Update on Opa's Health

Opa has had some difficulties since his cystoscopy which was done a couple of months ago as part of his annual physical checkup. The results were good -- no signs of bladder cancer -- but he experienced some complications.

Since finishing the course of antibiotics, the incontinence has improved significantly, but there is still blood in the urine. Plus there are side-effects from the antibiotics: diarrhea, fatigue and poor appetite. Opa's not even interested in his all-time-favourite beverage, milk!

I called the clinic a couple of days ago, thinking that maybe the antibiotics didn't clear the urinary tract infection. I was told that no bacteria grew in the urine culture. This was surprising since the urinalysis revealed white blood cells which usually indicates a UTI. This was also troubling since now the most likely cause of Opa's symptoms is injury to the urethra or bladder from the cystoscopy.

Before returning to the urologist, who is likely to recommend some invasive treatment, we've decided to go the alternative medicine route.

A holistic health care professional recommended Urotonic Medicinal Tea to help soothe and heal the  urinary tract and Ultimate Flora Critical Care to restore proper digestive function and boost the immune system. Opa's iron levels tend to be on the low end of normal since he rarely eats meat, and are probably even lower now that he's had this bleeding problem for so long, so we've also added Floradix.

We were told that improvement of urinary symptoms is generally experienced in about three days with the Urotonic Tea. It's Day 2 now, so we'll see how it goes. Keeping fingers crossed!

Opa Gets Cranky

 

Opa has had some cranky days as of late. And no wonder. Since his yearly physical, which included a cystoscopy that was done a couple of months ago, it has been one thing after another. First he had a nasty fall that resulted in 8 stitches, a CT scan and a 10 hour overnight wait in the ER.

A couple of weeks later, Opa woke up one morning with Bell's Palsy. We knew that it wasn't a stroke because he was unable to move the eyebrow on the affected side of his face (stroke victims are able) and had no weakness in his arms or legs. But it was still quite distressing, for me anyway.

 

The effects of Bell’s Palsy are bad enough, but the dementia created a huge challenge. Opa could not remember why his eye was dry. All he knew was that he wanted to rub it. So he did. Every two minutes. His eye was a mess in no time, red and irritated, with the lower lid hanging lower and lower. Solution: preservative-free eye drops, ointment, and an eye-patch.

As usual, Opa was quite calm about the situation. But I was not. I hovered over him like a mother hen, putting in eye drops every couple of hours, making sure he kept his eye-patch on, applying the ointment at night. How annoying this must have been for him! At first, he didn’t show it. But after a week of this, he told me in no uncertain terms that he would no longer wear the patch and would take care of his own eye, thank you very much. So what could I do except to take a deep breath and hope for the best?

 

As it turned out, the symptoms improved dramatically each day, without any interference from me and despite Opa's frequent eye rubbing. I was quite amazed that, a week later, Opa’s recovery from Bell's Palsy was complete!

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Opa has also been challenged with intermittent bouts of incontinence, an unexpected adverse side-effect of the cystoscopy, which we were told should resolve in time. I bought him Tena protective guards which also had an unwanted side-effect, though it took me a few days to realize it. Several times I was greeted in the morning by soaked mats in the bathroom and standing water in the basement below. The toilet wasn’t plugged so what was going on? I finally clued. Opa must have been quite persistent during the nights when he tried, with eventual success, to flush the offending guards down the toilet! So, needless to say, the guards were scrapped, and we persevere instead with frequent changes of clothing and bedding, never straying too far from a bathroom. When blood appeared in Opa’s urine today, we went to a walk-in clinic. Poor Opa. Turns out he has a bladder infection.

 

Keeping fingers crossed that there will be no more setbacks and that Opa will be back in good form in a few days.

The Red Wine Experiment

In Opa’s family, there is a high risk of cardiovascular disease. Opa himself has cardiovascular disease and had life-saving bypass surgery almost 20 years ago.  At 85, he has outlived all of his 10 siblings many of whom did not survive beyond middle age.

After the bypass surgery, Opa was prescribed the beta-blocker Sotalol to control blood pressure and the statin Lipitor to control cholesterol. Although he took these medications faithfully for more than 15 years, both his blood pressure and LDL cholesterol levels remained high. Opa was also diagnosed with non-alcoholic fatty liver disease (NAFLD) which was attributed to his diet. Four years ago, Opa decided that the side-effects of Lipitor, particularly muscle pain and fatigue, were no longer tolerable. And, against his doctor's advice, he stopped using all prescribed medications.  

