How Stress and the Body's Immune Response May Lead to Alzheimer's Disease

This is a really important article about the roles stress (and the attendant emotions of anxiety and depression) play in the development of Alzheimer's Disease. We've known higher incidents of anxiety and depression are associated with dementia for decades. And I've talked about it on this blog a lot. What we haven't understood is the physical aspects of this connection (the immune system response) and whether there is actual cause and effect. Now science is saying there is.

There's a lot to unpack in this article which is why I recommend clicking on the link. My takeaway, however, is that Alzheimer's disease involves multiple systems in the body that work hand in hand to create the conditions that lead to dementia. Chronic emotional states play a BIG role, especially when not mitigated by exercise and social involvement. None of this has been unknown. The news is that now that there is scientific proof maybe we can get more effective non-pharmaceutical treatments to address these factors in addition to whatever medicines can help soothe people and control the symptoms.

So Pfizer Won't Be Funding Alzheimer's Drug Research Anymore? So What!

A column by Michael Hiltzik of the LA Times says that Pfizer Pharmaceuticals is using money they're getting from the Trump-Republican Tax Cut to pay off their shareholders and end their involvement in Alzheimer's drug research. About 300 researchers will lose their jobs as the money is shunted to other projects. Hiltzik was criticizing them for this decision and I normally would agree with him!

But I used to work for the Alzheimer's Association and for a caregiver resource center supporting family members taking care of people with this disease and other dementia-causing illnesses. And, while I know all those wonderful people I used to support who are desperately praying for a drug-cure for this disease might be feeling horrifically devastated by this news right now, I think the end of this relationship might be worth celebrating!

Maybe now the REAL causes and cures for Alzheimer's Disease can be the focus of the Alzheimer's Association instead of looking for a drug cure. Yes, I said it, the REAL causes. My opinion, backed by a LOT of recent research, is that -- except for the genetic version of Alzheimer's which represents a very small % of those who get the disease -- the cause of Alzheimer's Disease and a lot of other types of dementia is almost definitely way too much sugar consumption (eventually crowding out any real nutrition), loneliness and depression. You can add in lack of exercise for those who actually have vascular dementia (you can't get a definitive diagnosis of Alzheimer's Disease without an autopsy). And we have known about some of these factors for at least a decade!

We need a societal cure, not a drug cure. And I believe that is one of the reasons Pfizer is withdrawing their research dollars. If the research continues to support the idea that diet and depression are the biggest factors, there's no point in Pfizer continuing their drug-cure based investment. They already make symptom-covering drugs! All the literature, videos and slide shows that Pfizer used to give to the Alzheimer's Association came with "info" about Aricept or whatever other drug they were promoting at the time. In return, the Alzheimer's Association put almost all their efforts into raising money for drug cure research. 

As far as I'm concerned, it's just fine for this symbiotic relationship to end. Have them put the money where it counts.

Sleep Deprivation Linked to Risk for Alzheimer's Disease

Links don't always indicate which came first: the chicken or the egg. Is a tendency not to sleep much at night an indicator of early-stage dementia OR the cause of dementia later in life? Sleep scientists suspect the later!

In addition to Alzheimer's Disease, people who get less than the recommended 8 hours of sleep at night also seem to be at significantly greater risk for cancer, diabetes, obesity and poor mental health. Lack of adequate sleep has a horrific effect on the immune system. It makes it difficult to fully process and heal from emotional upsets, it raises your blood pressure, and leads to problems with anger management and depression. It also impairs a vast array of significant bodily processes including your brain's ability to clear the brain cell killing amyloid plaque build-ups associated with Alzheimer's Disease!

So, if you're reading this late at night, go to bed! Make it a habit to have a nice luxurious guilt-free nap or earlier bedtime part of your every day routine. You'll be SO glad you did!

Eliminate Sugar to Greatly Reduce the Risk of Alzheimer's Disease

Giving up sugar will not eliminate ALL Alzheimer's Disease but according to a recent study cited in this article in Psychology Today, 80% of all Alzheimer's patients have insulin resistance or type 2 Diabetes. In fact, Alzheimer's Disease is now being called Type 3 Diabetes or insulin resistance of the brain. The Psychology Today article says "preventing Alzheimer's Disease is easier than you think" -- just give up sugar! Well, that's not so easy, especially if you have developed a dependency. Sugar is highly addictive and if you or someone you love is lonely or depressed, giving up that legal sweet comfort can be highly problematic! But well worth doing. Substitute fruit for sugary desserts, whole foods for all refined carbohydrates, go out for a walk, do something with the grandkids or volunteer. And some of my last suggestions are the most important. Science shows that happier people are far less likely to succumb to addiction and have a far easier time letting go of an addiction that has already been installed.

