What is Dementia?

From the Caregiver’s Handbook by Kathryn R. Burke

Dementia is not a specific disease. It’s symptom, or a group of symptoms, related to memory loss and decline in thinking ability that negatively affect a person’s ability to perform daily activities. Dementia can be a symptom of  Alzheimer’s Disease (AD), but not always. It could be a symptom of something else. Compare it to a bad headache. Lots of things, like the flu, a fall, something you ate, or something really serious, like traumatic brain injury or stroke could cause your head to hurt, some worse than others, some curable, some not. Same with dementia—different things can cause it, some are fixable, some aren’t.

The most common form of dementia is  Alzheimer’s Disease (AD), which accounts for 60 to 80 percent of progressive dementia—you can’t reverse or cure it. There are some prescriptive medicines (drugs) that can slow it down, but none can stop it. Vascular Dementia is probably the second most common form of dementia, but it is (generally) treatable, and therefore not always classified as ‘progressive’ dementia.  Lewy Body Dementia (Dementia with Lewy Bodies, or DLB) is the second most common form of progressive dementia (although still often mis-diagnosed). Like AD, it’s a one-way, downhill journey. You cannot reverse it and there is no cure. And, most drugs either don’t help…or make it worse! So for Caregivers, helping someone with AD or DLB (or both; they often co-occur) will mean escalating care needs and reliance on behavioral therapy rather than meds. Whatever the cause of the dementia, as memory declines, you will eventually be a 24/7 caregiver, and in the final stages, most likely choose to move your Careé to a memory care unit in a skilled nursing facility. (Don’t wait till the last minute to research the ones in your area. Do it now, together.)

Dealing with a Dementia Diagnosis

A dementia diagnosis, when it comes, can be (and usually is) frightening. Many patients and their families refuse to accept it, and fight it once they do. Accepting the diagnosis, whatever the cause and symptoms, is the first step in caregiving. Learning to managing care for BOTH caregiver and Careé is the next step, and it takes team work. You are the Team Leader. As your Careé’s memory declines (or fluctuates and falters, as with DLB), it’s really up to you, the Caregiver, to learn and adopt the behaviors that will help you both deal with the underlying disease. It’s also important to work with your doctor and figure out what’s causing the dementia, because symptom management, prognosis, and medical therapies are not the same for all forms of dementia. Remember, dementia is not a disease, it’s symptom of a disease.

Finding Help
Wherever you are on your journey, whether you know the causes of the dementia or understand its symptoms or how to manage them, find people who can help you cope. Because that’s what you are doing, or trying to do: cope. Medical providers can help, but their time is limited. You need to talk to people who have been there, are there, are headed there with you. And that means, you join a Caregiver’s Support Group!  If you can find a group near you, go. No excuses. Go. Many families are dealing with dementia. You are not alone. Reach out beyond your neighborhood.  Go online. Read, join forums and online support groups. Learn to recognize symptoms and understand how to manage them. Keep a journal—for yourself, and to share with medical providers.

Most important, maintain your own emotional balance and physical health. Stay positive. It’s a tall order.  Here are some links that may help you. You are not alone.

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