Elderly caregiving is an intimate and intricate journey, demanding a deep understanding of individual needs, especially for seniors coping with dementia. Caregivers are pivotal in offering support, necessitating a strong grasp of dementia. Resources like the UTAS MOOC on Dementia and the WHO’s Global Dementia Observatory provide crucial knowledge. Additionally, familiarity with a person’s background empowers caregivers to offer assistance and a better quality of life.
Encouraging lifestyle adjustments for dementia patients is essential in delaying its onset. Critical strategies are prioritizing early diagnosis, embracing engagement, and focusing on the present moment. Effective communication, almost speaking the language of dementia, is paramount.
Adapting living spaces for dementia patients involves creating personalized environments and removing hazards. Recognizing each individual’s unique needs is key in this process. Caregivers are urged to become the external brain (EB) for those with dementia, emphasizing a compassionate and supportive approach throughout this journey.
To shed some light on the same, we interviewed a home care industry expert to bring his perspective on caregiver support.
Who Did We Interview?
Berrie Holtzhausen, a passionate advocate for People living with Dementia (PWD), transitioned into activism in November 2020, now championing PWD’s cause as one of them. With a decade of dedicated activism, Berrie’s commitment to Alzheimer’s/dementia awareness in Namibia remains steadfast. Achievements from the past decade can be explored on the blog.
Berrie aims to bridge cultural misconceptions, researching witchcraft and Dementia in African cultures, aspiring to establish a Dementia-friendly Ovahimba Village, dispelling myths, and fostering awareness programs to combat ignorance about dementia, often misconceived as witchcraft in African cultures.
Let’s start by knowing what our experts think about the home care industry.
The most important is:
1. Knowledge of Dementia. Understanding Dementia. MOOC of UTAS [ University of Tasmania], online and free, is the best in the world. (https://www.utas.edu.au).
The Enemy of knowledge is not ignorance. It is the illusion of knowledge.
– Stephen Hawking
2. A good platform to acquire more knowledge is The Global Dementia Observatory [ GDO] Knowledge Exchange Platform of the WHO (https://globaldementia.org/en)
3. Knowledge [ history] of the person you are caring for. The more you know about the person’s background/identity/life history, the more equipped you will be to give a quality of care and a quality of life for the person with Dementia.
I would rather say to prolong the early onset of dementia:
1. Early diagnosis is paramount to achieve the above.
2. To reject disengagement from the life you were living the day before you were diagnosed.
3. Suppose multi-tasking was part of the above. Immediately focus on stopping it.
4. Live in the ‘here and now’ by focusing on one task/one thought/one goal/ one…..
5. Learn to be encouraged to focus and use all your senses to tap into your brain. For example, if I don’t see or hear, I will ‘forget’ that I have switched on the kettle when someone rings the bell at the front door. This is something I learned to practice every day, and I am prolonging my DEMENTIA without any medication and very little support for the last 3 years.
1. The best way to communicate with dementia patients is by learning to speak DEMENTIA. Again, MOOC online courses of UTAS [Understanding Dementia] and the Global Dementia Platform of the WHO are important. Always pay attention to the life history of the PLWD; learn to be a private Investigator to understand the UNMET NEEDS of the PWD. For example, aggression/Aggression is the INTERNATIONAL language of PLWD.
2. Always remember that the carer’s body language, facial expressions, and voice tone become increasingly the expressive language of a carer that a PLWD is ‘hearing’/understanding/interpreting.
3. Always remember that you, the carer, are more a student of DEMENTIA to become a good carer of PLWD.
4. If you don’t practice the above every day, you will always feel like a failure, and the tension between you and the PLWD will get worse; communication will frustrate you and leave you depressed. The latter is a risk factor for dementia.
It is about removing hazards for falls or other accidents that can be prevented. Still, it is more about how every individual perceives their world as the disease progresses because of the changes in their brain and loss of brain functions.
Dark places [closed curtains to keep the sun out or whatever reason] are a no-no in my world. Nightlights on the floor to guide the PLWD to the bathroom. No loose carpets. No flooring with patrons that can confuse or trigger hallucinations in PLWD. If there are steps in the house, paint different steps with bright colors [ Red/Yellow]. Only furniture that is practical and necessary to create a dementia-friendly home. Many pictures against the walls can help the PLWD to reminisce.
It is always good to remember that every PLWD is still an individual. For some, mirrors will be good, but only for some stages of their disease. But this I also mean:
Some changes in a PLWD home might be the same worldwide. Still, it is always important to remember the secret of creating a dementia-friendly and safe dementia environment is also a very personal thing and needs knowledge about the individual. I don’t believe in ‘One size fits all.’
Many refer to PLWD, Elderly, and Seniors [older adults] as synonyms. Dementia is not age-related but a permanent and progressive deterioration of the human brain, caused by many different diseases of all ages, even children as young as a few months or a few years. Yes, old age is a non-modifiable risk factor, but there are hundreds of thousands of young adults living with dementia.
My advice to caregivers is always about human beings living with dementia despite their age. When I am doing awareness and education as someone living with dementia, I always have 4 expressions to make my presentations personal but also educational, namely:
I am my Brain
I am not old; I am living with a terminal disease.
I am not forgetting; I am losing the functions of my brain.
It would help if you were my EB [ External brain]. That is what will make you a good caregiver.
Elderly caregiving, especially for those with dementia, demands a holistic approach. Empathy, tailored knowledge, and personalized care are fundamental. Encouraging lifestyle changes, effective communication, and adapting environments ensure a dignified and supportive journey for seniors coping with dementia, enriching their quality of life.
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