The Science Behind How Sugar Consumption Affects Your Risk Of Alzheimer's Disease

Watching a family member slowly kill his brain function with sugar has brought the sugar - Alzheimer's issue into sharp relief for me! Nearly EVERY Alzheimer's patient wants to eat nothing but sugar and other carbs that easily convert to glucose at some point in the progression of this disease. And the Alzheimer's / diabetes connection is very clear: one frequently leads to the other but it's not clear which comes first—diabetes or early stage Alzheimer's. I think it is excessive sugar consumption either way. This article gets into the latest research.

Why We Need to Change Our Approach to Alzheimer’s Disease and How

Do you know somebody who has Alzheimer’s Disease or some other type of age-related memory loss or confusion, inability to take care of themselves? This is known as dementia and, according to the Alzheimer’s Association, more than 5 million people in the United States suffer from it today.

I used to work for the Alzheimer’s Association and I know they spend a lot of time fundraising for a cure for this disease and a lot of the money goes into pharmaceutical research, which is a good thing because anyone who is dealing with this disease desperately wants and deserves a worthwhile treatment and cure! But my job (and the job I had later at Del Mar Caregiver Resource Center) was to work directly with the families, and that work led me to some deep inner questioning because I tended to hear the same three stories (or variations) over and over again.

• “Grandma was perfectly all right until grandpa died.” 
• “Grandpa was perfectly alright until he retired and didn’t know what to do with himself anymore.” 
•  “So and so has never been completely alright—she’s always been somewhat depressed—but now that she's living alone, things have really gone south: she has full- blown Alzheimer’s.”

I worked with hundreds of people over more than 6 years and after awhile I started to think: if this is just a physical illness with a physical cure, why am I hearing these stories so often? In recent years some people have started to research this very thing, and they think we could bat down the incidence of Alzheimer’s Disease by focussing on social solutions that might help people be less susceptible.

I hope that in this post you will read something new and that it will inspire you to make a change in your life or in the life of someone you love. First, I’m going to tell you about how important this is. Then I’ll share just a little about the science related to Alzheimer’s Disease so you understand what drug researchers have been focusing on and then a very famous study that seems to contradict the science. I’ll talk about recent studies that might point to social solutions. And I’ll end with helping you think about how easy solutions like that could be and ask you to start with one simple thing I hope you’ll do with your family or friends tonight.

Let’s start with why this is important.

Alzheimer’s Disease has an enormous impact on our country. 

There's a LOT I could say about this, so I'm going to point you to the latest statistics from the Alzheimer's Association for a start, but here are just a few points that definitely concern me! 

• The likelihood of getting dementia goes up the older we get and, according to the latest statistics from the Alzheimer’s Association, 1 in 3 people have some kind of dementia by the time they die.

That’s scary enough but guess what?

• The elderly population—who is most likely to get this illness—is the largest and fastest growing population in the United States because the Baby Boomers are just starting to hit the age when Alzheimer's Disease and other age-related dementias start to really become an issue. (According to the Alzheimer’s Association, if nothing changes, the number of people with age-related dementia is expected to triple in 34 years.)

• This year, dementia is expected to cost this country 236 billion dollars. Obviously, in the future this number could be going way up!

• And these statistics, of course, do not address the emotional, physical and financial toll on the families trying to take care of loved ones. 

Obviously something needs to be done and there’s a lot of research being devoted to trying to solve the problem. 

So let’s look at that.

The reason why so much of the research is focussed on a physical cure is because there are physical things that seem to be correlated with the disease.

As you can see from this drawing provided by Beaumont Health System and the Michigan Head and Spine Institute, which is doing some of this research, the brain of a person with Alzheimer’s Disease looks different from a healthy brain. There are unusual features—protein deposits and alterations in protein structure called plaques and tangles--that can be seen in the brains of people who died of Alzheimer's and they seem to increase the further along the disease had progressed while the people were still alive. Eventually the brain starts to atrophy and shrink, and fissures and holes start to appear. So the drug researchers want to find something that will either clear up these plaques and tangles or prevent them from occurring in the first place.

And that makes sense as far as drug research goes...but is that the best and only approach to reducing the incidence of Alzheimer's Disease and age-related dementia?

In 1997 an article was published in the journal Gerontologist by researcher David Snowdon about a famous project, still going on today, that we in the Alzheimer's field call “The Nun Study.” At the time of that report Snowdon had interviewed and tested the memory and cognitive skills of 678 nuns over their lives and when they died he did an autopsy of their brains. Lots of interesting things were discovered but here’s the story I found of most interest.

