This is the first appendix to Leah Bisiani’s article “Understanding the Unequivocal Rights of People Living with Dementia: Express Yourself with Behavioural Expression”.
Elder abuse is one of the vilest indicators of ageist discrimination within our current civilization.
Whilst the concealed ignominy of elder abuse has grown in visibility, it remains an area that is poorly examined and rarely resolved.
Chemical restraint, one of the manifestations of elder abuse when misused, remains an extremely contentious and provocative topic.
It should be questioned why this subject remains so controversial when the answers are so very obvious.
Let us today, scrutinize chemical restraint, and hopefully conclude that this outrageous practice is a structure that blithely overlooks cruel and abhorrent abuse.
In the residential aged care sector, federal law stringently forbids the use of chemical restraint for reasons such as convenience, castigation, or any non-medical motives.
Supposedly there is an alleged understanding that medicating people is not acceptable unless, ‘during catastrophic occasions where a person’s behavioural expression endangers his or herself, or the safety of others’.
Is this the case in general?
I believe not!
‘Even within these specific circumstances, the use and extent of the chemical restraint must then be clearly defined’.
Is this occurring?
Again, I see little evidence of this.
It has been indicated for years that management of stress related attitudes and behavioural expression displayed by people living with dementia, relies essentially on medications that sedate.
This is despite significant data that supports this type of medicating has inadequate usefulness and substantial negative side effects.
Furthermore, there is little indication to demonstrate that when cognitively aware people display the very ‘same behaviours’ in day to day life, they receive the same inappropriate treatment.
Within residential aged care, people who live with dementia are more likely to be potential targets for this rampant form of chemical restraint, because of their cognitive changes, and limited or altered ability to, at times, adequately ‘verbally’ communicate that their needs are not being sufficiently met.
People who live with dementia are more exposed because they may be powerless in independently negotiating a situation or be insistent on a particular level of care.
They may be unable to express their specific individual preferences, or discuss incidents that make them feel uncomfortable or vulnerable.
They may often be treated as if they have lost their humanity, or are unable to make any independent decisions in relation to themselves.
We make many assumptions about people who live with dementia without even considering, nor bothering to perceive life through their eyes.
We tend to habitually disregard the fact that most people who live with dementia have also lived a full, cognitively aware life, just as we have or do, and they have a distinct right to demand, and receive a maximised level of care, and a continuation of that lifestyle.
No medical condition can ever remove that right.
It is commonly discussed that medications used as a form of restraint, create decline in health status, endorse disrespect, condone ruthless removal of choice from a person’s existence, and may likely place a person living with dementia in a position of life-threatening risk. Thus, by administering chemical restraint we are exacerbating and amplifying debility and deterioration, directly related to, and triggered by our evident and seemingly thoughtless neglect.
NB: Please digest this information as it demonstrates a relevant and cringe worthy fact
Consequently, it should be argued, that the prominent, undesirable implications of chemical restraint, are, in majority of cases, detrimental to positive ageing for any person living with dementia, denying them an appropriate level of care that maintains an ongoing productive and fulfilling lifestyle.
Stereotypical perceptions, stigma, and ageist attitudes can mislead those that care for people living with dementia within residential aged care and provide a limited view as to the need for focusing on a person’s actual strengths, ability and worth.
The common thread identified, in relation to chemical restraint, has hence become one of acceptance.
Medicating people has become the ‘norm’ in way too many cases, and is encouraged by numerous aged care professionals.
Even more concerning, is the so-called, convincing advice offered to informal care partners within the home environment, in which they are misinformed into believing this is common practice.
Unfortunately, due to lack of support, advice and guidance, this creates ignorance, and therefore generates a status quo where the care partner is influenced into medicating the person they care for.
When medicating human beings for ‘being different’, becomes an acceptable and tolerable approach, and remains unquestioned, then we truly must look inside ourselves and challenge this process as the disrespectful, degrading, inhumane process that it truly has become.
Therefore, sedatives, anti-psychotics or psychotropics, and anti-anxiety medications consistently utilised in the so called ‘management” of behavioural expression, demands serious consideration as to the undesirable and objectionable effects they create.
The numerous adverse effects are such that none of us would choose, nor enjoy having them thrust upon us so unfairly.
They include the following; stupor, lethargy, physical deterioration, drowsiness, poor mobility and increased risk of falls/serious fall related injury, debility, incapacity, loss of independence, malnutrition, dehydration, decreased cognition, annihilation of personhood, and evident destruction of entire life quality.
Furthermore, by using chemical restraint we generate yet another expanse of complications and co-morbidities of which we consistently whinge and whine loudly about.
