Personal Blog #12 … More Data on Aducanumab … 12/10/19

According to an article published by The Associated Press on December 5, 2019 Biogen’s scientists issued a preliminary report on their new data analysis of their Alzheimer’s disease (AD) medication, aducanumab.  This is the medication that was in a Phase III clinical trial that was ended in March due to poor results but, after new data came in after the trial ended, was then promoted by Biogen as being effective.

Biogen’s presentation received very mixed reactions from scientists at an Alzheimer’s conference in San Diego, California on 12/5/19.  According to the A.P. article, scientists were “sharply divided over whether there’s enough evidence of effectiveness for the medicine to warrant federal approval.”  The new data released that day indicated that “the drug made only a very small difference in thinking skills in one study and none in the other.”  A.P. reports that independent experts said that “the new analyses were done on partial results, and with methods not agreed upon at the outset, making any conclusion unreliable.”

Some scientists cheered the new results and some judged them insignificant.  “Questions arose about the size of any benefit.  The drug did not reverse decline and it only slowed the rate of it compared to the placebo group by 22% in one study.  Yet that meant a difference in only 0.39 on an 18-point score of thinking skills.”

As I’ve written many times before, the currently FDA-approved AD medications have been shown to be effective for only about 50% of the people who take them, and then only for up to a year or two at most.  But, sadly, once doctors place their AD patients on these expensive medications, doctors are reluctant to ever remove their patients from these meds …  even though there is absolutely zero research to indicate that these meds have been or still may still be effective.  The result is that too many caregivers and AD patients continue to pay a lot of money year after year for AD meds that I refer to as “expensive bottles of hope” when that money could be much better used for day care, respite opportunities, or to help pay for home or institutional care.

I sincerely hope that, if this is the best new data Biogen can present to the FDA in support of their application to market aducanumab, the FDA resoundingly says no to marketing at this point.  If Biogen scientists think their data suggests promise, then let them conduct new year-long Phase III clinical trials with proper supervision.  That is the only way to demonstrate effectiveness.  Scoring one point more on a test of thinking skills is no reason to add yet another expensive bottle of hope to the market.

Personal Blog #11 ... Is Aducanumab an Effective Treatment for Early Stage Alzheimer's? ... 11/2/19

Of the top 10 causes of death in this country, Alzheimer’s disease (AD) is the only one with no effective means of prevention, treatment or cure. Any pharmaceutical or biotech company that discovers medication to effectively treat, let alone prevent or cure AD, will help millions of people … and make millions of dollars.  We often see reports of successful Phase I or Phase II clinical trials demonstrating positive effects of new experimental AD medications, but we have yet to see reports of effectiveness in a Phase III clinical trial.  The National Institutes of Health (NIH) describes the different phases of clinical trials as follows:  (Note: the NIH website may be accessed at … https://www.nia.nih.gov/health/what-are-clinical-trials-and-studies.)

"Clinical trials advance through four phases to test a treatment, find the appropriate dosage, and look for side effects. If, after the first three phases, researchers find a drug or other intervention to be safe and effective, the FDA approves it for clinical use and continues to monitor its effects.

Clinical trials of drugs are usually described based on their phase. The FDA typically requires Phase I, II, and III trials to be conducted to determine if the drug can be approved for use.

• A Phase I trial tests an experimental treatment on a small group of often healthy people (20 to 80) to judge its safety and side effects and to find the correct drug dosage.
• A Phase II trial uses more people (100 to 300). While the emphasis in Phase I is on safety, the emphasis in Phase II is on effectiveness. This phase aims to obtain preliminary data on whether the drug works in people who have a certain disease or condition. These trials also continue to study safety, including short-term side effects. This phase can last several years.
• A Phase III trial gathers more information about safety and effectiveness, studying different populations and different dosages, using the drug in combination with other drugs. The number of subjects usually ranges from several hundred to about 3,000 people. If the FDA agrees that the trial results are positive, it will approve the experimental drug or device.

