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

Purpose in Life Wards Off the Effects of Alzheimer's Disease

A new study published in the Journal of the American Medical Association Psychiatry Division shows that people who score high on tests measuring one's feeling of having a purpose in life are less likely to get Alzheimer's Disease and are far less likely to exhibit cognitive signs of the disease even when the telltale physical changes associated with Alzheimer's are present. Previous studies have indicated similar things (the famous Nun study, for instance), but specifically studying purpose in life is new and noteworthy.

Add that to studies that show that feeling isolated, lonely and unloved tremendously increases the likelihood of Alzheimer's, and those that show correlations between the disease and depression, and I think we're starting to get a much clearer picture of how Alzheimer's Disease manifests in the elderly population. I imagine this is especially true in Western culture of the current generation!

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.

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.

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!

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)

Gratefulness and Family Caregiving

Is the glass half full or half empty? It depends on what you choose to focus on. When times get rough you can't ignore the empty part because that's information about what needs to change, eventually, as time goes on. But neither should you ignore what you have left because that's what makes life worthwhile. Who do you love? Who has loved you? Do you have a roof over your head? If things get really bad will you have the family, friends and community support to survive?

Most of my clients are very focussed on what they've lost, as is normal and natural when life is filled with loss and change. But I had a conversation with a friend yesterday that changed my perspective. He's been given a death sentence -- he was diagnosed with an illness that, theoretically, at least, only gives him a few months to a year to live. Of course, he wants to beat those odds and live a long healthy life but he knows -- like all of us -- that he could die in his sleep at any time. He feels healthy enough now so he was trying to decide what to do with his life. Should he take on a long-term commitment to make a particular dream come true? What if he doesn't have enough time left to accomplish his aims? Or should he take the next flight out to the Bahamas and live the rest of his life on a boat in the Caribbean, fishing, drinking rum, with his feet up in a hammock? The answer, for him, was to live with the paradox. To live as if each day was his last while continuing to do the long-term things that those of us who think we have forever would choose. On his deathbed he didn't want to think that he could have accomplished his dream but threw the opportunity away because he was so afraid he might die. AND he wants to enjoy the time he has left. He wants to be grateful for the time he has left and use that time to work towards his dearest life dreams.

That's the paradox we live with as caregivers, too. Yes, we want things to be different and need to plan for and make changes as time goes on. AND we need to find things to appreciate every day because every day COULD be our last. What do you appreciate within the context of being a family caregiver?

This blog is an excerpt from The Spiritual Journey of Family Caregiving.

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.

Elder Fraud and Elder Abuse, Part Two

Another excerpt from The Spiritual Journey of Family Caregiving. Buy it now directly from the author.

Elder Abuse

People think:
"I care about my mother -- that's why I brought her home to live with me when she started to slip. But my own life is starting to fall apart. I just found out my husband is having an affair and my youngest son is failing in school. I'm afraid he might be abusing drugs. I'm at my wit's end and when my mother starts in with her criticisms and complaints I just want to shake her. I have never hit her but sometimes I don't come when she calls for help, and once I gave her an extra dose of pain medication to keep her in bed so I could get a moment's peace."

"I have no choice about being a caregiver and I hate it. My father was abusive to me when I was growing up and he's still a mean-spirited old man. But I can't afford to move out and taking care of him is the price I have to pay. Even though he's in a wheelchair and can't physically hurt me, I feel so angry with him that I just can't tolerate his demands at all. I just let him sit in his dirty Depends all day if he doesn't treat me right."

"I don't have the problems some people I know have with their relatives. If Aunt Mary doesn't do what I want I just threaten to send her to a nursing home and she shuts up."

Reality: None of these people think they are abusing their relative. After all they don't hit them. But under the law, the definition of elder abuse includes neglect, deliberate overmedication, and psychological abuse and threats.

