We have reached the final stage of Alzheimer’s disease (AD) as defined by the Alzheimer’s Association: Stage 7 Very Severe Cognitive Decline — Severe or late-stage Alzheimer’s disease. There are many places on the Internet where you can get information about Alzheimer’s disease and when one is diagnosed with Alzheimer’s or has a family member diagnosed with the dreaded disease, one cannot get enough information.

One outstanding source of information is the Fischer Center for Alzheimer’s Research Foundation. They have an excellent Web site discussing the seven clinical stages of Alzheimer’s disease, but they break it down further into sub-stages. Below is the Alzheimer’s Association summary of “Stage 7 Very Severe Cognitive Decline.” It will be followed by a description of the Fischer Center’s sub-stages of stage 7.

This is the final stage of the disease when individuals lose the ability to respond to their environment, the ability to speak and, ultimately, the ability to control movement.

• Frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered.

• Individuals need help with eating and toileting and there is general incontinence of urine.

• Individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired.

According to the Fischer Center for Alzheimer’s Research Foundation, there are 6 consecutive functional sub-stages for stage 7. In brief, they are:

1. Speech is limited to approximately a half dozen intelligible words or fewer in the course of an intensive contact and attempt at an interview with numerous queries. (approximately 1 year)
2. Speech becomes even more limited — a single intelligible word. (approx. 1.5 years)
3. Patients lose the ability to ambulate independently. (approx. 1 year)
4. Patients lose the ability to sit up independently. Patients will fall over when seated unless there are arm rests to hold the patient up in the chair. (approx. 1 year)
5. Patients will lose the ability to smile. Only grimacing facial movements are observed in place of smiles. (approx. 1.5 years)
6. AD patients lose the ability to hold up their head independently. (approx. 1.5 years)

Keep in mind that these are not independent sub-stages. They can overlap. I never saw my father to this last stage, although I recall having to sit him up because he was always tilting to one side. It is really important even in earlier stages to have a chair with a side because they fall asleep easily.

Of the 35 million people in the world living with AD or a related dementia, those that receive the best care have the best chance of living the longest. Many pass away due to other illnesses. In the case of my dad, the official cause was pneumonia contracted after surgery for a broken hip from a fall in a nursing home. Although sometimes I wonder — did he have osteoporosis and did the broken hip cause the fall and not vice versa? Men don’t often get screened for osteoporosis and if that’s the case, the hip breaks first followed by the fall.

In just 20 years, the number of Alzheimer’s cases is expected to double. The longer you live, chances are you’ll find yourself in this unfortunate situation. Are you doing anything to prevent or slow down dementia?

Research shows that we forget 30% of what we’ve heard after 20 minutes, and 50% within a half-hour.

Continuing to use the stages as defined by the Alzheimer’s Association, Stage 6 is severe cognitive decline or also defined as moderately severe/mid-stage Alzheimer’s disease. As memory difficulties continue to worsen, significant personality changes may emerge and affected individuals need extensive help with customary daily activities. At this stage, individuals may:

• Lose most awareness of recent experiences and events as well as of their surroundings

• Recollect their personal history imperfectly, although they generally recall their own name

• Occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces

• Need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet

• Experience disruption of their normal sleep/waking cycle

• Need help with handling details of toileting (flushing toilet, wiping and disposing of tissue properly)

• Have increasing episodes of urinary or fecal incontinence

• Experience significant personality changes and behavioral symptoms, including suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding

• Tend to wander and become lost

One of the common problems is that the Alzheimer’s patient sleeps during the day and is awake at night. What a challenge for the caregiver. Can you imagine having your sleep interrupted every night? I do remember dad getting up at night and wandering around the house and needing help getting back to bed. I was always afraid that he would not know who I was and hit me. (He was a boxer in his youth). I could feel myself tensing up.

The big fear is your loved one wandering and becoming lost. In dad’s case, doors were always locked and someone was always watching him. However, many times when we’d take him out and upon returning, he would say he wanted to go home. No amount of convincing him that we were indeed at his home, was believable to him, but a short drive around the block and back home was generally enough to convince him. Of course, he could never tell us what “home” meant. His childhood home? His previous home? If only it was possible to read his mind to determine what he was trying to communicate.

