Friends, I see news stories almost daily about individuals living with dementia who wander away from the safety of their care partners. Many times they are found safely, but there are many stories where the story ends tragically. The Alzheimer's Association states that SIX out of ten individuals living with dementia will wander. They go on to say that half of those who wander, half will experience serious injury or death if not found within twenty-four hours.
These statistics are alarming. For over half of those living with dementia, the question is not IF but WHEN they will wander. The risk is real, yet many care partners assume wandering is not a risk for their loved one. Let's just put this into perspective a little... If you knew with 50% certainty that a child was at risk for being kidnapped, would you ignore the risk? I don't know of anyone caring for small children who would ignore this risk without putting some safety precautions in place. This comparison may seem overly dramatic to you but I feel that it is a fair analogy. Many times families allow situations to escalate to a point where clinicians like myself consider bordering on neglect/abuse.
Caring for someone living with dementia is NOT easy. Y'all, it's a marathon not a sprint. I get it, it is hard to manage care and safety for someone whose brain is dying 24 hours x 7 days week x 2-20 years. Yes, I said that right, dementia (brain failure) can last 2-20 years. I understand that it is hard to manage safety for a person living with dementia who will unknowingly put themselves in unsafe situations. That's why I often say that no ONE person alone can manage care for someone living with dementia for the duration of the disease. In addition to enlisting others to assist with care, it is essential for care partners to understand that part of the disease process is that the sense of curiosity remains intact while safety awareness diminishes.
As my dementia mentor, the world renowned guru, Teepa Snow explains - human beings develop curiosity first then safety awareness. We lose these in the reverse order. Consider a small child learning to navigate the world around them. They develop curiosity for the world around them, desiring to walk across the street without looking both ways, sticking their little fingers inside that electrical outlet, cuddling up to a dangerous animal, exploring what setting exists at the bottom of those stairs. We recognize that they are naturally curious and that it is the responsibility of those around them to keep them safe. When a person's brain is dying because of dementia (a progressive degenerative disease process resulting in brain failure and death) they lose their safety awareness before they lose their curiosity.
Before I go further, please understand that my comparison to a child is to explain the order in which the brains of human beings develop and die with dementia. I am in no way saying that adults living with dementia are children. They are adults that deserve to be treated with dignity and respect. At the same time, we must understand what is happening to their brains. If we stick with the analogy to a child, someone may argue that you can tell a child to look both ways before they cross the street, not put their finger in that outlet, recognize that cuddly animal may not be so friendly and to not go down the stairs unattended. Since they are learning and retaining new information, they will learn necessary safety awareness. Now, consider the person living with dementia who is not only losing safety awareness but also changes in their abilities to obtain and store new information.
Less dementia-aware care partners will rely on tactics like this... "Honey, I'm running to the grocery for a few items. While I'm gone, I need you to stay here. OK? Stay here. Will you promise to stay here while I'm gone? Yes, ok, great. Repeat after me 'I'm gonna stay here while you run to the store'. Understand?" The person living with brain changes nods, repeats, and agrees. Unfortunately, their brains may not be able to retain that information. So, fifteen minutes later they wonder where their care partner went, they get concerned and they go outside to look for them... and that's how easily these wandering situations happen. Even the most well-meaning care partner can experience this, which is why this topic is so important and must be taken seriously.
I'm going to jump off this soapbox (for now). If you would like more information on safety issues like wandering, comment below or reach out to me at rebekah@agingcarecoach.com.
Take good care friends and please don't become a statistic.
Rebekah Wilson, MSW
Aging Care Coach
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