Sunday, June 3, 2018

Personal Blog #7 ... New Steps Forward ... 6/3/18



Three months ago, in Personal Blog #6, I wrote that I hoped to add more happiness to my life and reduce some of my loneliness.  I had already moved on enough after Clare’s death to be able to describe my life as “okay,” but I wanted to see if I could do better than okay and, for that to happen, I needed to move out of my “comfort zone.” 

Since posting PB#6, I have taken four major steps to move out of my comfort zone to seek that “continued happiness” which Clare had wanted for me after she passed.  One relatively easy change was “trading” one of my daytime bowling leagues for one in the evening.  Starting in September when the winter bowling leagues re-start, I will continue to bowl in my noon and 4 p.m. leagues each week  but, instead of continuing to bowl in a 9:30 a.m. league, I will now bowl in a 7 p.m. league.  Forcing myself to get out of my house one evening every week to do something I enjoy, while also socializing with others instead of sitting home like a couch potato, should be helpful. 

A second relatively easy step was to agree to get out of my house two more times each month to help others.  For the past six months I have been facilitating a monthly Alzheimer’s Association support group for caregivers of spouses with younger onset Alzheimer’s disease (AD).  This month I will also begin facilitating a support group meeting twice a month for caregivers of spouses with moderate to advanced stages of AD.

The next two steps I took to move out of my comfort zone were not as easy. My third step was to register on an internet dating site and I posted the following “introductory message” on that site: “After 2 years of widowhood following a wonderful marriage, I'm no longer dealing with daily sadness or depression and am enjoying life again.  I am hoping to be lucky enough to find a special woman who can add to my happiness and reduce some of my loneliness while I do the same for her.”

I also posted a longer personal profile and each week I received notifications from interested women.  But after four or five weeks, I still had not established contact with any of them because of one phrase common to their profiles.  Each woman was seeking a “serious relationship.”  But did I also want a new serious relationship ... or  did I want something else?

I re-read my site introduction and profile over and over.  I thought back to my one experience with a “singles group” at my local community center several months after Clare died.  At a certain point, the social worker leading the “singles over 60” group, about 40 women and 10 men, asked us to be seated and briefly introduce ourselves.  As part of our introductions, we were asked to discuss the relationships we were looking for.

When it was my turn to speak, I described my fairy tale marriage, my ten years as an AD spouse caregiver, and how I was now pretty much set in my ways after living by myself for so many years.  I said that I was looking for a woman to be with several times a month to enjoy companionship and a physical relationship, but nothing much more serious than that.  I said that I did not want another serious relationship, and that I was probably looking more for a “friend with benefits.”

As soon as I had finished speaking, several men and women criticized my remarks.  They said that I needed to be willing to compromise with what a woman may want in a new relationship.  I responded by saying that, with all due respect, at my age I felt no need to compromise.  If I couldn’t find a woman to enjoy the kind of relationship I wanted, then I simply would not enter into a new relationship.

Recalling that experience, I realized why I had not yet initiated contact with any women on that internet site.  I edited my profile, writing in part: “Now that I have been on this site for about a month, I'm realizing that I am not looking for a long-term ‘serious relationship.’  I am looking for a ‘friend with benefits,’ a woman to be with just several times a month instead of a woman to be with more often or on a daily basis.  Just being honest!”

I felt much better after posting that revised profile.  It was now even more clear to me that what I had been missing most in my life in recent years was the physical relationship with a woman.  A friend with benefits is exactly what I needed, and wanted, to add happiness to my life and reduce my loneliness. 

One morning, while having breakfast with a very good female friend, she asked if I had found someone yet to be my friend with benefits.  I said no.  She then surprised me by saying that she would be interested in being my friend with benefits.  This is a woman whom I have loved deeply as a very close friend for more than 25 years.  My initial reaction was something like, “Are you serious?  Are you telling me that you would really consider this?”

I asked her to take the next week to think more carefully about entering such a new relationship, and the next time we got together we discussed my expectations more fully.  I told her that I would be ecstatic if she would become my friend with benefits, but I wanted to be sure that she wanted this new relationship as much as I did.  She said she did, so we decided to give it a try. 

The first time we got together to begin our new relationship, we agreed to take things very slowly.  However, our physical relationship moved along very quickly, much more quickly than either of us had anticipated.  But everything that happened felt so natural, as if it were meant to be.  We were both very pleased with our first experience in this new physical relationship, and we have continued to try to be together this way once a week.  And although enjoying our new “benefits,” we are convinced that even should we decide not to continue with those benefits, our deep friendship will always remain. 

I never did respond to anyone I met on that online dating service during 3 months, and I have not renewed my subscription.  But had I not taken that step to sign on, I may never have known that I was correct in thinking that to find continued happiness I only needed a friend with benefits.  Clare will always be with me in my heart, but I can now finally say that I have moved on with the rest of my life.

By moving out of my comfort zone, my life is no longer just “okay.”  For the first time in many, many years, I can now honestly say that I am happy and my life is good.