According to the Alzheimer’s Association, there are seven stages of Alzheimer’s disease. In stage 5, there is moderately severe cognitive decline. This is the moderate or mid-stage Alzheimer’s disease. The Alzheimer’s Association says:

Major gaps in memory and deficits in cognitive function emerge. Some assistance with day-to-day activities becomes essential. At this stage, individuals may:

• Be unable during a medical interview to recall such important details as their current address, their telephone number or the name of the college or high school from which they graduated

• Become confused about where they are or about the date, day of the week or season

• Have trouble with less challenging mental arithmetic; for example, counting backward from 40 by 4s or from 20 by 2s

• Need help choosing proper clothing for the season or the occasion

• Usually retain substantial knowledge about themselves and know their own name and the names of their spouse or children

• Usually require no assistance with eating or using the toilet

Life becomes quite a challenge for the primary caretaker at this point. I was not the primary caregiver; my mom was, but my sister and her family lived in the same house so she was always available to assist. Mom never had a break, but each summer I would go to assist when my sister and her family went on vacation.

I do remember dad being frustrated with his situation at this point and he voiced his frustration. It is such a helpless situation. He definitely recognized me at this point and I remember the big smile he had to see me, although he wondered how I had gotten there.

Keeping in mind that there are no clear-cut boundaries that separate the stages of Alzheimer’s, we now move on to more obvious signs — Alzheimer’s Disease: Stage 4 Moderate Cognitive Decline. According to the Alzheimer’s Association, through a careful medical interview, the following deficiencies can be identified.

• Decreased knowledge of recent occasions or current events
• Impaired ability to perform challenging mental arithmetic-for example, to count backward from 75 by 7s
• Decreased capacity to perform complex tasks, such as planning dinner for guests, paying bills and managing finances
• Reduced memory of personal history
• The affected individual may seem subdued and withdrawn, especially in socially or mentally challenging situations

Going back to the couple in my last post, I mentioned that she took an extraordinary amount of time preparing instant coffee. I can only imagine that planning a dinner for guests would no longer be possible. In the case of him, he did not remember my stopping him to check on his shoes. In retrospect, I should’ve brought the other pair of shoes to him right away to see if it was his. However, since he insisted it was his shoes, I let it go. But had I brought him the other pair of shoes, I never would’ve had the opportunity to sit down and talk to him in his home. Everything happens for a reason.

So far we’ve talked about Stages 1 and 2 possibly being questionable as to whether or not a person does have Alzheimer’s disease. Stage 3 becomes easier to determine if it is Alzheimer’s and not a related problem such as anxiety disorders, depression, sleep problems, or medication. According to the Alzheimer’s Association, Stage 3 is Mild Cognitive Decline.

Because everyone is different, in Stage 3 it is not possible to definitively diagnose Alzheimer’s disease in everyone. In Stage 3 deficiencies are noticed by friends, family or co-workers, but also by anyone who has a meaningful conversation with the person. In a clinical testing or a detailed medical interview, problems with memory or concentration may be measured. Common difficulties listed by the Alzheimer’s Association  include:

• Word- or name-finding problems noticeable to family or close associates

• Decreased ability to remember names when introduced to new people

• Performance issues in social or work settings noticeable to family, friends or co-workers

• Reading a passage and retaining little material

• Losing or misplacing a valuable object

• Decline in ability to plan or organize

Recently, I went to visit a 90-year old church member and his wife. For the past couple of years, this member has been saying his wife has dementia and he was very concerned about her. Each time they attend a Sunday service, she has difficulty remembering and finding her shoes (we take off our shoes at our temple) and deciding which is her coat. However, in visiting and having a conversation with him, I realized that he also has a problem with dementia. He kept asking the same question several times. He was unable to remember the time sequence of our topic of conversation.

But the reason for the visit was because he unknowingly wore my husband’s shoes home after a Sunday service. Granted, they were both black and the same brand. However, he had a blue insert in his shoes and his was definitely newer and less worn. We had questioned him on his way out of the temple, but he insisted it was his (and my husband could not say for sure that it was his either and did not want to create a scene). Later in the week, after I had checked to make sure that the pair of shoes with the inserts was still at the temple, I called him to ask him if his shoes had inserts and he said he thought they did. So off I went to exchange the shoes.

While visiting, his wife was in the kitchen making coffee. It took her a long time and when I brought the dishes back to the kitchen, I discovered it was instant coffee that should’ve been prepared in no time at all.

This is a sad situation because both husband and wife are affected. Fortunately, they are already in a senior community with assisted living facilities. At least one child is close by. His keys have been confiscated so he can no longer drive. Hopefully, the child is prepared for the future.

The Alzheimer’s Association issued this today and I received it in an e-mail. If you did not receive it, I am reproducing it here. It is indeed breaking news: Major Advocacy Victory for People with Younger-Onset Alzheimer’s Disease.

