May 16, 2018

Dementia: Negative labelling is undesirable and harmful

Those who are caring for people living with dementia must try to see the world through their eyes, says Leah Bisiani, managing director of Uplifting Dementia, who spoke at the 2018 National Dementia Conference on Tuesday.

Dementia may well challenge us because of the fundamental complexity of the condition, thus within the complicated domain of understanding behavioural expression, it is more beneficial to appreciate the world through the eyes of the person living with dementia.

This may enable us to use our own strengths and abilities to capture life from their perspective without the judgemental labels we as cognitively aware individuals tend to place upon them.

To care for a person living with dementia in a respectful and dignified manner, to enable them to continue living life as they know it, requires a major conversion of ‘our’ inner fears and impressions associated with dementia

Subjective terminology such as “victim”, ‘afflicted”, “burden”, “suffering” are demeaning and derogatory, providing dehumanising attitudes, said Bisiani.

This is especially relevant when describing behavioural expression.

For example, “behaviours of concern”, “challenging behaviour” and “BPSD”: are especially invalidating typecasts that do not reflect the actuality of behaviour nor dementia.

Similarly, words such as “problematic”, “inappropriate”, ‘disruptive’ and “attention seeking” are essentially prejudicial assumptions and incorrect.

It is necessary to perceive behavioural expression in relation to the person, the possibility that needs are unmet, as well as the subsequent frustration in loss of ability to effectively communicate those needs.

Every individual will be affected differently by dementia, and every type of dementia has dissimilar symptoms and progression.

We can only care appropriately for a person living with dementia if we know what type of dementia they have.

Finding out everything you can about a person’s individuality and lifestyle, allows us to adjust ourselves accordingly so that the transition into aged care person care ensures a person-centred approach and honouring of personhood is maintained.

Ms Bisiani said that by taking exceptional care when developing assessments and care plans, knowing everything about the person and their life transitions, allowed the development of specific, individualised interventions that prevented and eliminated the need for 45 people living with dementia to exhibit any behavioural expression. These people continued to maintain independence and continued to live life and thrive.

When establishing holistic strategies to care for people living with dementia it is crucial to focus on bio psychosocial needs and not just medical interventions.

Of course, other medical conditions must be well managed and resolved, such as chronic pain, depression or acute delirium, and maintenance of basic care needs such as nutrition and hydration.

Knowing the essence of a person requires us to delve into their soul and embrace their culture, religion, spiritual, emotional, psychological and sexual needs.

Creating environments that are stimulating and homelike, and minimising change allow choices and preferences to take precedence and retain independence and self-worth.

All of us express ourselves behaviourally throughout our lives, so we should stop judging people who live with dementia based on their behaviour.

However, if there is a catastrophic event and a person is aggressive then these points may be useful.

  • Remove distractions
  • Respect personal space
  • Remain calm
  • Don’t argue back
  • Be kind
  • Be understanding
  • Be calm
  • Use non-threatening eye contact
  • Use their name or preferred title
  • Be respectful
  • Don’t overwhelm with too much information
  • Don’t patronise
  • Leave the room if required
  • Don’t use any form of chemical restraint

Chemical restraint and sedation overuse is a form of neglect and elder abuse, said Ms Bisiani.

We do not drug people for being different or attempting to communicate.

To understand a person, it is necessary we develop trust and a rapport, by respecting and valuing them as a person in their own right.

We must always be aware of our own body language, because if we remain too focused on our task orientated lives, then we tend to rush, or become anxious ourselves.

People living with dementia will pick up on our ‘behavioural expression” and may respond in kind.

Hence the importance of nonverbal body language revealing very easily exactly what the person may be trying to communicate.

Sometimes our reality of a situation is more confusing, than the person living with dementia’s perception of a situation.

It is always therefore preferable to confirm and validate the person’s reality.

Ms Bisiani gave the example of a women who was asking for her husband constantly. He had died many years earlier. Rather than reminding the lady that her husband had died, Ms Bisiani suggested validating her reality – for example, telling her “he had just nicked out and would be back soon”. The lady would accept this as reasonable within her reality, and it would ensure she did not needlessly relive the trauma and grief every time we told her that her husband had died.

When in the advanced stages of dementia, people are still able to maintain independence and enjoy life. Ask them what they want to do and show them you care enough to provide it. Ms Bisiani gave examples of tai chair, dancing, singing, going to markets, eating fish n chips on the beach, and visiting the zoo.

Music, singing, gardening, cooking, artwork, are all activities that, when are a specific individual choice, are likely to be enjoyed if it has always been part of the person’s life.

Bisiani gave an example of a person living with dementia who had not spoken for years, breaking out into song the moment their favourite music was played.

Enabling people living with dementia to continue performing preferred activity is vital to retaining control of one’s life.

Sexuality and sexual needs cannot be overlooked as it is an area often handed badly. This is mainly due to it being distressing for family, who have usually been created because of this natural act.

Ms Bisiani stated that being able to act on your sexuality is an integral human right, though it of course must be kept appropriate and private.

Providing beautiful, peaceful, homelike environments can be a huge benefit to people who are living with dementia. Ms Bisiani suggesting building sensory gardens, and private, cosy rooms to relax.

People who are living with dementia are still people, and they still have stories, and they still have character, and they are all individuals, and they are all unique. They just need to be interacted with on a human level.

This article was jointly written by Caroline Egan and Leah Bisiani.

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