During the last few years of my Mom’s illness, there were times when visiting with her was very emotionally taxing for me and my siblings. Not being recognized by one’s own parent hurts. That pain discourages one from visiting, and it’s all too easy to rationalize not visiting by telling oneself “what’s the point – Mom won’t remember anyway?”
I was spared a lot of that process, since I lived near Mom and could visit her frequently. Mom always smiled when she saw me, so I knew there was some kind of recognition even if she couldn’t remember my name. That smile made it all worth it.
I’ve recently come across some research (via an NPR piece) that sheds light the ’emotional memory’ of demential patients, and how it lasts even when factual memory does not.
You can read the original study here. Here a few salient takeaways from the study’s lead author, Edmarie Guzmán-Vélez:
You know, all of these people that say it doesn’t matter if I don’t visit my grandma because she won’t remember -and it just shows it does matter. Our actions do matter.
So go spend time with your relative who suffers from dementia! You will make them happy, even if they can’t remember why.
As Ms Guzmán-Vélez says about her own study:
…it gives me that extra reward I guess to know that every thing that I do is impacting them. And it does make me try to be a better person with them or try to give them good experiences ’cause I know that will make them happy and that happiness will last for a long time.
I’ll second that from my own experience with Mom. The joy I felt knowing I’d brightened her day and made her happier went a very long way to erasing the pain I felt watching her illness inexorably diminish her.
Writing about Alzheimer’s isn’t often fun. Even good news, which is pleasant to bring to you, isn’t necessarily fun.
Today, however, I got lucky. I found out about an article in the BMJ Open online journal published in January by a group of Australian scientists. I got to read about “The SMILE Study”, which included “LaughterBosses” and “ElderClowns”. I kid you not.
The SMILE study (aka The Sydney Multisite Intervention of LaughterBosses and ElderClowns) was, by one measure, a failure. They wanted to find out if humor could alleviate depression in dementia patients. This they did not find.
More on that later, because what they did find is just as good. Humor does reduce patients’ agitation and anxiety. They found that their humor intervention could reduce the occurence of “two agitated behaviours” from daily to once a week.
From daily to once a week. Those readers among you who’ve spent time with a loved one with Alzheimer’s can tell you what a big deal this is. It’s big! For one thing, the results are just as good as what is achieved with Risperidone, a common anti-psychotic, but without the side effects! My Mom was taking that when she was at home – though thankfully at hasn’t been necessary since she moved to her care center. For another, let’s face it, it doesn’t just reduce agitation and anxiety, it makes people laugh and smile. Can Risperidone do that?
This is good news for everyone, but especially for people who are caring for someone with dementia. Make them laugh! Can it get more win-win than that?
To return to the question of depression, it wasn’t a complete failure. Here’s what the researchers write:
Depression, other forms of behavioural disturbances and self-rated quality-of-life all improved more in residents who experienced higher doses of engagement as a result of humour therapy, suggesting that humour therapy does change these outcomes, even though there was not a statistical advantage of intervention over control groups.
The conclusion is not, then, that humor cannot treat depression in dementia patients, but only that this study couldn’t prove that it can. Further study is most definitely warranted by these results.
But to get back to my original point, this was also fun. I mean, where else could read a sentence like “LaughterBosses were not tested for competency in delivering humour”? And reading “some suggest that the label ‘ElderClown’ might not be appropriate in describing the work of the professional performers” immediately called to mind an over-sensitive performer scoffing at term. “Sir, I am an actor!“
“Resistance to care.” What a wonderfully beige turn of phrase, devoid of any of the emotional turmoil that it immediately brought to my mind. If you haven’t cared for a person with dementia, you probably can’t grok how a simple, clinical description evokes so much feeling.
I came across the phrase in this article, Polishing the Gems Who Are Alzheimer’s Patients, by Serena Gordon in HealthDay Reporter. It’s about how difficult it can be for caregivers to be able to understand, and hence deal with, the mental state of their patients.
“Resistance to care.” I’m very familiar with it, and I’m one of the lucky ones: my Mom has the means to afford the care she needs. “Resistance to care” is woefully inadequate to describe the fight my Mom and I had when she needed to see a dentist. One of the worst fights I ever had with her. She was seeing a new dentist for the first time, and the dentist’s office needed some basic medical background information that neither Mom nor I knew off-hand. When I tried to contact her internist’s office for the information, Mom threw what would politely be described as a Category 10 hissy fit. She utterly refused to allow me to call the doctor’s office. Apparently the doctor’s ‘nice’ receptionist had retired, and been replaced with a ‘mean’ and ‘incapable’ one. My Mom thought that because the new secretary wasn’t as good as the old one, the doctor would have to get involved (I don’t understand by what logic my Mom came to that conclusion), and she simply would not allow me to disturb the doctor.
