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!

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

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

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

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

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

Early Behavioral Indicators of Dementia

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

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

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

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

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

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

Codependent No More

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

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

Codependency as a Precurser to Dementia

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

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

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

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

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

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

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

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

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

Age Related Changes and Memory Loss

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

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

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

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

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

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

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

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

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

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

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

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

Conflict Resolution and Family Caregiving

I used to work as a Family Caregiving Consultant for the Alzheimer's Association and later for Del Mar Caregiver Resource Center in Santa Cruz, CA. Conflict resolution was one of the most challenging aspects of long term family caregiving -- so many factors to be worked out, and such committed and heartfelt views. Here are some excerpts from an article I wrote on the subject back then. A new version of this can be found in my latest book, The Spiritual Journey of Family Caregiving. The book can be found both on my own website and though my shop on Etsy.com.

----

Sometimes when I work with families I think of my clients as being on a see-saw. One person in the family voices a very strong opinion about what HAS to happen and another family member insists in an equally loud voice that he or she wants the opposite. The balance of power wildly swings back and forth until one person falls off and the other person (merrily?) goes on their way doing exactly what they want without interference. (Then they come to complain to me that no one in the family "gives a damn" about the person they're taking care of so they have to do everything!)

When I was a kid my friends and I liked to play the see-saw game where the idea was to learn how to keep the see-saw in a balanced position. This was possible but very hard to maintain sitting way out at the ends. But as we learned to move our seats closer and closer towards each other we would eventually get to the point where we could sit in balance with almost no effort at all.

As an adult I forgot the see-saw game and I certainly never applied it to the game of life; but if the laws of physics are, in fact, the laws of nature, then why wouldn't they apply to interactions between people and not just interactions between objects? Let's explore that concept in the arena of conflict in general and then apply it to family caregiving. I'll start with an example from my life.

When I was in my early 20's I had a conversation with a wise elder of the Wampanoag Indian tribe in Massachusetts that made a lasting impression on me. I wanted to change the world, was a staunch vegetarian, and believed that how I lived and the food I ate (or didn't eat) was an integral part of my overall mission. Yet I couldn't understand why my family and many other people rejected my behavior with such vehemence —after all, I was on the side of what was right and good, wasn't I?

Manitonquat said he admired the motivation behind my choices but believed strongly himself that the extremity of my stance was counterproductive. His choice was to teach the sacredness of all things, ourselves included, and to help people feel grateful to the animals and plants that gave their lives for our sustenance. He wanted to help people love the earth and make sure to treat it well regardless of what one ate. He believed that if he could help get mainstream Americans, through love, to only eat as much meat as they needed and to start by experimenting with other yummy protein sources one day a week it would have a much greater impact than converting a small group of people to become total vegetarians (which might not be a sound choice for the planet, in his opinion, anyway).

Now, of course, I didn't really understand what he was talking about until many years later when his words came ringing home. I chose to give up being a vegetarian to cope with serious health concerns and couldn't believe the condemnation I heard from my vegetarian friends for "giving in." Their polarized stance made me feel unloved and angry because I realized if they couldn't support me in a life choice that had an obvious and immediately beneficial impact on my personal well-being, how could they ever expect anyone else to respect their (my old) perspective about what was best for the well-being of the planet (i.e. all of us)? The damage inherent in polarized politics became painfully apparent to me in that moment, as it has quite often in recent times. Now, as a family consultant, I see the impact polarized positions create in the lives of caregivers and, ultimately, in the lives of the people they care for.

On the polarized ends of the see-saw are always two people who are absolutely commited to what they believe is right; yet, it is a rare moment when I see people acknowledge that their commitment is a beautiful thing they have in common! In fact, the reason people often take polarized stances is to counterbalance an extreme position on the other side. Their commitment to justice and fair play, if not love, is what creates the imbalance AND it is that very commitment that can turn things around if they apply the laws of nature skillfully.

Remember, the see-saw game? The way to create balance easily without taking extreme positions is for both people to move closer together. You have to look for sources of commonality and learn to acknowledge what is right about each other's perspective. This is easier said than done but if people didn't have the goal of making things go well (at least from the perspective they see things from) there wouldn't be an argument in the first place. We all want things to go well -- hooray! -- let's see how that can be done.

The most charged and most typical family argument I see every day is the one around the decision to place mom or dad in a nursing home. One sibling, usually a devoted daughter, insists that mom (it's usually the mother) should get to live at home to the bitter end no matter what it takes while other family members believe a nursing home or residential care facility is a better choice. The one who wants mom at home will often say the others obviously don't care about mom—mom always said she'd rather die than be placed in the nursing homes she remembers from her childhood -- and the right thing, the moral thing, is obviously to keep her at home. The other family members feel condemned—they know mom might have a difficult emotional transition to make—but they also see how full-time caregiving is destroying the life of the one who is primarily in charge and, for a wide variety of reasons, they can't or won't do what little sister has done.

So they express themselves in a polarized way to counter the criticism they feel: "No! You're wrong! You're not doing a good enough job! Mom would be better off with her own peer group with trained professionals taking care of her needs!" They believe this is a loving stance, a statement of how much they do care for their parent, but it doesn't come across this way.

Neither side feels heard, both sides feel condemned and unsupported, and the impasse remains in place. What usually happens is the one who wants mom home insists on doing it no matter what and, because other family members don't agree, she gets no help. The breach in family relationships that happens as a result is often never repaired.

But what would happen if one person came closer to the middle of the see-saw and said, "I hear how much you love mom and how much you are trying to meet her needs. Tell me more. How did you come to believe this is the best solution?"

If one person felt truly heard, loved and acknowledged wouldn't they eventually be curious about why their so very loving sibling believed the opposite? Old family arguments and long-standing roles and dynamics obviously play a role in this but often the simple skill of learning to listen when everything inside is screaming "NO! LISTEN TO ME!" makes the biggest difference. Then, of course, it's important to take your turn so the reasons behind your stance are heard as well but that often has to come second.

Then what? Well, I've seen so many different solutions to this particular impasse I find myself amazed at the levels human creativity can achieve when everyone is in alignment with the highest good of everyone involved. If little sister is exhausted by being the primary caregiver and big sister can't help because she lives several states away but is willing to help pay for a nursing home maybe that money could be used for respite care instead. Maybe younger brother who is too emotionally distraught around his parents to want to be involved can be convinced to handle financial arrangements or caregiving responsibilities that don't involve hands-on care. Some people choose to use a nursing facility but come and take their relative out for a walk or a treat every day. Maybe if little sister met Mary, the friend of the family who LOVES her assisted living arrangement, she wouldn't feel so bad about helping mom adjust to a new home. Maybe if mom visited Mary and joined her for a meal and activity session she would suggest moving herself. (I actually HAVE seen this last scenario many more times than once!) But before any of these possibilities can happen, people have to be willing to move their seats closer to the center of the see-saw.