A Phase IV trial for drugs or devices takes place after the FDA approves their use. A device or drug's effectiveness and safety are monitored in large, diverse populations. Sometimes, the side effects of a drug may not become clear until more people have taken it over a longer period of time.)"

Biogen, a major biotech company, ended its Phase III clinical trial with a new experimental medication, aducanumab, on March 21, 2019 because testing results indicated that it was ineffective.  So how is one to interpret Biogen’s announcement on October 22, 2019, that it will ask the FDA to approve aducanumab as a new treatment for early stages of AD? 

On their website, www.biogenalzheimers.com, Biogen states that after their study ended in March, “a new analysis of a larger dataset” showed that … “Patients who received aducanumab experienced significant benefits (my underlining) on measures of cognition and function such as memory, orientation, and language.  Patients also experienced benefits on activities of daily living including conducting personal finances, performing household chores such as cleaning, shopping, and doing laundry, and independently traveling out of the home.”  Biogen plans to submit their new data to the FDA in early 2020 to seek approval to market aducanumab.  

If the FDA determines that Biogen’s data support aducanumab as an effective treatment to slow the effects of AD, that would be a major step forward and offer tremendous hope to people with AD and their caregivers.  But before I get too excited, I want to see that results reported as “significant benefits” are what I refer to as “real world” benefits.  Reports of “statistically significant” results on paper/pencil tests measuring cognition, or of brain scans or biomarkers measuring a decrease in amyloid beta protein in the brain, are always welcome. 

However, such measures do not necessarily translate into more effective patient functioning at home or in a facility.  Answering 1 or 2 more questions correctly on a cognitive test or remembering 1 or 2 more words on a memory test may yield “statistically significant” results but may not always mean more effective functioning in the real world.  However, medication resulting in significant improvement for people with AD for 6-12 months or longer as they deal with activities of daily living or who can continue to go shopping or travel independently outside the home … to me, that would be a major game changer.  Such benefits would allow the person with AD to enjoy a much better quality of life for a much longer period of time. 

If Biogen follows through on its current plans, this will the first time that a company has ever ended a “failed” Phase III clinical trial of an experimental AD medication … then re-analyzed additional data … then claimed that this additional data support effectiveness of its medication … and then requested submission to FDA for approval to market.  After reviewing the research findings submitted by Biogen, the FDA can approve the medication, reject the medication, or find some evidence of effectiveness … but not conclusive enough evidence to warrant approval … and require additional clinical trials.

As a former AD spouse caregiver, I hope that the FDA will concur that aducanumab can be that major AD game changer after reviewing data submitted by Biogen.  But, until the FDA makes a decision, I will remain skeptical.  Biogen announced that it plans to report their new data and seek approval from the FDA in “early” 2020.  Stay tuned!

Personal Blog #10 … Life After Moving On … 9/2/19

I didn’t expect to write anything else for this site after posting Personal Blog #9 last December.  I wrote in that posting, “Now that I have moved out of my comfort zone and moved on with the rest of my life, I don’t think I will have anything new to write about that could be helpful to others.”

I have moved on quite a bit … but not as completely as I had hoped.  I still miss Clare a lot, and every week I experience some degree of sadness, loneliness, and painful feelings of loss.  This site has received more than 100,000 visits since my first postings in 2013, so I’m hoping that site visitors who may also be struggling to fully move on and find happiness will read this and know that they are not alone.  I, too, am continuing to struggle.

In March, 2015, a year before Clare died, I wrote an article titled, “An Alzheimer’s Spouse … Married, Yet Widowed.”  As I watched Clare fading away from me faster and faster, I wrote: “I miss not having conversations with Clare.  We can no longer play games, travel … I miss all of the social, emotional, and physical parts of our once close relationship.”

