Sep 21, 2018

Understanding the Unequivocal Rights of People Living with Dementia: Express Yourself with Behavioural Expression (Part 4)

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

“If you told someone with dementia a thousand times and he still doesn’t understand, then it is not the person with dementia who is the slow learner.”

Basic Models of care

1. Physical and functional needs are considered crucial in retaining ability, health and promoting wellbeing of a person living with dementia. 

Diet, hydration, hygiene, and all activities of daily living, are basic needs for us all to maintain satisfactory levels of health. 

These areas are usually tackled quite well, nonetheless there is a more intricate approach required in maximising care for any person. 

There is more to life than just ensuring a person eats a balanced diet and has clean clothes. 

2. Ensuring all additional medical conditions are managed successfully, such as chronic pain, is unfortunately, poorly managed. 

This in itself may trigger stress related responses, due to discomfort, suffering and unalleviated symptoms of chronic illness. 

It seems logical to manage all the conditions a person lives with, so that the symptoms do not cause ongoing distress, and a person is not forced to communicate anguish through stress related responses. 

3. The basic philosophy of care for people living with dementia is provision of familiarity, including choices, preferences and routines, through maintenance of a holistic framework. 

Caregivers should appreciate continuation of all these specific needs, as this will empower a person living with dementia and they shall experience less trauma related to significant changes within their life. 

This upholds a more dignified and respectful environment for the person living with dementia. 

We cannot enforce our own task orientated habits onto someone else, whom may struggle with the capacity to appreciate sudden change or may not have the ability to retain new information any longer. 

We must remind ourselves continually that our objectives, procedures, priorities, and routines are not essentially, nor automatically those of the people we care for. 

Our attitudes and methods can inextricably become duty motivated, detached, distressing, and invasive to a person living with dementia and assault their personal space. 

We are often likely, the triggers that incite more dramatic stress related responses. 

Imagine I had pain and I couldn’t tell you – would you know how to help me?

People who are living with any of the following conditions may exhibit behavioural expression (this includes people who do not live with dementia!): 

Dementia – (all forms of dementia) 

Psychiatric conditions – (includes depression, bi polar, schizo/affective, panic disorder, anxiety and agitation) 

Acute Delirium – (infections such as UTI, chest infection, pain, medications, unmanaged conditions, changed environment) 

COAD – (hypoxia thus confusion and delirium) 

Electrolyte imbalance 

❖ Concussion 

Endocrine disorders – (eg. diabetes) 

Seizure disorders – (eg. epilepsy) 

Sleep disorders – (eg.insomnia) 

Grief and loss 

Some forms of behavioural expression in all people regardless of living with dementia or not: 

Psycho social /emotional– agitation, anxiety, nervousness, worry, fright, crying, panic, irritability, hoarding, withdrawal, loss of interest, lowered self-esteem, dependence on others/friend/family member, distress when left alone, constant calling for help, hysteria. 

Physical – rocking, banging, tapping, patting surfaces, rubbing surfaces, picking clothes or skin, picking things from the air, grabbing, digging nails in, slapping, hitting, punching, biting, pushing, spitting, kicking, constant dressing and undressing, unpacks and repacks drawers, rummaging, faecal smearing, throwing, getting up and down, restless, ripping, shredding. 

Resistiveness – to care, to therapeutic regimes, stiffening during transfer, pulling back. 

Verbal – screaming, shouting, yelling, load groans, loud singing, repetitive, interrupting, sarcastic, argumentative, criticism of care, constant complaints, swearing, strange noises, laughing uncontrollably. 

Walking without an aim – aimless pacing, anxiously searching whilst walking, absconding, getting lost constantly. 

NB: walking around or strolling happily is actually NOT a behaviour. 

Intrusiveness – intrusion of others personal space or private areas, touching other’s belongings. 

Hallucinations/delusions – accusations of theft, seeing people and things that are not evident, hearing voices, talking to people that are not there, smells things others cannot smell, paranoia, thinking people are in danger. 

Danger to self or others – walking without aids, non-compliance to therapeutic regime, unsafe smoking, self-mutilation, destruction of property, eating inedible objects, climbing, alcohol abuse, falling over on purpose, attacking others for no reason. 