Opa hardly eats any meat, but he does love cheese, cream, milk and butter. So when he discontinued the meds, I suggested that we start drinking red wine with rich meals to help lower cholesterol (and also because I happen to like red wine). He agreed even though he didn't particularly like wine and almost never drank alcohol.

Like many others, I have known for a long time that moderate drinking of red wine and other alcoholic beverages is associated with a reduced risk of heart disease. But I didn’t know how much cardio protection wine offers until today.

According to the British Medical Journal, 30 grams of alcohol a day may cause an estimated reduction of 24.7% in risk of coronary heart disease ("standard" drinks of a 5 oz glass of wine, a 12 oz can of beer, and a 1.5 oz shot of hard liquor each contain about 14 grams of alcohol).

Findings published in the American Heart Association journal showed that “drinking 1 to 2 drinks per day, 3 to 4 days per week decreased the risk of having a heart attack by as much as 32%... and was found to be associated with an approximately 20% reduction in the risk for ischemic stroke and may even be beneficial in preventing subsequent strokes.”

In regard to mortality by all causes, the American Heart Association published a 2010 review showing that moderate alcohol consumption reduces the risk of mortality by all causes by 20%. (It should go without saying, but I'll mention anyway that high levels of alcohol consumption show the opposite effect.)

But what about statins?

Statins also reduce mortality. According to a recent Cochrane review, statins reduce risk of mortality by all causes by 0.76%. Across studies, for every group of 100 patients who did not take statins, 5.17 died within a few years, and for every group of 100 patients who took statins, 4.41 died within a few years. This positive effect, although small, is greater than the findings yielded in the previous Cochrane review which showed a 0.07% reduction in mortality. Also noteworthy is that some 15% - 20% of patients using statins experience side effects; muscle aches, fatigue, liver toxicity, and memory loss are among the most recognized to date.

And beta-blockers?

 

The Journal of the American Medical Association (Jama) released a media statement in October of 2012 with this headline: Beta-Blocker Use Not Associated with Lower Risk of Cardiovascular Events. Although beta-blockers have been the standard treatment for coronary artery disease, the 2012 review showed that “beta-blocker use was not associated with a lower event rate of cardiovascular events at 44-month follow-up, even among patients with prior history of MI [myocardial infarction]. Further research is warranted to identify subgroups that benefit from beta-blocker therapy and the optimal duration of beta-blocker therapy.”

So did Opa make the right decision when he switched to wine?

Beta blockers have not been shown to have any long term cardioprotective effects. Statins have been shown to reduce the rate of mortality by nearly 1% but also have unpleasant (and sometimes dangerous) side-effects. And two drinks of red wine (or other alcoholic beverage) a few times a week have been shown to reduce the risk of mortality by 20%, the risk of heart attack by 32%, and the risk of stroke by 20%. Plus side-effects are generally pleasant. So, based on the research, it's safe to say yes, Opa made the right decision. It'a slso safe to say that he made the right decision based on the results of his check-up.

As I think I mentioned in a previous post, Opa recently returned to his doctor for a complete physical (read: he finally said yes after numerous suggestions over the past few years). Results were as follows:

· blood pressure 120/80 (normal)

· LDL cholesterol 2.1 (considered to be in the ideal range for people at risk of heart disease)

· liver function normal (confirmed by blood tests and ultrasound)

Opa’s doctor was amazed (as was I!) and wondered what might account for these results. He smiled when I suggested that it might be the red wine. His advice to Opa? “While I can’t prescribe red wine, I suggest that you just keep doing what you’re doing.”

 

I didn't mention it to the doctor, but I can't help but think that, in Opa's case, the dementia might also be a cardio protective factor. Or maybe not the dementia per se but its meditation-like, "living in the present" effects, coupled perhaps with our calm, low-stress home environment. 

 

Studies consistently show the health benefits of meditation. Most striking is a 2009 study from the Medical College of Wisconsin in Milwaukee presented to the American Heart Association. Findings from the 9-year study showed that participants with coronary heart disease who practiced meditation had 47% lower rates of heart attack, stroke, and mortality by all causes compared to nonmeditating controls.