One of the nuns, Sister Mary, lived to be 101 years old. She was mentally sharp and scored incredibly high on all these tests, including the last one she did just a few weeks before her death. But when     they cut open her brain, they found signs of atrophy and more plaques and tangles than anyone else's they had studied up until that point. According to what had been assumed from the science, she should have had full-blown Alzheimer’s Disease but she showed none of the symptoms.

So this opens up a lot of questions about why. What they know about Sister Mary is that she was very upbeat and optimistic, she took an active interest in everything, and she seemed to be extremely social. Since then, some researchers have been focussing on those particular clues.

The Effects of Social Engagement and Life Purpose

For example, researchers at the Rush Alzheimer’s Disease Center in Chicago did a study on the effect of loneliness and social isolation on Alzheimer’s Disease that was published in the Archives of General Psychiatry in 2007. It showed that people who reported being lonely a lot of the time were twice as likely to develop the symptoms of Alzheimer’s Disease than people who did not and that the incidence of Alzheimer's was NOT related to the amount of plaques and tangles in their brains--it was correlated with a difference in how they warded off the effects of the physical changes those plaques and tangles represent.

An even more recent study published in 2011 by the Rush Center showed that the more social (and less lonely) a person is, the more they ward off these effects. The most social people seemed to be rewarded with a reduction of the incidence of Alzheimer's Disease of as much as 70%!

But loneliness is not the only factor worth considering. The Rush Alzheimer’s Disease Center also did a study, published in the Archives of General Psychiatry in 2012, that showed that feelings of life purpose also seem to make a significant difference. Life purpose was defined as anything that gives people a feeling of meaning such as family relationships, church attendance, civic engagement,    music or art—things people really care about doing. On a scale of 1 to 5 in terms of self-reported meaningful activities, participants with a score of at least 4 were almost 2.5 times more likely to be free of Alzheimer's symptoms than people who scored a 3 or lower.

And there was one last study I'd like to mention that was published in 2015 in a peer-reviewed journal called Maturitas by the Women's Health Ageing Project in Australia. It showed that these same protective effects could come from something as simple as babysitting a grandchild one day a week.

Five days a week had the opposite effect so you don’t want to take this too far... but think about this. Something that might be helpful to your parents or grandparents could be helpful for you! And it’s not just babysitting—it could be sharing a meal together, going to church together, it could be any number of things that people enjoy doing or things that make them feel useful in the family or in the wider world.

So I’d like you to think about what I shared with you today and start a conversation with your family or friends about it.

• Alzheimer’s Disease is a really big problem.
• The science doesn’t always match up with what actually happens with the disease.
• We know that people who are less lonely and have a sense of life purpose seem to ward off the effects of the illness.
• And there are ways that we might help each other with that. 

Now I know that some of the things I’ve been talking about are not going to work for everyone—the statistics do NOT say that! And not everybody is going to be able to change long-standing patterns and ways of living. And not everyone has such a great relationship with their family that it's terribly appropriate to tackle that. But I’m going to leave you with a few final thoughts.

• There are lots of lonely older people out there.
• Developing new habits that bring us close to other people and things we love to do are way easier to do when we're young and could have a significant impact on our well-being as WE age!
• And mutually beneficial relationships can be good for everyone. 

References

2016 Alzheimer's Disease Facts and Figures. (2016). Alzheimer’s Association. Retrieved April 14, 2016, from http://www.alz.org/facts/#quickFacts 

Buchman, A. S. (2012). Effect of Purpose in Life on the Relation Between Alzheimer Disease Pathologic Changes on Cognitive Function in Advanced Age. Archives of General Psychiatry, 69(5), 499. doi:10.1001/archgenpsychiatry.2011.1487. Retrieved April 14,  2016 from http://archpsyc.jamanetwork.com/article.aspx?articleid=1151486.

Burn, K., & Szoeke, C. (2015). Grandparenting predicts late-life cognition: Results from the Women's Healthy Ageing Project. Maturitas, 81(2), 317-322. doi:10.1016/j.maturitas. 2015.03.013. Retrieved April 14, 2016 from http://www.ncbi.nlm.nih.gov/pubmed/25891500

James, B. D., Wilson, R. S., Barnes, L. L., & Bennett, D. A. (2011). Late-Life Social Activity and Cognitive Decline in Old Age. Journal of the International Neuropsychological Society J Int Neuropsychol Soc,17(06), 998-1005. doi:10.1017/s1355617711000531 Retrieved April 14, 2016 from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3206295/

Snowdon, D. A. (1997). Aging and Alzheimer's Disease: Lessons From the Nun Study. The Gerontologist, 37(2), 150-156. doi:10.1093/geront/37.2.150. Retrieved 4/14/16 from http://www.ncbi.nlm.nih.gov/pubmed/9127971

Wilson, R. S., Krueger, K. R., Arnold, S. E., Schneider, J. A., Kelly, J. F., Barnes, L. L., . . . Bennett, D. A. (2007). Loneliness and Risk of Alzheimer Disease. Archives of General Psychiatry, 64(2), 234. doi:10.1001/archpsyc.64.2.234. Retrieved 4/14/2016 from

http://archpsyc.jamanetwork.com/article.aspx?articleid=482179. 

