Oct 12, 2018

Understanding the Unequivocal Rights of People Living with Dementia: Express Yourself with Behavioural Expression (Part 7) 

Please ensure you have read the published Part 1, Part 2, Part 3, Part 4, Part 5 and Part 6 of this article, and have located the relevant appendices.

“Go and love someone exactly as they are. And then watch how quickly they transform into the greatest, truest version of themselves. When one feels seen and appreciated in their own essence, one is instantly empowered.”

– Wes Angelozzi

Bio psychosocial/communication

Understand the life transitions of the person in every way

Bio-psychosocial needs are essential elements related to understanding a person, and the specific triggers to behavioural expression, thus could be perceived as a possible technique that promotes maintenance of the ‘essence’ of a person. 

That spark of life within us all must be kept alight; otherwise, if we inadvertently crush this light, the existence of a person living with dementia may be crushed and have naught meaning. 

Developing a relationship with a person so that you can communicate with them effectively, involves us making the effort to establish trust and rapport, to enable each individual feels comfortable, and will not feel intimidated by what you are asking them to partake in. 

These are basic areas that require our full understanding in relation to the life transitions of another, thus link into the possible triggers to their stress related responses. 

  • Gender 
  • Growing up and family life 
  • Educational level/schooling 
  • Career pathway 
  • Demographics – where they have lived 
  • Marriage, divorce, children and death 
  • Culture, spiritual needs and religion 
  • Sexual needs 
  • Hobbies and interests 

The language of dementia

We all deserve to be treated with respect and dignity throughout our lives, just as we are all of value and unique in our own way. 

Thus, when we communicate, we need to interact in a manner that shows respect for that individual and their needs. 

Imagine how isolating, problematic and exasperating it must feel to be incapable of communicating verbally any longer, when throughout a lifetime of experiences, you have always used this basic skill to interact with others. 

Envisage also, when those you are attempting to interact with, cannot understand you because of their reliance on the verbal aspect of communication. 

Communication is the glue that holds much of human life together and a central stimulus within the individual life cycle of us all. Through the ongoing development of, and the means we utilise to communicate, most human cultures have the ability to interchange information, concepts, mood & sensations. 

Developing the ability to communicate effectively with other persons is one of the most crucial aspects within our life evolution, as we often define ourselves based on how we develop our relationships with others throughout this time. 

Functional decline in older people can influence communication when related to sensory aptitude, because unavoidably, as a consequence of old age, this generates impaired hearing and sight. 

If we do not spend time trying to establish a relationship with a person, we will not connect effectively with them, whether they live with dementia or not. 

Our dependence on dialectal aspects of language is so solid and rigid, it takes great determination to fight it. 

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. 

Instead of continuing our attempts to relate to a person living with dementia in the exact way we communicated with them prior to the commencement of their cognitive decline, should we not attempt to develop a fresh and more successful method of communicating. 

It is the family and caregiver’s responsibility, to listen, watch, understand and assist in enabling communication links to establish over time, empowering people living with dementia to interconnect effectively. 

As caregivers, we cannot expect the person with dementia to try any harder. 

Instead we are the ones that must put in the effort to appreciate and comprehend what the person is endeavouring to communicate, why they are trying to communicate a specific issue, and how we can resolve it. 

We should be willing to cross the threshold into the world of people living with dementia, with all its confines and limitations, instead of expecting them to act within ours. 

More importantly, giving value to the person within, and respecting their right in having a say regarding their own life experience, helps establish crucial needs. 

If we truly ‘listen’ to the person living with dementia, it is possible to understand their methods of communicating, thus open the door to a new world between those attempting to connect. 

Therefore, the element required in supporting people living with dementia to experience success in communication, is valuing the strengths that are retained, and assisting them to communicate in ways that make them comfortable. 

If we speculate and assume what people living with dementia are attempting to communicate, and get it entirely wrong, are we not being irresponsible in dismissing this interaction as worthless or irrational? 

How very conceited of us. 

We, alternatively, should commend them on their resourcefulness in producing a distinct method of communicating that compensates for their cognitive difficulty. 

It’s much more than what we do for them in return. 

Hence, credit must be afforded to these inspiring and courageous people who live with dementia, as we make it eternally difficult for them by our rigid lack of understanding. 

Respecting someone and upholding their dignity involves honouring their individuality and intricacy, their preferences and choices, their need for control over facets of their lives, and always respecting the necessity to have those selections and partialities considered and provided. 

Dehumanizing and disrespecting others by not providing choice, may create an environment in which the person may feel isolated within their reality, with no means to communicate their needs and preferences. 

Furthermore, it is possible this generates situations in which care needs are once more, assumed, and the rights of the person living with dementia ignored. 

This can appear, and is, to people living with dementia, a total disregard of their personal choices. 

