Personal Blog # 28 … Lecanemab … Promising New Effective AD Medication, or Just another Disappointment? … 10/4/22

 According to an article in The Washington Post on 9/27/22, “An experimental Alzheimer’s drug (Lecanemab) slowed cognitive and functional decline by 27 percent in a closely watched clinical trial.  Japanese drugmaker Eisai and its American partner, Biogen, said the slowing of deterioration, compared with a placebo, was “highly statistically significant.”

The Phase 3 clinical trial, called Clarity AD, had1795 participants with mild cognitive impairment caused by Alzheimer’s or early-stage Alzheimer’s and “demonstrated that lecanemab reduces abnormal clumps of beta amyloid, a hallmark of Alzheimer’s.”  The article went on to say that “Eisai, which is taking the lead in developing the drug and working with regulatory authorities, will present the full results of the study in late November at an Alzheimer’s conference in San Francisco. The results also will be published in a medical journal.”

 

As of today, there has been neither peer review nor publication of the results reported.

 

“Officials said the clinical trial participants were tested in several areas to gauge the pace of their decline, including memory, orientation and problem solving.  Starting at six months, the companies said, the group that received the treatment did better than the placebo group. The treatment was administered intravenously twice a month.

The lecanemab group experienced side effects including brain swelling and bleeding — complications of anti-amyloid therapies — but the rates were within expectations, the companies said in the release.” 

 

That range of serious adverse side effects, not reported in this Post article but available on the Biogen website, noted that 17% of the patients taking this medication suffered cerebral micro and macro hemorrhages and superficial siderosis compared to 8.7% in the placebo group.  (See posting on Biogen website entitled, “Lecanemab Confirmatory Phase 3 Clarity AD Study Met Primary Endpoint …” 9/27/22.)

 

Until this clinical trial data undergoes peer review, we can only hope that despite almost double the rate of serious negative outcomes, this medication may prove to be helpful for some patients with MCI or those in early stages of AD.  Sadly, too often in the past there have been early claims made about favorable outcomes with proposed new AD medication that did not stand up to scientific scrutiny.  Also, some studies have yielded “statistically significant” results on tests that did not really make much difference in the “real world” lives of those with AD … test results that were statistically significant but not clinically significant.

 

As a former 24/7 AD spouse caregiver, I often think of “statistically significant” AD test results in this way:  Suppose one has 2000 equally healthy and robust house plants, each having 100 healthy leaves, with each plant expected to live for one full year before losing all of its healthy leaves.  A clinical trial is conducted to test whether or not a chemical added to “enrich” the water is better than just plain water for these plants.  For the next year, 1000 plants receive regular water and 1000 plants receive the “enriched” water.  After one year, the plants receiving enriched water have 96 or more dead leaves, while the plants receiving only regular water have 98 or more dead leaves.  If that study then concluded that the difference in dead leaves is statistically significant, those results would be totally meaningless to me.  The bottom line is one would have two dead plants!  The plant with “only” 96 dead leaves would not look appreciably healthier than the plant with 98 dead leaves. 

 

In other words, there is “statistical” significance and there is “clinical” difference.  I am hoping for the day when a new AD medication will prove clinically effective in the “real world,” meaning that there will be a positive consequential difference in the lives of those with AD … a much longer time before symptoms develop or worsen, or complete disappearance of some symptoms, let alone cure this horrible disease.

 

Until the clinical trial data on lecanemab is subject to peer review and critically examined to demonstrate that there are meaningful positive differences in the lives of clinical trial participants who took this medication, I won’t let myself get too excited.  Not just yet.  I have been disappointed too many times.  I have seen too many dead plants.

 

 

 

 

PB #27 ... Articles About GEAR Program Now Available to Everyone ... 8/31/22

Readers familiar with this site will note that I have already posted several Personal Blog columns about the GEAR program … Blogs # 18, 24, and 26 … a federally funded program designed to improve care for people with Alzheimer’s disease (AD) and other forms of dementia in hospital Emergency Departments (EDs).  Published manuscripts about the research reviews conducted by the GEAR task force in four focus areas … communication, detection, best practices, and transitions … are now available to read.  These articles, as well as additional information about this project, may be accessed in the “Manuscripts and Publications” section of the main GEAR website at https://gearnetwork.org.