Image of brain:

External Beam Radiotherapy: Beta-Amyloid Plaque Reduction. Provided by the Beaumont Health System for an article by the Michigan Head and Spine Institute.Retrieved April 19, 2016 from http://www2.mhsi.us/Articles/external-beam-radiotherapy-beta-amyloid- plaque-reduction.html

Correcting Andrew Weil's Report on Risk of Alzheimer's Disease and Stress in Women

I really wanted to write directly to him on this one, but I could not find a way to do that without offering up my email address to endless amounts of spam.

Take a look at this article. It's about an important study about how worry and stress DOUBLES the risk of developing Alzheimer's Disease in women. http://www.drweil.com/drw/u/QAA401550/Worrying-About-Alzheimers.html

In the last paragraph Dr. Weil said "Please bear in mind that in this study "twice the risk" is relative to the normal risk of developing Alzheimer's. Here's what relative risk means: assume that the normal risk is one in 100 people. Double the risk means that two of 100 people will develop the disease and the other 98 will not."

Fine, but 1 in 6 people in the U.S. have Alzheimer's Disease right now (about 14%) and the percentage rises as people age to 1 in 3 people getting the disease by the time they die (about 33%). Correct me if my math is wrong (that happens) but I believe if you double the risk you will get numbers ranging from 28% for the population as a whole and rising to 66% as people get older. That's a very significant statistic!

It makes a very big difference as people progress through their life cycle, and taking steps to shift these patterns in your life when you are still young, could make a major difference for your life as you age!

The Great Unlearning Which is Alzheimer's

 I found this article about deep philosophical and spiritual questions related to Alzheimer's Disease to be very comforting. I see the importance in emotional processing and life review in various elderly people, not just Alzheimer's patients. Lots of examples and ideas in this: http://www.crosscurrents.org/webb.htm

More on Alzheimer's and Type 3 Diabetes

I'm not in the field of dementia care anymore but two close family members with these symptoms keep me needing to pay attention. My dad is in a nursing home right now, and my mother reports that all the patients seem to want to eat is sugar. The family caregivers I used to work with would report the same thing. Long before the scientific evidence started to pile up, those of us working in the field knew there had to be some correlation between memory loss and confusion and these bizarre sugar cravings. Patients lose their appetites for anything else. It is now thought that a lot of what we call Alzheimer's Disease is most likely insulin resistance in the brain caused by excessive sugar consumption, lack of exercise and — this is something scientists do not say — whatever it is that causes people to substitute sweets for what the rest of us consider to be the "sweetness" in life.

I feel I must go out on a limb with this a bit. Too many Alzheimer's patients have spent many years being isolated and lonely, have suffered the trauma of losing their spouse or significant other, have few if any hobbies, or otherwise feel like they have little to live for except watching endless amounts of TV with a bowl of ice cream or plate of cookies close at hand.

There is also sufficient evidence to suggest that early stage Type 3 Diabetes (and therefore most Alzheimer's Disease) can be easily reversed if caught soon enough with exercise, insulin and more moderate sugar consumption. Going for a walk three times a week is enough to make a big difference in someone who is excessively sedentary. Making it a rule never to eat sugar on an empty stomach or substituting more protein and fat and fewer carbohydrates can make a big difference right away regardless of the amount of exercise. And try arranging it so your loved one takes that walk and eats that meal with someone who loves them! That could make the biggest difference in quality of life for both the patient and all concerned.

Scientific articles:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769828/
http://www.ncbi.nlm.nih.gov/pubmed/22810099

Layman's articles:
http://dealingwithdiabetes.org/type-3-diabetes-attacks-your-brain/
http://opinionator.blogs.nytimes.com/2012/09/25/bittman-is-alzheimers-type-3-diabetes/

Diabetes and Dementia

If you work for very long in the field of elder care you eventually hear the following concern: my dad / my mom is wasting away and all he/she wants to eat is sugar. The answer: Get your loved one tested for diabetes!

There is a very strong correlation between the inability to utilize blood sugar and dementia. Cravings for sugar often occur because the body (and brain) relies on having adequate amounts of glucose. Most of us gain weight by eating sugar. If a person is eating too much sugar and is losing weight that is a serious symptom. If it has gotten to the point of them losing their appetite or feeling nauseous after eating, it's even more imperative to get the blood sugar levels checked. It can mean that the body has become insulin resistant or is not capable of producing enough of the insulin it needs to make use of the sugar the person so obviously craves.