The Social Security Administration (SSA) announced today they have added early-onset/younger onset Alzheimer’s to the list of conditions under its Compassionate Allowance Initiative, giving those with the disease expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The Alzheimer’s Association, a longtime advocate for those with early-onset Alzheimer’s, has played an integral role in this movement to reduce the length of disability decision process.

Sign our Thank You Card to SSA.

This is a victory for individuals with early-onset Alzheimer’s disease and is a direct result of the hard work done by Alzheimer’s Association advocates. Since 2003, the Alzheimer’s Association has been working on behalf of individuals with early-onset Alzheimer’s disease to improve the Social Security disability process. Learn more about our advocacy work.

Many people with early-onset Alzheimer’s or other dementias have faced challenges when applying for Social Security benefits. Individuals are often initially denied but usually win benefits on appeal, a process which can take several years.

Last summer SSA hosted a hearing in Chicago to examine access to social security disability benefits for people with early-onset Alzheimer’s disease and related dementias through its Compassionate Allowances Initiative.

Over 70 advocates with Alzheimer’s disease, their families and caregivers attended the hearing to hear testimony from people living with Alzheimer’s as well as medical experts. I was honored to be able to testify as well. Since that hearing, over 600 advocates from across the country submitted written testimony and personal stories of their experiences and challenges

Alzheimer’s Association advocates helped SSA understand the impact of early-onset Alzheimer’s disease on individuals and their families and helped influence their decision to add early-onset Alzheimer’s disease and related dementias to their list of Compassionate Allowances. Without advocates just like YOU, this wouldn’t have been possible.

Please join us in thanking the SSA for their decision.

Thank you for using your VOICE.

Sincerely,

Harry Johns
President and CEO

PS: Many of you know others who have been affected by this disease. Please forward this message onto them so they can join us in thanking SSA and learn more.

To send this post to your family and friends, use this link: http://aboutalz.com/?p=420

Mary Lucas (Photo courtesy of FCPS)

Some caregivers have discovered a useful way of coping with caregiving challenges—they write. Writing their story makes it easier to carry.

Mary Lucas, for example, is a professional woman who specializes in providing marketing and sales support to credit unions. She is also the primary caregiver to her mother, who has Alzheimer’s Disease. Mary began writing when her only child left for college. Here, she reflects on writing about her mother, what that’s been like, and her thoughts about attending a “Writing Workshop for Caregivers” that will be held on Feb. 20, 2010, in Alexandria, VA.

I’ve done a lot of freewriting about my mother. I write about my mother to help me deal with the situation. At this point she has to go into assisted living. I have to find the right place, hope she likes it, clear out her condo, deal with the financial arrangements. When I think of the whole thing … I feel a weight pushing down on me.

Yesterday I visited my mother, and she made a funny comment that was really apropos to what was going on. Writing about those moments helps you deal with the situation in pieces rather than as this whole crushing weight. I’ve never done any psychoanalysis or worked with psychologists, but I know people who have, and they were told to write about things. Now I understand why. When you write about things, you can deal with things in layers, even create good memories.

To me writing is very similar to the visualization they do with athletes. The writing helps you focus on what you need to focus on.

When I write, I generally like to write by myself. But I also like writing with others. You can find a lot of inspiration in a class or a writing group. Sometimes you might not know if someone in the group is at a bad point with something you’re writing about and want to share with the group, so you might be a little reluctant to bring that out. But I don’t dwell on that, and I go with what comes up.

People can be afraid of their emotions, but again, people aren’t coming to dump, to be sad, they’re coming to support each other. There will be laughter and there’ll be a lot of bravery—this is how we get through it, how we stay focused on the goal and what we have to do today.

There’s something about being in a room of people with shared experience. This workshop, for instance isn’t going to be maudlin. It will be positive. I know this from being around different writing groups over the years. I don’t know anyone—even people who say they’re not writers—who didn’t walk away from a workshop or retreat and say, “This was so good for me.”

If you are interested in giving yourself the gift of sanity—the chance to make sense of your life, to write, alone and with others—consider attending the “Writing Workshop for Caregivers” on February 20, 2010, from 10 A.M. – 2 P.M. We’ll meet in the welcoming environs of the Fireplace Room in Hollin Hall, a lovely historic home on the grounds of Mt. Vernon Unitarian Church in Alexandria, VA. Or share this information with another caregiver, someone who may need or want a chance to write her story. For details, please email Joanne Glenn or call 703.721.2088.

In my previous post, I talked about using the Alzheimer’s Association as our benchmark for determining the stages of Alzheimer’s disease. In Stage 1 there is no evidence of Alzheimer’s disease as determined by a medical interview.