Basically, by over medicating a person because of our own ignorance, we are actually exacerbating behavioural expression even further by our own stupidity, creating a spiral of destruction inclusive of triggering the onset of acute delirium and depression indicators.
We then continue medicating individuals for these conditions, hence effectively destroying their quality of life.
And all because we just don’t get it! Or don’t care enough to get it.
What are we doing people?????
What are we creating?
As educated people we should know better.
Overuse and mismanagement of chemical restraint is considered a significantly pertinent indication of elder abuse:
I question this very disheartening and destructive attitude of drugging human beings, who, in reality, are attempting to communicate in the very best way they can.
When a person exhibits behavioural expression, they are clearly demonstrating their needs are not being met, they may be in pain, they are frustrated, or living a life of core despair.
Yet those in the supposed ‘care giving industry’ lack the perspective, empathy and compassion to enter their reality with them, nor attempt to understand how eternally difficult this must be.
Honestly, would we all not be resistive to care if we were in pain and being dragged out of bed whilst our stiff aching joints were not given time to adjust? Or if we were not given adequate pain relief first? Or, if our personal choices were not adhered to? Or if we had unfair expectations thrust upon us? Or if people kept changing our routines?
Is this not logical and reasonable?
If WE are unhappy about a situation, or feel OUR rights are being ignored, do we not express this in the best way WE can? Do we not get annoyed and angry, flip out at our husbands, screech at our kids or slam doors?
Would we drug our children for having a hissy fit down the street? Does our workplace drug us for having an assertive opinion or standing up for our rights in a meeting? Do teachers drug students for misbehaving in class??? Does a shopkeeper demand drugging a client who becomes angry over poor service? Do we drug our dogs for barking in the yard? Do people drug us for strolling down the street aimlessly, (but happily), for 2 hours, window shopping?
Why then, when a person living with dementia acts in the exact same manner, do we immediately run to the drug trolley to shove yet another PRN down their throat?
Furthermore, how dare we consider this a humane and caring attitude?
Arguably, I must emphasise again, that medicating people because you do not understand them is considered intolerable behaviour on “our” part.
Accountability is now required, with a change in culture and philosophies that cease judging and labelling a person living with dementia as a ‘condition’ or as a ‘behaviour’.
The predominance of overuse and abuse of psychotropic medication, when caring for people living with dementia, must therefore, be confronted and gravely reflected upon.
May I again reinforce, the frequency of behavioural expression is most often related to ‘our’ behaviour and condemnatory attitudes towards people living with dementia?
It is time we looked at ourselves and consider that our biased expectations are often the triggers and cause of stress related responses.
If we could only adjust ourselves to a situation and become more flexible in our approach, then majority of behavioural expression would be eradicated.
It is time to remove our heads from the sand and move forward from these old archaic, negative care philosophies.
All persons have the right to speak up about their frustrations and communicate them in the best and only way they know how, whether verbally or by showing us through their responses or other means of interaction.
We, as cognitively aware individuals should consider reaching into ourselves, to utilise our powers of empathy, ‘listen’ to the meaning behind behavioural expression, and learn the language of the person living with dementia.
Surely this should not be so eternally difficult for us??????
Our dependence on the dialectal aspects of language is extremely solid and rigid.
Some people living with dementia may find that dementia conveys experiences and understandings that those of us without the condition cannot even imagine, and furthermore, there are most probably no specific ways for them to express this verbally
In fact, it’s as if we choose to intentionally misunderstand the meaning behind behavioural expression.
It could even be professed that we are punishing people living with dementia for their alternate and quite ingenious method of interaction.
We are enormously disinclined to recognise, encourage and rejoice in most human abilities, including differing approaches to communication, and this unfortunately may deprive every one of us.
Dementia strips people down to the essence of their being and frees them to be in more direct touch with their emotions. They communicate with greater authenticity than our customary conventional reliance on controlled emotional expression.
Furthermore, health professionals and care partners often make the mistake of catering to their own needs first, which directly impacts on the care of the person living with dementia.
We again have everything upside down, because as I see it, we are supposed to be the ones delivering the service here, not the other way around.
What right do we have, to remove a persons’ independence, by over medicating them, just to make our own task orientated lives easier?????
This level of cruelty is unacceptable.
This hideous process within aged care and when caring for people living with dementia, is frequently unidentified nor addressed, thus it remains the responsibility of all professionals, to establish methods of monitoring and preventing this ‘dirty little secret’ from destroying those who are exceedingly vulnerable and considered at high risk of having their rights abused.
We are the ones who instigated the use of chemical restraint, so we are conversely, the ones who can easily reverse it.
Should we not, as care partners, be adhering to a code of ‘compassionate care’, and speak up on behalf of people who live with dementia?
The continual excuses and justifications display a definite lack of empathy and understanding.
