What does Dementia feel like?

This post was written by ONSCREEN's Gerontology Advisor, Dr. Kerry Burnight. She is a nationally renowned gerontologist, the founder of The Gerontologist, Inc., and a nationally recognized aging expert determined to help others improve the second half of their lives. We hope you find this article helpful.

As a Gerontologist, it’s common to have someone pull me aside at a party to confide something they are worried about. Most often, the concern is about dementia. How they pose the question reveals pervasive misunderstandings about dementia. They’ll often say, “I’m wondering whether my loved one has Alzheimer’s disease or if it’s dementia”. Alzheimer’s disease is a form of dementia. Dementia is an umbrella term describing a collection of symptoms that affect ability to process information, remember things, and communicate with others. Alzheimer’s disease is one type of dementia and other types include vascular dementia, front-temporal dementia, and Huntington’s disease.

According to the World Health Organization, more than 55 million people live with dementia and 10 million new cases are diagnosed every year. It’s important to understand what dementia is, and that having memory lapses alone doesn’t always mean you have dementia. It’s like a three-legged stool. Memory problems are one leg of the dementia stool, you need problems in at least two other areas as well to have a diagnosis of dementia. That is, in addition to problems with memory, you need to have problems with two of the five other areas of cognition. These other areas are language skills, communication, focus, reasoning, and problem-solving.

What is it like to experience Dementia?

What does it feel like when one starts to experience symptoms of dementia? The experience varies, but there are common themes. One may experience short-term memory lapses like forgetting what they had for breakfast. Another early symptom of dementia is difficulty with communicating thoughts. A person may have a hard time explaining something or finding the right words to express themselves.

Here’s a list of behavior changes one might notice in a person starting exhibit symptoms of dementia:

• Having a hard time explaining something or finding the right words to express themselves
• Become seem more fearful or anxious than they were before.
• More easily upset when daily routines change or if they are in unfamiliar situations.
• Problems completing common tasks such as following a recipe, keeping up with bills, or doing something that takes several steps.
• Becomes more easily confused.
• Trouble remembering faces, knowing what day or month it is, or figuring out where they are.
• It becomes harder to follow storylines or conversations or TV programs.
• Repeat daily tasks, such buying the same things over again, asking the same questions in a conversation, or bathing again.
• Difficulty adapting to change or start, making uncharacteristic financial decisions, or a change in personality.
• Forget how to get to familiar places they used to have no trouble finding.

Spatial orientation can also get worse with the onset of dementia. John Wood, an award- winning art education teacher diagnosed with dementia, says “I would get lost in the building. I would forget where I was supposed to be next.”

Don Kent, a trial lawyer describes about the changes he experienced before he was diagnosed with Dementia. His dementia is called Lewy Body Dementia. Don explains, “Looking back I can tell that my thinking became a little cloudy, even early on. But the symptoms I recognized first were two things: one, a change of personality. I didn’t notice it so much as my wife and my son noticed it, and they said, ‘What’s wrong with Dad?’ I’ve always been a sort of laid-back person, very slow to anger and relatively cool under pressure. I was a trial lawyer, so in a courtroom you have to remain that way. And all of a sudden, I had this sort of explosive personality, very angry, saying mean things to people which I had never done before. At about the same time, I also felt a loss of my sense of taste, and I say loss because to me it was a loss, but overtime I’ve learned that it’s a hallucination, a taste hallucination. Of course, with Lewy Body we can have hallucinations with all of our senses.”

What causes dementia?

Dementia is caused by damage to the nerve cells in your brain. Damage can have many causes, for example: the accumulation of specific types of proteins in the brain; lack of blood flow to the brain; trauma to the head; vitamin deficiencies; a reaction to certain medications. Some risk factors are out of our control such as age and family history. But other risk factors can be controlled such as smoking, vitamin D deficiency, being sedentary, and not prioritizing sleep.

If you are concerned about changes in cognition in a loved one, it is a good idea to make an appointment with a neurologist. You may find that the problems are just from fatigue, lack of concentration, multitasking, medications, depression, or a urinary tract infection. The doctor may order a series of memory and mental tests, blood tests, or brain imaging tests.

To lower the odds of developing dementia, it’s recommended to stay active with friends, stay physically active to maintain strength, cardiovascular health, and flexibility. To keep the mind sharp, it’s suggested do the following:

• Quit smoking, drinking and other potentially mind impacting drugs
• Boost your intake of vitamin D
• Eat real food such as vegetables, fruit, whole grains, omega-3 fatty acids
• Prioritize sleep
• Stay socially active, visiting with friends and family frequently
• Review medications with a doctor
• Practice mindfulness and gratitude every day

What does a Dementia diagnosis mean?

A diagnosis of mild cognitive impairment or dementia feels devastating. It does not, however, need to be a death sentence. With treatment and early diagnosis, one may be able to slow down the progression of dementia and maintain mental function for a longer period of time. Helen Rochford Brennan describes her life after her dementia diagnosis, “It’s a different life, but it’s still a good life. Just because I have a cognitive impairment, doesn’t mean I can’t function. I’ve gone from thinking my life was over, to a place that I could never have dreamed of. My message is this: please do not lose your voice to dementia.”

If someone you love develops dementia, the best thing you can do is to listen and show them that you are there for them. Be present and in the moment. I’ve found that a sense of humor is essential as is the recognition that we are all in this together and all have limited time here on earth. Remember that repetition, outbursts, and confusion are not intentional or malicious. Go into the reality of the person living with dementia rather than expect them to conform to your reality. Don’t quiz the person or mention that they repeated themselve, and always remember to take care of yourself and enlist help.Like you, people living with dementia need to feel appreciated, respected, and loved. It’s frightening and frustrating to live with dementia so please do your best to make sure they feel safe, loved, and respected. Let other people help you. So often I see a spouse nearly kill themselves caring for a love done with dementia and yet there are adult children or friends who would help if only they were asked. So don't hesitate to ask for help!

Kerry Burnight, PhD
The Gerontologist

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