Friday, May 4, 2018

Support Groups for Alzheimer's Widows and Widowers


When my wife was diagnosed with Alzheimer's disease (AD), I joined a caregiver support group exclusively for AD spouses. Everyone in my group, expertly led by an outstanding social worker, was dealing with similar issues. We were all caring for spouses who were slowly dying of AD. We discussed our feelings and shared our concerns, receiving emotional support as well as helpful suggestions from the social worker and other members in our group. Our spouses were at different stages of AD, and the major daily caregiver stressors were different for each of us. But despite these differences, whenever one spouse voiced a fear or concern, heads nodded in silence. When that person had finished, others commented aloud. Everyone in our group easily related to what others in our group were saying. We were all AD spouse caregivers. We all "got it."
My wife passed away in 2016 after her 10-year battle with AD. It would have been helpful for me to be able to join a different type of AD spouse support group at that time—one exclusively for AD widows and widowers. Such a group could have provided me with continued emotional support and helpful suggestions from others who were experiencing a similar grieving process. However, I could not find any support groups specifically for AD spouse widows and widowers at that time.
I conducted a thorough search, but I was unable to find even one support group specifically for AD widows and widowers anywhere in my vicinity (Long Island). The New York State Health Department estimates that more than 400,000 residents of New York have AD, with about 50,000 or more living on Long Island. Yet even with such a large population of people with AD, no support groups existed on Long Island in 2016 to specifically help AD spouse widows and widowers deal with their bereavement.
Fortunately, I have come a long way in moving on with the rest of my life since my wife passed away, but I also know that I still have a way to go. However, a 2018 Google search continued to reveal no bereavement support group anywhere on Long Island that is specifically for AD widows and widowers. And that is a shame.
To their collective credit, during this past decade both the Long Island Alzheimer's Foundation and the Long Island branch of the Alzheimer's Association have increased the number of support groups devoted to AD caregivers, including specific groups exclusively for AD spouse caregivers. Several Long Island hospitals, assisted living facilities, and nursing homes also now provide or host caregiver support groups for AD spouses. This growth in AD spouse support groups is admirable.
But, still, there are no specific support groups to assist AD spouses after their loved ones have passed on and their caregiving days are over ... and this needs to change.
"Generic" support groups for widows and widowers can be very helpful to many widows and widowers. But in the generic widow/widower's support group I joined shortly after my wife died, my experiences of many years as an AD spouse caregiver did not resonate with others in my group. The other widows and widowers could simply not relate to my experiences as a long-term caregiver over a 10-year period.
Widowed AD spouses have survived an experience that is different from most other widowed spouses. Widows and widowers grieving after the sudden and unexpected death of a spouse, or after the death of a spouse who had poor health for several months or even a few years prior to death, have gone through an experience quite different than that of a grieving AD spouse. AD widows and widowers have often been grieving for five or 10 years prior to their loved one's actual death. AD spouses have often watched their loved ones decline and suffer for many years due to this horribly debilitating and degenerative disease for which there is no effective means of treatment or cure.
Caring for loved ones slowly but surely losing their cognitive skills, losing their memories, losing the ability to feed or clothe themselves, losing the ability to clean or toilet themselves, losing the ability to walk or talk—these experiences over many years are intensely emotionally painful. Many AD spouse caregivers have also had to deal with dramatic personality changes in their loved ones that often cause some to act aggressively towards them, only adding to their intense emotional pain.
In a generic support group, members may be able to easily recall and speak about loving memories of the many "good times" shared with their recently deceased spouses. But even such a simple task may be hard for AD spouses, who may have to think back 10 or 15 years to recall pleasant memories of happier times. For many AD spouses, the stress of daily caregiving over so many years may flood their minds with so many images of the bad times that images of those good times may not be so easy to recall.
Even though it has been two years since my wife died, when I close my eyes I see her sitting slumped over in a wheelchair in a nursing home, not as the vibrant woman she once was. I see her as frail, unable to walk, unable to swallow food, unwilling to even want to continue to live. I see a woman who no longer recognized who I was, who had no concept that we were married, and no longer knew my name or that I was her husband. These are horrible memories to have, and the other members of my generic support group for widows and widowers could not relate to this at all.
Our country's population is continuing to age, and the number of people with AD is continuing to grow. Hopefully there will eventually be recognition by organizations working with AD caregivers that there is a need for support groups that specifically meet the needs of AD widows and widowers.
Most support groups are facilitated by social workers. Perhaps greater awareness and recognition by social workers of the need for targeted support groups for AD widows and widowers can help make such groups happen sooner rather than later.
— Allan S. Vann, EdD, MS, is a retired public school principal writing to advocate for increased awareness of Alzheimer's disease and to stimulate greater research funding, improve diagnosis and treatment for people with Alzheimer's, and enhance the lives of fellow caregivers.
Access online only at http://www.socialworktoday.com/news/pp_050318.shtml

Wednesday, April 25, 2018

Making LTC Facilities More Resident and Caregiver Friendly


All long-term care (LTC) institutional caregivers should seek to work closely with family caregivers/ advocates to further what should be a common dual mission: to provide the best possible care for each resident while making life easier for their caregivers/advocates. One way to accomplish this mission is for LTC administrators to place themselves in the shoes of concerned caregivers/advocates.
  
