Caregiver Support Groups

In those first weeks and months after an Alzheimer’s disease diagnosis, caregivers have many questions, fears, and concerns about confronting upcoming changes in their lives.  I know this from personal experience because I am a caregiver for my wife, Clare, who was diagnosed with early/young onset Alzheimer’s disease at age 63. 

Immediately after Clare’s diagnosis, I had many unanswered questions.  Is it still safe for Clare to continue driving?  Is it still safe for me to leave Clare alone at home?   Are there any special medications that should Clare start taking?  Should I contact our attorney to see if we need to update any of our end-of-life documents … will, living will, health care proxy, and durable power of attorney?

I knew that these types of questions and many other issues are routinely discussed in caregiver support groups.  However, it is not always easy to find a local caregiver support group.  The Alzheimer’s Association provided more than thirty different caregiver groups on Long Island, but none were specifically for spouse caregivers.  Eventually, I was fortunate to find a support group solely for spouse caregivers at the Long Island Alzheimer’s Foundation (LIAF) in Port Washington, NY.  This group, led by a gifted social worker, met every Tuesday afternoon and would soon grow to 15 participants ranging in age from the late 50s to the mid-80s.

Regardless of age or gender, we all “got it” in my spouse caregiver group.  We were dealing with many, if not all, of the same behaviors and although each of our individual situations were somewhat different, it was helpful to learn how others were handling similar situations.  Those like me, whose spouses were then in the earliest stages of Alzheimer’s, received much wisdom from those who had already dealt with such issues.  We also learned about strategies that others used with spouses at more advanced stages, knowing that one day we might also have to deal with similar situations.  All spouse caregivers are swimming in the same lake; we may be paddling in different boats at different speeds, but we are all trying to stay afloat in Lake Alzheimer’s.

I absorbed many practical bits of advice each week as we shared and discussed everything on our minds … new and worsening behaviors, medications, and any other topic of concern.  We could laugh, cry, and say whatever was on our minds in a totally non-judgmental environment, receiving emotional support and helpful suggestions for dealing with whatever issues confronted us. 

After three years I had to stop attending my support group so I could take Clare to a day care program in a different location on that day, but I haven’t completely severed my group ties.  Each week I now join up to a dozen current and former support group members for lunch.  All of our spouses are now either in moderate or severe stages, or have already passed on.  But just as we once did in our formal support group, we continue to support each other.  As one member of this informal group recently said to me, “This new group just seems to scratch every itch I have!”

As the numbers of people diagnosed with Alzheimer’s disease increases dramatically, we will need to provide more weekly caregiver support groups.   Doctors must become more familiar with support groups available to their patients and caregivers. Clare and I saw an internist, a neurologist, and two geriatric psychiatrists, yet none of them mentioned anything about joining support groups.  In my LIAF spouse support group of 15, only one had been referred there by a doctor.  That is a shame.

Doctors working with someone who is caring for a spouse, parent, grandparent, friend or other family member with Alzheimer’s disease should urge them to join a support group.  Let them know that they can learn many practical suggestions from those who have “been there,” and how important it is to have a place where they can talk openly about their feelings, fears, and concerns while receiving emotional support from others “who get it.” 

Caregivers should not have to “go it alone” when a loved one is declining from an incurable disease.  But unless doctors inform them of the existence and value of support groups, many who would find emotional and practical help there will lose out on this wonderful source of information and comfort.

Published in Journal of the American Geriatrics Society, August, 2013, Vol. 61, No. 8, p. 1413.  Access at:

http://onlinelibrary.wiley.com/doi.10.1111/jgs.12369/full

Two recommendations for Alzheimer's medication protocols

Since becoming a caregiver for my wife, diagnosed in 2009 with early onset Alzheimer’s Disease (AD), I have participated in AD spouse caregiver support groups.  Several participants have reported that their spouses had been taking AD medication without incident for a year or more, only to then show symptoms that may have been caused by the medication.  Spouses reported that these side effects disappeared when the medication was discontinued.  A review of data that led to FDA approval for current AD medications reveal that of the 11 clinical trials conducted prior to marketing, all but two lasted for 26 weeks or less.  Not one lasted for even one full year.  Each trial noted side effects by a small percentage of users, but none were considered severe enough to prevent the medication from being approved. ¹  There have also never been any follow-up studies to learn if patients who continued taking the medication exhibited worsening side effects, or developed new side effects, after those trials ended. 

 

My wife had been taking two AD medications for several years with no negative side effects.  However, despite no observable changes in diet, she suddenly began exhibiting gastrointestinal symptoms noted as side effects in the AD medication clinical trials.   I decided to slowly wean my wife off both medications to see if they might be the cause of her gastrointestinal issues, and the effects were immediate.  Within a few days, all of her gastrointestinal symptoms stopped.  No more gassiness.  No more nausea.  No more vomiting.  Cause and effect?  All I can say for sure is that her gastrointestinal issues ceased when she stopped taking AD medication that, based upon research, was no longer helping her anyway.  A 2012 study by Consumer Reports found no evidence of any of the four approved AD medications being effective beyond three months for most people. ²  Research by the Alzheimer’s Association found that these four medications may be effective for up to a year for about half of the people using them. ³  And the NIH states in its most recent report on AD that the four currently approved AD meds “may help some people,” but even then, “only for months to a couple of years.” ⁴  

Despite reports doubting positive effects of AD medication over the long term, despite the fact that no clinical trial even lasted for one full year, and despite the fact that there have been no follow-up studies to gauge side effects over time, many doctors continue prescribing these medications for their AD patients year after year after year.  Perhaps this would not be so if medication were clearly labeled and marketed as having limited usefulness and should be discontinued after a limited period of time.  Therefore, I have two recommendations for future AD medication protocols:

1.  Protocols should mandate that clinical trials last for at least one full year. Should medication only prove effective for a lesser period of time, FDA approval could still be sought on the basis of demonstrated short term effectiveness.  However, all inserts and labels packaged with the medication, as well as all media advertising, should clearly state that this medication was only shown to have positive effects for some people with AD for the limited number of months such effectiveness was actually demonstrated in the clinical trial. 

2. Protocols should mandate that 18 months after the one year clinical trial ends, patients must receive a follow-up questionnaire about side effects.  If significant numbers of patients report new or worsening side effects, this data must be reported to the FDA to determine if such information should be reflected in future medication packaging and media advertising.

Too many people with AD are taking expensive medication for long periods of time when there is absolutely no clinical data demonstrating that these medications are still effective.  It is also possible that, over time, these medications may be causing unpleasant side effects.  Medication labels and media advertising should provide patients and their caregivers with truthful information to help them make the best decisions possible in consultation with their doctors.

1. “Aricept ... Highlights of Prescribing Information.” Accessed online at www.aricept.com/assets/pdf/AriceptComboFullPIFebruary2012.pdf, pp. 7-11.

 
“Razadyne” ... “Full U.S. Prescribing Information.”  Accessed online at www.razadyneer.com/sites/default/files/shared/pi/razadyne_er.pdf pp.2-4.

