A guest blog post by RN/MHlthSc Leah Bisiani
What might someone living in the mid and later stages of dementia want to communicate with us if they could?
In my heart, I believe they would wish those caring for them to continually search for fresh and innovative ways to preserve their abilities, enable their self-expression and help them live a life free of the constraints that society places on people we call “different.” I also believe it’s our duty to honour those wishes despite the complex challenges dementia care presents. Further, I believe listening to people who live with dementia is the key to success as they alone can provide us with real insight into this disease.
Unfortunately, the stigma and misperceptions about Alzheimer’s disease (and other dementias) get in the way of effective listening. Furthermore, the misperceptions and misunderstanding about of behavioural expressions are often based on archaic, ageist, and negative stereotypes.
We tend to see behaviour as a result of a person ‘misbehaving’ or being ‘disruptive and attention seeking’ rather than as an expression of unmet needs. These erroneous beliefs result in unfairly judging and labeling people living with dementia, and lead to them being sedated with antipsychotic medications.
It’s time we reassessed our attitudes and deepened our understanding of dementia to create approaches based on empathy and compassion.
How frustrating it must be for people who live with dementia to be unable to effectively communicate their needs! Can any of us really comprehend the reality of those who live every day with dementia? How would we feel if we lived in a world surrounded by others who tried to impose their routines and their ways of living on us, and who didn’t seem to understand what we wanted and needed? How would we react?
We must not push our personal choices onto others. Doing so negates their value and relevance, and strips them of their personhood and the integral place they hold within the world. Instead of seeing behavioural symptoms as results of dementia, we must understand that they are expressions of need or underlying distress, which are often triggered by the interaction between people living with dementia, their caregivers and their environment.
In the complicated domain of behaviour management and dementia care, we must:
- Understand the world through the eyes of the person living with dementia, and capture their perspective
- Use our strengths, abilities, compassion to understand and assist them
- Be creative and imaginative
- Develop person-centred care models and maintain personhood
- Take into account and adhere to the specific and distinct preferences and choices of each individual
- Promote an uplifting and joyous lifestyle
- Maximise quality of life
Implementing these principles will help us to look deeper into ourselves, join people living with dementia in their reality, and open our hearts to love and compassion.
Leah Bisiani Dementia Consultant/Masters Health Science is a registered nurse, researcher, author, and dementia care advocate. She promotes uplifting and joyous environments for people living with dementia so they may continue to live their life as they know it and retain the spark to thrive and engage with the world and people around them. She develops care models that allow care partnere to create environments which are empowering and enriching to people living with dementia. She shares her knowledge to all sectors within the health care industry, with a particular focus on community support. Leah blogs here.
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