Oy vey. So we got into a huge shouting match. I begged, I pleaded, I got on my knees. (Really, I did.) To no avail. This was before I fully realized my Mom had Alzheimer’s. I’m pretty sure I was in denial; though to be fair I can’t really tell the difference between denial and hope in a situation like this. I’m pretty ashamed of my behavior, of being so angry with her.
Yet even after it was clear that my Mom had a serious case of Alzheimer’s, we’d get into fights. In the early days after her diagnosis, she was still pretty self-sufficient, as far as getting dressed, going to the toilet, basic stuff like that. But she would get lost in the neighborhood, dangerously fail to respect ‘don’t walk’ signs when crossing streets, and so on. Most importantly, she couldn’t competently walk her dog, who as a headstrong dog with some bad habits, required a firm hand on the leash that Mom couldn’t provide. So my siblings and I arranged for some additional dog walking services. That did not go over well!
It’s actually hard for me to remember those episodes when we fought about the dog-walking. They were so ugly and shameful I’ve done my best to forget them. Even though I had learned very quickly that anger never worked, and had switched to pleading, coaxing and begging, Mom was so excruciatingly intransigent. Ms Gordon’s article hits the bulls-eye: what was hard for me to realize that my Mom’s disease not only diminished her ability to handle walking the dog, but it also prevented her from being aware of that. A heart-attack victim knows they need to be careful exerting themselves, but an Alzheimer’s patient doesn’t know their abilities are diminishing.
In an ironic twist, my siblings and I never actually dared tell Mom she had Alzheimer’s. Practically all my life – almost as early as I can remember – Mom has been convinced she had the disease. She was pathologically afraid of it; perhaps because her father had suffered dementia, probably Alzheimer’s, and perhaps as a scientist, her sense of self was utterly intertwined with her intellect. So we dreaded even breathing the word ‘Alzheimer’s’ anywhere near her. That fear may not have been unreasonable. Many times she’d talked about committing suicide if she started to show symptoms of it. But I wonder now if it would have made any difference had we. Would she have killed herself? Unlikely, but she had an iron will; if she really wanted to, she would. Would it have made her more cooperative? I doubt it – for the same reason.
Eventually, Mom stopped being so uncooperative. My sister figured out why. As the disease progressed, Mom would have periods of relative lucidity, when she’d have a pretty good idea of why we were trying to intervene in her life. In those periods, she’d fight to reassert her control over her life. And I do mean fight. All the sharp kitchen utensils – forks, knives, scissors, and so on, had to be hidden, since Mom had been known to brandish them at the caregivers. She’d also broken a table to use the leg as a club, and tried to hit my sister with a chair! But at other times, when she was less lucid, she wouldn’t feel threatened by that loss of control, and wasn’t so combative.
Perhaps the most horrible thing about that period was catching myself feeling grateful that her disease was getting worse, since she was so much easier to deal with. I feel like I die a little inside every time I remember that.
From France comes an interesting study linking retirement age and Alzheimer’s risk. Results from INSERM were presented at Alzheimer’s Association’s 2013 International Conference in Boston.
They found that delaying retirement by a year reduced the risk of dementia by 3.2%, and the effect is cumulative: the overall risk reduction was 14%. That’s a pretty significant impact!
Back in 2008, I was lucky to be present when the late Dr. C. Everett Koop gave an interview for the film I was editing at the time: New York Street Games. He was about 92 at the time, but still sharp as a tack. Off camera, he discussed the secret to his longevity: work. All his friends who had retired, he said, were dead. He made a point to keep on working. Clearly, he was on to something!
Now, my Mom’s Alzheimer’s came on strong 3 years ago, when she was about 84. She was still publishing papers into her late 70’s. I am certain that her diligence helped delay onset of symptoms. In hindsight, I can see lots of early signs that I hoped – wishfully – were just signs of ordinary aging.
It’s also likely that the progress of my Mom’s disease is an example of the benefit of ‘cognitive reserve‘: the idea that factors such as a life of challenging mental work, speaking several languages, having a wide circle of friends, an active social life, and intellectually challenging hobbies can offset the symptoms of Alzheimer’s, even when the physical damage to the brain is present. In other words, people with deep cognitive reserve can have the disease without the symptoms.
This suggests that we can significantly reduce our future health-care cost burdens by providing people with enough education that they’re at least bilingual, and that they can pursue careers as knowledge workers instead of WalMart greeters and McD’s burger flippers. Doing so would very likely have tremendous knock-on benefits such as increased innovation, job creation, more highly skilled workforce, etc.
So here’s my plea to all the ‘fiscal conservatives’ in Washington: save money by investing wisely! Education before weapons, please!