“Exelon” ... “Highlights of Prescribing Information.”  Accessed online at www.pharma.us.novartis.com/product/pi/pdf/exelon.pdf, pp. 13-16. 

“Namenda Full Prescribing Information.”  Accessed online at www.frx.com/pi/namenda_pi.pdf,  pp.3-8.  All four medication sites accessed on March 5, 2013.

2.  “Evaluating Prescription Drugs Used to Treat: Alzheimer’s Disease.”  Consumer Reports, May, 2012, p. 3.

3.  “Five FDA Approved Alzheimer’s Drugs.”  Research Center, Science & Progress Treatment Horizon section.  Accessed online at  www.alz.org/research/science/alzheimers_disease_treatments.asp. Accessed on March5, 2013.

4.  “A Primer on Alzheimer’s Disease and the Brain.”  NIH Alzheimer’s Disease Progress Report, 2011-2012, p. 9.  Accessed online at www.nia.nih.gov/alzheimers/publication/2010-alzheimers-disease-progress-report-deeper-understanding/brief-primer.  Accessed on March 5, 2013.

 

Published in Clinical Trials: Journal of the Society for Clinical Trials, August, 2013, Vol. 10, No. 4, pp. 637-638.  Access at: http://ctj.sagepub.com/content/8/5/679.full

 

 

Current Alzheimer's Medications: Effective Treatments or Expensive Bottles of Hope?

I am not a medical researcher, nor am I a medical doctor.  I am, however, a spouse caregiver for my wife, who is now in moderate stages of Alzheimer’s Disease (AD).  While admittedly lacking an M.D. degree, my reading of the AD literature, my listening to other spouse caregivers, my observations of more than a dozen people with Alzheimer's ,and my research on the effectiveness of current AD medications all tell me that doctors too often recommend that Alzheimer’s patients continue taking ineffective “treatment medications.”  Well after the time period when even the pharmaceutical manufacturers claim that their products are effective, many doctors continue to prescribe these same ineffective AD medications for their patients. 

History

My wife took two of the most commonly prescribed AD medications, donepezil (Aricept) and memantine (Namenda).  Along with galantamine (Razadyne) and rivastigmine (Exelon), these are four of the five prescription medications that have been approved by the U.S. Food and Drug Administration to treat people diagnosed with AD.  A fifth medication, tacrine (Cognex), was also approved by the FDA, but it is now rarely prescribed due to safety concerns. ¹  All but memantine are termed “cholinesterase inhibitors”  that “prevent the breakdown of acetylcholine, a brain chemical believed to be important for memory and thinking.” ¹  Memantine works differently by regulating glutamate, a brain chemical that, “when produced in excessive amounts, may lead to brain cell death.” ¹ Each of these medications carries the possibility for side effects such as nausea, vomiting, or diarrhea, to name a few.¹

Research
Although there is absolutely no research to indicate that any of these medications will stop or cure Alzheimer’s, there is some research to indicate that, for some patients, these medications may slow the rate of decline for a brief  period of time.  However, this research is based on only a few clinical trials of very short duration, and this research is badly flawed in two major respects.

The first research flaw is that the “significant positive outcomes” obtained in clinical trials cited by drug manufacturers as “evidence” of the effectiveness of their medications are usually based upon results obtained on the MMSE or ADAS-Cog tests.  The MMSE, a commonly used AD screening test, is an instrument that was never designed to diagnose Alzheimer’s and cognitive declines in some people with early to moderate stage AD score may not be accurately measured. ²  The ADAS-Cog, according to two studies reported in 2012, is a test instrument “not subtle enough to properly track changes in the early stages of Alzheimer’s. ³   A major study conducted by Consumer Reports in 2012 concluded that the differences in scores on the ADAS-Cog for patients taking any of the FDA approved medications, when compared to placebo groups, are “smaller than 4 points, which is so small, it is not considered meaningful.”  Consumer Reports also concluded that the “small improvements” showing slower rates of decline in activities of daily living as measured by various instruments “would not be considered clinically meaningful by most doctors.” ⁴

The second research flaw is that clinical trials cited as evidence of the effectiveness of these medications are few, and of very brief duration with absolutely no data supporting any positive outcomes beyond that clinical trial duration.  I would think that if any pharmaceutical manufacturer had any evidence of its medication having any positive effects beyond the duration of their brief clinical trials, that evidence would be made public ... in a heartbeat!

I went to the website of each medication to learn about the clinical trials in support of their effectiveness and found similar results for each medication.  All had clinical trials of short duration, all of the positive effects were leveling off or slowing down by the end of the trials, and all testing was with instruments that are not necessarily the best measurements of cognitive performance.

The website of Ortho-McNeil Neurologics, a division of Ortho-McNeil-Janssen Pharmaceuticals, Inc., cites only 4 randomized, double blind, placebo controlled clinical investigations for galantamine in patients with probable Alzheimer’s. ⁵  Using the ADAS-Cog to assess cognitive performance, the 4 trials lasted 21, 26, 26, and 13 weeks, respectively.  At the end of these short duration trials, results had already either leveled off or begun to decline, even for the groups demonstrating initial improvement.

There is not even one study demonstrating that galantamine is effective to any degree whatsoever beyond 26 weeks. ⁵

On the Novartis website, one finds data from five clinical trials with AD patients that lasted 12, 24 and 48 weeks using rivastigmine in oral or “patch” form, and all relied upon the ADAS-Cog and MMSE to measure outcomes.  All trial results show that even for the groups demonstrating improvement on the medication, declines in scores appear after 24 weeks.  There is not even one study demonstrating that rivastigmine is effective to any degree whatsoever beyond 48 weeks.  ⁶

On the Eisai/Pfizer website, one finds data from 4 clinical trials with AD patients taking donepezil.  Two trials were for patients with mild to moderate AD, one for 15 weeks and one for 30 weeks.  Two trials were for patients with moderate to severe AD, for 24 weeks in Japan and six months in Sweden.  Once again, even for groups demonstrating improvement on this medication, declines in scores begin at or before the 24 week stage as measured by the ADAS-Cog and other instruments. There is not even one study demonstrating that donepezil (Aricept) is effective to any degree whatsoever beyond 30 weeks. ⁷

Discussion

What do all clinical trials using cholinesterase inhibitors tell us?  Very simply, we learn that of the 11 clinical trials for these three medications, 9 of them lasted for 26 weeks or less.  We also learn that in every study, even patients showing initial evidence of improvement started to decline after 24 weeks, if not sooner. 

And, finally, we learn that there is absolutely no evidence indicating that patients continuing to take these medications beyond a very limited period of time, one year or less, will continue to demonstrate any positive effects these medications may have had.   If there were such evidence in any clinical trial of any cholinesterase inhibitor, this clinical trial data would be heralded by both the pharmaceutical company and by the FDA as the greatest breakthrough ever in Alzheimer's treatment.