The common thread in all of these examples is the caregiver trying to avoid feeling victimized by the circumstances of caregiving. The fact is: nobody can make you give up your own life against your will. If your own well-being (physical, financial, emotional, etc.) is eroded by caregiving it is time to ask for help. Call a family consultant at the Del Mar Caregiver Resource Center, a social worker at the Human Resource Agency or a case manager at Senior Network Services as a starting place.

Another Book Review

The Spiritual Journey of Family Caregiving was featured in Quest, the national magazine for the Muscular Dystrophy Association this month. It's a nice magazine. You might want to check it out.

Elder Fraud and Elder Abuse, Part One

An excerpt from The Spiritual Journey of Family Caregiving.

On Oct. 27, 2000 the San Jose Mercury News reported on the case of a San Jose mortgage broker charged with embezzling more than $700,000 from his 90-year-old mother. The article indicates that he had taken control of his mother's finances when she became incapable of handling her own affairs and had taken multiple mortgages out on her home and made large withdrawals from her investment accounts for his own benefit. He was eventually forced to sell her home because he could not make the payments.

This is a pretty extreme case but, unfortunately, elder fraud and elder abuse is not uncommon. In fact, the conditions that lead to these abuses are the very substance of what all caregivers have to contend with. What people believe is a reasonable response to a stressful situation can look very different in a court of law. Could you be committing a crime and not even know it?

Elder Fraud

People think: "I'm doing so much for grandma. I'm with her round the clock. I change her diapers. I listen to her complaints all day long. I answer the same questions over and over. Sometimes she doesn't recognize me and screams at me to get out of her house. You don't know what I go through! And meanwhile, I'm not working, I have no income, I can't take care of my own life because I'm taking care of hers. I deserve to be compensated for this! Who's going to take care of me when I'm old? I have to manage grandma's finances because she can't figure it out anymore. When I have her sign checks I arrange to have some of the money go to me. She doesn't know-she doesn't see that well. But it's ok. After all, it's MY money. When she dies, it's going to me anyway - or it ought to be. So what's the big deal?"

Reality: Feelings like those expressed above are perfectly natural -- I hear stories like this every day. However, when a person starts taking compensation from grandma's pocketbook the line has been crossed into elder fraud. No matter how it feels, there is no justification for taking someone else's money for your own purposes in a court of law.

People think: "But if I don't use her money for myself I will have to leave her to get a job and who will take care of her if I'm not there? My mom won't let anyone take care of her but me! And we can't afford to hire someone even if she did."

Reality: This is a hard situation to deal with by yourself. Luckily, you don't have to. Ask for help. If you are dealing with dementia or some other form of brain impairment call Del Mar Caregiver Resource Center. If you are involved in some other form of elder caregiving, call Senior Network Services to find out what services are available. Speak with a family consultant, counselor or social worker who can help you sort out your options and feelings. Even joining a support group can help you figure out ways to get your elder to accept help from social services or other friends and family so you'll be free to create a healthier life for yourself.

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.

Deciding to Use a Nursing Home

The following blog entry is an excerpt from my book The Spiritual Journey of Family Caregiving. Buy it now by clicking here!

The decision to place a loved one in a nursing home is always tough. We feel horrified by the options available to us. We feel guilty. We worry that the move will send our loved one into a tailspin. But when caring for a loved one at home requires more emotional and physical resources than you have available using a skilled nursing facility is sometimes the best decision. Consider the cost to everyone involved.

I once had a caregiver tell me that she had given up her career to take care of her mother and that in the course of caregiving she had become a virtual prisoner in her house. Her mother could not be left alone and the daughter could not find the paid help she needed. She had lost all her friends because she was never available to see them. She was unable to sleep because her mother would call for help several times a night, and she was losing her hair from worry and stress. There were very few workable options left but the caregiver hung on and on until the day she was diagnosed with a serious illness. Her doctor insisted that her mom be placed immediately.

All her life the mother had told her daughter “I’ll kill myself if you put me in a nursing home,” but within a few weeks she adjusted and eventually came to like her new caregivers and friends. My job shifted to consoling the caregiver for not doing it sooner.