I recently came across this editorial at the Huffington Post by Prof. Elizabeth Fisher:
Even before I read it, I immediately thought of my mother. She was well aware of the antipathy towards using animals for research, and it really got her dander up. Her work, of course, depended on animals. For much of her career, she used rabbits, but in the later years she did much work with cows.
Now, I ought to come clean right off the bat and say that I agree with Prof. Fisher and my Mom. For one thing, I owe my life to a group of rabbits I will never know. My Mom discovered not only the link between oxytocin and the onset of labor, but also the fact that alcohol inhibits the release of oxytocin and thereby can inhibit premature labor. When I was nearly born over two months prematurely, Mom administered herself a dose of ethanol (in the form of whiskey), based on the results she found in her rabbits. And so instead of being severely premature – a very high-risk situation with a poor prognosis in 1963 – I was born healthily to term 8 or 9 weeks later in 1964.
I am an animal lover, and there are moments when it can be difficult to accept that Mom performed research on animals. I know that she was contemptuous of objections to the use of animals in scientific research. She was acutely aware of the difference between peer-reviewed scientific research, for which she felt the use of animals was self-evidently necessary, and product and cosmetic testing. I don’t think Mom ever opposed ending product testing on animals. As a scientist she knew it was unnecessary. Her big blindness, I think, was that she could not see that the most of the rest of the world couldn’t make that distinction.
Now, of course, animals are absolutely essential to Alzheimer’s research. If we’re ever going to figure out how this dread disease works and how to fight it, it will be because a lot of rats and mice will have given their lives to the cause. I don’t say that to be glib or facetious. We owe a debt to these animals and to honor that debt we must hold our scientists to high ethical standards in the use of animals in research. It sounds like Prof. Fisher, herself studying Alzheimer’s using mice, is doing all the right things. Her editorial omits mention of product testing, which I think is a serious omission. The world needs to understand that testing mascara and shampoo is not the same thing as looking for a cure for Alzheimer’s.
Go read this article
! A report of exciting research into treatment of memory loss, dementia, and surprisingly, addiction. Studies show profound epigenetic effects on the formation and recovery of long-term memories. Memory associations play a big role in addiction, so there’s a connection.
I find epigenetics really fascinating, not least for the meta-lesson it teaches us about scientific understanding. For a long time, all genetic expression was thought to be evolutionary – your genes behaved in ways determined by thousands of millennia of evolutionary pressure. But epigenetics show us that the present environment can affect gene expression radically.
The lesson to learn here: we should never think we know, but always assume that though we might be less wrong than before, we’re still basically always wrong.
1. “Old age” is not an excuse.
While some memory loss, cognitive decline and behavioral changes are normal as we age, Alzheimer’s disease is not a normal part of aging. Advanced age is the greatest known risk factor, however, with incidence of the disease doubling every five years after age 65. Also, while Alzheimer’s disease typically strikes people 65 and older, a rarer form of the disease, known as young-onset or early-onset Alzheimer’s disease, presents in people as young as in their 30s and 40s.
2. Look for patterns.
All of us from time to time forget someone’s name or what we ate for breakfast. But consistent forgetting raises a red flag. It’s easy for anyone to forget to pay a bill once. There is a problem if the same statement gets paid five times or if months go by without paying bills.
3. Symptoms can mimic other conditions.
Identifying the disease or problem that is causing memory loss helps with next steps. Some memory problems can be readily treated, such as those caused by vitamin deficiencies, depression or thyroid conditions. Other memory problems might result from causes that are not currently reversible, such as Alzheimer’s disease. With Alzheimer’s disease, symptoms gradually increase and become more persistent.
4. Not every case is the same.
There are general warning signs of Alzheimer’s disease, but not everyone exhibits the same ones or at the same time in the progression of the illness. In addition, some individuals with the disease manage to cover up symptoms: for example, they might hide behind jokes or disinterest.
5. Alzheimer’s impacts day-to-day living.
Alzheimer’s disease is not only about memory problems; it also affects a person’s ability to function day-to-day. It can cause difficulty performing familiar, pre-programmed tasks like dressing or bathing; misplacing items more frequently; becoming lost while walking or driving; and loss of interest in important responsibilities, such as paying bills. The concern is not so much if someone forgets where the car keys are, but if the person does not know what the keys are used for.
For pre-retirees, symptoms of Alzheimer’s disease often first become noticeable in the work environment. A supervisor, for example, might note that the person is unable to concentrate, can no longer multi-task or is performing at a lower level than in the past.