And what do we learn from clinical trials about the evidence of effectiveness of memantine?  On the Forest Laboratories, Inc. website, two studies are reported, one lasting 24 weeks and one for 28 weeks.  Outcomes were measured using two instruments, one to measure activities of daily living and one to measure cognitive function.  In the 28 week study, after four weeks, the group receiving a placebo started to decline; the group receiving memantine showed a slight improvement for 12 weeks, and then started to decline.  In the 24 week study, the treatment groups were different.  One group received memantine and donepezil, while the other group received memantine and a placebo.  After 4 weeks, the group receiving memantine and the placebo started to decline, whereas the group receiving memantine and donepezil didn’t show declines until the 8 week point.  There is not even one study demonstrating that memantine (Namenda), given with or without donepezil, is effective to any degree whatsoever beyond 28 weeks. ⁸

Despite there being no research to support the effectiveness of these AD medications beyond a few months, at best, many doctors continue prescribing these medications for years and years.  Not only can these AD meds no longer be helping their patients, but they may actually be causing some harm.  Maintaining patients on these medications long term may provide false hope to patients and their caregivers.  I refer to these medications as “bottles of hope” because as I watch my wife decline, I know that the medications cannot possibly be helping anymore, if they ever did at all. 

For many patients and caregivers, the high costs of AD medications present an economic hardship.  Money spent on AD medications is money that might otherwise be spent on day care programs, companions, home health aides, or other services that would actually improve the quality of their lives.   

Another problem with continuing to take these medications for many years may be long term negative side effects.  Negative side effects were reported to some degree in all of the short duration clinical trials, but there is no data on long term negative side effects.  Side effects not initially apparent may surface after continuing to take these medications year after year.

Doctors frequently place patients on AD medications shortly after diagnosis and that's a good option to try to slow down the initial rate of decline.  Adding memantine when the patient advances to moderate stages is also a worthwhile option to sty to slow the rate od decline.  despite an absence of any supportive research, perhaps residual positive effects may even last a year or two for some patients, not just a few months.  But is there any point in continuing these medications beyond two years?  Doctors must be realistic and honest with both patient and caregiver.  Absent research to the contrary, doctors should recommend that their patients discontinue taking these medications after a year or two at the most.

The “Best Buy Drugs Report “ issued by Consumers Union in May, 2012 was not given much publicity until excerpts appeared in the Washington Post on January 7, 2013. ⁹  Consumers Union, which reviewed more than 1100 research studies and articles on AD meds, begins the recommendations section of their comprehensive 2012 report with this statement: “The medications used to treat mental decline in people with Alzheimer’s disease are not particularly effective.  When compared to a placebo, most people who take one will not experience a meaningful benefit.  And it is the rare person who has a significant delay in the worsening of their symptoms over time.” ¹⁰  The recommendations page concludes with these words, “if the person taking the drugs does not show signs of improvement within three months, it is unlikely they ever will, so the drug should then be stopped.” ¹⁰

The Research Center of the Alzheimer’s Association provides much information about treatments for Alzheimer’s.  Their conclusion with respect to current medication is this: “On average, the five approved Alzheimer’s drugs are effective for about six - 12 months for about half of the individuals who take them.” ¹¹

The National Institutes of Health (NIH) also recently affirmed that these AD medications are largely ineffective beyond a limited period of time.  The executive summary of its comprehensive “Alzheimer’s Disease Progress Report,” 2011-2012, concludes that the current FDA approved AD meds “may help some people” ... but even for those it does help, it is ”only for months to a couple of years.” ¹²   

Conclusion

Doctors should definitely prescribe AD medications for several months and even up to a year or two if they or their patients or caregivers see positive effects.  But doctors should not recommend that patients continue taking these medications once they are obviously ineffective.  This practice must stop. 

Doctors must accept that AD medications eventually become expensive “bottles of hope” that will not slow down the inevitable degenerative progression of Alzheimer’s.  Doctors must also accept that, by continuing to prescribe these medications year after year long after they can possibly still be helpful, they may unintentionally be doing their patients and caregivers more harm than good.
 

1.  “Alzheimer’s Disease Medications Fact Sheet.”  NIH, U.S. Department of Health and Human Services.  Accessed online at www.nia.nih.gov/alzheimers/publication/alzheimers-disease-medications-fact-sheet , p. 1. Accessed January 15, 2013, pp. 1-5.

2.  A. Vann.  “Listen More Carefully to Alzheimer’s Caregivers.”  Journal of the American Geriatrics Society, October, 2012, No. 60, p. 2000.

3.  “Cognitive Test in Alzheimer’s Drug Trial May Be Flawed.”  Medical News Today.  Accessed online at www.sciencedaily.com/releases/2012/12/121216200803.htm.

Accessed on December 26, 2012.

4.  “Evaluating Prescription Drugs Used to Treat: Alzheimer’s Disease.”  Consumer Reports, May, 2012, p. 8.  Accessed online at www.consumerreports.org/health/best-buy-drugs/alzheimers.htm.  Accessed on January 15, 2013.   

5.  Razadyne ... “Full U.S. Prescribing Information.”  Accessed online at www.razadyneer.com/sites/default/files/shared/pi/razadyne_er.pdf, pp.2-4.  Accessed on January 15, 2013

6. “Exelon ... “Highlights of Prescribing Information.”  Accessed online at www.pharma.us.novartis.com/product/pi/pdf/exelon.pdf, pp. 13-16.  Accessed on January 15, 2013.

7. “Aricept ... Highlights of Prescribing Information.” Accessed online at www.aricept.com/assets/pdf/AriceptComboFullPIFebruary2012.pdf, pp. 7-11.  Accessed on February 5, 2013.

8. “Namenda Full Prescribing Information.”  Accessed online at www.frx.com/pi/namenda_pi.pdf,  pp.3-8.  Accessed on January 15, 2013.

9.  “Alzheimer’s drugs are expensive and don’t work very well for most people.”  Accessed online at www.washingtonpost.com/national/health-science/alzheimers-drugs-are-expensive-and-they-dont-work-very-well-for-most-people.  Accessed on January 7, 2013.

10.  “Evaluating Prescription Drugs Used to Treat: Alzheimer’s Disease.”  Consumer Reports, May, 2012, p. 3.

11.  “Five FDA Approved Alzheimer’s Drugs.”  Research Center, Science & Progress Treatment Horizon section.  Accessed online at www.alz.org/research/science/alzheimers_disease_treatments.asp. Accessed on January 15, 2013.

12.  “A Primer on Alzheimer’s Disease and the Brain.”  NIH Alzheimer’s Disease Progress Report, 2011-2012, p. 9.  Accessed online at www.nia.nih.gov/alzheimers/publication/2011-2012-alzheimers-disease-progress-report/primer-alzheimers-disease-and.   Accessed on January 15, 2013.

Published in JAMDA, Journal of the American Medical Association, July, 2013, Vol. 14, No. 7 pp. 525-527.  Access at: www.jamda.com/article/S1525-8610(13)00167-9/fulltext
 

Alzheimer's Behaviors or Coincidences?

My wife, Clare, has Alzheimer’s Disease (AD). I have lived with Clare’s Alzheimer’s for seven years … three years observing symptoms prior to her diagnosis and four years since her diagnosis in 2009, a month after she turned 63.  Except for a few hours of respite time each week, I am with Clare, 24/7.  Caregivers for AD spouses living at home often notice AD behaviors that doctors may not observe during routine office visits, and sometimes we observe behaviors not reported in any AD books or research.  Perhaps researchers should give closer attention to our collective observations in an attempt to diagnose or treat AD more effectively.