The most loving option is to do what people need, not necessarily what they think they want. Keep in mind that placement is not the end of your caregiving career. The family caregiver can and should play an important role in providing the emotional, spiritual, and advocacy support the placed person needs to weather such a difficult transition in the best way possible. This shift in role begins the moment you start to prepare for making the move.

Preparing for Making the Move

Step 1. Prove the Need. What are the costs involved in keeping the patient at home? Is the patient’s safety at risk? Is a single caregiver being expected to meet all the patient’s needs at the risk of their own health and well-being? Are there community services or paid services available that are adequate to keep the patient at home?

Step 2. Involve the Family. The whole family needs to be in agreement about this decision as much as possible. Family meetings are hard to arrange when people live out of town or have busy schedules. It can be emotionally difficult to face the fears and guilt and sadness such a choice entails. But for the good of family relations an effort to communicate via telephone or email must be made. Let everyone express their feelings without attack. Decide as a group to put each person’s needs ahead of other people’s desires and make choices based on what’s best for all concerned. Ideally, the patient should be involved in this meeting but when dementia is fairly progressed that is not always the most prudent path. Also, if family members have differences of opinion which cannot be easily resolved it can be very helpful to do this kind of preplanning with an objective third party acting as facilitator.

Step 3. Talk to the Patient. This has got to be one of the hardest things to do. The ideal situation is to approach the patient with honesty and a clear explanation of the reasons why the family wants them to consider this option. If the patient has enough savvy to be able to make rational choices about their future include them in the decision-making process from the start. You may find that with enough advance preparation they may actually feel relieved that their needs and the needs of their family are being well thought about.

Sometimes, though, the demented relative completely forgets that any discussion took place or is too volatile to be included in the first place. In any case, the patient is likely to need (or demand) a chance to express their full feelings. Responses like “How could you do this to me?” or “I’d rather die than go to a nursing home” are expressions of fear and grief. It can be hard to be treated with such reproach but consider what you might need if you were in their shoes and reach for the most loving approach you can. Acknowledge the pain they are feeling as best you can, but resist letting yourself be guilt-tripped into making a choice that is simply not sustainable. Allowing your patient’s fear to run the show is not, in the long run, healthy for either one of you. Stay firm. Stay loving. Get help with the feelings that come up by talking to a counselor, a supportive family member or friend.

Step 4. Begin Your Search. Now it’s time to visit homes if you haven’t already. Get on waiting lists. Talk to your financial and legal advisors. Talk to your local senior service agencies to find out what kinds of complaints have been registered (if any) about the homes you are interested in. Take your time. Plan ahead if possible so you don’t have to make a swift decision from a limited number of choices. And keep in mind that in many parts of the country there is a shortage of space in local homes and waiting lists are the norm. The wait for MediCal or Medicare-paid beds can be even longer. You may need to expand your search for facilities to another county or even further away. The commute may be inconvenient, but the quality and price of the facility might be worth the ride. Be flexible. Be brave. Let go of finding the perfect situation and you’ll get what you need.

Should I Move in with Grandma?

This blog post is excerpted from my book The Spiritual Journey of Family Caregiving. Buy it directly from me for $14.95.

I’ve had a number of young people in their 20’s or early 30’s decide to take on the caregiving of a beloved grandparent while staying in the grandparent’s house. Because the cost of housing is so high in the Santa Cruz area many people think doing caregiving in exchange for housing is a good deal. Grandma gets in-home care for free, the rest of the family doesn’t have to worry about her, and the grandchild has a place to live for free while figuring out what they’re going to do next. Everyone wins, right? Not so fast! The typical scenario goes like this:

Grandma has been living at home without supervision for a long time but then does something that scares the family often enough that they decide she needs more help. They offer this great arrangement to a granddaughter who is currently unemployed, just got divorced or never married and has no children. She’s the one person in the family with the fewest responsibilities and the greatest need, and she loves grandma, so she says yes. Nobody including the granddaughter thinks that grandma needs more than a few hours of assistance a day because, after all, she’s been living alone up until now. It looks like a pretty easy assignment.

