Dementia - What is the end game?6/4/2020 Having watched vascular dementia take over my father’s life, I often asked myself the question “Where is the balance between supporting the person living with dementia and his/her family versus research and treatment options”? Dementia is a cruel and debilitating disease and its impact on people, families and friends is both challenging and shocking. The greatest challenge that I witnessed was constantly remembering that my father was not just a diagnosis or a statistic, he was a human being with feelings and human rights just like me. He deserved and had the human right to be treated with dignity and respect at all times. It is estimated that there will be about 536,164 people living with dementia by 2025. It is the single greatest cause of disability in Australians over the age of 65 years, and the third leading cause of disability burden overall. It is the second leading cause of death in Australia.
My lived experience of caring for my father taught me so much about valuing people and what is really important. He was a father, he was my mother’s husband, he was a sibling, he was a friend, he was not a child. Yes, he did require care and support from us, but we were his family who cared for him, which is very different to being labelled a carer. My father did have care provided by community support workers, which provided much needed respite for my mother to do everyday jobs, like shopping as well as some of the things that she enjoyed. Language is so very important; after all it is all we have to communicate, regardless of whether it is spoken, written, verbal, digital or pictorial. The term “Carer”, whilst accurate in terms of providing care is not always helpful language, because many Carers are wives, sons, daughters, friends and in some cases, they are paid workers. The risk in using the term “Carer” is that the person with the lived experience is ignored and all discussion and/or communication is directed at the Carer. This may leave the person living with dementia completely isolated and out of the conversation, the very important conversation that is about him/her and his/her needs and wants. It cannot be overstated that there is a person trapped in a failing memory and sometimes they may experience glimmers of reality and memories to discuss. People with dementia do not become deaf when diagnosed, they will always have feelings and rights. Taking the time and being curious about a person’s life experience and genuinely listening to their stories is life giving and critical. Person Centred Care/Person First Paradigm is often completely misunderstood. Person centred care does not mean that the person is sitting in the room. Person centred care is about creating the space for the person to be central to the discussion taking place, being given a chance to answer questions about him/her self, if at all possible. It is about respecting the individual’s self-expertise; it is about inclusion and human rights. The example below highlights an experience that may happen in many aged care facilities today: Staff member: “It’s dinner time, would you like to come to the dining room”? Resident: “No”. The staff member leaves the room and the resident does not go to the dining room for dinner. Upon further investigation with the staff member you may find that when questioned about this situation the staff member may say, “I have asked the resident and he/she said no. I have to respect his/her decision. We do person centred care here.” That is NOT person-centred care. This clearly highlights the need for management and staff to understand what person-centred care actually means and what a curious conversation might look and sound like. That conversation could have occurred in the following manner. Staff member: “It’s dinner time, would you like to come to the dining room”? Resident: “No”. Staff member: “You were only telling me earlier today that you were looking forward to dinner tonight because roast beef is one of your favourite meals. Why don’t we just go for a walk down to the dining room to see how the roast beef looks? Let’s just go for a walk to the dining room.” Resident: Agrees to the walk to the dining room. The staff member leaves the room with the resident and they walk together chatting along the way to the dining room. When they get to the dining room the resident is encouraged to sit down and have his roast dinner. Being patient and curious with people with dementia is essential, be prepared to hear the same story over and over again – “50 first dates, I used to say to my mother jokingly”! The aim is to coax the person into conversation and inclusion. Research is absolutely critical and the statistics suggest that we need solid investment into reducing the number of people who will be impacted by dementia. Research is critical if we are to discover new preventative and early intervention treatments. Science and medicine must reach into the future to prevent the growth of this cruel disease. But for me the end game is ensuring that the person living with dementia is treated with dignity, respect and inclusion, because his/her life matters. Comments are closed.
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