1.  Brief periods of “awakening”

Many in my spouse support groups note that our spouses often demonstrate brief “awakenings” when they seem to exhibit no “brain fog” for a period of time.  Even on their foggiest days, our spouses sometimes have brief periods of perfect lucidity.  This aspect of Alzheimer’s is noted in the professional literature.  What is not found in the literature, however, is that many caregivers notice that such awakenings occur most frequently during doctor visits.  When that happens, our reports of worrisome behaviors are often dismissed or ignored because doctors themselves see no evidence of such behaviors.  We also often see awakenings when our spouses are with close relatives and friends. 

Why do our spouses sometimes fail to demonstrate many of their routine AD behaviors in the presence of their doctors, close relatives, and friends?  Is it due to a very strong denial instinct that enables them to mask their symptoms and override AD behaviors for a brief period of time?  Is it due to a strong subconscious desire to appear well in front of their doctors, close relatives, and friends?  Is it possible that some people with AD can have denial instincts or subconscious thoughts so strong that they can stimulate the release of certain chemicals in their brains to cause a brief awakening?  If so, could a medication be devised to stimulate similar brain activity that could, perhaps, diminish some AD symptoms even if only for brief periods of time?  All I know for sure is that every member of my spouse support group observes these brief awakenings most frequently in the presence of doctors, and also often when in the presence of close friends and family.  Why?

 

2. Forgetting to brush teeth
My support group is for spouses of people with early to moderate stage AD.  We have commented several times about how the first personal hygiene habit that our spouses seem to forget is the daily brushing of their teeth.  Some of our spouses are incontinent.  Some are not.  Some go to bathrooms by themselves.  Some cannot.  Some bathe or shower, shave or groom, all without difficulty.  Some cannot.  Some dress themselves.  Some cannot.  But all seem to need daily reminders to brush their teeth.  After such reminders, some will brush their teeth fine by themselves while others still require some assistance.  Many who cannot remember to brush their teeth without prompting can handle much more complicated personal hygiene tasks without any prompting whatsoever.  For example, Clare still remembers how to insert/remove her daily contact lenses properly by herself and see to their daily maintenance. 

Is brushing one’s teeth a habit so easily forgotten because of the repetitive physical motion of the act of brushing?  Is it because brushing one’s teeth is one of the earliest learned personal hygiene behaviors, so it is the first to be forgotten?  Is it because multiple steps are involved … locate the brush, locate the toothpaste, open the cap and squeeze just the right amount of toothpaste onto the brush, etc.?  All I know for sure is that every member of my spouse support group said that brushing their teeth was the first personal hygiene behavior our spouses had forgotten.  Why? 

3. Sleeping diagonally in bed

With few exceptions, people in my support group still sleep in the same bed with their spouses, and those who do have all reported that our spouses lie diagonally across our beds when sleeping, crossing into our own personal “bed space.”  Our spouses all start off sleeping on their sides of the bed … but, slowly but surely, during the night they end up sleeping diagonally across the bed. 

Is this due to some sort of psychological need for our spouses to remain physically close to us even while asleep, much as many people with AD “shadow” their spouses when awake?  We all report how our spouses often follow us into another room just to remain close to us.  Is sleeping diagonally their way of using us as their security blankets in bed at night?  Is this a neurological reaction to something?  Is this due to loss of orientation of their body in space? All I know for sure is that many members of my spouse support group have said that their spouses sleep diagonally across their beds.  Why?

 

4. Dreaming and sleep talking
Although Clare is already in moderate stages of AD, she remains highly verbal despite increasing episodes of aphasia.  Perhaps that is due her strong language background as a former high school teacher of English, English as a Second Language, and Spanish.  Perhaps this is simply the course her disease is taking.  However, as Clare’s memory and executive functioning skills have declined over time, she has begun a new behavior that is getting “stronger” … dreaming and talking aloud in her sleep. 

Prior to her AD diagnosis, Clare often commented to me about how she never remembered having had any dreams.  Although Clare still has no memory of any dreams, I cannot sleep through even one night anymore without being awakened several times by her sleep talking!  Prior to her AD diagnosis, whereas she may or may not have been having many dreams each night, she had never talked aloud in her sleep!  Her sleep talking began about two years after diagnosis.  At first, she only expressed a few softly mumbled words and then her mumbling evolved into a few quiet sentences.  After several months, however, this sleep talking has progressed to clearly spoken conversations, albeit only the one sided dialogue that I hear.  This dialogue is now routinely accompanied by hand gestures, laughing, crying, singing, whispering, or shouting … all dependent, I suppose, on the nature of Clare’s particular dreams at the time.  She even occasionally appears to be conducting a choir or orchestra in her sleep! 

What I find most fascinating is that I have yet to detect any instances of aphasia when Clare is sleep talking.  Sentence after sentence is spoken clearly, with no hesitation in her speaking aloud to “find” words that she otherwise “loses” when she is awake.  This observation of fluent sleep talking, and the way it has progressed over time, is a pattern also observed by several others in my support group.  Not by all members … but by several … and for those who have observed it, the pattern is identical.  Each of us first observed the quiet mumbling of a few words expand into quietly spoken sentences and then into clearly spoken sentences and dialogue … and always completely fluent with no episodes of aphasia.  For some people with AD, is sleep talking itself an indicator of something else?  For those with AD who do sleep talk, is the lack of aphasia episodes during their sleep talking indicative of something that can eventually be helpful with additional research?  All I know for sure is that several members of my group whose spouses are also aphasic report no instances of aphasia during their spouses’ sleep talking.  Why?

So what does this all mean?

Perhaps these four observations … when awakenings seem to occur most often, forgetting to brush one’s teeth, sleeping diagonally in bed, and sleep talking … should be dismissed as “interesting“ but relatively meaningless observations  of a group of spouse caregivers.  Perhaps none of these four behaviors are related to Alzheimer’s.  But … perhaps one or more of these four behaviors are related to Alzheimer’s and have simply not been studied because researchers have not been made aware of them.

A recent study conducted with mice by researchers at Washington University School of Medicine in St. Louis reported that sleep problems may be among the earliest indicators of Alzheimer’s.  Senior author David M. Holtzman, head of Washington University’s Department of Neurology, stated: “If these sleep problems exist, we don’t yet know exactly what form they take – reduced sleep overall or trouble staying asleep or something else entirely.  But we’re working to find out.”  (Roh JH, Huang Y, Bero AW et al.  Disruption of the sleep-wake cycle and diurnal fluctuation of amyloid-b in mice with Alzheimer’s disease pathology.  Science Translational Medicine 2012; 4:150fs34.  Summary of article accessed online, September 5, 2012.)