 

Although Opa would never have been interested in meditation or concepts like "living in the present" in younger days, I don't think this research would surprise him today. In fact, if you ask him what the secret to good health is, he will invariably respond with this:

 

He might also want to add: "And maybe drink a little red wine."

Visuoperceptual Impairment

Visuoperceptual distortions are problems that involve both vision and perception. Common mistakes are illusions (seeing a face in a shadow), misperceptions (mistaking a stain on the carpet for a hole), and misidentifications (difficulties distinguishing daughter from grandaughter).

Understandably caregivers might mistake these distortions as delusions. But it is important to know that what the person with dementia is experiencing is not a true delusion. It is not based on incorrect reasoning or delusional thinking. Rather, it is the result of damage to neuro-visual system. Consequences include but are not limited to:

• needing more time to adapt to changes in light levels (eg when going from a dark room into sunlight or viceversa)
• changes in the reaction of the pupil to light
• loss of peripheral vision (being able to see things outside of the direct line of vision),
• reduced ability to differentiate colours
• problems directing or changing gaze
• problems with the recognition of objects, faces and colours
• loss of ability to name what has been seen
• double vision
• problems with depth perception.

As a result a person  may:

• become lost or disorientated, even in familiar places
• have problems locating people or objects
• misinterpret reflections (i.e. seeing an 'intruder' or refusing to go into a bathroom because it appears occupied, mistaking images on the TV for real people).

Regular eye examinations are important since cataracts, glaucoma, macular degeneration and retinal complications from diabetes also cause visuoperceptual distortions.

As a caregiver, the best approach is not to point out or correct distortions unless they are disturbing to the person experiencing them.

Drug Treatments and Dementia

Cholinesterase inhibitors (ChEIs) are the most common medications used for the treatment of symptoms of Alzheimer disease (AD). Although not recommended for the treatment of vascular dementia (VD), standard recommendations for AD often include a trial of treatment with ChEIs with discontinuation of drug therapy in non-responding patients.

Currently, three ChEIs are prescribed in Canada: donepezil (Aricept), galantamine (Reminyl), and rivastigmine (Exelon). The benefits of cholinesterase inhibitors for people with AD are generally small. The drugs do not reverse the effects of dementia. However, research suggests that in about half of patients, the drugs delay the worsening of cognitive decline for between six months to a year. A minority of patients may benefit more. Side effects of ChEIs include nausea, vomiting, diarrhea, anorexia, weight loss, dizziness, bradycardia (heart rate of under 60 BPM), myalgias (muscle pain), and insomnia.

It appears that the cardiovascular toxicity of ChEIs is underappreciated by physicians. At St. Michael’s hospital in Toronto, the health records of elderly patients were examined. Researchers concluded that ChEI therapy more than doubles the risk of hospitalization for bradycardia.  Of the ChEI-bradycardia patients studied, 11% required a pacemaker and 4% died before discharge. Findings showed that among those patients discharged from hospital more than half resumed ChEI therapy.

Non-drug therapies for dementia include cognitive-behavioural interventions, validation therapy, multisensory therapies such as music and art therapy, and others. Studies of non-drug therapies for dementia have been shown to delay cognitive decline without adverse side-effects, with studies yielding effect sizes similar to those of ChEIs. These therapies have also been shown to a) enhance the ability of AD patients to carry out activities of daily living (housekeeping, meal preparation, eating, personal hygiene, dressing etc.), and b) enhance the quality of life for both patient and their primary caregiver. Data show that day-to-day functioning and quality of life are not enhanced by ChEI medication. 

Increasingly, second-generation antipsychotic medications (or atypical antipsychotics), (originally developed to treat schizophrenia and other psychoses, have been used in AD to stabilize mood and reduce anxiety, tension, and hyperactivity, and control agitation and aggressiveness. Increased use of these drugs has continued despite the known side-effects and risks, including sedation, higher risks of falls and hip fractures, tardive dyskinesia (Parkinson's disease-type symptoms), cardiovascular events (stroke and heart attack), and overall greater risk of death. In response, Health Canada issued a warning in June, 2005:

"…treatment with atypical antipsychotic medication of behavioral disorders in elderly patients is associated with an increased risk for all-cause mortality. Except for risperidone (RISPERDAL), these medications are not approved for use in elderly patients with dementia."