Sadly, I could write those same words today.  During this past year I was lucky enough to have someone in my life who, while not fulfilling all my wants and needs, provided me the hugging and cuddling I have missed so much.  That alone gave me great happiness … but, unfortunately, that relationship was very short-lived.

I don’t expect to ever find “another Clare,” but I do hope to find a special woman to share the social, emotional, and physical aspects of a close relationship.  Such a special woman would add much happiness to my life and reduce my sadness and loneliness.

Contributing to my continuing sadness is my inability to focus only on positive memories of Clare.  Our last years were so emotionally painful that whenever I try to remember only the “good times,” my mind is quickly flooded with images of Clare after AD had already ravished her brain and body.  These are images I so much want to forget … but I seem unable to do so.  I just cannot block them out.

To keep feelings of sadness partially suppressed, there are TV shows and movies I will not watch, and music I will not listen to.  Watching loving couples on a TV show or in movies, whether enjoying life to the fullest or dealing with death, too often makes me cry.  Similarly, listening to some favorite old songs will often make me miss Clare so much that I just start crying.

Hoping to meet a special woman, I have been sampling more new clubs and activities for seniors at community centers and libraries.  Last year I joined an internet dating site, but I didn’t participate because I just wasn’t ready yet.  In recent months, however, I have been actively participating on multiple online dating sites.

These efforts have enabled me to meet several nice women … but not yet the right woman for me.  Many friends have suggested that I’ve set the bar too high, but I don’t think so.  Only a special woman will provide me with the relationship I really want. 

I know what I’m not looking for … I’m not looking for a friend “with benefits.”  I will never have sexual intercourse again. It may not make sense to others, but sex with another woman would feel like a betrayal of the incredibly special love Clare and I once shared.  However, whereas I am not looking for a friend with “full benefits,” a friend with “modified benefits” would be wonderful.

AD widows and widowers of all ages need to find new happiness in their lives.  Making new friends, pursuing old passions, and exploring new hobbies and activities are some ways to do this.  But for some what is needed most is a new close relationship to once again enjoy some aspects of the marriage they once had … a “second act” that will provide more happiness, less sadness, and less loneliness.

 

I have moved on quite a bit since Clare passed away, and since writing Personal Blog #9 last year.  The quality of my life is better now.  But … I am still hoping to have that second act.

Personal Blog #9 ... I’ve Moved On ... 12-4-18

  

When Clare was in early stages of AD, I was her 24/7 caregiver.  On her “good days” we continued living pretty much as we always had.  We went out to eat, saw movies and plays, traveled, socialized with friends, and played word games that Clare could still enjoy.  As Clare entered moderate AD stages and could no longer be left alone, we didn’t go out as much, did very limited travel, socialized with only a few friends, and rarely played word games.  Most of our time was spent watching TV together.  Staying home with Clare became my “comfort zone.” 

In 2013, when Clare’s AD worsened to where I felt I could no longer continue as her 24/7 caregiver, she entered an assisted living residence.  Other than visiting with Clare each day, I continued living alone in my comfort zone, spending most of my time watching TV.  I felt both married and widowed at the same time.

Experiencing what psychologists call “anticipatory grief,” especially after Clare no longer knew who I was, I foolishly thought that Clare’s eventual death would not hit me too hard.  But I was very wrong.  For 2 years after Clare’s death I continued to experience considerable sadness, depression, guilt, and anger among other negative emotions.  I just wasn’t ready ... or motivated ... to move out of my comfort zone and seemed unable to truly find happiness again.

This past spring, however, I started taking steps to move out of my comfort zone and move on with the rest of my life.  I wrote about these steps in Personal Blogs #6-8.  Clare will be in my heart forever, and I still have occasional painful moments such as when listening to some songs or watching sensitive scenes on TV or in a movie.  But, despite some of those teary moments, I have found happiness again ... my “new normal.”