Perhaps “something else entirely” could be sleeping diagonally in bed.  Or, perhaps, “something else entirely” could be sleep talking.  All I know is that when a group of caregivers whose spouses range in age from the early 60s to the late 80s all report similar or identical observations that are not mentioned in the professional literature, it stretches belief to simply dismiss all such observations as coincidences.  When we can learn nothing about these observations from our doctors or from the professional literature, and we hear nothing about similar observations from friends who are not dealing with a spouse with Alzheimer’s, we are left with one simple question:  Why?

Published in Journal of Alzheimer's Disease and Parkinsonism, May, 2013, Vol. 3, No. 1, pp. 111-112.  Access at: www.omicsonline.org/2161-0460/2161-0460-3-111.php?aid=14346

 

 

 

 

Empowering people with Alzheimer's disease and their caregivers -- there is still much work to be done

My wife was diagnosed with early onset Alzheimer’s Disease (AD) at the age of 63. My wife was repeatedly asking me the same questions over and over, getting lost while driving, experiencing aphasia and agnosia, unable to follow cooking recipes, etc. When the AD diagnosis was issued, it was a tremendous shock to my wife, who was in complete denial. For me, however, the diagnosis was a sad confirmation of what I had long been expecting. 

When we left the doctor’s office after that AD diagnosis, we were given no written materials indicating what to expect in the near or long term. There was no information about websites we could consult or books we could read to learn more about AD. There was no mention or discussion of support groups. We had to research all of that on our own. I have since learned from members of my real and online support groups that our experience is all too common … doctors do not readily provide helpful information to AD patients or caregivers, nor do they make patients and caregivers aware of support groups.

Such a lack of communication from doctors is inexcusable. Doctors should provide written handouts for patients and caregivers upon diagnosis … or at a follow-up visit shortly thereafter … so patients and caregivers can be more aware of this disease and have informed conversations with their doctors. I can understand if doctor wants to wait a few weeks after issuing an AD diagnosis before providing such a handout. Caregivers and patients may know very little about AD when they hear this diagnosis, and they may react with surprise, denial, fear, helplessness, sadness, anger, and a variety of other emotions. Even if aware of declining memory, cognitive, or executive functioning skills, the last thing patients and caregivers want to hear is a diagnosis of Alzheimer’s. A period of several weeks before further discussion about the disease, to allow patients and caregivers time to fully process that diagnosis, may be warranted. But patients and caregivers need to be fully informed about what lies ahead for them, if not immediately than very soon after the diagnosis. Providing such AD information and resources can empower patients and caregivers.  

The handout should review symptoms, stages of the disease, medication and treatments, and refer patients and caregivers to helpful support groups, internet sites, and books for additional information. It is in the first few weeks and months after initial diagnosis when patients and caregivers have the most questions, fears and anxieties that can be somewhat resolved with access to more information. This is also the time period when AD patients and caregivers have the most need to locate support groups to help them deal with what is currently happening, as well as to prepare themselves for the future. If there are no local support groups, then doctors should speak with leaders of their local or state branches of the Alzheimer’s Association and/or the Alzheimer’s Foundation to ask them to start such groups. Doctors need to recognize that support groups can be a major component of the treatment protocol after an AD diagnosis. Meeting regularly in support groups with others in similar circumstances can be very empowering and comforting to both patient and caregiver. Even though each AD patient and caregiver may be in somewhat different boats, all are paddling in the same lake and can learn so much from others in similar situations.

The bottom line is that doctors must do a better job of communicating with their AD patients and caregivers. The goal should be to avoid an often heard remark in support groups: “l wish someone had told me about that when my spouse was still in the earliest stages so I could have prepared myself better.” Should AD patients and caregivers not wish to avail themselves of these information resources, choosing to rely solely upon their doctors for information, fine … that is their choice. But information is empowering … and for many patients and caregivers, having ready access to more information between doctor visits is extremely helpful and reassuring.

 

Originally titled, "Empowering Alzheimer's Patients and Caregivers." Published in Dementia, April, 2013, Vol. 12, No. 2, pp. 155-156. Access at: http://dem.sagepub.com/content/12/2/155.full.pdf+html

 

Traveling a difficult road with Alzheimer's

My wife, Clare, was diagnosed with coronary artery disease in 1993 at the age of 47 and since that time has been on a daily cocktail of heavy duty heart meds that, most of the time, have enabled her to maintain a decent quality of life.  Clare’s father died at 57, her mother at 72, and her brother at 65 … all due to heart disease … so we did not take Clare’s diagnosis lightly.  When Clare had a particularly “bad heart year” in 2000, we decided not to press our luck and retired earlier than planned so we could travel before Clare’s health deteriorated further.  

And travel we did!  We flew across the Arctic Circle to walk on glaciers.  We strolled across the Great Wall of China and through Red Square in Moscow.  We explored Machu Picchu in Peru and meandered among the giant tortoises in the Galapagos.  The list went on and on.  But on one of our marvelous trips, I noticed something terribly wrong with Clare … and it wasn’t her heart.

Discussions with fellow travelers are usually about family and trips previously taken or planned for the future.  During discussions on one of these trips, I noticed Clare forgetting personal information … and I don’t mean common memory lapses often referred to as “senior moments.”  For example, she’d talk about our two grandchildren … forgetting that we had four grandchildren.  Or she’d talk about how much we enjoyed a previous trip to Paris … but we had never been to Paris.  Or she’d say how much she wanted to take a trip to Russia … a trip we had already taken.  And it wasn’t just memory.  Clare always had an excellent sense of direction, but she was now getting us lost in cities when we were on our own.  She was misplacing objects, losing objects, and just seemed confused at times.

After that trip, I went online to check out several responsible websites and was starting to became convinced that Clare was showing some possible early signs of Alzheimer’s Disease (AD), despite her young age.  I expressed my concerns to Clare and we made appointments to see both our regular doctor and a neurologist.  I started keeping logs of Clare’s worrisome behavioral symptoms to show to doctors, but symptoms I was observing at home were never present during doctor visits!  Brain scans and blood work appeared normal, and Clare was acing brief cognitive screening tests.  For the next 3 years, Clare he was treated for stress, anxiety, or depression … not Alzheimer’s.  It was now 2006 and Clare had not yet turned 60. 

It was only after Clare’s test scores dropped significantly that she was given more comprehensive testing, which eventually led to the diagnosis of “early” or “young” onset AD, a month after Clare turned 63.  My first step was to seek out a support group for Clare to join, so I contacted The Alzheimer’s Association.  The Suffolk branch sponsored more than 30 caregiver groups … but not one was for people with AD.  I then contacted the Alzheimer’s Foundation of America, which led me to LIAF, the Long Island Alzheimer’s Foundation in Port Washington.  They had a support group that met weekly for those diagnosed with early to moderate stage AD, and after a brief evaluation Clare was accepted into their program.  They also had a support group for spouse caregivers meeting simultaneously in a nearby room.  At Clare’s first meeting, I brought a copy of Newsday with me, fully expecting to read it in the LIAF lobby while Clare was in her meeting.  However, Clare insisted that I give the spouse caregiver group “a try.”  Feeling my shoulders were broad enough to handle anything that might come my way, I said no.  But Clare was insistent. “Please try it just this one time, just for me.”  How could I say no?