So granddaughter moves in and the first thing she sees is that it takes grandma three hours to take a shower, get dressed and have breakfast (if she does any of these things at all.) Nobody has been around to see this and grandma always said she was fine and didn’t need any help. She was always dressed by the time the family saw her and she still had her social skills except for the obvious memory lapses so it appeared everything was going okay. But now granddaughter sees how hard things are for her and thinks, “Oh my goodness, this is terrible. I can’t let her struggle like this!” So she does the compassionate thing and helps grandma shower, get dressed and undressed and makes all her meals in addition to whatever else the family assumed she’d be doing.

Then granddaughter finds grandma’s handbag in the dishwasher when she’s cleaning up one day. She sees that grandma cannot remember the sequence of events needed to make a peanut butter sandwich. She sees that grandma doesn’t remember how the microwave works and leaves the heat turned up on the stove all day or the water running. Not only that, grandma starts demanding more and more attention—some of it she needs, some she just expects, sometimes it’s once or twice in the middle of the night. Sometimes she doesn’t know who the caregiver is and yells at her for invading her home or accuses her of stealing items she continually misplaces. Granddaughter was only supposed to do some light housecleaning, make sure medication was taken correctly, make the evening meal and be available if grandma needed her at night. She was going to take community college classes or get some job training but now she’s afraid to leave grandma alone during the day. Can someone who acts like this be trusted alone by herself? Could she even remember to dial 911 in an emergency? In almost no time at all the caregiver is a prisoner in the home, she has no time to do what she needs to do about her own life, she starts asking for help, and the family doesn’t understand why.

Then I hear the following complaints: “What’s her problem?!! She has free room and board! I have to work hard to put food on the table for my family and all she has to do is sit around and give grandma her meals and medication. Grandma was getting dressed by herself before! She must be making her dependent. And, personally, I think she’s just trying to take advantage of all of us. Grandma says she’s been stealing from her! Can you imagine that? The nerve of her! She just wants a free ride!” This is not a win-win situation.

Before arrangements like this are made the family needs to know a few facts.

First, everyone needs education on the typical course of the illness Grandma is diagnosed with. Read The 36-Hour Day or some other comprehensive dementia-care classic. Even those who don’t plan to do any hands-on care should know what kinds of things the hands-on caregiver is likely to encounter so they know what to expect.

Second, it’s important to be aware of the value of the services a live-in caregiver provides. One home care agency we work with (in Santa Cruz) charges $265 a day for a 24-hr live-in assistant. The same agency charges $18/hr for shorter lengths of time. Other homecare agencies charge a lot more. If you advertise through the newspaper you might find an independent home-care worker who will charge $12-15/hr but no matter how you do the math, daily live-in help is worth a lot!

But getting free room and board is worth a lot, too, you say? Again, let’s do the math! A typical studio apartment or small one-bedroom in the city of Santa Cruz rents for between $850-1200 a month. Shared housing (two or more people sharing a multi-bedroom house) runs between $550-800 per bedroom (although a few “bargains” exist in converted storage sheds or by choosing to live in a more remote or run-down location.) If the caregiver has a private bedroom, all utilities paid, and access to the entire house and yard, in Santa Cruz that work exchange could be worth about $750/month or more. At $15/hr, $750 will buy you 50 hours/month of homecare services or 12 hours/week. In lower rent districts, the number of work exchange hours would be even less. But this is family, you say? OK, but even if the service is valued at the minimum wage of $6.75, that’s 111 hours/month or less than 25 hours/week. Under any circumstance, for their basic health and well-being, the caregiver should still have a few days or evenings off.