In the words of Dr. Chris Carpenter, one of the leaders of this project, “We would like to generate some media interest in this effort so that persons living with dementia and their care partners are aware of this work.  The more folks know the more they can pressure their Congressional leaders to ensure funding for this research. These citizens can also pressure their local emergency departments to begin adapting for more dementia-friendly care.”

If any reader has access to major mass media, it would be wonderful to alert such media to the availability of these manuscripts to generate more interest in improving emergency care for dementia patients and increase general awareness of what must be done.  Following are the verbatim “Conclusions and Implications” sections of the manuscripts dealing with our four areas of focus.  It is hoped that these articles will lead to future research to develop the most effective strategies in each area and eventually lead to substantial improvement in how dementia patients are treated in hospital EDs.

  

Communication … Conclusions and Implications

This scoping review identified sparse published research to guide evidence-based communication strategies in the ED for PLWD and their care partners. Although general themes appear to emerge around rushed communication and inadequate engagement of care partners, these findings are neither quantified nor directly linked to ineffective communication. Strategies to improve ED communication for PLWD do not exist, although educational interventions outside the ED suggest limited effectiveness. GEAR 2.0-ADC stakeholders prioritized the identification of barriers and facilitators to effective ED communication for PLWD.

 

Detection … Conclusion and Implications

We report the results of 2 systematic scoping reviews evaluating diagnostic accuracy and feasibility to detect cognitive impairment and dementia in the ED setting. The GEAR 2.0 Advancing Dementia Care task force, using these results, developed consensus research priorities practice gaps to advance the detection of cognitive impairment and dementia in the ED setting. They include the need for more effective and efficient approaches to recognize persons at risk for cognitive impairment and dementia. These approaches should balance the importance of equitable screening and the goal and the consequences identifying cognitive impairment. These research priorities will be the basis of future GEAR 2.0 research funding opportunities.

 

Best Practices … Conclusions and Implications

The results of this scoping review reveal a wide range of components of both ED care practices and ED care needs for PLWDs. Although many structural and process interventions show positive results, the lack of depth and reproducible results prevent specific recommendations on best practices in ED care for PLWDs. Future research should work to identify improvements in ED care for PLWDs, address gaps in training, identify priority outcomes, address community and identity-based factors, and incorporate economic viability and implementation science

Transitions … Conclusions and Implications

This systematic scoping review found few ED-to-community care transition interventions targeting cognitively impaired older adults and their care partners. Further, there was little data identifying care transition outcomes of importance to these groups. Personalizing care transitions for these ED patients and measuring what matters most during ED-to-community care transitions were identified as the highest priority areas for future ED research involving cognitively impaired older adults and their care partners. As such, research funding agencies, advocacy groups, and researchers should focus their resources and efforts on these domains, thereby developing the science to improve the health of this vulnerable population.

 

Once again, readers are urged to access https://gearnetwork.org to read the entire articles and learn more about this project.

Alzheimer Disease Support Groups

 

JUNE 2022 PRACTICAL NEUROLOGY 45

 Alzheimer Disease Support Groups

A care partner plea for physicians to inform patients and care partners about Alzheimer disease support groups.

By Allan S. Vann

 

 

 

   I am a retired public school principal. I started observing my late wife’s symptoms of what would eventually be diagnosed as early or young-onset Alzheimer disease (AD) 15 years ago. There were many frustrations, especially about misdiagnoses for several years. As my wife was treated first for stress, then anxiety, and then depression, I continued seeing her AD symptoms worsen. Another frustration was that we were not informed about available support groups, which led me to become an advo­cate and share my frustrations in written publications.

   In my first article, published in the American Journal of Alzheimer’s Disease and Other Dementias in 2010, I noted the need for doctors to be more helpful in finding sup­port groups for their patients, “Doctors as well as local/ national AD organizations should also be working together to provide patients with ready access to support groups as patients progress through the stages of this fatal dis­ease—and helping to better meet the needs of those who are diagnosed at a young age and/or are in the very early stages of the disease.”¹

 

My Support Group Experience

   At the time of my wife’s diagnosis, I could not find a sin­gle support group on Long Island specifically designed for those with early onset AD. I did find a group for people in early-to-moderate stages of AD, and my wife was accepted into that group. The Long Island Alzheimer’s and Dementia Center also had a support group for spouses of people with AD, but I didn’t think that I needed a support group at the time. I was so focused on my wife’s needs that I hadn’t yet begun to understand what my needs were, or would be, as her disease progressed.

