Is It My Fault? Understanding Dementia Progression

Let's address the common caregiver concern that goes something like this, "I am doing my best, but my partner with dementia is getting worse, am I doing something wrong?"

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As a dementia care partner, it can be challenging to watch your partner with dementia decline over time, despite your best efforts to provide them with the best care possible. You may find yourself wondering if you are doing something wrong or if there is something more you could be doing to slow down the progression of the disease.

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The truth is, many forms of dementia are progressive, which means that it will continue to get worse over time, regardless of the quality of care that is provided. This can be difficult to accept, but it is important to understand that the decline you are seeing in your partner is not necessarily your fault.

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It is essential to recognize that dementia affects each person differently, and the rate at which it progresses can vary widely from person to person. Some people may experience a slow decline over several years, while others may experience a more rapid decline over a shorter period of time. The severity of symptoms can also vary from person to person, with some people experiencing more severe symptoms than others. The type of dementia will impact all of this as well.

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It is also important to understand that dementia affects the brain, and though there are reversible forms of dementia, dementias such as Alzheimer's disease, Lewy body dementia, frontotemporal dementia, vascular dementia currently have no cure and the brain is slowly dying. While there are treatments available that can help manage symptoms and somewhat slow down the progression of the disease, there is still no medical cure. Okay?

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One of the most important things you can do as a dementia care partner is to continue to educate yourself about dementia and the specific type of dementia that your partner has, if it is known. This can help you better understand their symptoms and how to manage them effectively. You can also learn about different strategies and techniques that can help make caregiving easier and less stressful.

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It's also important to know and understand that not every symptom your partner presents with is due to their dementia. There could be another underlying cause to their symptoms that requires a follow-up with the doctor and potentially even medical intervention. So, if your partner is exhibiting a sudden change in behavior or a sudden decline in their ability to function, it's important to follow-up with the doctor. This is probably the biggest "mistake" I see care partners make — assuming that everything is the dementia and not following up with the doctor when there is a sudden decline. So, if this is the missing piece to the care you are providing, it could be an area for improvement. Okay? Also, if your partner is unopposed to doctor visits, regular check-ups with their primary care physician, as well as consultations with specialists such as neurologists or geriatricians who have experience in treating dementia can be helpful as well to make sure you are crossing your T's and dotting your I's during your best effort to provide great, well-rounded care.

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But, all-in-all, please don't blame yourself for your partner's decline. I believe that you are doing the best you can with where you are at in your journey. And, unfortunately, due to the nature of the disease, despite even your bestest of efforts, your partner will still decline — the decline will just look different for everybody. Okay?