How does one do that? As a former caregiver/advocate for my late wife, an Alzheimer disease (AD) resident in lockdown units in both an assisted living facility (ALF) and a nursing home for 3 years, I would suggest simply asking caregivers and advocates for their opinions.

In those 3 years, never once was I asked this simple question: what can our facility do to improve upon how we are providing care for your loved one, and what can we do to make life easier for you?  In other words, what can we do make our facility more resident- and caregiver-friendly? Not shy by nature, I offered my suggestions even though I was never asked! At a certain point, I requested bi-weekly meetings with the chief administrator to discuss my concerns. Usually the follow-up was very good because the administrator, familiar with my published writing, feared I was going to write an article for publication detailing the problems at that facility! But I discovered that some caregivers/advocates refrain from voicing opinions and suggestions for change due to fear of “adverse treatment” of their loved ones if they complained. 

Dementia residents often may be unable to provide valuable feedback, but their caregivers/advocates can do so, either through written survey forms or through scheduled occasional meetings with administrators.

When I was a classroom teacher, I asked my students to complete a “report card” on me at the end of each school year. Names were optional; most questions were simple ratings, but some questions were open ended. Later on, when I worked as a principal, I also asked all of my teachers to complete a “report card” on me at the end of each year. Such feedback was extremely valuable, leading to improvement in either my teaching plans or administrative policies. I would suggest that LTC administrators also seek feedback from their caregiver/advocates.

What kind of feedback? I would divide such feedback into 2 categories: general and specific.  Generic categories would include many of the same items included on the checklist* I used when initially checking out ALFs. Not all of those checklist items would be appropriate for a survey after admittance, but feedback on many of those items would be valuable.  
Generic categories on my checklist included ratings or comments on items such as:
  • First impressions (“clean, cheerful, well maintained?”)
  • Common areas (“Garden/walking paths?”)
  • Resident care (“Does staff monitor personal hygiene, eg, bathing, oral care?”)
But there were many more categories. With my personal caregiver/advocate experience, I can think of other generic questions to ask about availability of visitor parking, special dining facilities for caregivers/advocates to use for a resident birthday party, etc. 

Specific categories would be about issues that LTC administrators may only be able to learn about with feedback from caregivers/advocates. Perhaps the best way to obtain such specific feedback is to simply ask one question:
  • Are there any policies and practices which you feel can be improved upon to provide better care for residents and/or make life easier for caregiver/advocates?
Had I ever been asked this question, I would have responded with such questions as:
  • Why do caregiver/advocates coming to visit their loved ones in your lockdown dementia unit sometimes have to wait several minutes before someone unlocks the door?  
  • Would providing remote openers to unit personnel be helpful, so when a caregiver presses a buzzer to enter, personnel occupied with other residents could simply click on their remote opener? 
  • Could you provide a key code pad by the locked unit entrance with the code posted to allow caregivers/advocates to open locked doors by themselves?
  • Why doesn’t your parking lot snow removal contract result in more frequent periodic snow removals in a timely manner, so caregiver/advocates have available safe places to park, and walk, when coming to visit their loved ones on a snowy day?
  • Why is the music volume on lounge speakers so loud that it disturbs caregivers meeting there with loved ones? Can separate lounge volume controls be installed?
  • Why are outside chairs, tables, and benches not cleaned periodically each day of bird droppings and pollen? Why aren’t seat cushions on wrought iron chairs set out each morning unless it is raining, or bad weather is imminent?
  • Your facility has a special lounge where snacks, coffee, and juice are available to residents and visiting caregivers/advocates, but juice and coffee machines do not seem to be replenished periodically on a regular schedule or fixed quickly if reported as broken.  Why? 

Any LTC facility can be improved if suggestions for improvement are sought from the caregivers/advocates who visit their loved ones—the ones who are intimately acquainted with the services provided and personnel. In addition to possible facility improvement due to evaluative feedback, administrators may also see more referrals from clients who appreciate the fact that their feedback was valued.

*My checklist appeared as a companion resource to my article, “Advising Alzheimer’s Caregivers About Assisted Living” in the January 14 issue of ALTC. Readers can also read that checklist on Dr. Vann’s website,www.allansvann.blogspot.com.


Dr Vann writes a monthly Commentary blog column for the Annals of Long-Term Care journal, one of the brands housed on the Managed Health Care Connect website. He has also written frequently for caregiver magazines, other medical journals, and major newspapers. After his 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, April 25, 2018.  Access online only only at 
https://www.managedhealthcareconnect.com/blog/making-ltc-facilities-more-resident-and-caregiver-friendly

Tuesday, April 24, 2018

Improving Geriatric Emergency Care for Persons With Alzheimer Disease


The opening paragraph of the AGS Viewpoint article1 in the September/October 2017 issue of Annals of Long-Term Care: Clinical Care and Aging® states, “Four national medical societies and nine leading health systems recently announced that they have established a new national Geriatric Emergency Department Collaborative (GEDC) to help improve emergency care for our nation’s older adults.” Toward the end of that article, the American Geriatrics Society (AGS) notes, “The GEDC will continue to add more health centers and partners, contributing to an alliance of national stakeholders who will help promote national adoption of geriatric emergency care best practices.”