People with diabetes over the age of 60 are twice as likely to have dementia. People with dementia who have uncontrolled diabetes are much more likely to show a worsening of all dementia symptoms when blood sugar levels are out of balance.

Click here to read more: http://www.dailymail.co.uk/health/article-2039401/Over-60s-Type-2-diabetes-twice-likely-end-dementia.html

Get "The Spiritual Journey of Family Caregiving" as an E-Book download

Times are changing and they're changing fast! A few short years ago e-books were a ridiculous notion. Then they became popular and people were encouraged to keep the price of an e-book close to the price of print books so as not to hurt print book sales. Well, not so fast. What's the point of offering an e-book if not to promote the ideas they have to offer at a doable price for people who won't spend the cover price of a brand new book, especially the price of one done on a print-on-demand basis?

So I'm making my book available as an e-book download for just $4.99. What? Will she make any money at that price? I hope so! Especially if you tell your friends. Here's the link to my shop at Healing Communication Press. I hope to have it available for the Kindle as soon as I can, too and other venues as well. Watch this blog for updates.

Home for the Holidays -- Omigod!

I haven't written in this blog for months. My life is in great transition and writing anything just hasn't been on my priority list. But I suddenly noticed that, despite my lack of activity, hits to my blog suddenly jumped. Huh?

Oh yeah, people just got back from the Thanksgiving holiday. And, like millions of other people, they saw a beloved parent or other older relative they had not seen in a long time and were shocked.

Grandpa made a speech at the holiday feast thanking God that the family was "together for the first time in forty years!" Um...nobody said a thing but everyone knows the entire family had come together for his birthday just a few weeks before and many family gatherings over the years!

Nana seemed perfectly okay but then went shopping and brought back nothing but cookies, lettuce and pizza. So? Well, there was already too much lettuce in the frig, a cabinet full of the same cookies and a freezer full of frozen pizza. And Nana's response when she got home? "Oh look, dear! The children already bought pizza! Isn't that sweet?" But it wasn't true.

Auntie Anna's kitchen was filthy and she didn't seem to notice. Her bills were piled up on the dining room table, about four month's worth, and yet she denied that there was anything wrong.

So people came home and went to work. Is this dementia? What can we do?!!!

Yup, tis the season...

Okay, so first things first: calm down and breathe. And remember the most important things. Does something need to be done? Yes. Does it need to be done by you and you alone? Not likely.

Your first step: educate yourself. If your relative lives alone you will need to do something. Is there an Alzheimer's Association in his or her area? Contact the closest Area Agency on Aging. Or find the ones in your own community. They can direct you to any resources your relative might need. You don't have to figure this out alone!

In fact, you shouldn't. If there are any other family members involved check in with them. Compare notes, compare possibilities, educate yourselves and then decide on a plan of action.

And guess what? If your relative does not live alone there may or may not need to be anything done at all. If no one is in physical danger and there is someone taking care of the absolute necessities (the bills, for instance), the most important thing might be taking care of your own emotional upset. Yeah, it doesn't look good from the outside but, more often than not, people living together overcompensate for each other's difficulties, they overlook the little slips and idiosyncrasies, they do what has to be done and let the rest slide. It's shocking if you haven't seen Nana for a long time but if grandpa still seems to be handling it alright... Do check in but don't freak out if he says they don't need anything.

At least not what they'll accept for now. But they most likely will need help if not outright intervention as things continue to decline. So get help to know what kind of things to look out for, what resources may be nearby, and how you as a member of a larger group (family, community resources, etc.) can prepare for the time to come.

Alzheimer's Disease Cooperative Study

Image via WikipediaAre you or a family member experiencing the early signs of memory loss? Would you like to participate in research looking to put an end to Alzheimer's Disease?

The newest thinking in the future of Alzheimer's treatment is to be able to detect changes in the brain in the earliest of stages, long before full-blown Alzheimer's symptoms appear. Reversing these brain changes -- or the behaviors or predisposing physical conditions that cause them -- is thought to be the best way to stop Alzheimer's. But the only way to recognize what these changes are and learn more about who is at risk is through the participation of volunteers.

“We cannot end this terrible disease unless we know more about it,” says Dr. Paul Aisen, M.D., director of the Alzheimer’s Disease Cooperative Study (ADCS). “That is where the amazing volunteers, their friends and their families can make the difference in our success.”

If you, a friend, or a family member is experiencing early signs of memory loss, you may be eligible to participate in a groundbreaking ADNI GO study. Please visit http://adcs.org/Studies/ImagineADNI.aspx or call the Alzheimer’s Disease Education and Referral Center at 1-800-438-4380 for more information on study sites in your area.

