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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My Alzheimer's Story 
I would have to agree with your points. They should be in the mission statement for all homes. Mum’s home was only for those with advanced dementia. The residents in there were allowed to do what they wished so long as it was safe. My mother spent many hours sitting in the office chatting away to the office manager. I doubt if that would happen in many homes. Medication was not encouraged. I wondered if she needed medication to help with her anxieties but the doctor and staff wanted to try other ways to deal with it which they did. Having said that it can vary from home to home.
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Diane, re-: “I doubt if that would happen in many homes.” You got that right! I think the place your mom was in was an exception – can you tell me the name of that? I’m trying to make a list of exemplary places around the world. You might be interested in this 2011 TVNZ documentary: http://tvnz.co.nz/sunday-news/new-hope-dementia-sufferers-and-their-families-video-3815993
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When Mum needed to go into care I asked people who knew about the Homes. Mum was in very advanced stages of Alzheimer’s. Luckily a family friend who is in the medical profession guided me on this. I was told not to take notice of the bricks and mortar but to watch what happened in the home with staff and how they interacted with the residents. I was told this was the home where they truly understood how to cope with the behaviours associated with Alzheimer’s. Mum was in Admatha Lodge which caters only for those with advanced Alzheimers. Residents can move around anywhere inside and out. It is a single story building. The building is OK but not one of the homes which look very sterile. There are two lounge areas and meals are served in the two areas. The kitchen was in the home so all the cooking smells were there. It is like two units but no doors between. Often activities are for all the residents ie concerts etc. my sisters were horrified when they saw the home and would just go in and take Mum out. In the final year this was not possible and they did see the worth of the staff.
John has been assessed at dementia level and is in Brookhaven. He is in a small unit in a bigger home which caters for different levels of care. The care is fine for his level but there is not as much of the caring as I saw at Amatha. All staff at Amatha were encouraged to develop relationships with all the residents and by staff I mean ALL, cleaners, chefs etc. I have not seen this in other homes.
Over here the government puts a maximum charge that homes may charge for dementia residents so the cost is the same anywhere.
If John was at the advanced level he would be in Admatha. I had hoped to be able to care for him at home until he was at that level but that was not to be. The majority of people with dementia often do not get to the advanced level.
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it sounds very welcoming, homey in person centred. I’m so glad your mom was able to pass her last days there ❤
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Regarding medication all medical people I have seen in both the homes do not advocate medication. I would not allow it!
Something else I forgot to mention is that all staff at Amatha are expected to do regular staff development and this is organised within the home.
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It sounds like a great place Diane – I wish we had more like it…
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Thanks to Lisa Bisiani for a thoughtful blog. Too frequently it is the overwhelmed staff/family member/facility that has the most difficulty caring for those with cognitive issues and too frequently over-medication becomes their go to choice in how to handle any behavioral issues. It takes time and training and willingness as well as an open mind to approach the framework that you mention. How fortunate that you were able to develop this care model and educate others about it.
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RE: “It takes time and training and willingness as well as an open mind to approach the framework that you mention,” yes, and it seems that few have open minds and are willing to commit to making change 😦 Thank goodness for forward thinkers likely Leah!
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Thank you for your blog. Is it okay for you of I translate it in dutch and use it? I will mention you wrote the original.
There are people that I would love to read this, and I think it has to be in dutch.
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I need to check with Leah Bisiani who wrote this particular post. Leah is a Dementia Consultant/Masters Health Science. She is also 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.
I’m sure she’ll be okay with it, but let me check first and I’ll come back to you.
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