Writing has always helped me clarify my thinking.  From the onset of Clare’s illness, writing articles for publication helped me organize my thoughts so I could ask doctors better questions, suggest ways to more effectively treat Clare, and try to improve overall communication with doctors.  I wrote about these issues while trying to make life easier for Clare, and for me ... but I also hoped that my articles might be helpful to other AD caregivers.

Similarly, when Clare entered an assistant living residence, psychiatric hospital, and finally into a nursing home I wrote about what I observed ... AD patient care, programs, personnel, and communication.  I wrote articles to suggest changes to improve the quality of life for people with AD in such settings.  I hoped that articles published in medical journals would help doctors and long-term care administrators re-think how they were diagnosing, treating, and caring for people with AD, and how they treated and communicated with their caregivers. 

I wrote op-ed columns for major newspapers to try to raise public awareness of AD and highlight the need for more government funding of AD research.  And last year I started writing Personal Blog columns, posted only on this website, describing how I was dealing with life as an AD widower.

Writing has always been very cathartic for me.  Describing what Clare was experiencing and how we were feeling helped me cope better during our AD journey.  Writing about my lengthy bereavement in Personal Blog columns helped me eventually realize that I would only find happiness again if I forced myself to move out of my comfort zone.

After my 100^th article was published in August, I recognized that to continue moving on I needed to stop writing about AD.  When I posted Personal Blog #8 in September, I wasn’t sure if I would post additional blogs in the future.  I can now say, however, that I expect this Personal Blog #9 to be my final posting.  Now that I have moved out of my comfort zone and moved on with the rest of my life, I do not think I will have anything new to write about that could be helpful to others.

I will continue to monitor this site so it remains a viable resource for the 1000+ visitors who come here each month, and I will continue responding to emails from AD caregivers and doctors.  I will also continue removing spam each month because a few visitors sometimes post comments about “spiritual healers” whose “magic potions” can cure AD.

Being an AD spouse caregiver is a role I wish for no one, and life as an AD widow or widower is not easy.  Wherever you are on your AD journey, please make time to care for yourself.  Best wishes for a happy and healthy new year.

Personal Blog #8 ... Finding Continued Happiness ... 9-12-18

It’s been nearly 2½ years, but I’ve still been having difficulty fulfilling Clare’s final wish for me ... she wanted me to find “continued happiness” after she was gone.

Psychologists have written about how the loss of a husband or wife in an extremely close marriage can be particularly difficult for the surviving spouse.  I can count on the fingers of one hand the number of married couples I’ve known with a marriage as strong as ours.  Clare and I were truly each other’s best friend and we needed no one else to be with to make each day special. 

Three months ago, in Personal Blog #7, I described 4 steps I had taken to move out of my comfort zone to try to find more happiness in my life.  I had hoped that joining a nighttime bowling league, facilitating another AD spouse support group, joining an online dating site, and starting a relationship with another woman might bring me greater happiness and less loneliness.  Some of these steps were successful, some were not, additional new steps were taken, and collectively these steps have resulted in a happier and less lonely life.

I am continuing to bowl in my Wednesday afternoon and Thursday evening leagues, but I quit my Friday morning league to join a Friday evening league, and I also joined a Monday evening league.  I’m already enjoying my new evening leagues and am pleased to be spending fewer nights, alone, at home.

I started facilitating a second AD spouse caregiver support group for the Alzheimer’s Association, but I soon gave up my facilitator role with both groups. When group members had specific concerns, I reminded them to call the Alzheimer’s Association 24/7 helpline, but also said they could contact me if they thought I could be helpful.  The Alzheimer’s Association, however, prohibits facilitators from having contact with caregivers outside of scheduled meetings.  I was reprimanded and told that I must not allow members to contact me anymore.  At each meeting I also tried to educate caregivers on various AD topics and, when asked, gave my opinions and advice.  But I was told that facilitators are not allowed to offer their own opinions and advice, so I was soon reprimanded a second time.  