By labelling the individual and withdrawing them from normal interaction, we can precipitate the kinds of features and behaviours which we then consider evidence of the dementia. 

This in turn magnifies our own distorted responses, which triggers deeper distress within the individual. 

Understanding behavioural expression in dementia care could be considered one of the most time consuming, and frustrating tasks for carers, but consider the never-ending frustration for the person living with dementia. 

A physician once said, “The best medicine for humans is love.” Someone asked, “What if it doesn’t work?” He smiled and said, “Increase the dose.”

Converting ill-being to well-being

Boosting self-esteem, increasing self-worth, relieving boredom and alleviating loneliness, promotes a maximised lifestyle and a reduction in stress related responses: 

  • Thus, all of the above discussed interventions must be utilised to convert illbeing to wellbeing. 
  • Assist a person in the areas they require, and provide prompts, support, reassurance, cues and encouragement to help maintain other needs with some degree of independence. This is excellent for promoting self-esteem and self-worth. “If you don’t use it you lose it”!
  • Reduce demands and unreal expectations. 
  • Give praise for every achievement no matter how small; always look at what a person can do as opposed to what they cannot. 
  • Create situations where the person can experience success and acknowledge that success to raise self-esteem. 
  • Include a person in the day to day running of their home and make them feel needed. e.g. Podding pea’s, raking leaves, folding serviettes. This will enable a person to retain a sense of belonging. 
  • Use positive statements as opposed to negative.eg. Don’t say, “Come on Mrs. Smith, you have to have your shower RIGHT now”. Instead say, “Hi Mrs Smith, wouldn’t it be lovely to have a lovely warm shower on this cold day?” 
  • Never treat any person disrespectfully or in an undignified way. 
  • Nostalgia and reminiscence are important ways to retain a sense of self, memories and personal history. 
  • Laugh and inject humour into the lives of a person. 
  • Ensure that, the more advanced the dementia, the more rest periods are required to avoid stress related responses directly related to being overtired, exhausted and not having time to recuperate after activity. 

“NEVER use the created judgemental term ‘sundowning’ for a situation WE create by our poor insight.”

Please see Appendix 3.

  • Be empathetic, understanding, compassionate and caring! 
  • Animals, children, (sometimes), babies, dolls, blankets, teddy bears, friends, family, books, activity – any therapeutic tool that meets the need of an ‘individual’ should be permitted if it allays anxiety and despair and creates pleasure from core suffering. 
  • Outings and fun activity that continues life. 
  • Exercise does not have to be too physical, because gentle and passive exercise also promotes a positive endorphin rush. 
  • If a person is unwell and has difficulty maintaining their previous level of independence, adjust it accordingly and increase assistance. It is we who need to be eternally flexible to allow a person to continue feeling their life is balanced. 

I am living with dementia but can still make a killer gnocchi.

Let us lead by example, viewing the person instead of focusing on the condition of dementia, provide empathy and compassion, thus preclude medical professionals and the informal caregiver from struggling with malignant, stereotypical, archaic, negative beliefs. 

What I believe is, it is we who are the catalysts to creating much of the stigma attached to dementia, and the fault lays with us for generating this attitude. 

For all this viewpoint does is increase pressure and strain for the person living with dementia. 

By adjusting ourselves, we may effectively meet the specific and individual needs of those being cared for, thus value and honor their personhood, uphold the place they hold within the world, and maximize their quality of life. 

Consequently, it is evident that to effectively enhance lifestyle, by understanding the reality and the specific needs of every individual living with dementia, we might significantly influence their lives positively and minimise stress related responses occurring, by ‘listening’ to their behavioural expression. 

We need to recognise the essential unity of all human beings, despite whatever differences there may be in their physical, psycho social and cognitive capabilities. 

As caregivers, it is our responsibility to improve life quality and preserve the sense of identity of the people we care for. 

It could be assumed that many people living with dementia may, if they could communicate it, have the belief, trust and faith in those caring for them, to continually persist in searching for fresh and innovative methods of generating preservation of ability, and enabling self-expression, so they may live a life free of the constraints that society place upon people that are different. 

“Words don’t change lives, actions do. Failure is the opportunity to begin again more intelligently.”

– Henry Ford 

“Be the change you want to see in the world.” 

– Ghandi 

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  1. While I understand the point these articles are trying to make, I feel as though the author has little or no direct experience of caring for someone with dementia 24/7. As a carer I do my very best and when I read these articles I feel as though I have been judged and found wanting. While it just makes me a bit cross I think there is potential for negative impacts on some very vulnerable people.

    1. Hi Heather,
      Thank you for your comment and feedback. I’m sorry you have been left feeling this way and as you mention we are sure it’s not the authors intention. We will take this information onboard for future pieces.
      Thank you kindly
      HelloCare Team


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