Disinhibition – removal of clothing, crude and suggestive comments, loss of impulse control, public masturbation. 


Medical: as discussed above. 

Lowered stress threshold: anything that creates pressure can generate a stress related response/behaviour. The aim is to ensure any trigger that creates stress is identified and removed. 

Caregiver attitude – disrespect and dehumanizing a person, not looking at strengths but weaknesses, taking behavioural expression personally, becoming reactive or defensive towards a person’s behaviour, negative/subjective attitudes, inability to enter the persons reality or understand their perspective, showing frustration, becoming anxious and agitated and exhibiting this in your own response to a person, lack of tolerance and patience, unfair expectations of a person’s ability, not validating the reality of another, negativity, rushing a person, poor communication by the caregiver, rudeness, ignoring a person. 

Lack of insight: people living with dementia may lose insight so may place themselves at risk or become agitated/frustrated – e.g. walking without a walking aid because they do not think they need it/a diabetic eating packets of sugar. 

Agnosia: inability to recognise objects/things any longer – e.g. If the memory of what a toilet looks like and what it’s for, cannot be retrieved any longer, then that person will not be able to recognise a toilet, so may void on the floor, or in a pot, or in a corridor. 

Environmental: environment may be too noisy and bright or overstimulating, overcrowding, fear or anxiety related to small confined spaces or large open spaces, poor lighting/glare, clutter and obstacles that can increase sense of frustration, sterile, non-homelike environments/institutionalised, uniforms, shadows on the floor can look like holes/steps, under stimulating/bland/boring. 

Physical: chronic pain, other physical discomfort – e.g. Untreated pain, shortness of breath, any other medical condition that impacts on abilities and comfort, constipation, infection/acute delirium, depression, responding to hallucinations/delusions, lack of sleep/insomnia, excess energy, dehydration, poor diet. 

Emotional: frustration at not understanding/comprehension changes or not being understood, needs not being met as per choices and preference/holistic framework, unfair expectations that set the person up for failure, sense of loss/ loneliness, jealousy, fearfulness, humiliation, overwhelmed, boredom/lack of stimulation, over 

stimulation, poor self-worth and self-esteem, delusions/hallucinations, social isolation, grief/loss, disorientation to time and place, pre-morbid personality. 

Remember: triggers will be specific to individual persons

Eg.1. An old milkman, John, may get up at 4am every morning because for 50 years this has been his normal routine – staff try to make him go back to bed, and he becomes resistive, agitated and sometimes aggressive. 

The trigger is the caregiver not understanding John’s needs, his past, and disrespecting his current reality, which is, ‘he clearly has work to do’. 

Instead, validate Johns reality, take him to an area where there are familiar work items, milk bottles and crates, and allow him to get to work. 

Eg.2. An elderly lady scratches. bites and punches her carer every single evening when getting changed for bed. 

The trigger was not gaining a satisfactory past history/life story, thus not understanding a crucial time of growing up for this lady, nor how important it must have been to her as a child. 

The relevance of life stories is reinforced when it was discovered this lady lived in the Australian bush, and every night the entire family would change into clean ‘day clothes’ to sleep in, in case of bush fires. This was as preparation to evacuate. 

From that point on this lady would be helped into a clean dress instead of night wear, and the agitated behaviour ceased completely. 

Eg. 3. A gentleman was resistive every morning when his daughter tried to get him up at 7.15am so she could get to work on time by 9am. It would take her over an hour to get him up and both would become agitated by this routine. 

The trigger was not adhering to the gentleman’s choices and preferences regarding his usual time of arising. 

The second trigger compounded the first, because his other medical conditions were not considered nor well managed. 

This man liked to get up at 8am and had for 50 years. He also suffered from chronic back and joint pain, so by trying to move him BEFORE he had his pain relief, meant he would resist. 

Instead the daughter began gently waking her dad at 7.30-7.45 am, and she would give him a cup of tea in bed, with his pain medication. She would not get him out of bed and allow the pain relief to work. 

By 8am he would ‘get himself up’, and get ready with minimal assistance, thus it was much easier for the daughter to get ready for work, less stressful for them both, and the daughter still arrived at work by 9am. 

(Part 5 to follow) 

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