reality at all times.
o Speak clearly in short sentences or use body language and gestures if the person is unable to comprehend verbal speech.
o Do not patronise.
o Distract with favourite items if possible – food, cup of tea, go for a walk etc.
o Avoid the use of restraint/chemical restraint unless in case of catastrophic reactions ONLY!

Please see Appendix 2.

Remember, no-one likes to feel they have lost control over their own lives, and most of us do not wish to be controlled by others who tell us we must act in a certain way or do things their way.

Many of us immediately jump into defence mode if this occurs, so why, when someone living with dementia does the very same, do we label them once again?

To make it worse, we may also become frustrated and angry with a person living with dementia when they are attempting to communicate through behavioural expression, hence we may at times create a catastrophic situation by exacerbating the current state of affairs by OUR own behaviour.

“It is our behaviour, mood and opinions that will regulate the behaviour, moods and opinions of others”.

Purpose is central to our life in regard to how we perceive ourselves within the world, and how we maintain our sense of self.

This includes the need to be accepted and valued.

It may be argued, that by assisting a person living with dementia to survive in a world that is constantly changing, we should begin focusing on what they can do instead of what they can’t.

This would involve understanding who they are and were, and what they need in life to maintain their spirit. Hence, we may then develop a more intuitive and accurate understanding of their individual needs.

Dementia damages brain cells, however it does not damage a person’s humanity, nor the necessity to communicate, feel, continue relationships with others, and to feel appreciated and ‘affirmed’ as a complete being in the current moment.

Losing one’s memory doesn’t mean losing oneself or the people one cares for.

“Caregivers who understand a person’s cognitive boundaries, and provide care respecting the preferences of the person living with dementia, in ways that least exhausts their capabilities, are best able to minimise or avert behavioural expression and the negativity associated with it”.

Many stress related behaviours occur frequently because WE discount the differing reality of the people we are supposed to be caring for.

Advocating a solution, and providing a supportive community, may be the catalyst to those living with dementia living life with a greater sense of wellbeing.

Hence, the following strategies are general, and MUST be personalised to meet the individual and explicit needs of every single individual.

Interventions and strategies (to be adjusted accordingly to meet the needs of each individual)


o Respect the person and his/her personal space, always ask permission from a person before entering his/her space and before carrying out any care.
o Approach in calm/non-confronting manner and maintain non-threatening eye contact.
o Provide adequate explanation regarding care procedures and avoid complex instruction.
o Speak clearly and in short sentences.
o Offer reassurance and validation.
o Offer choices whenever possible (promote autonomy) and respect the persons preference.
o Speak to the person in a gentle and low tone of voice.
o Do not continue with the care routine if this has contributed to stress; leave and come back later. o Listen to grievances respectfully and be aware of non-verbal body language.
o Discuss long term/past experiences that relive joy/share memories.
o Diversion/distraction.
o Modify activities if too complex.
o Continuity of care and caregivers.
o Alleviate boredom and loneliness.
o DO NOT force or rush.
o Give praise.
o Provide cures/prompts/encouragement throughout.


o Understand the type of dementia and the progression.
o Assess for, and rule out, acute delirium, depression, pain, and any other conditions that may be creating discomfort or despair and ensure this is well managed and treated.
o Ensure well hydrated; ensure intake satisfactory; ensure all clinical needs met.
o Avoid use of chemical restraint unless in catastrophic circumstances. This includes sedatives, anti-psychotics and other medications that are used for issues that do NOT require medicating.

NB: we do not medicate people to make our lives easier or because we do not understand their differences.

Resolution and/or effective management of these medical issues may successfully reduce/prevent behavioural expression. 



o Eliminate physical cause for behaviour – e.g. boredom, lack of insight, medication, physical ailment.
o Cease doing whatever appears to be associated with the behaviour e.g. changing, dressing, rushing, activity disliked. o Remove any external distractions that seem irritating or causes anxiety.
o Maintain noise levels that aren’t overwhelming – eg. Competing vacuuming noise at the same time as music playing and the tv blaring and a radio blaring, too many visitors at once, too many people talking at once
o Provide appropriate activity program related to the persons choices and preferences.
o Rest and recuperation times in between activity so as not to overwhelm, create unfair expectation and cause overtiredness.


Imagine walking into a room where you are staying and not recognising anything at all, as well as not knowing where you are, why you are there and who all these strange faces are around you.

Getting used to living with a large group of people you don’t know is quite a change for someone who may have only ever lived with their immediate family, or alone, for a long period of time.