  My wife, however, insisted that she would only join her support group if I attended at least 1 meeting of the spouse’s support group. So, as she went to meet with her group, I went to what I thought would be my only meeting with the spouse’s support group. To my surprise, within minutes, I realized that group was where I needed to be. My wife’s insistence may have been her final gift to me because I don’t know how I would have coped during her illness without assistance from that spouse’s group. I was too naive back then to realize that support groups for AD care partners may be even more important than support groups for those with AD.

  I learned more important practical and helpful informa­tion from members of the support group than from all the doctors we met, all the books I read, and all the internet searches I did. They helped me become a better care part­ner and learn how to deal with my own needs as my wife’s disease progressed.

  Importantly, it was just blind luck that led me to my essential support group because the neurologist caring for my wife never mentioned how support groups might be helpful for either of us. Shortly after I joined the spouse’s support group, I asked everyone how they had learned about our group; out of 15 of us, only 1 had learned about our support group from a neurologist.

  In another article I wrote that was published in 2011, I noted, “Some cities and some states have local and state associations that provide a multitude of support groups for both the patients, their spouses/caregivers and for non-spouse caregivers, often through branches of the Alzheimer’s Association, the Alzheimer’s Foundation, or hospitals. If there are such groups near where your patient and spouse live, please refer them to those groups or organizations. If not, please consider speaking with leaders of your state’s associations to have such groups formed. Also, become aware of the excellent online support groups available that you can recommend.”² Some resources for finding support groups are provided in the Box; you can use the QR code there to access a stand-alone version of this that you can print and share with your patients and their care partners.

Increase in Support Groups, But Not Neurology Referrals

Within 2 years, more support groups were forming on Long Island for people with various stages of AD and for their care partners, and more online groups were becom­ing available. Neurologists, however, were still not rou­tinely discussing the existence and importance of support groups with their patients with AD or those patients’ care partners. In a 2013 article published in the Journal of the American Geriatrics Society, I wrote, “Doctors working with someone who is caring for a spouse, parent, grandparent, friend, or other family member with Alzheimer’s disease should urge them to join a support group. Let them know that they can learn many practical suggestions from those who have ‘been there’ and how important it is to have a place where they can talk openly about their feelings, fears, and concerns while receiving emotional support from oth­ers ‘who get it.’ Caregivers should not have to ‘go it alone’ when a loved one is declining from an incurable disease, but unless doctors inform them of the existence and value of support groups, many who would find emotional and practical help there will lose out on this wonderful source of information and comfort.”³

   The increasing number of AD support groups on Long Island and elsewhere, both for people with AD and their care partners, is a sign of progress. However, neurologists are still not routinely referring patients and care partners to such groups.

   For the past 2 years I have been a member of the Geriatric Emergency Care Applied Research Network 2.0 (GEAR 2.0) Task Force. GEAR is “a National Institutes of Health funded program working to advance the science supporting emer­gency care for people with dementia.”⁴

  During many zoom meetings and online exchanges, care partners and people in early stages of AD have told me that their neurologists have not discussed support groups with them.

  I have also had many interactions with AD care partners and people with early onset AD as a member of several AD research panels sponsored by the Center for Information and Study on Clinical Research Participation (CISCRP).⁵

 Through this work, I have again been told many times by people with AD and care partners that neurologists are not routinely discussing the importance of support groups, let alone where to find such groups.

BOX.   How To Find Alzheimer Disease and Other Dementia Support Groups

Call the Alzheimer Association 24/7 Helpline 1-800-272-3900 Provides information about in-person and virtual support groups in your area

Visit the Alzheimer Association Online Community alzconnected.org An online community with multiple message boards where patients and caregivers can ask questions and find answers and support from peers

Community Resource Finder communityresourcefinder.org from the American Association of Retired Persons and the Alzheimer Association Allows individuals to search for support groups and other resources by zip code

Lewy Body Dementia Association lbda.org/local-support-groups Offers interactive support group finder for both patients and care partners

The Association for Frontotemporal Degeneration Helpline 1-866-507-7222 Provides information about in-person and virtual support groups in your area

The Association for Frontotemporal Degeneration Support Group Finder theaftd.org/living-with-ftd/aftd-support-groups/ Offers interactive support group finder for both patients and care partners