Additionally, and judiciously, it should be considered preferable to reduce the use of any psychotropic medications, because they are associated with such a high degree of harm, henceforth destroy quality of life.
This is a no brainer!
Sitting in an armchair for the remainder of your lifecycle, drooling, is not improving a person’s life quality – it is essentially gross neglect pure and simple!!!!!
How dare we force this indignity on another because of our own inadequacies and limitations!!!
The criminal justice system does not presently have sufficient avenues to control or prevent elder abuse, so it is time for society to take a stand.
Recognising that this concern is very ‘real’, and acknowledging that even in todays’ society, this type of inhuman disregard for an older person or person living with dementia is occurring, is the first step in approaching this issue.
The initial stage of identifying and preventing elder and chemical abuse is the obligation of all health professionals, the public and community.
We must unite the world and fight against this foul attitude.
It is our responsibility to demonstrate how essentially abominable chemical abuse is and make it clear this will no longer be tolerated.
We must create awareness and support within the community, provide information systems and services, ensure health professionals are more highly trained, and foster environments that are enabling for the person living with dementia.
Recommendations and rigorous frameworks regarding chemical restraint must be paramount, stating and clarifying administration only as a last resort.
Stereotypes become part of how we think, how we believe others should act at certain times of their life and how older persons should behave. When interacting with people living with dementia, we can make incorrect choices for them by permitting our biases to take preference, thereby misrepresenting their sense of personal and individual characteristics.
As a collective, humankind must change their approach and instead, meet the individual requirements of a person living with dementia, support and prevent the triggers associated with stress related responses, transform ill-being to well-being, uplift mood and provide a foothold in which we can build upon to promote new interventions that establish additional and extremely valuable approaches to facilitate person centred dementia care that is socially meaningful and personally significant to people living with dementia..
As health professionals, the task of caring for others is a responsibility that we embrace because we are supposed to ‘care’ and ‘honour’!!
This inherent code adheres to only benefiting humanity, not destroying it.
We must not breach that duty of care by abusing those at their most vulnerable, who are often forced to agonize through elder abuse at its worst and most cowardly.
Chemical restraint is a crucial area requiring urgent responsiveness and action, to ensure our older population and people who live with dementia no longer suffer at the hands of those who demean and abuse their rights, when they are defenceless and exposed.
Let us advocate for those who suffer in silence, and deliver a loud and courageous voice, showing strength in the face of this inhumane, vicious abuse and neglect, which is thrust upon those who cannot fight for themselves.
Shame on us!!!
© Leah Bisiani MHlthSc/RN.1/Dementia Consultant June 2017
Absolutely agree
I have stood up against this practice many times to protect and advocate for my husband who is in a secure dementia unit, but I have been intimidated, threatened with losing guardianship and belittled constantly. He and all the other residents are so very obviously chemically restrained and I too am restrained through threats so now I am too scared to continue to speak up. This has to stop!
I agree with the author in that the appropriate treatment of behaviours of concern is not medication. However I do not agree that staff are always uncaring and just want to give a medication to have a quiet life. What is the alternative? Staff with adequate time to spend with each resident, getting to know their individual care needs and how they communicate. Many staff are frustrated that they cannot deliver the care and spend the time that they want to with residents. They would be upset to realise that their attempts at caring are labelled ‘abusive’.
Most residents do not exhibit such ‘behaviour’ when they are in the company of a carer who they have got to know and who has time to spend with them. Residential Care requires staff allocation who are not rotated between units. I believe that caring for a resident with dementia is not for every care staff, so careful recruitment for this cohort of staff is important. The staff get to know the residents and the residents are comfortable with these staff.
Having 2-3 staff to ‘care’ for 20 high level residents with dementia does not allow for the level of care that these residents require and that the staff would like to give.
What happens in the case where a dementia resident with aggressive behaviours hurts the other innocent residents though? Or a resident has died?
Dementia Australia has developed the CAUSEd tool to enable staff to analyse behaviours and enable them to recognise and deal with the multiple issues that a person living with dementia encounters on a daily basis. The well researched components are Communication, Activity, Unwell (Physical)/Unmet (Psychological)needs,Story ( a persons history likes and dislikes) Environment ( Physical and Psycho social)and finally small “d”for Dementia.
It is not unusual for staff to identify 30 + potential triggers that can be modified without resorting to medications. Example a resident was refusing to leave the building via the front door but would happily leave via the garden entrance. Using the CAUSEd model staff were able to identify that the black doormat appeared to the person as being a hole in the floor. Once the door mat was moved away the resident had no issues with going through the front door of the residence. The tool enables staff to problem solve by looking at the world from the perspective of a person living with dementia. It is certainly a KEY tool in understanding and assisting people without resorting to medications.