It’s now more than three years later and I don’t know how I could have survived without my weekly support group.  My LIAF support group helped teach me ways to deal with my daily stress, along with providing many practical tips and strategies that I could never have learned anywhere else.  We support each other emotionally in a non-judgmental atmosphere.  My participation in an online support group solely for spouse caregivers at www.thealzheimerspouse.com also helps alleviate stress and provide information.  Our spouses may not all share identical symptoms, but we all “get it” and understand what life is like for each other as an AD spouse.

What is my life like as an AD spouse caregiver?  It’s a life of daily stress.  It’s also a constant learning curve, trying to remain patient when Clare asks me the same question over and over, or where to find this or that, or for help finding something she has misplaced.  It’s trying to remain patient when she can’t follow a simple one-step direction, or when she starts telling me something but stops in mid-sentence, having forgotten what she wanted to say.  It’s trying to enjoy watching Clare’s favorite TV shows with her over and over again each afternoon and evening.  When the daily 24/7 stress became too overwhelming a few months ago, I placed Clare in day care programs to give myself 14 hours of respite time each week.

AD is much more than memory loss and inability to see things right in front of you.  Many with AD undergo severe personality changes resulting in angry ranting and socially inappropriate behavior.  Fortunately, Clare has retained her sweet personality and disposition so, for example, we can still eat out in restaurants.  Of course, before we reach our car in the parking lot she will have forgotten what she ate.  But, “in the moment” she will have enjoyed herself and have had a good time.

I could share other AD symptoms, but it’s not pretty.  There are concerns about falling and wandering.  There are personal hygiene issues.  In later stages, Alzheimer’s leads to incontinence along with loss of all other cognitive and motor functions.  The “average” person with AD dies within 8 years of diagnosis, although the range can be as short as one or as long as 20 years. I have already been to 8 funerals in 3 years to support members of my support group.

November is Alzheimer’s Awareness Month.  Alzheimer’s disease is now the 6^th leading cause of death in this country and the only one among the top ten killers for which there is no effective means of prevention, treatment, or cure.  It is also the fastest growing cause of death among the top ten killers, with an estimated 5.4 million people already suffering from Alzheimer’s, about 250,000 of them under the age of 65.  It is estimated that 1 in 8 people over 65 will eventually be diagnosed with AD; for those above the age of 85, the rate increases to 1 of every 2.  So, as baby boomers turn 65 at the rate of more than 10,000 each day, and as our population lives longer, the estimate is that more than 15 million people will be suffering from Alzheimer’s in 3 or 4 more decades. 

Despite concern about rising national debt and the need to reduce government spending, we need to increase funding for Alzheimer’s research into effective ways to prevent, treat and cure this disease … and to increase support to  organizations providing programs that are helping people with Alzheimer’s and their caregivers.  For 2012, costs to Medicare and Medicaid for caring for those with Alzheimer’s are expected to total $140 billion.  Costs are projected to increase to more than $1.1 trillion by 2050 if nothing changes.

 

Published in a much reduced version in Newsday's op ed "Expressway" column under two titles ... in print as "Our Hard Road with Alzheimer's," and online as "Traveling a difficult road with Alzheimer's," November 24, 2012, p. A21.  Access at:
http.//newsday.com/oped/expressway-traveling-a-difficult-road-with-Alzheimer-s-1.4255036

 

 

 

 

Listen More Carefully to Alzheimer's Caregivers

In 2009, my wife was diagnosed with Alzheimer’s Disease (AD), at the age of 63, but only after two years of misdiagnosis. Despite my observations of obvious AD symptoms clearly noted in logs I presented at each doctor’s visit, my logs were routinely ignored. Perhaps this was because my wife did not exhibiting similar symptoms in the doctor’s office … or perhaps because of repeatedly high scores on the MMSE.

I eventually discovered that it is not unusual for AD caregivers to report that their loved ones were initially misdiagnosed and treated for stress, anxiety, or depression. Maybe that is because these emotional issues can often manifest symptoms of confusion and memory loss similar to those associated with Alzheimer’s, and it is difficult for doctors to differentiate. Maybe it’s because doctors know that they cannot effectively treat AD, but they can often successfully treat symptoms caused by emotional issues. Regardless of the reason, many caregivers note that their doctors simply did not take time to listen carefully to symptoms they were reporting about their spouses. Caregivers also often note how their spouses continue to score highly on the MMSE. 

Fast forwarding to the present, the MMSE continues to show itself as an unreliable diagnostic test for my wife. As a participant in a longitudinal research study at an Alzheimer’s Disease Research Center, she undergoes annual neuropsychological testing each year. With few exceptions, all of her scores on various tests and subtests to assess executive function of the brain, memory, language, attention, and visual spatial abilities have declined significantly during these past three years. Nearly a dozen of her subtest scores are now at the 0-1%level. And yet, on the MMSE, my wife scored 26 in 2009 and 2010, and 25 in 2011. 

Most doctors are time-pressured and understandably want to screen for AD with a test that can be administered and scored quickly. However, quick screening tests such as the MMSE are simply not always effective. As noted by Dr. Peter V. Rabins, Director of the Division of Geriatric Psychiatry and Neuropsychiatry at Johns Hopkins School of Medicine, “The MMSE cannot be used to diagnose dementia.” Whereas the MMSE can be used to screen for cognition disorders, its limitations include “poor ability to detect minor changes in cognition – that is, mild dementia – and its lack of testing for certain cognitive functions such as executive function.”  ^1. 

Several journal articles in recent years have questioned the continued use of the MMSE for AD screening. One recent comprehensive review notes how the MMSE “may hide too much about what the person can or cannot do. The study’s author states firmly, “Above all, a diagnosis of dementia should not rely chiefly on a MMSE total score. The focus should be on the individual, their history, their strengths, and weaknesses.” In other words, the doctor should strongly consider a caregiver’s observations because only the caregiver can provide that history about strengths and weaknesses.  ^2.  

Researchers at Washington University School of Medicine in St. Louis administered a two minute questionnaire (AD8) to friends and family members of patients being screened for dementia. When comparing results of the AD8 to results of the MMSE, the AD8 was “superior to conventional testing in its ability to detect early signs of early dementia. It (the AD8) can’t tell us whether the dementia is caused by Alzheimer’s or other disorders, but it lets us know when there’s a need for more extensive evaluations to answer that question.”  ^3.

Dr. Ronald DeVere, a neurologist who directs an Alzheimer’s Disease and Memory Disorder Clinic in Austin, Texas, noted to me in an email that all doctors should follow one “rule of thumb” when trying to diagnose cognitive disorders: “If a person comes to a doctor with memory or other cognitive complaints that are verified by caregivers or close friends, a complete battery of neuropsychological testing should be conducted, especially if a person’s score is normal or mildly impaired on cognitive testing. However, observations by a caregiver or close friend should always take precedence over office testing such as the MMSE.” (Quoted with permission.)

So what is my advice to time-pressured doctors when a patient presents with no discernible symptoms during office visits … or when a patient scores very well on a brief screening test such as the MMSE … but when a caregiver tells you that your patient is experiencing serious cognitive or memory problems? My advice is very simple: Listen more carefully to the caregiver, and consider referring your patient for a complete neuropsychological evaluation.