This is wonderful news, but I see no mention of the GEDC’s real stakeholders: geriatric patients. To improve hospital emergency department (ED) practices for older adults, the GEDC may want to consult with those who have been in EDs, such as those caring for and speaking for older adults. And with the rapidly increasing number of older adults, who are also living longer with Alzheimer disease (AD) dementia, special attention is needed for this population. The GEDC should consult with current and former caregivers of persons with dementia who have direct experience with ED practices and often serve as patients’ spokespersons. As a former AD caregiver whose late wife was a patient in several EDs, I would suggest the following:

Treat patients with AD as a higher triage priority.
Some of my wife’s ED visits lasted more than 9 hours. She would begin sundowning as time went on and became increasingly confused, anxious, and aggressive. I continued to remind ED personnel that my wife had not eaten or taken her anti-anxiety medication in many hours, but each time I received the same response: “Until her test results are analyzed by the doctors, she may not eat or take any medication.” That would have been fine had she been a high priority, but she was a low priority.

On too many ED visits, my wife sat there for well over an hour just waiting for blood to be drawn then had to wait as long as 2 hours for doctors to analyze the blood work. It was the same with radiographs or other testing—long waits for tests and long waits for results. During all of this time, I served as a human bed restraint to keep my wife on the gurney.

I understand the wisdom of ED policies dictating withholding a patient’s medication and food until testing has been completed. However, withholding anxiety medication and food for 9 hours or more for a patient with AD is, in my opinion, almost medical malpractice. My wife was screaming louder and louder, repeatedly ripping painful IV needles out of her arm, constantly trying to get up, trying to remove her uncomfortable diaper, and refusing to use a bedpan and soiling her clothing. We waited and waited for tests to be ordered or analyzed so that she could be admitted or discharged. Only afterward would she be given medication and food.

Direct all questions to the caregiver.
If a caregiver is present whenever a person with AD comes into the ED, directing medically specific questions to the caregiver rather than the patient is much more helpful. Often, I would tell medical staff that my wife had moderate- or late-stage AD and that I was her caregiver, yet doctors continued to ignore me while wasting valuable time asking my wife questions she could not possibly understand or answer. Asking patients for reliable information is fruitless if they are in the moderate or severe stages of AD. In addition, I was completely familiar with my wife’s medication, her medical history, etc, but too often I was told in no uncertain terms to remain quiet.

Asking my wife what part of her body hurt, or to describe her pain on a 1 to 10 scale, was both ridiculous and fruitless. I told doctors that she did not understand anything they were saying to her, but doctors continued asking her one question after another. Doctors should consider simply placing their hands gently on different parts of the patient’s body; the patient with AD will usually let the doctor know very clearly where it hurts.

Provide dementia training for all doctors, nurses, and medical technicians.
As the number of older adults with dementia grows, supplemental training on dementia care for all ED providers would allow them to better understand how a person with AD experiences the ED. Because of her AD symptoms, my wife was thoroughly confused well before arriving in the ED, but once she got there she became even more confused and also fearful. She was in a totally unfamiliar setting with strangers asking her questions she did not understand and saying things she could not comprehend. She was quickly undressed by a total stranger, even her absorbent underwear were removed, and she was placed in a diaper and paper gown. That bothered her tremendously. Then she was forced to lie down on an uncomfortable gurney, stare at extremely bright overhead lights, listen to very loud and strange machine sounds, and watch strangers walking all around her and poking her all over while needles were painfully placed in her arms. Her chronic back pain made her very uncomfortable on that hard gurney. The combination of all of these environmental factors made her terrified, and she began screaming and crying.

I would be willing to bet that if the GEDC approached such national organizations as the Alzheimer’s Association or the Alzheimer’s Foundation of America, these organizations would be able to design a program and provide knowledgeable staff to bring effective in-service training to medical personnel. A 2010 study on hospitals’ approach to patients with dementia, “Dementia-Friendly Hospitals: Care Not Crisis,”2 supported in part by a grant from the National Institutes of Health, noted that “The greatest unmet need was in-service training to increase the staff’s understanding of dementia and strategies to improve the hospital environment for the patient with dementia.” The study found that staff themselves recognized that they needed to improve their communication skills with patients with dementia.

Current and former AD caregivers can provide valuable insights based on experiences with their loved ones and patients in EDs. I am so pleased to read that the GEDC hopes to improve current practices for AD patients in hospital EDs. To truly gain a better understanding of how current practices may be improved, however, GEDC should ask for suggestions from AD caregivers who have dealt with or are dealing with current ED practices. Current and former AD caregivers can provide valuable insights based on their actual experiences with their loved ones in hospital EDs, offering a unique perspective that cannot be gained from anyone else.