In 2007, the BC Clinical Practice Guideline on Cognitive Impairment in the Elderly recommended environmental, behavioural, and psychosocial interventions as the first line of treatment for behavioural and psychological symptoms of dementia. The Guideline also recommended that physicians exercise caution when prescribing antipsychotic medications for elderly persons with dementia due to their side effects and the increased risk of death. Yet data collected in British Columbia between April 2010 and June 2011 showed that 50.3 percent of residential care patients were prescribed an antipsychotic. The data included 477,765 prescriptions dispensed at a cost of $9.245 million.

Earlier this month, the pharmaceutical company Johnson & Johnson agreed to pay over $2.2 billion to resolve allegations that the company downplayed known side-effects of Risperdal and aggressively marketed its use for seniors, children and the disabled. Other drugs companies have also agreed to pay billions of dollars in response to similar allegations regarding other atypical antipsychotics. A class action suit against Johnson & Johnson is currently underway in Canada (see http://risperdalcanadaclassaction.com/).

References

British Columbia Ministry of Health. (2011). A review of the use of antipsychotic drugs in British Columbia residential care facilities. Retrieved from http://www.health.gov.bc.ca/library/publications/year/2011/use-of-antipsychotic-drugs.pdf

Globe and Mail (November 2013). Johnson & Johnson to pay $2.2-billion to settle U.S. drug probes. Retrieved from http://www.theglobeandmail.com/report-on-business/international-business/us-business/johnson-johnson-settles-suit-over-marketing-unapproved-drugs/article15242384/

Graessel1, E., Stemmer, R., Eichenseer, B., Pickel1, S., Donath, Kornhuber, J., & Luttenberger, K. (2011).  Non-pharmacological, multicomponent group therapy in patients with degenerative dementia: A 12-month randomized, controlled trial. BMC Medicine (9)129. Retrieved from http://www.biomedcentral.com/content/pdf/1741-7015-9-129.pdf

Hagen. B., Armstrong Esther, C., Ikuta, R., Williams, R. J., Le Navenec, C., & Aho, M. (2005). Antipsychotic drug use in Canadian long-term care facilities: prevalence, patterns following resident relocation. International Psychogeriatrics, 17(2). Retrieved from https://www.uleth.ca/dspace/bitstream/handle/10133/378/Antipsychotic_drug_use.pdf%3Fsequence%3D1

Health Canada (2005). Health Canada endorsed important safety information on atypical antipsychotic drugs and dementia. Retrieved from http://healthycanadians.gc.ca/recall-alert-rappel-avis/hc-sc/2005/14307a-eng.php

Lee, P.E., Hsiung, G. R., Seitz, D., Gill, S. S., & Rochon, P. A. (2011) Cholinesterase inhibitors. BCMJ 53(8). Retrieved from http://www.bcmj.org/articles/cholinesterase-inhibitors

Park-Wyllie, L. Y., Mamdani, M. M., Li, P., Gill, S. S., Laupacis, A., & Juurlink, D. N. (2009). Cholinesterase inhibitors and hospitalization for bradycardia: A population-based study. PLoS Med (6), 9. Retrieved from http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1000157 

 

Smith, B., Chur-Hansen, A., Neale, A., & Symon, J. (2008). Quality of life and cholinesterase inhibitors: A qualitative study of patients with Alzheimer's Disease and their carers. Australasian Psychiatry, (16), 6. doi:10.1080/10398560802375990

 

Caregivers Education Series: Class 3

"The past which is not recoverable in any other way is embedded, as if in amber, in the music, and people can regain a sense of identity. . ." — Oliver Sacks

 What stands out the most for me from tonight's class is the research about music and memory.   

While we all know that familiar songs from our personal past have the power to trigger emotionally salient memories, findings have shown that this spontaneous activation is preserved even in persons with advanced dementia (Janata, 2009).

For a testament of the power of music to preserve identity, trigger memory, and enliven the self, watch this moving clip of Henry from the documentary Alive Inside.



References
Janata, P. (2009). The Neural Architecture of Music-Evoked Autobiographical Memories. Cerebral Cortex, 19 (11). doi:10.1093/cercor/bhp008

Caregivers Education Series: Class 2

I am finding it immensely rewarding to attend these classes. It's not that I am learning new things so much, but more that the classes are helping to consolidate what my experience is teaching me. This is having a positive impact on my attitude, motivation, and self-confidence.