1. Rabins, PV. What is the MMSE? Johns Hopkins Health Alert. December 27, 2010.

2. Nieuwenhuis-Mark, RE. The Death Knoll for the MMSE: Has It Outlived Its Purpose? Journal of International Psychiatry and Neurology. 2010; 23, 3: 151-157.

3. Galvin, JE, Fagan, AM, Holtzman, DM, et. al. Relationship of Dementia Screening Tests With Biomarkers of Alzheimer’s Disease. Brain. 2010; 133: 3290-3300.


Author’s note: I did have an article published on a similar theme. “Forget the mental status test – and learn to listen,” was published as a Letter to the Editor in the Journal of Family Practice. (Vol. 60, No. 5 May 2011, p. 250.) However this submission is substantially different.


Published as a Letter to the Editor in Journal of the American Geriatrics Society, October, 2012, Vol. 60, No. 10, p. 2000. Access at: http.//onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2012.04181.x/full 

 

 

 

 

 

 

 

Easier Trails: Travel with People with Dementia

My wife, Clare, and I had been taking wonderful international trips for many years. However, in 2006 Clare started to experience problems during our trips. She was leaving, and sometimes losing, personal items (jewelry, handbag, sweater, jacket) in hotel rooms, restaurants, and on tour buses. She was getting lost in our hotels and on small cruise ships. Restroom visits were becoming an issue because Clare would forget where to meet me afterwards. Conversations with other travelers were sometimes filled with misinformation, and she had periods of aphasia and agnosia. Pre-trip packing had also become a problem. Clare was not following her own packing checklist and couldn’t seem to decide what to pack. She would often pack, unpack, and then repack the same items only to later discover that she had brought many items she didn’t need but had forgotten to pack essential items. Collectively, these were among the first concerns that led me to suggest that she be seen by a neurologist after returning from one of our trips. But Clare’s cognitive testing scores indicated no serious problems. Doctors treated her for stress, anxiety, and depression. Eventually, however, Clare’s symptoms worsened, new symptoms arose, cognitive testing scores declined and, in 2009, Clare was diagnosed with early onset Alzheimer’s Disease (AD) at the age of 63. 

Within a year after Clare’s diagnosis, airplane travel had become too difficult but we hoped to continue taking domestic trips by car for many years. However, Clare’s pre-trip packing routines were making me so stressed out that I didn’t even want to take such trips anymore. Clare now needed several days to pack for a one week car trip, and she was constantly packing unneeded items and forgetting to pack what she did need. She was obviously confused and unable to make decisions on what to pack, but Clare resisted all of my efforts to help and we’d end up in shouting matches. “Stop treating me like a child,” she’d scream. “I may have Alzheimer’s but I can still pack for myself!” Or, “I’m not an idiot. I know I need to pack (that item); I just haven’t gotten to it yet. Stop trying to manage my life.”

On the drive home from one particular trip, I told Clare that this was probably our last trip because I didn’t want to go through the pre-trip packing stress and ensuing shouting matches anymore. This led to a somewhat heated discussion, but I remained insistent that Clare had to let me help her pack or there would be no future trips. I suggested a way that would, hopefully, resolve both the pre-trip packing stress and the frequent hotel room stress when Clare would invariably say that she had lost this or misplaced that item. Reluctantly, Clare agreed to try it “my way” the next time but I knew that we’d be revisiting this topic again in the future. So, not long after we got back home I typed up a summary of our discussion, and we both signed this new “trip packing agreement.” 

Predictably, several months later when it was time to pack for our next trip, Clare had forgotten that conversation, and when I told her it was time for me to help her pack, she started screaming at me. But I quickly showed her our “trip packing agreement” and I read the last paragraph aloud: “The next time we plan to travel, you probably won’t remember that we had this conversation or that you agreed to let me help you pack. So, we’re both going to sign and date this agreement today so I can show it to you when it’s time to pack for our next trip.” Clare briefly glanced at the piece of paper I had in my hand, checking to see we had both really signed it. She stopped screaming and composed herself while I hugged her tightly and said everything would be okay. I reminded her that she was still going to make all the decisions about what she was going to wear … I was just going to help her pack.

We then proceeded to pack together with the changes I had suggested several months earlier. First, I discarded her pre-trip packing checklist and said we’d use my checklist from now on for both of us. Her list omitted several important items and had much redundancy, whereas my list was more complete and was easier to follow. Second, I told her to get me all the toiletries she planned to bring on this one week trip. As she had done with recent trips, Clare brought me enough toiletries for a six month voyage! I placed all the items on the kitchen table and then gave her a zippered plastic bag, telling her whatever toiletries she wanted to take had to fit in that one bag. She “fought with me” over this, but I insisted she had agreed to do things “my way” this time, so I reminded her of what she used and didn’t use frequently. I also helped her transfer shampoo and other liquids and lotions from their large bottles into travel size three ounce plastic bottles. Then I had her pack whatever jewelry she wanted into one small cloth bag. I placed both of our toiletry bags, the jewelry bag, and our medication bag in my backpack. (I had already taken responsibility for packing all of our medications several years ago.) All that was left now was to pack our clothing.

I reminded Clare that we were going to do “modular packing” together … packing separately for each stop on our trip. I began by saying, “OK, we are going to be gone for nine days. So unless you plan to do a wash during the trip or wear items more than once, we each need to pack clothing for ten days … the nine days we plan to be gone , plus one extra change of clothing, just in case.” I then told her to place on our bed everything she thought she might want to wear on our trip … tops, bottoms, underwear, socks and shoes, etc. I’d then say something like, “Okay, we’re stopping at our first hotel just for one night, so I need something for you to sleep in for one night and then to wear the next morning when we drive to ____. “ I’d then say something like, “Let’s start with you giving me one pair of socks to change into the next morning. Now give me one pair of underwear,” and as Clare handed me each item I’d place them in a heavy duty plastic zippered bag … the kind of bags that pillows, blankets and other bedding items often come packaged in. When all the clothing necessary only for that hotel stop was in the plastic bag, I added my stuff, taped a note onto the bag that had the name of that hotel, and would then say something like, “Great. First day of packing is now done. 

I also set aside a cloth shopping bag for items that Clare and/or I might want to wear at more than one hotel … sandals, slippers, etc. That bag remained off to the side. I’d then say something like, “The next night we’re stopping at the ___ hotel and will be there for three days and two nights, so I need two changes of clothing. Please give me …” After Clare’s clothing was placed in a separate zippered plastic bag for that hotel, I’d add my clothing, tag the bag, and we’d go on to pack for the next hotel. When we were all finished, I placed all the zippered bags plus that cloth shopping bag in one large suitcase … but that suitcase never left my car. At each hotel stop, I’d simply grab that one zippered bag tagged for that hotel, place it in the cloth shopping bag, grab my backpack that had both of our toiletry bags and all The zippered bags then got filled with ‘dirty clothes’ and placed back in the suitcase when we checked out of each hotel. 