Allan S Vann, EdD
Dementia care advocate
Former spouse caregiver 

References
1.      American Geriatrics Society. Four national medical societies and nine leading health systems collaborate to improve geriatric emergency care. Ann Longterm Care. 2017;25(5):13.
2.      Galvin JE, Kuntemeier B, Al-Hammadi N, Germino J, Murphy-White M, McGillick J. “Dementia-friendly hospitals: care not crisis” an educational program designed to improve the care of the hospitalized patient with dementia. Alzheimer Dis Assoc Disord. 2010;24(4):372-379.

A response from the Geriatric Emergency Department
Collaborative (GEDC)

As leaders and interprofessional advisors for the GEDC, we commend the author for reinforcing one of the hallmarks of geriatrics expertise and of the GEDC: a person-centered approach to care.1,2 The GEDC aspires to improve the process and outcomes of older adult emergency care in addition to the patient and caregiver experiences of care. As the author rightly notes, that includes forging a better sensitivity for older adults and caregivers with unique needs, ensuring that caregivers are included in care planning in the ED and beyond, and building a better system for training health care professionals in best practices for a range of older patients and caregivers, particularly those living with AD.

People living with dementia are among the most vulnerable individuals in emergencies. Their experiences represent a litmus test for creating efficient and compassionate health care systems. If high-quality care can be delivered to people living with dementia and their families during times of acute illness or injury, access to efficient ED care will improve for all populations. Importantly, geriatric emergency medicine had to learn to crawl before walking, which means the specialty needed first to acknowledge that, historically, dementia was usually unrecognized because case findings were rare and screening instruments untested.3,4 Of course, screening is unnecessary when family members inform providers of a person’s dementia diagnosis and baseline cognitive capacity.

As part of the GEDC infrastructure, we established a Geriatric Emergency Medicine Advisory Council earlier this year not only to lay the framework for our plans with initial health system partners, but also to help shape a broader alliance of stakeholders to promote improved emergency care for us all as we age. The voice and perspective of the patient are contributed by stakeholder organizations such as Patient and Family Centered Care Partners, which is active and essential in our work. Caregivers and patients have presented their experiences at GEDC conferences and boot camps through speaker panels, video testimonies, and case discussions. We need this representation to ensure that our best practices reflect the lives (both real and ideal) of older people and their caregivers who benefit from enhanced ED care. As researchers and educators, we value further still what these perspectives provide as we develop training materials and a repository of data for changing clinical practice from the textbook to the bedside. The geriatric ED guidelines developed in 2013 and endorsed by the American College of Emergency Physicians, the American Geriatrics Society, the Emergency Nurses Association, and the Society for Academic Emergency Medicine offer a compelling case in point.5 Among several salient examples, the guidelines provide evidence-based and feasible cognitive screening tools for older adults with protocols to ensure more geriatric-focused evaluations for current and future ED or other care visits.5

Beyond the Geriatric Medicine Advisory Council, we also have worked to catalyze a culture of person-centered care across the GEDC. The institutional, organizational, and individual partners with whom we already work—as well as those we hope to recruit—have demonstrated a unique sensitivity to patient perspective. Many have their own important links to patient advocacy champions, and all have multiple stakeholders, including patients and administrators, who are aware of the high-priority institutional need for improved care of older people. They all now are working to ensure those voices are integrated into their own health system’s GEDC-based plans. Those attributes must remain at the heart of who we are and what we do through the work of the GEDC nationwide.

Proactive health systems such as our GEDC partners know that the future of health care requires bold approaches to (1) valuing older adults as individuals, (2) addressing our unique needs as we age, and (3) providing the best care and support possible. Regardless of the space, place, or context for delivering that care, it can only begin by recognizing patients as people, including and perhaps most especially when those people live with multifaceted conditions such as AD and dementia. The reward for that person-centered approach is a health system that can be responsive to individual needs and priorities, ideally while also helping to improve our care quality and reduce our care costs.6

That promise notwithstanding, the devil remains in the details. The National Academy of Medicine, formerly the Institute of Medicine, estimates a 17-year delay before just 14% of research or guidelines are incorporated into routine bedside care.7 GEDC leaders developed geriatric core competencies for emergency medicine trainees that now appear on credentialing examinations, but research and traditional medical education alone are inadequate strategies to improve care.8,9 The GEDC approach incorporates implementation science to accelerate the uptake of the geriatric ED guidelines by health care systems, an approach that depends upon representative patient and family voices.10,11 AD advocacy groups have already expressed interest in helping to improve emergency care as a broad strategic priority, but linking that enthusiasm institutionally to patient perspective individually is a challenge not limited to the ED. Engaging patients and families as sustained partners in the GEDC with the deployment of geriatric emergency care models remains a core objective—one we continue to explore as we bring the principles of person- and family-centered care into the GEDC design.

There are, indeed, as many questions as answers in this early stage of our work, but coalescing experts (and we count patients and caregivers among that cohort) is an important first step, and one we are heartened to see expressed so thoughtfully by a reader vested in our efforts.