Related articles

• Hope for Treating Alzheimer's Progression (psychcentral.com)
•  
• Researchers Trace Alzheimer Process, Hope To Find Effective Treatment (consumeraffairs.com)

Gifts for Alzheimers Disease Caregivers and Families

Etsy.com is an online marketplace for handmade items made by artists from all over the world, but particularly in the United States. There's a great community of people there and one of them created this Treasury (a curated show) of gifts made to remember, honor or support someone with Alzheimer's Disease or a related dementia. My book The Spiritual Journey of Family Caregiving was included because I sell a variety of things on Etsy. I thought that was very nice. http://www.etsy.com/treasury/4c582503979b8eefecf908e5/compassion?index=2

"Mom's always been this way. It's just worse now."

I can't tell you how many times I heard that statement from the adult children of a dementia patient struggling with the issue of whether Mom actually had dementia or not. The behaviors were already there -- the constant anxiety about insignificant things that had progressed into paranoia, the constant nattering chatter that no longer had any censor on it at all or, conversely, the tendency to be depressed that had progressed into a complete withdrawal from the world. And now that I live in close proximity to someone who exhibits these characteristics I understand more fully the underlying question: if these obvious signs of dysfunctional behavior were there all along to a lesser extent is this really dementia? And if it is dementia were they always suffering from dementia? As a Family Consultant it led me to question what dementia actually is. And what, if anything, could have been done about it from a behavioral point of view?

There have been multiple studies that have correlated the incidence of Alzheimer's Disease with a much higher then average incidence of depression or excessive anxiety earlier in life. There is also fairly conclusive evidence that people who stay happily actively engaged in life and who use their minds more regularly are more likely to keep their ability to function -- even with the supposedly tell-tale indicators of Alzheimer's Disease that are used to give a more precise "diagnosis" after death. The famous Alzheimer's Disease Nun study is a good place to learn more about that.  I was fairly convinced as a Family Consultant that something could have been done, should have been done, but the "what" eluded me then, continues to confuse me now.

On what level is one allowed to confront a family member with the news that not only are they driving everyone around them crazy, in a very literal sense they might be driving themselves crazy, too?!!! Well, I don't have an obvious answer to that -- and when it's progressed too far, it's in many cases too late!

Perhaps that's why I'm sharing this with you right now. I don't have to do this. I no longer get paid to write these things. But maybe, just maybe, if this message is put out there well enough and often enough by people who do care the idea will get across. Having a happy healthy attitude makes for a better life. Cultivate yours. Help your friends cultivate theirs. And do what you can in your family of origin, too.

Early Behavioral Indicators of Dementia

There is a spectrum of behaviors that family members report when it comes to dementia. There's the genetic variant of Alzheimer's that hits relatively early in life and doesn't leave anyone unscathed. The most intelligent competent person in their forties can become completely dysfunctional in a very short few years. That's the worst case scenario and it is NOT the one most people came to me about when I worked for the Alzheimer's Association and Del Mar Caregiver Resource Center.

The more typical situation belonged to the people who became slowly more and more incapable of handling their daily lives, became increasingly more dependent on the people around them, and died usually from some other cause in their 70s or 80s. This is also the most difficult kind of dementia to diagnose and, frequently, no definitive diagnosis becomes available until the behaviors become so intolerable or frightening to someone else that there is no other recourse except to intervene.

People would come to me reporting all kinds of troubling behaviors before their loved one was willing to seek medical attention. "What does it mean when I see that my mother-in-law is letting the bills pile up?" "I went to visit my parents when I went on vacation and I could not believe the state of their refrigerator!" "My grandmother stays in her bathrobe all day and spends the day muttering to herself." "I popped in unexpectedly on my father the other day and found him sitting in his underwear in the dark! He said there was nothing the matter with what he was doing and to leave him alone. Is this the beginning of dementia? How do I know? What do I do?"

I'd do the best I could with the information I had but the truth is there are no hard and fast answers to these questions. And now that I live with some elderly people exhibiting a few of these behaviors themselves I know that my best thinking on the subject was probably wrong! Yikes!

Some people, all of us perhaps, lapse into lazy behaviors when no one is looking. At a certain age, you've probably heard people say, one of the perks is not caring what other people think. I think now that that combination, combined with a lack of desire to change things when family arrives, was behind most of the early behaviors worried family members used to report. That's not to say that these behaviors are not early indicators. They certainly are! But people with depression act the same way and elderly "eccentrics" who don't want to play social games anymore certainly do. Take these people to the doctor and you won't get a definitive diagnosis of any sort of dementia in the early stage. Unfortunately, study after study does tend to show that high levels of depression and social isolation are two of the key determining factors in whether a person develops the disease.  And that's the reason I wanted to write about this today.