When asked to serve as a volunteer support group facilitator, I was told that the Association wanted to take advantage of my AD experience and knowledge base, and I truly looked forward to helping caregivers.  But after being told that I could not support caregivers the way I felt they should be supported, I chose to step down as facilitator.  Running afoul of the Association’s “no contact/no advice” rules seemed especially ironic since the Association had praised me for my AD opinions and advice when given as a featured speaker at their annual caregiver conference. 

In retrospect, however, leaving my facilitator role may have been another positive step.  I decided that my 100^th AD article, published last month by Annals of Long-Term Care, will be my last AD article.  I have also decided that I will no longer give AD presentations to caregivers, doctors or medical students.  If I am no longer facilitating AD spouse caregiver support groups, and no longer writing or speaking about AD, maybe I will be able to move on more easily with my new life. 

Joining an internet dating site was very valuable because it helped me clarify the kind of relationship I was seeking.  Women on that site were looking for love in long-term serious relationships, but that is not what I want.  I’m not looking to “fall in love” again.  In my heart, I still am ... and always will be ... deeply in love with and married to Clare.  I also know that I can never be in a relationship where I could possibly end up as a 24/7 caregiver ... I couldn’t handle that again.  My time on that dating site reinforced that all I want going forward is a “friend with moderate benefits” ... a special woman to be with several times a month to enjoy companionship and a moderate physical relationship ... but nothing more serious than that.

I am taking other new steps to move out of my comfort zone.  For example, I’ve signed up for a “Lifelong Learning Lecture Series” given at my local community center.  I’ve also started flying again, for the first time in nearly 10 years, and already have tickets for future flights to visit with family and friends.  In addition, I’m now checking out some river cruises for summer travel.

In my April/2016 piece in The Huffington Post, “Not Ready to Move On,” posted only hours before Clare died, I wrote that “I want to ... and need to ... maintain my emotional connection with Clare for as long as possible.  If that delays my moving on, so be it.”  When I wrote that article, despite my strong love for Clare, I didn’t think it would take me too long to move on after her death.  After all, I thought, I had already been grieving for nearly three years, living alone, feeling more widowed than married.

But I was wrong.  Very wrong.  Clare’s death hit me like a ton of bricks.  Despite my years of “anticipated grief,” accepting her loss was painful beyond words.

In “Inspirational Thoughts for Alzheimer’s Caregivers, Widows, and Widowers” (AFA Care Quarterly, Spring/2017) I wrote about how Katy Perry’s song, “By the Grace of God,” got me through my darkest moments before and after Clare died.  As I battled with depression, anger, guilt, and other emotions, there were many days when I felt as if I were down on the floor and out for the count, questioning if I even wanted to continue living.  Perry’s words in that song ... “I picked myself back up, I knew I had to stay, I put one foot in front of the other, I looked in the mirror and decided to stay” ... could have been describing me.  Words such as “running on empty, so out of gas,” perfectly expressed how I felt.  But Perry also sang, “I am not giving up” ... and those words always won out.

Someone I love very much recently shared with me these words attributed to Rosemary Kennedy: “It has been said, 'time heals all wounds.' I do not agree. The wounds remain.  In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens.  But it is never gone.”

Clare’s last few years of life, but especially her death, left me with deep painful wounds and frequent periods of overwhelming sadness and tears.  Recent successful steps to move out of my comfort zone, however, have greatly lessened that pain.  I feel happier, and less lonely, than I’ve felt in quite a few years.  Maybe now I will be lucky enough to fulfill Clare’s final wish for me ... continued happiness.

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Note to readers:  I haven’t decided yet if I will post new Personal Blogs on this website.  If interested, please check back in 3-6 months to see if I have written more about moving on with my life.  As always, should you want to comment on what I’ve written and would like me to respond, please email me at acvann@optonline.net.