Daniel E Trucil, MA, MPH
Assistant Director of Communication, American Geriatrics Society,
New York, NY

Libby Hoy
Founder, Patient and Family Centered Care Partners,
Long Beach, CA

Kevin Biese, MD, MAT
University of North Carolina at
Chapel Hill School of Medicine,
Chapel Hill, NC

Ula Hwang, MD, MPH
Icahn School of Medicine
at Mount Sinai,
New York, NY

Christopher R Carpenter, MD, MSc
Washington University School of Medicine in St. Louis
St. Louis, MO

References
1.      American Geriatrics Society. Four national medical societies and nine leading health systems collaborate to improve geriatric emergency care. Ann Longterm Care. 2017;25(5):13.
2.      American Geriatrics Society Expert Panel on Person-Centered Care. Person-centered care: a definition and essential elements. J Am Geriatr Soc. 2016;64(1):15-18.
3.      Carpenter CR, Griffey RT, Stark S, Coopersmith CM, Gage BF. Physician and nurse acceptance of technicians to screen for geriatric syndromes in the emergency department. West J Emerg Med. 2011;12(4):489-495.
4.      Carpenter CR, Bassett ER, Fischer GM, Shirshekan J, Galvin JE, Morris JC. Four sensitive screening tools to detect cognitive dysfunction in geriatric emergency department patients: Brief Alzheimer’s Screen, Short Blessed Test, Ottawa 3DY, and the caregiver-completed AD8. Acad Emerg Med. 2011;18(4):374-384.
5.      American College of Emergency Physicians, American Geriatrics Society, Emergency Nurses Association, Society for Academic Emergency Medicine. Geriatric emergency department guidelines. http://www.acep.org/WorkArea/linkit.aspx?LinkIdentifier=id&ItemID=95365. Published 2013. Accessed January 22, 2018.
6.      Hwang U, Shah MN, Han JH, Carpenter CR, Siu AL, Adams JG. Transforming emergency care for older adults. Health Aff (Millwood). 2013;32(12):2116-2121.
7.      Balas EA. From appropriate care to evidence-based medicine. Pediatr Ann. 1998;27(9):581-584.
8.      Hogan TM, Losman ED, Carpenter CR, et al. Development of geriatric competencies for emergency medicine residents using an expert consensus process. Acad Emerg Med. 2010;7(3):316-324.
9.      Neta G, Glasgow RE, Carpenter CR, et al. A framework for enhancing the value of research for dissemination and implementation. Am J Public Health. 2015;105(1):49-57.
10.    Carpenter CR, Pinnock H. StaRI aims to overcome knowledge translation inertia: the Standards for Reporting Implementation Studies guidelines. J Am Geriatr Soc. 2017;65(8):1664-1666.
11.    Hogan TM, Richmond NL, Carpenter CR, et al. Shared decision making to improve the emergency care of older adults: a research agenda. Acad Emerg Med. 2016;23(12):1368-1379.

Published as a Letter to the Editor in Annals of Long-Term Care, March/April, 2018, pp.11-13. Access at www.annalsoflongtermcare.com

Saturday, March 31, 2018

Personal Blog #6 ... It's Time to Move Out of My Comfort Zone ... 3/31/18



It’s been two years since Clare passed away.  Overall, I think I am doing okay.  Not great ... but okay.  I’ve made progress with most parts of my life as an AD widower ... but not with all parts.  On 10/17, in Personal Blog #4, I wrote that “I expect some sadness will always remain within me, and I also expect some tears at times.  But I will no longer experience life with gut-wrenching feelings of pain/guilt and lingering depression due to losing Clare to AD.  No more.  I am now finally moving on with the rest of my life.”

When I wrote those words 6 months ago, I genuinely believed that I was ready to fully move on with the rest of my life.  But I was wrong.  I wasn’t ready. 

It’s not that my life hasn’t been better during these past 6 months.  My life has been much better.  But, despite the absence of lingering depression, I haven’t really moved on yet to add more happiness to my life.  And that is probably because I am continuig to spend most of my time at home ... alone.

I’m out of the house almost every day for bowling leagues, to exercise, to do food shopping, and to occasionally eat out by myself or with friends.  But the desire to leave my house to do things I used to enjoy doing with Clare ... such as going out to see a movie or traveling to explore new places ... seems to be gone. 

I’m a homebody, much as I used to be with Clare.  We enjoyed many nights just holding hands and snuggling at home while watching a TV show or movie.  Staying home is my comfort zone.  But staying home by myself can sometimes be very lonely.  To remove some that loneliness, I’ll need to move out of my comfort zone. 

I wanted to sample an online dating site earlier this year, but I cancelled my subscription within minutes because I felt so uncomfortable.  It seemed so shallow to screen women solely by their looks.  My best friend urged me to reconsider online dating, however, saying that I’d first have the opportunity for email exchanges and phone conversations before meeting in person with anyone I met online. Now that I know this, I think I will feel more comfortable about trying to meet a woman online.

I turned 71 a few months ago and can reasonably expect to live another 10 or 15 years ... maybe more.  That’s a long time to feel lonely.  Clare and I were incredibly lucky to have experienced a very rare relationship ... a deep, passionate love that lasted fifty years ... and Clare will always be with me in my heart.  But Clare also wanted me to find “continued happiness” after she was gone. 