If a family member cannot be trusted to live in their home alone anymore, it’s important to understand that, eventually, more than one person will need to be involved in their care. Live-in arrangements need to include regular time off and, if the time required for caregiving prevents the caregiver from having a normal part-time job, adequate compensation in addition to room and board should be provided to give the caregiver an income and a reasonable standard of living.

Making Choices About Living Arrangements for Dementia Patients

The following post is an excerpt from my book The Spiritual Journey of Family Caregiving available directly from me, autographed, for $14.95 plus shipping.

To Move or Not to Move

I moved this past month and coincidentally (or not) almost all of my new clients this month have been grappling with issues related to moving. Should I move my mom in with me? Should I move closer to her? Should I be looking for a nursing home or an assisted living facility for my relative? How can I avoid moving my spouse? These are big questions with few simple answers. Moving is stressful even under the best of circumstances but when dementia is part of the picture some kind of change in living arrangement is almost always absolutely necessary as time goes by. This is such a big issue we’ll be looking at various aspects of it over the next few months. I hope it helps sort things out for those of you grappling with this very challenging subject.

The Choice to Keep a Loved One at Home

This is by far the most popular choice, the one most people say they want. And yet, with Alzheimer’s Disease and other progressive dementing illnesses, it is a choice that many people will say is impossible. The Number One complaint I hear from caregivers is that somebody they trusted tried to convince them to place their relative despite their wish to do otherwise. Instead of receiving help in how to keep their relative home they heard “You can’t expect to be able to do this! It’ll kill you!”

Please understand the love and concern behind such a statement. According to the Journal of the American Medical Association (JAMA), in an article printed a few years ago, dementia caregivers over the age of 60 die at a much higher rate than people who are not caregiving. And yet, a new study recently published in the New England Journal of Medicine found that a year after the death of an Alzheimer’s patient, hands-on caregivers were less depressed than those who moved their loved one to a nursing home. Even though taking care of a person with Alzheimer’s Disease is known to be harder on people than taking care of someone with cancer or many other diseases, death appears to bring closure for caregivers while institutionalization can bring guilt and loneliness. In my work with family caregivers I’ve noticed that if the caregiver has enough help to handle the stresses involved, caregiving at home brings the highest sense of satisfaction. There’s the pride and increased self-esteem that comes with the completion of any hard job and relief that the journey is over. Hands-on caregiving also gives the opportunity to heal old wounds or make amends for past behavior.

What you most need to know is that most of the time caring for someone with dementia at home CAN be done and—if you are willing to do whatever it takes—it is often the best solution for all concerned. The key, though, is being willing and able to do whatever it takes.

• Are you willing to ask for help?
• Are you willing to make changes in your home environment and normal routines?
• Are you willing to accept help from wherever it comes (family, friends, neighbors, church members, and community agencies) even if you would prefer that your problems be kept in the family?
• Are you willing and able to have care workers in your home 24 hours a day at the very end?
• Are you willing to deal with incontinence, difficult behaviors and physical disability for as long as it takes, even 10-15 years?
• Most importantly, are you willing to do whatever it takes to take care of yourself so you are able to be a caregiver as long as you desire?

You CAN do this work if it’s your highest heart’s desire. The first caregiver I met through the Alzheimer’s Association was a woman in her 90s who proudly cared for her husband at home until he died. I’ve met caregivers so frail I couldn’t believe they weren’t patients themselves who steadfastly stayed the course. They usually (but not always!) have a patient who is sweet and appreciative, they accept help wherever it comes from, and they know in their hearts, without any doubt, that this work is their highest calling.

Not everyone is so lucky.

Some patients are abusive, keep the family up all night, wander, or have a history of having been so difficult throughout their lives that people who could have helped stay away. If solutions are not found for these problems, home care can become a nightmare.

Some people don’t have family members who can help, refuse to ask assistance of neighbors or friends and can’t or won’t pay for services. Some people have chaotic work schedules, are raising small children, and can’t meet the needs of someone with severe and worsening dementia as time goes on without a lot of help. Some have health problems of their own and others have made choices that make long-term caregiving an impossibility. Then different solutions have to be found.

