What is dementia? Part 2

Again this is not one of our original post but a reprint from https://kateswaffer.com/2016/09/19/what-is-dementia-part-2/A

There is no time today to write a blog, or for anything other than adding this graphic, which is also from our book, Diagnosed with Alzheimer’s or another dementia released last week. Like the umbrella graphic from a couple of days ago, this does not outline every single symptom but is an overview of what to expect from damage in the different areas of the brain. Again this was produced by my BUB, but the information within the boxes comes from Lee-Fay and myself; we felt a simple graphic like this would be helpful as an overview of the disabilities caused by the various symptoms of dementia, specific to which area of the brain is affected.

Source: What is dementia? Part 2


“What is dementia?” Part 1

One of the Questions that I am asked most is what is the difference between Alzheimer’s and dementia. Often the initial diagnosis is the catch-all phrase dementia. Then later after the disease progresses and further testing you may get a more specific diagnosis. For us, it was approximately 2 and a half years. We had the second MIR another round of test mostly memory tests, but also blood and urine tests and an extensive interview with a second neurologist. She confirmed that it was Alzheimer’s.

I have chosen to share another site’s in-depth explanation she has done a far better job of explaining than I ever could.

Currently I am working on a piece titled “What is dementia?” which I have decided to turn into a short series of blogs. So often, I am asked questions that I had imagined health practitioners would (and should) actually know the answers to if they are working in the field of dementia, but even some of the educated ones are operating under a lot of myths and misperceptions. Only last week, yet another registered nurse who has been working in a dementia specific unit for more than 20 year, asked me is Alzheimer’s disease dementia.

What this means, I think, is although I realise there is a lot of upskilling of medical and nursing staff going on in many countries, it cannot come quickly enough! Imagine if I worked in ICU, and didn’t know how to insert a cannula or resuscitate someone, a very simple procedure in an area like that. We would all, quite rightly, be outraged…


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The Story Behind The Name

Thanks for joining us as we share our stories, experiences, knowledge, good times and bad times. About the terrible disease of dementia. 

You might be wondering what the name has to do with dementia or Alzheimer’s. Well, I first came up with the name several years ago, after my wife had spent several weeks with her mother out of state. She was at the house and wanted to go somewhere our teenage son was at the house and had the car keys. He called me a told me that mom wants the keys to the car. After a little inquiry, I told him to go ahead and give her the keys. He protested, but I explained that I had installed an app on her phone and that I could locate her if she got lost. I knew where she was going and felt comfortable with the Nissan keyroute and felt that she knew it well enough to drive without getting lost or endangering her self or others. So, we hung up and a few minutes later my wife was calling me screaming that “our son” would not give her the keys. I spoke to him and he told me that he did give her the keys. I could hear my wife in the background saying “that is not the keys”. Granted it was not a conventional key but an electronic dongle which just needed to be in the car to start it. However, I knew at that moment we were at the end of her driving days.

It is one thing not to know where your keys are, but it is a totally different thing not to know what keys are.

As I am writing this we are into our seventh year of coping with this devastating disease that slowly steals the very soul of the people it possesses. It is a long slow journey that not only takes its toll on the PLWD (person living with dementia) but also the people around them.

That brings me to the second meaning of ‘What Are Keys’. I am forced every day to find new keys to help my wife as we battle this disease. I hope to share some keys that I and others have found that may help to unlock some of the anger, frustration, anxiety, that Pile of keys.jpgbefall the PLWD, caregivers, family, and friends. The key that worked yesterday may not work today. The change may be slow, or it may be sudden. Not only are forced to find new keys but you must have several locksmiths on call. Because the key may be lost, and you need someone to help may a new one or change the lock. I have several locksmiths in my life, support groups, Alzheimer’s Association, friends and family, outside caregivers.

Revolving_DoorAs the disease progresses you and the PLWD will pass through many doors. Some will be like a revolving door just going in circles, other will be like the fun house at the county or state fair fun, silly and happy, but the next door is fraught with fear. Some of the doors you will pass through many times. However, all the doors will eventually be locked the keys thrown away and the doors boarded up and nailed shut never to open again.

