Jan 8, 2012

Questions About Alzheimer's from a College Student

Are there any common misconceptions about Alzheimer’s at all that you would like cleared up?

By Carole Larkin
Alzheimer's Reading Room

Oh boy, I’ll say! But in the interest of brevity I’ll just list five of them. (There are a number of books out that go into further depth in answering this question.)

Dementia is another word for Alzheimer’s light.

Dementia is not a disease (although we use the word like it was one).

Dementia means a set of symptoms some of which are common to a number of diseases (over 70 diseases, at least).

Symptoms like, memory loss, confusion, changes in personality and others. Alzheimer’s is just one of those diseases. It apparently is the largest (the most number of people have it) .

Subscribe to the Alzheimer's Reading Room

Newer research has found that many times it does not exist by itself. It can and does exist with other types of dementias in the same brain. Dementias like vascular dementia, Lewy body dementia, fronto-temporal dementia and even Parkinson’s dementia, among others.

Most people have been “properly” diagnosed.

No, the minority of people with a form of dementia have been “properly diagnosed”, even if they’ve been to a doctor.

A proper diagnosis is not a 5-10 minute screening test (most common is the MMSE) and the doctor handing the person or family member a prescription for Aricept or one of the other cholinesterase inhibitors.

A “proper” diagnosis includes Neuropsychological testing (3-4 hours), a picture of the brain (MRI, PET scan) and specialized blood tests. Some people get spinal fluid testing as well.

One reason that a proper diagnosis is preferred is because some dementias are treatable ( a small percentage), and a proper diagnosis can lead to treatment if it is discovered the person has one of those. Additionally, it allows the family to get their legal work in order (Powers of Attorney, living wills or directive to physicians,) while the person is still deemed to be competent, thus saving strife and unneeded stress later in the person’s life.

Alzheimer’s and related Dementias are curable. 

Not yet. The best that we can do is slow the progression of Alzheimer’s down for some people.

There are 4 FDA approved drugs that may work on some people. The first 3 are cholinesterase inhibitors with the names of Aricept, Exelon and Razadyne. They work on one type of neurotransmitter in the brain to keep it pumped up.

The last one is Namenda. It works on a different neurotransmitter in the brain, again to keep it pumped up.

They are expensive (except Aricept- its gone generic) and have lots of side effects (especially gastro) for some people. For those people it’s probably worth it to use them in the early stages of Alzheimer’s. The problem is, you don’t know if they are working until you take them off of them and the person’s cognition takes a big step downward.

Restarting them will usually pick the person back up, but not all the way up to where they were before they were taken off the meds. It’s a kind of roll the dice proposition.

People with Alzheimer’s are being mean and nasty, paranoid and suspicious and lie on purpose. 

Actually, it’s the exact opposite. Their brain cells are dying in varying portions of their brains, so those portions no longer function like an undiseased brain does. Those people are prone to misunderstanding what we call “reality”. 

Their brains can’t process things (stimuli) as fast or as correctly as before. They can many times feel that something is wrong with their brains early in the disease. Some tell their knowledge out loud. Some keep that knowledge to themselves. At any rate it is very scary to think that you are losing your mind. 

Fear is with them day and night. People generally react to fear one of two ways; Fight or Flight. 

Fight comes out as anger, paranoia, agitation and other “negative” behaviors. Flight comes out as withdrawal inward. Sometimes people do both Fight and Flight. 

One of the things a caregiver can do to tamp down these behaviors is assure the person with Alzheimer’s that they are safe and loved. No one wants to be alone and in fear. 

People with the disease are trying to communicate their feelings and their communication skills are growing less and less. 

They get frustrated at this. Wouldn’t you? A constant positive feeling directed towards them is the way to quell their fears, at least for the moment.

Treat Alzheimer’s patients like you have always treated them, before their disease and they’ll straighten up. 

No they won’t. Their brains are dying. They are doing the best they know how to do. Really.

Be compassionate and forgiving to them.

Keep them safe, but encourage them to do everything they possibly can for themselves in that safe environment.

It keeps up their dignity and self esteem. Engage them with things that they like to do and that they can succeed at. Hold them, touch them gently and give them love.

Carole Larkin MA,CMC,CAEd,QDCS,EICS,
is a Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementias issues. She also trains caregivers in home care companies, assisted livings, memory care communities, and nursing homes in dementia specific techniques for best care of dementia sufferers. ThirdAge Services LLC, is located in Dallas, TX.

More Insight and Advice for Caregivers