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

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)

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.

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.

Buyer Beware! Caregivers Take Notice

Recently a good friend of mine, an elderly woman we'll call "Mary", was contacted by Wells Fargo Bank. She consented to speak to the "nice man" on the phone right away-- after all this was her bank, could something be wrong? No, but after several minutes of chatting with the person she thought was a bank employee she had been talked into allowing Wells Fargo to deduct $25 a month from her account for an insurance policy she didn't want.

I was there when it happened and said "Mary, why did you do that?! Why would you buy insurance you didn't want?"

"Oh, don't you worry about a thing" she said. "It's free the first month! And when I get the paperwork I'll just cancel it. The nice man said I could do that any time."

"But why would you say yes to this in the first place?"

"Oh," she said. "You know those poor Wells Fargo people have a 'quota' to fill, don't you? If they don't sell so many policies a month they could lose their jobs. I couldn't let that happen!"

I was flabbergasted but she assured me that she would get a notice from the bank and when she got it she would cancel it, so I stashed the experience in my memory bank, in case it should matter some day, and let it go.

Well, the paperwork either never came or didn't look like what Mary had expected. She has a vague recollection of getting something from AIG but she "knew" she hadn't bought anything from them so she threw it away. Three months later both of us had forgotten all about the insurance buying incident and Mary found herself unable to buy groceries at the end of the month because $50 she counted on was "missing" from her account.

Now, luckily, Mary is not so demented that she didn't notice what was wrong and immediately called the bank. She only has age-related memory loss and perhaps some misguided judgment. Wells Fargo promised to cancel the policy and, hopefully, that will be the end of it. But what if Mary wasn't that on top of her bank account? Could this even happen to you?

How To Help A Lonely Elder

This info was written for people in Santa Cruz, CA but there's enough good suggestions here to help you find similar possibilities in your hometown, I'm sure:

Everyone feels lonely from time to time but the elderly are at a greater risk because most of their loneliness comes from long established habits combined with the loss of longtime friends and companions.

The key to breaking isolation is to very slowly and gently add activities that get the lonely person into the presence of others. In addition to extra contact from existing family and friends, start with activities that are easy to participate in such as church services or special interest classes. Senior centers offer a variety of activities especially geared towards seniors but Santa Cruz is also rich in adult education opportunities ranging from Parks and Recreation classes to community education courses at the University or Cabrillo College. If travel was always a source of pleasure try group tours or day trips. If the person enjoys reading try the public readings and book signings presented by local bookstores. If the person used to gain pleasure by caring for others (children or a spouse) consider volunteer opportunities with a social service agency or child care center. Even a part-time job can make a difference.

For very frail or housebound seniors, an adult day program that includes transportation and medical supervision might serve the purpose. (In Santa Cruz, try Elderday 458-3481 and Cindy's Celebrations 479-7509). If the person truly can't or won't leave the house, it is possible to arrange for a volunteer or paid companion to visit there. Try a Friendly Visitor program (427-5070) or Senior Companion (475-0816 ext. 10). Many others find that what they need most is to live with other people -- try assisted living or retirement communities or rent out a room to another senior citizen or college student (Senior Network Services Shared Housing Program 462-6788). In Santa Cruz it is even possible to try out having a housemate for a very short time by offering a room to a visiting professor or foreign exchange student for one semester or by providing space for a Shakespeare Santa Cruz performer for the summer. (458-3506)

Flat Land

Excerpted from the Spiritual Journey of Family Caregiving, available directly from me for $14.95.

A few months ago I had lunch with Mark O'Neil, an interfaith minister writing a book on spiritual lessons he learned on a cross-country bicycle trip with other people. He told me that when the going was rough, cycling up mountains, all the riders could think about was flat land when everything would be easy. That's all they could think about mile after mile and then finally they got there. Kansas, Utah, Nebraska! Blissful relief!

At first.

But then the reality of flat land would hit: mile after mile of unrelenting boredom. Cornfields and unchanging vistas for as far as the eye could see. It eventually dawned on them that as hard as the mountainous roads were, they were far preferable, far more interesting, and a lot more fun.

I had a similar experience recently. I finally got away for a long weekend in the country. Life had been so stressful that I had made no plans and brought no projects, not even a book to read. I was looking forward to a long weekend with nothing to do, socializing with friends and enjoying the scenery. It was great for the first day and a half. But there were no hiking trails nearby and I didn't have access to our car for much of the time. Suddenly the reality of being stuck in the country with nothing to do sunk in -- I felt trapped! Hours of unrelenting boredom! I wanted to do something, go somewhere -- anything would do! What seemed like heaven on earth quickly turned into hell. (Clearly, I wasn't into the idea of this becoming a meditation retreat!)