This disease is terminal, there are no survivors. There is no known cure. There are no known causes. Yes, it is known that Alzheimer’s suffers have plaques within the brain, but there is no smoking gun as to what caused those plaques. It is a very slow death as the brain deteriorates and the PLWD slides backward in their mental age abilities until they are but a shell of their former self. It is not just a disease of the elderly but strikes people in their 50s, 40s and even in their 30s. By the time most are diagnosed they have been living the disease for years.  The third meaning of ‘What Are Keys’. Misidentified keys or unknown keys. Have you ever looked at a keyring or old keys you have stashed in a drawer or box somewhere and tried to remember what those old keys went to? Well, I have, and I missed a lot of keys prior to my wife being diagnosed with dementia. First, I never thought that she was suffering from dementia. Second, I did not know the warning signs. Most cases of dementia are usually diagnosed in the later stages rather than the earlier stages. The keys and the doors were there, but we fail to open them. As we look around and go past the doors for 4, 5, 6, 7, 8, 9 or 10 or more years, earlier detection may help to slow down the progression of the disease.doors_instu

LocksmithThat brings us to the fourth and final key within ‘What Are Keys’. The keys researchers need to cure this disease. By detecting the disease earlier rather than later they have a better chance of following the progression. You or someone you know could be that key. It requires early detection and enrolling in a clinical trial.    





FAST Scale

Functional Assessment Staging of Alzheimer’s Disease. (FAST)

Normal Aging

1. No difficulties, either subjectively or objectively.

Possible Mild Cognitive Impairment

2. Complains of forgetting the location of objects. Subjective word finding difficulties.

Mild Cognitive Impairment

3. Decreased job function evident to co-workers;
difficulty in traveling to new locations. Decreased organizational capacity.

    • expected duration for this stage 84 months approximant mental age 12+ years.

Mild Dementia

4. Decreased ability to perform complex tasks (e.g., planning dinner for guests), on occasion, handling personal finances (forgetting to pay bills), difficulty shopping, etc.

    • expected duration for this stage 24 months approximant mental age 8-12 years.

Moderate Dementia

5. Requires assistance in choosing proper clothing to wear for day, season, occasion.

    • expected duration for this stage 18 months approximant mental age 5-7 years.

Moderately Severe Dementia

6a. Difficulty putting clothing on properly without assistance.

    • expected duration for this stage 4.8 months approximant mental age 5 years.

6b. Unable to bathe properly; (e.g., difficulty adjusting bath water temperature)
occasionally or more frequently over the past weeks.*

    • expected duration for this stage 4.8 months approximant mental age 4 years.

6c. Inability to handle mechanics of toileting (e.g., forgets to flush the toilet, does not wipe properly or properly dispose of toilet tissue) occasionally or more frequently over the past weeks.*

    • expected duration for this stage 4.8 months approximant mental age 4 years.

6d. Urinary incontinence, occasional or more frequent. 

    • expected duration for this stage 3.6 months approximant mental age 3-4 years.

6e. Fecal Incontinence, (occasional or more frequently over the past week).

    • expected duration for this stage 9.6 months approximant mental age 2-3 years

Severe Dementia

7a. Ability to speak limited to approximately a half dozen different words or fewer, in the course of an average day or in the course of an intensive interview.

    • expected duration for this stage 12 months approximant mental age 1.25 years

7b. Speech ability limited to the use of a single intelligible word in an average day or in the course of an interview (the person may repeat the word over and over.)

    • expected duration for this stage 18 months approximant mental age 1 years.

7c. Ambulatory ability lost (cannot walk without personal assistance).

    • expected duration for this stage 12 months approximant mental age 1 years.

7d. Ability to sit up without assistance lost (e.g., the individual will fall over if there are no lateral rests [arms] on the chair).

    • expected duration for this stage 12 months approximant mental age 0.5-0.8 years.

7e. Loss of the ability to smile.

    • expected duration for this stage 18 months approximant mental age 0.2-0.4 years.

7f. can no longer hold up their head

    • expected duration for this stage 12 months approximant mental age 0-0.2 years.
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