Stage 2 of Alzheimer’s disease shows very mild cognitive decline. At this point, it could be just the normal “senior moments” or it could be the earliest sign of Alzheimer’s disease. According to the Alzheimer’s Association:

Individuals may feel as if they have memory loss and lapses, especially in forgetting familiar words or names or the location of keys, eyeglasses or other everyday objects. But these problems are not evident during a medical examination or apparent to friends, family or co-workers.

Personally, it seems as though most of my conversations with my senior friends which lasts longer than a few minutes are sporadically sprinkled with “senior moments.” As far as I know, these are not friends that have any particular problems like coping with grief, abuse and addiction, anxiety disorders, or sleep problems that could affect their memory.

One day my husband and I were taking a walk in the neighborhood and it took us half the length of the walk to remember the the names of a family that used to live in our cul-de-sac. That family has since moved into a bigger house down the street. The next time we took the same walk, we had forgotten their names again and this time we never did come up with all of the names. Generally, between the two of us, we do manage to come up with all of their names. Thank goodness for a neighborhood directory. Perhaps we won’t forget on the next walk. We laugh about it, but at the same time, that thought of Alzheimer’s disease always crosses my mind.

How about you? If you’re in that situation, does Alzheimer’s disease ever cross your mind?

Depending on the source, some say there are seven (7) stages of Alzheimer’s disease while others say there are three (3). The Alzheimer’s Association says that there are seven (7) stages of Alzheimer’s disease. I will cover each stage of Alzheimer’s in separate posts.

Stage 1, according to the Alzheimer’s Association, is No Impairment (normal function). No evidence is apparent to a health care professional during a medical interview. In my post on What is Alzheimer’s Disease? I mentioned three ways that doctors determine how a diagnosis is made –

1. Lab tests
2. Neuropsychological testing (extensive assessment of thinking and memory skills)
3. Brain scans

Apparently, Stage 1 only involves an interview since there is no evidence or reason for more extensive testing at this point. So why a Stage 1? If Stage 1 is normal functioning with no impairment, then it seems to me in order to determine a Stage 1, it is can only be determined AFTER a person has been diagnosed with Alzheimer’s disease. There is no abnormality in Stage 1. So after a person has been diagnosed, then we can go back and say this person with Alzheimer’s was in Stage 1.

On the other hand, it might be possible to detect a Stage 1 if you lived with someone or you know someone very well … a loved one whom you can detect mild memory loss or mild cognitive impairment or other signs and symptoms such as personality changes, all of which may indicate a future Alzheimer’s diagnosis. Or, if you personally feel that something is not right with your memory,  then you may possibly be in Stage 1 of Alzheimer’s disease, but Stage 1 means that you are still functioning normally. At this point, though, from a medical standpoint, an Alzheimer’s diagnosis is not possible. Other problems such as anxiety disorders, bipolar disorders, sleep problems, depression, or medications could also point to Alzheimer’s disease, but that would be conjecture at this time.

If you detect dementia, though, and if you are a future caregiver, you need to remember to most importantly take care of yourself. But it also gives you time to get things in order and prepare for the future. Through our continuous journey, I hope we can learn what to expect (even though each case is unique) and follow the Scout motto: “Be Prepared.”

Alzheimer's Association's E-News

The Alzheimer’s Association has a wonderful Web site packed with a wealth of information. I came across the video below because I signed up to get their weekly E-News and you can click here to sign up as well. It is a one-page update on advances in Alzheimer’s disease care, research, events and a brain-builder puzzle. Although the information is invaluable, it can be overwhelming to those not familiar with navigating Web sites. Additionally, symptoms may be similar, but no two people will experience Alzheimer’s disease in exactly the same way.

The video below reminds us that no one is immune to Alzheimer’s disease and Alzheimer’s is a family disease. The statistics are staggering — every 70 seconds in the United States, someone is diagnosed with Alzheimer’s.  Wow! Imagine being diagnosed with Alzheimer’s disease. The Alzheimer’s diagnosis may not surprise you because you may have suspected cognitive decline, but nevertheless, it is a shock to you and your family to receive the news. This can lead to many problems including depression in older adults, anxiety disorder, personality changes, bipolar disorder, and mental health problems, to name a few. Along the journey, although there is no known cure, I will certainly be looking for tips for getting better.

In future posts, I will be writing about stages of Alzheimer’s disease and the problems each stage brings. In this way, we can prepare for coping with the disease.

Check out this video from the Alzheimer’s Association.