Lost Too Soon: Learning How to Help Those with Dementia or Other Brain Illness

by Marilyn Sherrill, RN, MBA

Vizient Performance Improvement Senior Program Director

Have you ever had a loved one who suffered from dementia or some other brain illness? Have you had to watch them struggle and slowly fade away? Helplessness is a difficult place, for your loved one and for you. Everything in your being wants to stop this progression and make it go away — to bring your lives back to being normal, happy and peaceful.

Dementia usually begins with small behavioral changes, mostly little "annoying" things. For example, your loved one may frequently ask "what?" as if they are not hearing you or have a far-off distant look in their eyes. It's easy to whisk these instances away with excuses such as they are fatigued or distracted. But then eventually their changes hit you like a brick wall — something very real has gone wrong and impacted your day-to-day lives. I have witnessed this transition too many times, most recently with my oldest sister. When she told her doctor that she got lost on the way to the dentist's office, where she has gone for over 30 years, I suddenly realized the extent of what we were facing.

It is so hard to watch these changes. The person you once knew is now someone vastly different. I lose patience; she feels like she is "stupid," because she cannot do the things she used to do. We both must learn new and different ways to work together to manage her daily living. We now have to write everything down, so she can look at her notes to remind her of what we talked about, since she can no longer remember. I double-check her bank accounts to ensure things are accurate.

It's important to continue to allow her to try to do the things she has always done in respect of her dignity. It requires a lot of love, hugs and understanding. I remind her that she has an illness that is causing her struggles. Dementia is like any other illness that is not under a person's control, making it really important for everyone to find ways to adapt to change.

June is National Alzheimer and Brain Awareness Month. We commonly think of brain illness associated with forms of dementia and/or brain injuries. However, other diseases also may affect brain health. Alzheimer's disease (AD) is the most common cause of memory impairment and dementia in the elderly with disturbed memory function as a widespread subjective and/or objective symptom in a variety of medical conditions. The early detection and correct distinction of AD from non-AD memory impairment is critically important to detect possible treatable and reversible underlying causes. Other types of dementia include vascular, Lewy body and frontotemperal. Other illnesses that can affect memory and brain health include Parkinson's disease, Huntington's disease, epilepsy, amyotrophic lateral sclerosis, limbic encephalitis and multiple sclerosis (MS).

There is no cure or known cause for dementia. However, there are common symptoms in those who have been diagnosed and there is evidence that a healthy diet and physical and mental exercise can be helpful. Common facts about dementia include:

• Dementia is not a normal part of aging: The World Health Organization estimates 5% to 8% of those over 60 years old will live with dementia at some point.
• Dementia does not just affect older people: While most people living with dementia are over the age of 65, a small number of people in their 40s and 50s can and do develop dementia.
• Dementia causes more than memory loss: Dementia can cause difficulties with thinking, problem-solving or language that are severe enough to reduce a person's ability to perform everyday activities. It also can cause changes in mood or behavior.
• Dementia is usually progressive: As more brain cells become damaged and eventually die, the symptoms of most dementia types will gradually get worse.

Early diagnosis is extremely important in slowing the progression of dementia. My sister's diagnosis was at the stage of moderate dementia so it was too late to include her in clinical trials. But now that we have a definitive diagnosis, we can put together a plan for what she can do to slow down the progression. Her neurologist recommends that she follows good routines for meal and sleep times, physical and mental exercise and especially hand and eye coordination activities, such as playing the piano.

Honestly, for me, there is the unspoken fear of will this happen to me too? Will I know if or when it is happening? Years ago, one of my brothers gave me some good advice. He told me not to live my life in fear of things that may never happen. Live life to the fullest, while you can. Take care of yourself in body, mind and spirit. You have one body and one life — and what you do with it is your choice. No one can take that from you. While it has been challenging and incredibly sad at times, there is hope on the horizon.

Learn more from the National Institute of Neurological Disorders and Stroke.