Can you help a loved one who is depressed, feels cast off by society, alone and scared? Can you help someone who refuses to accept help? Sometimes you can help bring a lonely loved one back into the fold. Sometimes you have to let go of the outcome, extend a helping hand where it is allowed, and hope that it makes the quality of their lives (and yours) better as far as you're allowed to go.

Being Still, Letting Go

Painting © Copyright 2009 Sheryl Karas

When life is chaotic it can feel extremely difficult to find a calm center to relax into and let go. I think this painting I did recently epitomizes that. Too much happening to feel "meditative". But it is a mandala. Breathe in and focus on the very center.

Or close your eyes and begin again.

The mandala above is a challenging place to begin a focused meditation practice. I can't do the practice I suggested above with this piece myself. But that's why I chose it for this article. Living with someone with dementia is like that. The chaotic disrupting influence of the dementia patient's fractured thought process and the worry, frustration and seemingly endless series of problems creates a backdrop that screams for attention even when you find a few minutes of "peace" just for yourself.

Some things in a caregiving situation take a lot of time to work through. Throughout my book I offer lots of suggestions caregivers can do to make things go better. But what about those things that can't be improved? You know what I'm referring to: the endless repeating questions that you just answered 10 minutes ago, finding the roll of tin foil in the refrigerator along with the unwrapped meat that mom insisted on putting away, the obsessive paranoia, the accusations that someone broke in and stole the purse you know will someday show up someplace weird. The list gets longer all the time and no well-meaning guidebook or caregiving professional has an answer for how to deal with it all.

It's natural to obsess on a situation that is this upsetting. And if there IS something you're overlooking -- maybe Mom's medications need to be adjusted? -- it's wise to get a professional opinion.

But, I know, sometimes you've done everything you can think of to do and the craziness doesn't end. Today I had an insight into this. Just going away, closing the door and obsessing on how much you hate the situation you're in does NOT make it better. :-) Yeah, it was an insight. . .  or rather a reminder to be in the present moment. In this perfect moment in time there is no dementia patient in the room. In this perfect moment there is nothing going on that can't wait until someone (not necessarily me) returns.

By really being in the present, I can breathe and return to a feeling of peace myself.

Codependent No More

In my work as a family consultant I frequently thought my clients could benefit from Melody Beattie's best-selling book Codependent No More. It was written with family members of alcoholics in mind but, really, anybody who lives awhile with a person prone to demented behaviors whether it's caused by alcohol, drugs, mental illness or a dementing illness is in the same boat. We're all attempting to cope with the chaos and pain such a situation causes and we frequently develop some pretty intense coping behaviors in which all our attention gets sucked into obsessing about the person who is creating it. It's natural, it's human but it's damaging just the same.

I recently reread this book after not thinking about it for many years. It still holds up and I recommend it for the chapters on how to focus on yourself without guilt and work with your own anger, grief and pain. You may not be able to walk away as might be recommended for someone dealing with an alcoholic. Caring for a person with a dementing illness typically isn't thought of the same way. But please do take seriously the importance of cultivating detachment, a sense of humor, and time for yourself. It makes all the difference!

Codependency as a Precurser to Dementia

This may be a controversial article, especially since as far as I know nobody has done studies on this phenomenon to date. Certainly, living with someone with dementia can create codependency. That was the heart of my practice when I was a caregiving consultant. But nobody that I know of has written about the case in which the disease goes the other way around.

First, let's try to define codependency. This is a term very familiar to those in Alcoholics Anonymous and Al-Anon to describe the dynamic that frequently occurs between the alcoholic and those who have to live with one. Basically, the codependent person gets trapped in a system of trying to compensate for the alcoholic's behavior in a variety of ways—everything from constantly monitoring how much a person drinks to covering for them when they've drunk too much. It takes constant vigilance to cope with being in a relationship in which a significant portion of the day is spent avoiding or coping with the aftermath of giving in to an addiction. There's no criticism intended in this description. But the inevitable upshot of the dance that occurs enables the alcoholic to continue their dysfunctional and dangerous behaviors because they never wind up taking responsibility and living with the consequences of their own actions.

Unfortunately, the codependent is usually just as addicted as the alcoholic. They are addicted to being needed, to being the competent one, to being the one who "really is in charge", etc., etc. And it's not just family members of alcoholics who wind up adopting these addictive coping behaviors. Anyone who grew up with a parent with any kind of disorder that made them undependable or even a little dangerous will have tended to develop a number of behaviors meant to help control the crazy circumstances they live within. Children of abusive parents and those with mental illness are a prime example. "What do I have to do to keep dad from hitting me?" "How do I handle the fact that mommy isn't making us dinner?" Children who live in these circumstances can become super-competent. That's the good part. The bad part is that they become terrified to do anything else.