Many ideas from this week's class stand out for me, including these:

1. Let go of the idea of perfection. As a caregiver with the best of intentions, it is easy to get down on yourself for those times when you succumb to frustration. "Remember that practice does not make perfect," said the educator. "Practice makes better,"she said. 
2. Welcome mistakes as opportunities for improvement. As Michael Jordan said: "I've failed over and over and over again in my life and that is why I succeed." 
3. Ask yourself, "Do I want to be right or do I want peace?" In caring for someone with dementia, countless opportunities for disagreement present themselves. During these times, you quickly become aware of your own ego and its defensive need to be right. If you want peace, then you must learn to override the ego.
4. Try "therapeutic fibbing" to maintain peace and promote well-being. An example: "You didn't tell me that I have a doctor's appointment." "I'm sorry, dad, I must have forgotten." What would the effect be if I had said, "Dad, I told you about the appointment at least 5 times"? While this may be factually right, it would be morally wrong to respond to my father in ways that lead to confusion, embarrassment, or loss of self-confidence. 
5. Focus on emotional truths rather than facts. When the person with dementia recounts a memory that you know is factually incorrect, don't point out mistakes. Instead, respond to the emotions that are being conveyed. For example: "It sounds like you had a lot of fun."
6. When negative emotions arise, look for the source. Even though the facts may be incorrect, don't assume that the emotions conveyed are groundless. This reminded me of the one time that my gentle father became angry with me since I became his caregiver. At first I assumed that this uncharacteristic behaviour was due to the dementia. But later, once my hurt feelings had settled, I realized that he was responding to my attitude which, outside of my conscious awareness, had become increasingly patronizing and condescending. 
7. Don't try to communicate when negative emotions are high. Wait until things settle down. 
8. Treat the person with dementia with respect. He or she is your peer or elder, not your child, and should be treated accordingly. 
9. Provide the person with dementia with opportunities to feel useful. For instance, my dad loves to help around the house. Even if dishes don't get washed as well as I would like, it's great that he is still wanting to do those kinds of chores.
10. Remember that, no matter how far the disease progresses, the core of self will always remain. So much of the person is lost with dementia, and the fear is that the disease may make your loved one unrecognizable at some point. It helps tremendously to know that this will not be the case.  
11. Dementia exposes the true self. The self in dementia is often a self freed from social constraints and responsibilities. What you are seeing is the soul of the person. An example from my own life is that my previously shy and reserved father now loves to sing, crack jokes, and ham it up in front of a camera! He especially loves to entertain his granddaughters as you can see in this picture of Opa doing his impression of a gangsta rapper.

Caregivers Education Series: Class 1

Last night, I went to my first Caregivers Education Series class at the Alzheimer Society, and came away with two useful insights.

The first is that I am very fortunate. Compared to many of the other stories that were being shared, my experience as a caregiver is a relatively happy one so far. My father is not exhibiting the more difficult personality changes that some of my fellow caregivers were reporting in their loved ones. For the most part, living with my father has been a joy.

The second is that I am on the right track in terms of responding to unusual behaviours. The educator stressed that maintaining trust should be the primary concern of caregivers. This includes no attempts to point out or correct mistakes in memory or reasoning. Such endeavours will not lead to improved functioning. Moreover, they create anxiety and mistrust in the loved one which will lead to more rapid decline. 

During the class, I was also faced with a pet peeve of mine: the use of the “they versus we” binary (“they” as persons with dementia and “we” as caregivers of persons with dementia). I am not sure how to avoid this, if it can be avoided, or even if it should be avoided. I only know that it doesn’t sit quite right with me (I cringe when I find myself referring to my father as “they”).

Based on social science findings, members of an in-group ("we") will tend to identify more with one another than with members of an out-group ("they"). On the positive side, such group identification promotes greater trust and cohesiveness among members which, in the case of caregivers, paves the way for much needed peer support. However, it may also promote greater psychological distance between caregivers and the persons they care for, as well as a tendency for caregivers to view persons with dementia less as diverse individuals and more as a homogenous group. The “we and they” binary is likely also a defence against anxiety. If persons with dementia are “they,” then we caregivers can avoid confronting our own fears about aging and cognitive and physical decline. Lots for me to think about there.