Geriatric Medicine Training For LTC Physicians

Doctors employed by nursing facilities are often internists by training. According to the American College of Physicians (ACP), internists “are recognized as experts in diagnosis, in treatment of chronic illness, and in health promotion and disease prevention…equipped to deal with whatever problem a patient brings—no matter how common or rare, or how simple or complex.” ACP also notes that internists “are specially trained to solve puzzling diagnostic problems and can handle severe chronic illnesses and situations where several different illnesses may strike at the same time.”¹

That seems to be a description of precisely the type of doctor who should be serving in facilities with large numbers of aging adults. According to ACP, “some internists choose to take additional training to ‘subspecialize’ in a more focused area of internal medicine. Subspecialty training (often called a “fellowship”) usually requires an additional one to three years beyond the basic three year internal medicine residency.” 

Geriatric medicine would seem to be the area of specialized training that would best prepare a doctor for working in a long-term care facilities (LTCFs), as geriatric medicine focuses on training and skills to treat older adults—the largest resident population in LTCFs. Internists who continue their education with advanced training in geriatric medicine “specialize in the diagnosis, treatment, and prevention of disease and disability in older adults.” Such doctors are concerned with “health problems that frequently affect older adults, such as pain, falls, memory loss, incontinence (involuntary loss of urine), and medication side effects. Another important aspect of geriatric medicine is evaluating an older individual’s ability to care for him- or herself (eg, prepare and eat meals, bathe, dress).”²

When my late wife, Clare, entered an assisted-living facility (ALF), she was in moderate stages of Alzheimer disease (AD) and placed in the ALF’s lockdown dementia unit. We were told that 2 internists came several days each week, and one would be assigned to serve as Clare’s primary care physician. I soon discovered, however, that these doctors had very little background or experience with AD patients.

If Clare’s ALF doctor had advance training in geriatric medicine, perhaps I would not have had to personally raise concerns so often with ALF administrators about Clare’s care. A doctor with geriatric care specialization would probably have observed that Clare needed greater assistance with such activities as eating, bathing, and dressing and, hopefully, would have directed ALF staff to give more attention to these areas of need.

When Clare eventually entered a nursing home (NH), her NH doctor was an internist with a specialization in cardiology. Whenever I wanted to discuss AD medication changes, I spoke with the visiting psychiatrist who then spoke with the NH internist on my behalf. Cardiopulmonary arrest was listed on Clare’s death certificate as the immediate cause of her death. In the section on her death certificate where doctors can list “other significant conditions contributing to death but not related to the cause of death,” the NH doctor made no mention of her 10-year battle with AD. A doctor with additional training in geriatric medicine likely would have noted that AD was a significant condition contributing to her death.

Internists definitely seem to be the type of doctor best suited for diagnosing and treating the aging population in LTC settings. However, internists with a specialization in geriatric medicine should be the gold standard, especially if the LTC’s aging population includes people with AD or other forms of dementia. 

References

1. American College of Physicians (ACP). About Internal Medicine. Acponline.org website. https://www.acponline.org/about-acp/about-internal-medicine. Accessed August 20, 2018.

2. HealthCommunities. What is a geriatric physician? HealthCommunities.com website. http://www.healthcommunities.com/health-care-providers/what-is-a-geriatrician.shtml. Published November 13, 2008. Updated September 18, 2015. Accessed August 20, 2018.

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This is Dr. Vann's last Commentary blog column for Annals of Long-Term Care. He has also written frequently for caregiver magazines, other medical journals, and major newspapers. After his late wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read his many other articles about Alzheimer's at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net.

Published in Annals of Long-Term Care, online only, on 8/22/18.  Access at https://www.managedhealthcareconnect.com/blog/geriatric-medicine-training-ltc-physicians

Communication Between LTC Doctors and Caregivers

As a former Alzheimer disease (AD) spouse caregiver, I had interactions with doctors caring for my late wife in the dementia units of 2 different long-term care (LTC) settings: an assisted living facility (ALF) and a nursing home (NH). My wife received excellent care in both facilities.  However, her care would have been even better had doctors utilized my experience as her caregiver more often. The below situations are illustrative of this.