But let’s assume, for this article, that you’re going to make this choice. What needs to happen to make that successful? The following list of suggestions is the best place to begin no matter what decisions you make about caring for your relative but they are absolutely essential for anyone planning to care for a loved one at home.

1. Find out everything you can about the typical course of the illness or conditions you are grappling with. What are the most likely issues to arise? What is the worst case scenario? What agencies provide services you might need? Where can you get more information?

2. Call a family meeting. Include your patient if they are still capable of making choices and planning for the future. The purpose of the meeting is to educate people about the disease and make sure everyone is on the same page when it comes to what’s coming next. Choices will have to be made about care and who can provide it or pay for it. If your patient will need 24-hour care, eventually, the job will not be possible to do at home if it falls to one or two people alone.

People need to sleep, eat, get plenty of exercise and social contact and have ways to find enjoyment in life. A plan that does not include an adequate night’s sleep and time off for rest and recreation is not a realistic plan. How will the family divide the work or find and hire workers to supplement the work family members do? What community services is the caregiver or patient eligible for? What will your insurance plan cover? What resources do you have to pay for care (rainy day savings, a line of credit or a reverse mortgage on the house, etc.) Is there an extra room for a care worker to spend the night or can family members take turns doing night care duty? Will people need training to handle incontinence, lifting and helping the patient move from a bed to a chair, or managing difficult behaviors? There needs to be a contingency plan made for the worst case scenario.

If you don’t have all the information you need at this first meeting, split up the task of finding the information and schedule more meetings until a plan of action is in place. Expect that the plan will change because the true course of the illness is what will dictate the actions required and that can never be predicted 100% in advance. But at least you will have talked about possible scenarios and will have done the advance planning required to allow your most desired outcome a chance to come true.

3. Based on what was discussed at the family meetings, make any needed appointments with attorneys and/or financial planners. You need to know how to invest or free up money wisely and legal documents need to be written that will allow a person you designate to make necessary decisions for you and your loved one should one or both of you become incapacitated and unable to make decisions for yourself.

4. Learn to let go and share the caregiving with others before you think you “need” to. Your loved one needs to get used to receiving help from others BEFORE a crisis forces such a change to occur. Get in the habit of having time off every week for your own interests. Most people with dementia become very dependent on the person who provides them care. Don’t let that responsibility be yours alone!

5. Make taking care of your own physical and emotional health your highest priority. Forgive me if you’ve heard this before but, as on an airplane, you must put your own oxygen mask on first before attempting to help other people. Create an enjoyable routine that includes adequate rest, exercise, nutritious meals, social contact and recreational activities. If/when caregiving activities start to eat into that time a big red flag should come up for you. Never skimp on these activities except in an emergency and know that an “emergency” that lasts more than a few weeks is not an emergency—it’s time to make a change in how caregiving is done and how much help you need to have.

6. Join a support group either in person or online. You don’t have to tough it out on your own even you have no family or friends nearby. A group of people who understand what you are going through can even be a better source of support than long-time friends who don’t know how to help in exactly the way you need. In a support group you’ll make new friends, share some laughs, maybe even create a caregiving cooperative to spread the work around and lighten the load. And there’s nothing like getting input from a variety of sources for inspiring you with how human creativity can come up with solutions for just about any challenge you may encounter.

7. Keep a notebook with all the information anyone would need to provide care for your loved one inside. List all the medication he or she is taking, what they are for and how and when they need to be taken. Have emergency contacts with social security numbers, Medicare and MediCal information, health insurance numbers and anything else a person filling in for you would need to have in an emergency.

8. Call family and friends regularly and keep them informed of what’s happening. Keep them involved by sharing your concerns and help them help you by planning respite breaks or by accepting their offers to be of assistance in other ways. A home-cooked meal brought over with a loving smile can go a long way when times get rough. Say “yes” when people ask to help and insist that they let you help them.

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.