This system worked like a charm. Instead of days spent packing, the entire process took less than one hour. Instead of being confused with too many choices of what to wear in each hotel, and where things were, Clare had all she needed in that one zippered plastic bag and the cloth shopping bag. At each new hotel I’d place her toiletry bag next to mine in the bathroom and made sure items were placed back in the toiletry bag right after they were used. Fewer items in each hotel room also meant fewer items misplaced or temporarily lost in our hotel rooms. Nothing was now placed in drawers out of sight. Nothing was placed on table tops. Everything was now in one of three places … the zippered clothing bag, the plastic toiletries bag, or the cloth jewelry bag!

Although we no longer fly anywhere, I can offer some suggestions based on our earlier experience and that of others in my support groups. Some travelers with Alzheimer’s will get confused or anxious dealing with the crowds, public address announcements, crowded lounge seating areas, busy restrooms, and procedures for going through security. There are some steps you can take, however, to help minimize or prevent some of that agitation and confusion. 

Consider pre-printing cards indicating that the person has AD, requesting patience and requesting that people speak directly to you, the caregiver. You should carry this card with you at all times so you can “flash it” to airport personnel when necessary, and place a similar card around the person’s neck in the event you get separated. On that card should also be the person’s name, your name, and your cell phone number. A copy of that card is also in Clare’s wallet. Obviously, that also means that you must keep your cell phone with you at all times. Similarly, place any items that might set off the metal detector … coins, money clip, wristwatch, etc.) in a separate zip lock plastic bag to keep in your carry-on piece. Shoes should be easy on/easy off, and think twice before letting a person with Alzheimer’s wear a belt or suspenders that could set off the metal detector.

Also, consider pre-arranging for a wheelchair for the person with Alzheimer’s. You might also consider requesting an attendant of the same sex as the person with Alzheimer’s to remain with you. The attendant can also be helpful to you when using restroom facilities. If an attendant is unavailable, it may be necessary at times to ask a fellow traveler for some assistance. Even if a person with Alzheimer’s hasn’t wandered anywhere … yet … you can never be sure when this may happen. The confusion that may arise in a big, noisy, and strange new situation such as an airport could be that first time. To be safe, you must accompany that person to the restroom even if you must wait outside the door the entire time. On a recent trip, Clare locked herself inside a restaurant ladies’ room and then couldn’t get out. She started banging on the door and, fortunately, I was standing right there. She told me that someone had ‘locked her in” from the outside. This actually happened twice in the same ladies room over the course of two days. If available, always seek out a unisex bathroom so, if necessary, you can accompany your spouse or step inside easily should you suspect a problem

If you can obtain boarding tickets online the day before your flight leaves, do so. Same with curbside check-in. Any steps you can take to allow a person with Alzheimer’s to get into a wheelchair as soon as you arrive at the airport can help that person remain calm and make some of those long airport distances you must walk a lot easier. You should also inform personnel at the gate counter in the boarding area about your situation and request early boarding. And, certainly, don’t ever leave a person with Alzheimer’s unaccompanied anywhere in the airport, not even in a waiting area. And even though Clare is not incontinent … yet … I still carry a complete change of clothing with me at all times in my backpack when we travel, just in case. If your spouse is incontinent, then you should also be carrying extra items with you at all times.

If planning a major trip, consider one with a river cruise or small ship component. This will provide familiar room surroundings for the length of that portion of the trip, eliminate the need for packing and unpacking in different hotels, provide onsite dining without having to travel to restaurants, and provide a familiar restroom situation within your own cabin.

The bottom line for traveling with people with Alzheimer’s is really simple: Expect the unexpected, remain flexible, and keep your sense of humor. You should try to plan and prepare for all eventualities as best you can, but no matter how well you prepare there will almost always be surprises. Build in extra time because, as spouse caregivers know so well, a person with Alzheimer’s can sometimes take a lot of time to do simple tasks. For example, on most days my wife needs about an hour to get up, washed and dressed in the morning. But on her more confusing days, it may take her two hours. For this reason, I never plan trip activities that begin before early afternoon. If you plan on going slowly, you will be less stressed … and less disappointed. And whereas I always try to watch closely to minimize loss of personal items, and my new ‘packing system’ helps a lot (e.g., nothing goes into drawers anymore, etc.), I have accepted the fact that some things are just going to be left behind. I do not blame my wife for her forgetfulness, and as her caregiver I can only concentrate on so many things at one time. So when we travel, anything of significant value now remains at home. If something is lost, we contact the hotels or wherever we feel she may have forgotten the item. On our last trip we ‘lucked out’ and returned to a restaurant to find her sweater. But if an item is lost, it’s lost. End of discussion!

Even though we still ask for two ‘room keys’ at each hotel, there really is no point other than making my wife still feel that she is a responsible adult. I will no longer leave my wife in a hotel room by herself, even if she is sleeping. I’d be afraid she would be very confused if she wakes up and I am not there, and something untoward might happen. She may panic not knowing where I am, she may fall, or she may come looking for me and get lost. I bring a lot of reading material with me, and sometimes I bring a laptop computer. I used to leave the room in the morning just to go to the lobby for a newspaper to bring back to the room. I’d tape a note onto the bathroom sink faucet or onto the door saying I’d be back in a minute. But more often than not, with Clare’s agnosia she would not ‘see’ my notes regardless of where I left them, so I now I stay in the room even when she is asleep. Clare is never alone from the time we enter the hotel until we leave.

And maintaining that sense of humor is also very important. For example, when we have discussions with fellow travelers about trips we have taken, Clare sometimes talks enthusiastically about a country we’ve never actually visited. But on occasion she can still provide details she remembers from books, articles and TV shows with such conviction that she’d almost have me convinced we had really been there! Same with stories about family. She sometimes talks about our three children (we have two), or about our two grandchildren (we have four). I usually don‘t correct Clare because doing so might cause her to be upset and embarrassed. However, if I feel that I can correct her with humor in such a way that I know she will also laugh with me, then I may do so. But what does it really matter when talking with strangers who we will undoubtedly never see again after the trip? Whether I decide to correct her or not, however, I smile.

Regardless of your mode of travel, however, remember these three tips for traveling with a person who has Alzheimer’s:

1. Use one packing checklist to be sure you have all the essentials you need for the person with Alzheimer’s as well as for yourself.

2. Pack all the daily medications yourself for the person with Alzheimer’s, and pack them for daily usage. Small plastic 3” x 2” pill bags that can be bought at most drugstores and big box store pharmacies are perfect for this purpose. You can write on the bags or even apply different colored tape to distinguish morning, afternoon, and evening pill bags. Instead of having to take out pills from various bottles, you can simply hand one pill bag to the person with AD at the appropriate time of day. I also take several extra pill bags because it is quite easy for a person with Alzheimer’s to drop and lose tiny pills.

3. Maintain toiletry bags to use solely when you travel. Each time you return from a trip, take a few minutes to replace or replenish used items.  Then place toiletry bags away until it's time for your next trip.

Published in care ADvantage, Alzheimer's Foundation of America, Fall, 2012, Vol. 8, No. 2, pp. 15-17.  Access at:  http://afacareadvantage.org/issues/ca_fall12.pdf