A codependent personality always has their attention on someone else. In my caregiving practice I would say "How are you?" and nine times out of ten whoever was sitting in front of me would tell me about their Alzheimer's patient instead. Seriously. I'm not exaggerating. I met with hundreds of family caregivers in a year. Most of them couldn't answer the simple question of how THEY were without being asked twice.

Every once in awhile a caregiver would say "My mom was always the one everyone depended on. She was the caregiver for the whole family. She took care of both her parents until they died. She took care of my mentally ill sister. She took care of our grandparents and my cousin Mary, too!" Now she's finished with her caregiving duties and what happens next? She can't even enjoy it because now she's been diagnosed with dementia, too!"

The first time I heard that story I felt bad for the person involved and thought "how terrible!" The second time I heard it from a different caregiver I thought "that's sad and how interesting that it's happened here, too." Then I heard it again and then a fourth time. It wasn't the most common story I heard. THAT story was "Mom was perfectly alright until dad died!" But it was a variation that made me wonder.

Right now I'm living with someone who has such acute codependency behaviors that she worries and talks about other people —and ONLY other people—all day long. ALL DAY LONG ALL THE TIME. She does not have Alzheimer's disease. But she can't concentrate on her own interests and things she wants to do at all. She leaves food on the stove to burn while she takes care of a stranger's problems on the phone—even a telemarketer gets her undivided attention. She loses things every day. She forgets things that she "cares" about all the time. But not other people. Other people are the only thing in her view.

If you were to step into this situation and see it from the outside you would see behaviors that smack of dementia. But her family members say, no! She's been this way most of her life. She's always been the caregiver. It's just a little worse now because she doesn't actually have a person who really needs caregiving these days and she does have a little age-related memory loss that contributes to the problem now. She WANTS to be caregiving! She's constantly getting into other people's business and attempting to do so until they get mad and tell her to go away. And she can be extremely engaged and competent when she gets set loose. But without it. . . she doesn't know what to do, she gets a little batty, she withdraws her attention from life and acts out addictive behaviors like constant TV watching on her own. And she acts like a little girl who needs watching over. . . which was probably the truth when she believed she needed to do the caregiving she no longer knows how to do without.

It's what I suspected when I worked for the Caregiver Resource Center. I'm seeing it acted out in front of me on a daily basis now. Give a person with "dementia" a job where they feel like they can take care of someone else and many of them come back to life. I heard about that time and again. I only wish I knew how to help this person and those of you dealing with someone like them now.

Age Related Changes and Memory Loss

When I was a Family Caregiving Consultant people who had not lived with their elderly relatives in years would come to me in a panic about behavior that smacked of dementia. They had a family gathering at the house, came for a more extended visit, or even needed to move in together for a particular period of time, and what they saw frightened them.

Now my partner Paul and I are temporarily living with his elderly parents. Neither one has Alzheimer's Disease. Both have been getting by but what we're seeing is throwing my earlier client contacts into a different light.

I remember hearing: "My grandmother stays in her bathrobe almost all day long!"

Yep. Occasionally, I do, too, on my day off when there's no one around to see me do it. If grandma has been living on her own and is "on her day off" all the time, why shouldn't she do what makes her feel comfy and cozy?

"Mom takes hours to get dressed or make dinner!"

Yep, why not? There's nothing to hurry for.

Now, I'm not going to say we haven't seen behavior that completely freaks us out. One of Paul's parents has judgment lapses that would get her declared "incompetent" in an instant if this wasn't a lifelong pattern of decision-making. "She's always been like that!" I hear again and again. "It just happens more now. She doesn't care about those things and never has!"

In context, it's just a progression of the same old thing. Jumping in fresh or after a long absence, the progression make no sense. It's crazy! It's "dementia"! We have to do something!

And maybe you will have to intervene sooner or later. After all, there has been an increase in these behaviors. And there is at least age-related memory loss.

But trust me, the parents won't feel that way. They've been compensating for these changes for a decade or more. "We've gotten this far," they think. "What the hell are you so worried about? Big deal, if I leave a pan on the stove. Haven't you ever done that? Big deal, if I go to a party and forget my teeth! I've done it before! And yeah, I even bounced a check or two this month. Stop snooping into my business. (You have no idea how many times I did that when I was younger, too!)"

Most people's parents handle their aging with an acceptance and flexibility their children can't imagine. Things change gradually, they adjust, they make do, they adjust some more. But then there's one last adjustment and things fall apart. That's when the kids can step in. It's nice if you can plan ahead for that. It's even better if the parents will help you help them before things fall apart.

But they have to be willing to allow you to be involved. Before then, it's a terrible interference into a life that's being independently, and even somewhat gracefully, lived.