I may not be lucky enough to meet a woman who can provide me with that continued happiness, but I want to try.  However, even if I never meet another woman who can bring me more happiness and remove some loneliness, I now know that I will still be okay.  But I’d like to see if I can be better than okay. 

It’s time to move out of my comfort zone.

Friday, February 16, 2018

The Top Priority Of LTC Supervisors


In my opinion, no responsibility is more important for administrators at any long-term care (LTC) facility than staff supervision. The best and most evidence-based strategies, programs, and interventions may be used at a facility, but if the frontline staff are not following the prescribed procedures and protocols, these endeavors will not succeed, and quality of care will decline. Supervisors and directors need to establish their behavioral expectations and ensure that all staff are implementing policies, rules, and standards properly each day. The only way to guarantee this is happening is to make staff supervision the number one priority.
As a dementia care advocate and a past caregiver for my late wife, Clare, who was diagnosed with Alzheimer disease and eventually went to live in a LTC facility, I have experienced both the highs and lows of LTC staffing and care for dementia patients. I believe that there are generally two main reasons for occasional instances of less-than-outstanding care in otherwise outstanding LTC facilities: lack of sufficient staff training and absence of ongoing supervision and evaluation of staff. I would make the following suggestions to LTC administrators and supervisors in facilities.
Ensure staff are properly trained and receive ongoing training
For excellence to be the norm in any LTC, ongoing staff training and retraining must be provided, and evaluation of staff must be the highest priority. Staff should be periodically reminded of the high standards and expectations set for them and understand that they will be evaluated when it comes to implementing those standards. Resident care plans should be implemented appropriately, consistently, and with genuine care—not just during the shift when the unit supervisor is present but during the other 16 hours of the day as well. 
This may require hiring more supervisory personnel or paying stipends to other certified personnel to shoulder this supervisory responsibility. 
Make sure there are enough supervisors to observe and evaluate personnel
One major problem for LTC facilities is simply the 24/7 work schedule and lack of 24/7 supervisory personnel. When I was a principal, I was able to supervise all staff during my workday—even if that workday extended to 10 or 12 hours. In LTC facilities, dementia patients receive care 24/7, but rarely is there a supervisor present 24/7. There are supervisors present in the facility, but not in the dementia unit itself. One nurse or aide in the dementia unit may be designated as the person “in charge” during the absence of a certified supervisor, but that nurse or aide is not usually expected to supervise or evaluate other unit personnel.
For example, in the very early morning or late evening hours when aides are getting residents washed and dressed, undressed, administering medication, and doing various other activities with them, how can management be sure that their high standards and expectations for care are being met? The short answer to this question is they cannot. They cannot be sure if they are not personally there to supervise staff at such times.
Remain vigilant about how personnel care for dementia residents each day
One aspect of life in a LTC facility is that in any given 24-hour day, a caregiver’s loved one will be seen by many different doctors, nurses, aides, and therapists. After each 8-hour period, there are usually shift changes with different personnel responsible for resident care. Fortunately, my experience as a caregiver/advocate was very positive most of the time. However, even in Clare’s excellent LTC dementia units, there were occasional incidents of insufficient, unsatisfactory, or complete lack of care. Some employees always treated dementia residents lovingly and with a smile; others were sometimes rude or indifferent. What bothered me most, however, was that their supervisors always seemed surprised when I brought matters of unsatisfactory care to their attention.
As a retired public school principal, I am very much aware of how paperwork, meetings, and bureaucratic realities can easily keep administrators chained to their desks for long periods of time. However, LTC administrators must view supervision of staff as their single highest priority and spend the largest share of their time directly supervising employees. During many of my daily visits to see Clare, whether in her ALF or NH, there were times when no supervisor was ever present. Supervisors should try to find more time to supervise staff on a daily basis to determine if any personnel issues need to be addressed.



Dr Vann writes a bi-monthly Commentary blog column for the Annals of Long-Term Care journal, one of the brands housed on the Managed Health Care Connect website. He has also written frequently for caregiver magazines, other medical journals, and major newspapers. After his 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, February 16, 2017.  Access online only