6. Alzheimer’s disease has cognitive symptoms.
Common cognitive symptoms include:
- short-term memory loss
- problems with verbal communication such as not finding the right words or repeating things
- confusion about time, place or people
- trouble concentrating
- lack of judgment
- difficulty performing familiar, pre-programmed tasks like dressing or bathing
- misplacing items more frequently
- becoming lost while walking or driving
- disinterest in important responsibilities, such as paying bills
7. Alzheimer’s disease has behavioral symptoms.
Behavioral symptoms might include:
- personality changes
- unexplainable mood swings
- sundowning — increased agitation in the late afternoon/early evening
- expressing false beliefs
- inappropriate sexual behavior
Behavioral symptoms are often what trigger family caregivers to more seriously weigh additional help, such as a home health aide or long-term care placement. The results of a Harris Interactive survey prepared for the Alzheimer’s Foundation of America found that about half of family caregivers surveyed said they would consider long-term care if aggression became too difficult to handle, the person self-harms or they fear injury or harm to themselves or other family members.
8. Check out warning signs.
According to a study of participants who obtained free, confidential memory screenings during the Alzheimer’s Foundation of America’s National Memory Screening Day in 2010, 74 percent were worried about their memory, but 83 percent of them had not discussed concerns with their health care provider. Why not? Forty-six percent said that they did not think that their memory issues were severe enough, and 20 percent said that their health care provider had never asked them about their memory.
Start with your primary care physician. Depending on findings, the physician may recommend follow-up with a specialist. If you’re a Medicare beneficiary, it’s important to know that “detection of cognitive impairment” is a feature of the new Medicare annual wellness exam.
9. Diagnosis is 90 percent accurate.
Although Alzheimer’s disease can only be confirmed by an autopsy, clinicians can now diagnose Alzheimer’s disease with up to 90 percent accuracy. Diagnosing “probable” Alzheimer’s disease involves taking a complete medical history and conducting lab tests, a physical exam, neuro-psychological tests that gauge memory, attention, language skills and problem-solving abilities, and brain scans.
10. Don’t just take the diagnosis and run.
Good communication can maximize your visit to a physician. Ask questions such as:
- What other tests should I take?
- Should I see a neurologist, geriatrician or other specialist?
- How does the disease progress?
- What are all the available treatments, and their effectiveness in terms of helping to slow progression of symptoms?
- Do the medications come in different forms (liquid, capsule, patch)?
- Are there clinical drug trials that would be appropriate for me?
- Besides medication, are there behavioral interventions and lifestyle changes, such as diet, exercise and mental activities, that might help?
Next steps should include getting better-educated about the disease, obtaining support services and planning for the future. With that in mind, be proactive by:
- Finding out about national, local and online resources, such as educational workshops, support groups and discussion boards for both diagnosed individuals and family members
- Checking out the availability of various professional care services, such as adult day programs or home health agencies, in order to help a person remain independent longer and provide respite to family caregivers; and long-term care facilities when appropriate in the future
- Preparing estate planning documents and advance directives, such as a will, a living will that states end-of-life wishes and a durable power of attorney that appoints a person to make medical decisions on an individual’s behalf
- Modifying the home environment in order to prolong independence, maximize safety and improve quality of life; this might range from de-cluttering walkways to prevent falls to securing doors in a way that are difficult to open to thwart wandering — a common behavior that results in about 60 percent of people with the disease
This process involves — and helps — both the person with Alzheimer’s disease and family members. Someone who obtains a diagnosis earlier in the disease process when cognitive skills are more intact can make legal decisions and express wishes for end-of-life care, relieving family members of that decision-making. Support services can help lessen the emotional, practical and even financial toll of the disease; research studies show that caregivers who receive counseling and support services can help delay placing their loved ones in nursing homes.
Given that Alzheimer’s disease can last two to 20 years from diagnosis, caregivers often face a long and bumpy journey with loved ones. As one caregiver whose husband has Alzheimer’s disease noted: “It is a devastating disease that you know won’t get better. You just have to try and hope for a good day and then prepare yourself for a bad day.”
An Icelandic company, Mentis Cura, claims 85% accuracy for their newly-developed non-invasive test for Alzheimer’s Disease, a biomarker they’ve called Sigla. This is really interesting news. First, because proper treatment begins with proper diagnosis, something that has heretofore been very difficult for Alzheimer’s. But it’s also interesting because of the underlying technology – it’s all old-hat! They’ve come up with an ingenious method that combines EEG, a tried-and-true technology that’s been around for years (first human EEG was measured in 1924!), with the computing power of modern ‘Big Data’ techniques. The system is able to distinguish between depression and dementia, and even between Alzheimer’s, Mild Cognitive Impairment, and Lewy Body Disorders.
My only concern is the fact that they use a proprietary database. I certainly understand why – it’s the only way the can make money from it – but I wonder how they accumulated the dataset. Did they use publicly available or government-funded sources? If so, is it fair to commercialize them? More importantly, if it’s proprietary, how can it’s effectiveness be verified?
The flipside of course is that it will not be that hard for others to develop their own database. Developing a non-infringing algorithm may prove tougher, but perhaps not impossible.