                                                                                          (Continued on page 55) 

(Continued from page 46)

 Research Supports Referral to Support Groups

   Last summer, citing a 2015 study reported in the International Journal of Geriatric Psychiatry, medical writer Sherry Christiansen wrote: “Support group members often give each other tips on how to manage the various chal­lenges that arise. Not only can Alzheimer’s support groups provide information, but studies have shown that they can help reduce depression and improve the quality of life and self-esteem for people with AD who have mild cognitive impairment (early Alzheimer’s), as well as those in the later stages of the disease (ie, Alzheimer’s dementia).”^6,7

   According to the online “Caregiver’s Corner” section of the Fisher Center at Rockefeller University website, “Research shows that when family members and caregivers are educated about the disease and involved in the per­son’s care, the person who has Alzheimer’s benefits. When the family and caregiver of a person with Alzheimer’s understand the disease and learn how to communicate and interact with the person in ways appropriate to the disease stage, they are better able to reduce behavioral problems and improve the quality of life for all involved.”⁸

Conclusion

   Support groups for patients with AD and their care partners can improve their quality of life, but many neu­rologists are not referring to support groups. This leaves patients and care partners without an essential part of treatment. I urge all neurologists to find out about support groups in their area and inform their patients not only of these groups’ existence, but also of how such groups can be helpful to their treatment. To do otherwise is to pro­vide less than the best care.

 

1. Vann A. Alzheimer’s and baby boomers. Am J Alzheimers Dis Other Demen. 2010;25(6):477-478.

2. Vann AS. 10 things you should do when the diagnosis is Alzheimer’s. Am J Alzheimers Dis Other Demen. 2011;26(2):93-96.

3. Vann AS. Caregiver support groups. J Am Geriatr Soc. 2013;61(8):1413.

4. Geriatric Emergency Care applied Research website. https://gearnetwork.org/about-gear-2/. Accessed May 19, 2022.

5. Center for Information and Study on Clinical Research Participation website. http://www.ciscrp.org. Accessed May 19, 2022.

6. Christiansen S. Alzheimer’s disease support groups. Verywell Health. https://www.verywellhealth.com/best-alzheim­ers-disease-support-groups-4844290 Updated on August 31, 2021. Accessed May 19, 2022.

7. Leung P, Orrell M, Orgeta V. Social support group interventions in people with dementia and mild cognitive impair­ment: a systematic review of the literature. Int J Geriatr Psychiatry. 2015;30(1):1-9.

8. The Fisher Center for Alzheimer’s Research Foundation. Caregiver’s Corner. https://www.alzinfo.org/treatment-care/ caregivers-corner/. Published 2022. Accessed May 20, 2022.

 

 

Allan S. Vann, EdD

Care Partner & Patient Advocate

Commack, NY

allansvann.blogspot.com

 

Disclosures

ASV reports no disclosures

Published in Practical Neurology, June 1922, Vol. 21, No. 5, beginning on p. 45.   Access at: https://practicalneurology.com/articles/2022-june/alzheimer-disease-support-groups

 (Unable to reproduce the QR download code for box ... sorry!!)

PB # 26 … Update on GEAR 2.0 Federal Grant Project re Care of Dementia Patients in Hospital Emergency Departments … 3/22/22

This project, described in PB #18, is well underway.  The mission of the Geriatric Emergency care Applied Research (GEAR) network is to improve the emergency care of older adults and those with dementia and other cognitive impairments.” ¹

Meeting frequently during the past 2 years via zoom, GEAR 2.0 participants have worked in 4 domain groups to identify priorities in Emergency Department (ED) settings. These 4 domain groups are:

• Best practices and the delivery of emergency care for persons with dementia in the ED setting.
• Care transitions for persons with dementia in the ED setting.
• Communication and shared decision making for persons with dementia in the ED setting.
• Detection and recognition of dementia and cognitive impairment in the ED setting. ²

Each domain group identified priorities that led to key research questions for further investigation.  An example of domain questions deemed most important to investigate further are …

In the Best Practices domain …What components of emergency department care improve patient-centered outcomes for persons with dementia? 

In the Transitions domain … What measures of quality ED discharge transitions are important to varying groups of ED patients with impaired cognition and their care partners?     