Wednesday, November 29, 2017

Completing Death Certificates For Patients With Alzheimer Disease

According to the latest available mortality data from the Centers for Disease Control and Prevention (CDC), in 2014 there were 93,541 deaths in the United States due to Alzheimers disease (AD), making AD the 6th leading cause of death in this country. However, the CDC also acknowledges that this number of reported deaths due to AD is actually much larger.  “Dementia, including Alzheimer’s disease, has been shown to be underreported in death certificates and therefore the proportion of older people who die from Alzheimer’s may be considerably higher.”
Indeed, a study of 2566 people aged 65 and older, funded by the National Institute on Aging (NIA) in 2014, concluded that deaths attributable to AD far exceed the annual numbers reported by the CDC, “notably 5 to 6 times higher. Our figure suggests that AD may be the third leading cause of death after heart disease and cancer.” Citing more than 20 years of previously reported research, authors of this study also found that, whereas death certificates may correctly list the immediate causes of death on death certificates, “dementia is often omitted as an underlying cause. It is well documented that AD and other forms of dementia are underreported on death certificates.”
Omitting AD as a significant factor contributing to the death of their AD patients, even if unable to ascertain that AD was directly related to the immediate cause of death, is a tremendous disservice for two extremely important reasons.  
First, at the risk of stating the obvious, according to the CDC, “Quality of mortality data is largely dependent on proper and thorough completion of death certificates by certifiers.” So if AD is not mentioned anywhere on death certificates, AD will not be considered as a cause of death in the CDC mortality data. Doctors and nurses should understand that if AD was more often reported as a “significant condition” on death certificates, perhaps our National Institutes of Health (NIH) would make AD a higher research funding priority. 
Actual NIH funding for AD was under $600 million for fiscal years (FYs) 2012-2015, and estimated funding for FY 2016 and 2017 was $910 million. Contrast that with NIH funding for the CDC’s top two leading causes of death: heart disease and cancer. Research funding for heart disease/cardiovascular disease/coronary heart disease topped $3 billion in each of those same 6 years, and cancer received more than $5 billion for FY 2012-2015, with estimated spending for 2016 and 2017 at $5.6 billion and $6.3 billion, respectively. And those totals are in addition to separate NIH categorical funding of $600-$800 million for research just in breast cancer, and additional hundreds of millions of dollars in funding for other identified cancers (pancreatic, lung, etc) in each of those same years.
Imagine how much further along we might be in our understanding of the causes of AD and how we might treat it effectively, or possibly even prevent or cure AD, if annual NIH research funding for AD were at the same levels as annual NIH research funding for heart disease and cancer. Just over the last 6 years alone, that would have meant an additional $15-$22 billion more for AD research.
A second reason for why I feel more doctors and nurses should write AD on death certificates is more personal. After a 10-year struggle with early onset AD, my wife passed away in a nursing home (NH) last year, 1 month before her 70th birthday. When I received a copy of her death certificate, “Alzheimer disease” did not appear anywhere on that form. “Cardiopulmonary arrest” was listed as the immediate cause of death in Section 30, Part I. Section 30, Part II it reads: “Other significant conditions leading to death but not related to cause listed in part I” ... was left blank. That stunned me…and angered me. 
CDC issues “Instructions for Completing the Cause-of-Death Section of the Death Certificate.” Those instructions indicate that “Part II is for reporting all other significant diseases, conditions, or injuries that contributed to death but which did not result in the underlying cause of death given in Part I.”
When I called my wife’s NH doctor to ask why AD was not listed in Part II of her death certificate, he explained that he could not be sure that AD played any role in her death due to her heart history. While I could certainly respect his position, I noted that even with her 15 years of dealing with heart issues before her AD diagnosis, if my wife didn’t have AD, she would have lived a much healthier life style during her last 10 years. For example, she would have continued to exercise daily, eat nutritiously, sleep well, and enjoy a relatively anxiety-free life style—a lifestyle she was no longer able to maintain as her AD worsened.
I also reminded the doctor that 4 months earlier, my wife’s increased anxiety and aggressive behavior caused her to be placed in a psychiatric hospital for 21 days. Since then, she had been taking powerful antipsychotic medication. Heavy-duty atypical antipsychotics come with warnings of complications when taken by people with AD because, as one study reported, “atypical psychotics doubled the risk of sudden death from heart-related causes, most likely by causing disturbances in heart rhythms.” But, after listening to all I had to say, the doctor still did not see any valid reason for adding AD to Part II of the death certificate as a significant factor contributing to her death. We simply agreed to disagree.
When my wife was initially diagnosed with AD, she agreed to donate her brain for research so her death might, in some small way, contribute to an eventual discovery of a cause, or effective treatment, or means of prevention or cure for AD. (Her brain autopsy, in fact, revealed that “the level of amyloid plaque and the tau neurofibrillary tangle pathology can be classified as moderate to severe for the relatively young age of Mrs. Vann.”)  Again, indicating AD as a significant condition would have added to mortality statistics that may possibly lead to increased NIH funding for AD research in the future. This would have been another way in which my wife’s death may have contributed to a better future for others.
The medical profession has years of research supporting the conclusion that AD “contributes to death insidiously over the course of years through a cascade of events.” So the question to ask, it seems to me, is how can doctors and nurses not list AD as a significant condition on death certificates for AD patients?
I think that the 2014 NIA study had it right: “Multiple factors may contribute to death in the elderly, some proximate and some distal. The elimination of any one of them may allow the individual to live longer.”
Until I read convincing research to the contrary, I will continue to support the conclusion of that NIA study that the elimination of AD may have allowed an individual to live longer. In my opinion, this is reason enough for AD to be listed in Part II of death certificates as a significant condition contributing to death, even if not related to the immediate cause of death.



 Dr Vann writes a monthly Commentary blog column for the Annals of Long-Term Care journal, which is one of the brands housed on the Managed Health Care Connect website. He has also written frequently for caregiver magazines, other medical journals, and major newspapers. After his 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, on November 29, 2017.  Access commentary at: https://www.managedhealthcareconnect.com/blog/completing-death-certificates-patients-alzheimer-disease