New or changed environments can be extremely intimidating, overwhelming and frightening to a person living with dementia.


o Prior to admission bring in old furniture, and personal and sentimental items, that may immediately make a person feel at home. Family members can assist with this.
o Do not encourage family to purchase new clothing as this may confuse a person living with dementia.
Not only may they become confused in the new and alien environment, with all the strange people, but they may be more distressed if they don’t recognise their clothes, may be resistive to wearing them, and may not believe that the clothes belong to them. If they do not recognise their own clothing they will not believe they are supposed to be there and want to leave.
o Avoid moving furniture around a person’s room as this may be confusing or make it more difficult for the person to get used to their environment.
o Set the room up if possible in the same way the persons room may have been at home.
NB: A person who gets into someone else’s bed may just be searching for the room that is as close to how their room and bed were placed at home, OR they may be used to sleeping with someone and are searching for that comfort and familiarity. It is not necessarily invasive.
o Avoid clutter, as this could be unsafe and distracting for a person. Chaos in an environment can be overstimulating as well.
o Ensure a person always has their own personal space and privacy, as removing this from anyone’s life is disrespectful and can have a negative influence on how they perceive themselves.
o Ensure there is always decent lighting and no glare.
Darkness and glare can confuse and unsettle a person with dementia and they may not want to walk around if they do not feel comfortable, or the light confuses them. E.g. Slat blinds can look like stairs and cause falls. Shiny floors can look like puddles that cannot be navigated.
o Temperature control needs to be considered so a person is comfortable and not too hot or cold. We all get grumpy when we are too hot or cold.
o Never physically restrain any person – this is considered abuse.
Remember that shutting a door on someone who cannot open it is classified as environmental ‘restraint’.
o Consistency and regularity of staff provides a more relaxing and secure environment.
o Provision of safe areas for ‘happy’ strolling and walking – going for a stroll is NOT considered a behaviour when a person is content.
o Keypads for areas of risk.
o Encourage going for a visit, or a walk to places that are familiar – parks/beaches/sitting under a favourite tree/going to places that are meaningful.

Noise levels:

Staff need to ensure they do not push a person to always be amongst people all of the time, as it can be difficult adjusting to loads of people, or crowds, especially when you are unused to that amount of activity around you.

It can also be very frustrating, irritating, disconcerting and confusing.

Quiet time is something we all need, and we must always consider how exhausting it is to be around people all of the time. Remember, over stimulation, is just as destructive as too little stimulation.

Therefore, loud noises, clattering of dishes, TV’s and radio’s, conversation, staff rushing around, and increased activity, can overstimulate to the stage where a person can feel quite overwhelmed by all the additional input.

Over stimulation can cause people to completely shut down, because it is too excessive for a person to manage when they have cognitive changes. It may increase confusion, and precipitate restlessness, anxiety and agitation, and heighten stress.

Imagine yourself, going to the mall, during school holidays, surrounded by screaming kids, yelling mothers, people rushing, everything flashing, crowds pushing and shoving!

Personally, just the thought if that makes me want to scream and hold my head, or possibly punch something.

Now imagine living with dementia, having a lowered stress threshold, a sore knee maybe from your chronic arthritis; you may be a little breathless from exertion and the long walk from the car. But no one considers this because you always USED to like to go to the mall for a coffee!!!!!!

Now, consider the new insight provided about stress related responses, and lowered stress thresholds, and question the damage this crazy environment may cause?

The same applies for example, when a family member suggests taking mum to a family gathering of only ‘50 relatives’ for her 90th birthday, because EVERYONE wants to see her, and talk to her, and be in her face, whilst all the kids throw cake and screech for hours, and everyone talks at once, and get too close, and expect so much…

I do believe I have made my point!


o Ensure noise levels are balanced with all combinations of sounds kept to a minimum. Remember that sensory stimulation is fabulous through hearing, but not when it’s a hotchpotch of different sounds.
o Try and reduce rushing around and yelling across the room when caring for a person.
o Don’t slam doors as it frightens a person.
o Don’t raise your voice when someone has a hearing deficit – this distorts sound and, additionally APPEARS like you are yelling or even angry.
o Have only one appliance going at a time – so if the TV is on, don’t confuse the fact by also having a radio going.
o If music is playing, then it needs to be the type of music that the person likes to listen to.
o If a person is used to eating with only their family, do not seat them on a large table with too many people, as this will cause confusion and increased stress levels, as well as become a distraction.
When distracted a person is likely to not eat, as there is too much going on around them. This can then impact intake.

(Part 6 to follow.)

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