Prior to her LTC placement, my wife was seen regularly by a neurologist to oversee medication for anxiety. After placement in her ALF, I expected the ALF doctor to take over that responsibility. However, I had to continue taking her to a neurologist because the LTC doctors were not very familiar with anxiety disorder medications. The 2 doctors who came to my wife’s ALF once a week were both internists. ALFs with separate, sizable lockdown units for dementia residents (my wife’s unit had 32 dementia residents) should have a geriatric psychiatrist or neurologist onsite at least once a month—or at least available to the ALF nurse, social worker, and ALF doctor on a regular ongoing basis. 

While I was traveling for a few days, Clare woke up at the ALF and was unable to walk. My daughter brought her to the hospital in a wheelchair. Upon entry to the hospital, Clare had been taking quetiapine, alprazolam, sertraline, lorazepam, haloperidol, venlafaxine, and divalproex sodium all to help control her anxiety. In my absence, my daughter insisted that the doctors stop all that medication as they tried to determine the cause of her sudden inability to walk. I immediately drove home. By the 2^nd day at the hospital, Clare was able to walk again, first with a walker and then just with me holding her hand. The doctor said he couldn’t explain why she stopped walking suddenly, but because her anxiety level was still very high, he was going to place her back on all her anti-anxiety meds by the end of that week.  But Clare was discharged to the NH before the end of the week for continued rehab, and the NH doctor refused to place her back on her anti-anxiety meds.

The NH doctor available for dementia patients in my wife’s NH was also an internist. I happened to see the doctor at the charge nurse’s desk at the exact moment my wife was admitted to the NH. I asked if we could meet to discuss my wife’s medical history, but he said he already read her history, so there was no need to meet. I also said I’d like to update him on her recent history with medications she had been taking until a brief hospitalization that same week, but, again, the doctor said there was no need to meet because he already had that information as well.  

Two days after my wife’s admission, I started receiving calls from the NH about her anxiety issues. The next day, I asked the dementia unit charge nurse to see a list of my wife’s medications and discovered that the NH doctor had not placed her back on any of her anti-anxiety medications. I asked why, and the nurse said she’d call me back after speaking with the doctor. The next day, the nurse called me saying that it was because my wife had not been taking those medications during a hospitalization that occurred between her ALF discharge and NH admission. I told the charge nurse that her neurologist had only temporarily removed those medications to see if they were possibly causing other issues that led to her hospitalization and that the neurologist planned to place her back on those medications upon hospital discharge.

I then asked to speak with their on-call psychiatrist. The next day he returned my call. We spoke briefly, and he agreed that my wife should be placed back on at least some of her anti-anxiety medications right away. As soon as my wife resumed taking those medications, many of her anxiety issues disappeared. Within weeks, after more conversations with the psychiatrist, more anti-anxiety medications were added back. Had the NH internist taken a few minutes to discuss Clare's medication history with me on the day she was admitted, my wife wouldn’t have had to suffer needlessly for so long.

LTC doctors ought to understand that some AD caregivers can provide a great deal of helpful information. Some AD caregivers are extremely well-informed about the medications taken by their loved ones and well-versed in their medical history.  

I would like to suggest one simple practice to all LTC physicians: whenever new AD residents or patients are admitted to your facilities, schedule appointments with their primary caregivers as soon as possible. Brief 10-minute meetings with them to review medical histories and medications may provide you with helpful information and insights that do not appear in any of your medical charts or reports, records that can often be incomplete or inaccurate.

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Dr Vann writes a bi-monthly Commentary blog column for Annals of Long-Term Care. He has also written frequently for caregiver magazines, other medical journals, and major newspapers. After his late wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read more than 90 of his other articles about Alzheimer's at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net.

Published in Annals of Long-Term Care, online only, June 26, 2018.  Access at:   https://www.managedhealthcareconnect.com/blog/communication-between-ltc-doctors-and-caregivers