Many people think their understanding of dementia depends on knowing what “stage” their loved one is in. On average, dementia lasts eight to 12 years between diagnosis and death. It is progressive, irreversible, and fatal since no cure has yet been developed. But the symptoms and progress of dementia can be unique to the individual, often defying any tidy organization into “stages.”
First, there is no single system to identify stages of dementia. Some dementia practitioners say there are three stages, some say four, and some say there are five. Perhaps the most widely recognized scale among neurologists is the Global Deterioration Scale developed by Dr. Barry Reisberg in 1983, which identifies seven stages. But then there is FAST — the Functional Assessment Staging Test – that subdivides these seven stages into 16! Confused yet?
I can understand how these analytical approaches to categorizing the progress of mental and physical deterioration caused by dementia can be helpful for scientific research into therapies that can improve quality of life, but how can identifying and talking about the “stages” possibly help our care partners who struggle daily with real-world dementia? Your assigning your loved one a “stage” does not make him or her feel any better; nor does it make your task any easier.
I believe that focusing on the so-called “stages” of dementia is at best irrelevant to good care, and at worst detrimental to a care partner’s emotional health and wellbeing. Not only can it paralyze the care partner with fear when they must look down that long road of future “stages,” but it also can cause them to focus on the medical aspects of the disease – which they can’t do anything about — rather than the immediate quality of life of the person they are caring for.
In short, talking or worrying about “stages” gets in the way of our living in the moment and focusing on the quality of life of our loved one in the here-and-now, rather than what they are going to be like at a later “stage” of the process.
I am all for care partners knowing as much as they can about the medical aspects of Alzheimer’s disease and other forms of dementia, but not if it distracts them from seeing their loved one as a human being who is experiencing real suffering that cannot be relieved one bit by wrapping it in a label that defines and numbers it as a “stage.”
We know there are going to be changes as the disease progresses, but fixating on when they will come and what they will look like takes us out of the moment and distracts us from helping our loved ones through the process with compassion, empathy, and understanding.
Until next time remember: “We all deserve the Best”
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