On the way home our car broke down in San Francisco just after we got off the Golden Gate Bridge. I normally think of that kind of an experience as a disaster -- stuck in the city on a heavily traveled street with cars whizzing by narrowly missing our vehicle, waiting for hours for a tow truck to take us safely home. But instead of feeling awful I was struck by how uplifted and excited I was. Finally, I was having an adventure! It had challenges, perils, and involved interesting experiences I never had had before. We met wonderful people who helped us call for help and got us off the Presidio and onto a quieter, safer street nearby. We played a game while waiting for help: trying to guess at what point cars would notice our flashers and pull into the next lane and trying to see if we could influence drivers to pull over more quickly through prayer and psychic intervention (it actually worked!). We noticed and commented on the weird variety of reactions people had to seeing us stopped by the side of the road -- everything from kind suggestions for help to yelling at us for tying up traffic! We got to have the fire department inspect our car to see if it was a fire hazard and then watched the process of having our vehicle lifted onto a flatbed truck and hauled to Santa Cruz. In short, even though parts of it were very stressful, this "bad" experience was the most interesting and engaging thing that happened all weekend.

So what does this have to do with caregiving? Well, I've noticed in the caregiving support groups I lead that when week after week people report that nothing has changed, nothing is happening, the energy level of the group appears to drop. It's like everything is stuck in a rut and, instead of enjoying the calm, people seem demoralized. But when something does happen, when there's a crisis or a change that needs to be accommodated, the group rises to the occasion with vim and vigor. People become energized, interested, they get ready for action or do what they can to pump up the person who needs to take action. It's quite inspiring as a support group leader to watch everyone come together to help one person figure out how to do what needs to be done.

Right now, we're not on flat land. Our country is on red alert, watching, waiting to see what's going to happen next. [This was written not long after 9/11.] I see the stress on everyone's face and recognize it in myself; yet, I'm also energized. I'm awake. I'm interested and engaged in what's happening in the world in a way that felt more difficult a few weeks ago. And I'm not alone. Suddenly we all have an urgency to do what needs to be done and an acknowledgment that this isn't something we can do alone.

And neither is family caregiving.

The message for today is together we can do whatever needs to be done. People in a common struggle help each other out. That's what happened in New York. That's what happened here in Santa Cruz after the '89 earthquake. In a crisis you can't just wait for the Marines -- they're busy! You depend on whoever is available and they depend on you. Are you getting overwhelmed by caregiving but close-by family and friends are hard to find? Notice who is in the struggle with you: your fellow caregivers! Join an online support group. Join an in-person support group. Then call these people up and exchange friendship and support. Hire an in-home support person together for an afternoon and go to the movies. Invite each other over for dinner with your patients. Then make a pact to call each other for support when you need extra help. This is different from imposing -- it's a mutual agreement to help each other through whatever needs to happen. Not only that, you get to have more fun. Three women I know who met each other through an Alzheimer's support group, support each other to get respite and take weekend trips together. You should see their happy relaxed faces in the photos they took of their last trip to Tahoe! Their partners are steadily getting worse. None of these women are on flat land -- they're climbing mountains -- but they're starting to have fun along the way and they know they'll have support through thick and thin.

The Connections Between Patient and Caregiver Mental Health

Excerpt from The Spiritual Journey of Family Caregiving:

I co-lead a support group for patients in the early stage of Alzheimer's Disease and their caregivers for the Alzheimer's Association in conjunction with Del Mar Caregiver Resource Center. One of the caregivers in the group had emergency surgery several weeks ago and almost died. When she returned she looked radiant. I had never seen her look so healthy and relaxed.

"I learned something wonderful!" she joyfully reported. She had been sick for a long time without realizing it. But now that she was healthy, rested and relaxed after a long enforced break from caregiving, her husband (the Alzheimer's patient) had improved! He wasn't cured by any means, but because he felt less nervous around her he was able to remember things more easily.

Her husband piped in at this point."It's important to feel confident around the person who takes care of you." He agreed that it made a big difference.

So, caregivers, take care of yourself! And don't be afraid to take a break when you need it.

Longevity and Mental Health

In the latest copy of AARP magazine there's a wonderful article about the longest-lived people in the world and what aspects of their way of life that might have led to such long healthy lives. The article focused on a research trip to the Nicoya Peninsula in Costa Rica, one of the places on the planet with an unusually high proportion of people who reach the age of 100 or beyond. They interviewed as many centenarians as possible and came up with a list of several lifestyle practices they had in common. Here are a few of the ones that caught my attention:

• They had a strong sense of life purpose, they felt needed, and had the intention of contributing to the greater good.

• They live with their families, derive satisfaction from helping other family members, have a strong sense of belonging and of being valued in the family unit, and are supported by other family members in return.

• They eat lightly and tend to eat food combinations with a high nutritional content.

• They work physically their entire lives and enjoy their daily work.

• They share a common set of cultural and spiritual traditions and keep close relationships with neighbors and friends who they socialize with frequently.

• Despite living in conditions those of us in the United States would describe as poverty-stricken and unsatisfactory, as a rule these people appreciate what they have, watch for the silver lining in bad situations, and expect to receive what they need. They are optimistic in their point of view and believe in a caring and loving God who watches out for their best interests.