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