In the Communication domain … How does “communication and decision making” differ for persons with dementia compared to persons without dementia?

In the Detection domain … How can the ED best identify cognitive impairment?  Are there differences by race or ethnicity?

The current phase of this project involves awarding competitive grants supporting research to find answers to these and our other priority questions that will lead to improved care of people with dementia in hospital Emergency Department settings. ³

Four articles, one coordinated by the chair of each domain group, are now undergoing a peer reviewed medical journal submission process to “get the word out,” so to speak, on these important questions.  We want to encourage the specific research necessary to help find answers to these important questions so the ED experience can be a more effective and more positive experience for those with dementia.

Readers who wish to become more familiar with the aims and objectives of this NIH/NIA funded GEAR grant project, to eventually read these articles when published, or to learn more about the grant application process, should consult the gear network website. 

1.  Access at gearnetwork.org

2.  Access at https://gearnetwork.org/2021/07/21/cognitive-impairment-dementia/

3.  Access at https://gearnetwork.org/about-gear-2/

Another Voice: NFL should do its part to raise Alzheimer’s awareness

 

With a new football season underway, NFL broadcasters and advertisers are expected to reach a very wide TV audience. Of the 50 most watched TV broadcasts last year, 33 were NFL games.

In October, as it has done each year since 2009, the NFL is promoting cancer awareness with its "Crucial Catch" campaign during its broadcasts. Players in past seasons wore special uniforms to show support for those diagnosed with cancer and to stimulate greater disease awareness. In the past 12 years, the NFL has raised more than $18.5 million for the American Cancer Society, and I applaud the NFL for taking this leadership role.

Another leadership role well suited for the NFL would be to have players wearing purple on their uniforms in November to raise awareness of Alzheimer’s disease and other forms of dementia. Alzheimer’s and other forms of dementia kill more people than breast cancer and prostate cancer combined.

According to a study reported earlier this year by researchers at Penn State University, “a single head injury could lead to dementia later in life. This risk further increases as the number of head injuries sustained by an individual increases.” 

In 2014, a successful lawsuit filed by retired players against the NFL concluded that “former players between 50 and 59 years old develop Alzheimer's disease and dementia at rates 14 to 23 times higher than the general population of the same age … and … rates for players between 60-64 are as much as 35 times the rate of the general population.”

The NFL knows it has a problem and has taken measures to try to prevent and lessen the effects of concussions. Unfortunately, even though concussions were reduced about 5% in 2020, Jeff Miller, NFL executive vice president, had to bluntly admit, “This is progress. This is not success.”

In 1985, President Ronald Reagan proclaimed November as National Alzheimer’s Disease Month, asking people in the United States “to observe that month with appropriate observances and activities.” That year, 2 million Americans had Alzheimer’s.

Today more than 6 million Americans have Alzheimer’s, the only disease among the top 10 causes of death in this country with no effective means of prevention, treatment, or cure.

With players wearing purple on their uniforms, NFL broadcasters and advertisers can educate people each November about Alzheimer’s disease and other forms of dementia, while also helping to raise money for research.

NFL Commissioner Roger Goodell once cited a principled stand taken by his father, former U.S. Sen. Charles Goodell, when the senator explained why he spoke up in opposition to the Vietnam War. Charles Goodell said, “It’s not easy to know what is right, but when you do know what is right, you have to have the courage to do it.”

Commissioner Goodell surely knows that it is right for the NFL to help promote Alzheimer’s awareness and research each November. The only question is, does he have his father’s courage to do what is right?

Allan S. Vann is a freelance writer and former caregiver to a spouse with Alzheimer’s.

Published in The Buffalo News on 10/16/21.  Access at: https://buffalonews.com/opinion/another-voice-nfl-should-do-its-part-to-raise-alzheimer-s-awareness/article_22c1edd6-2cf1-11ec-b2c0-eb7a546cd015.html

Personal Blog #25 … Tips from Michael Ellenbogen … a Person Living With Dementia and fellow member of the GEAR 2.0 Task Force ... 10/2/21

This Personal Blog (PB) is very different from previous PBs I have posted on this site.  I have already written PBs about GEAR 2.0, the NIH/NIA grant program seeking to improve hospital emergency room treatment for people with Alzheimer’s disease (AD) and other forms of dementia.  One of my fellow task force members is Michael Ellenbogen, a person living with dementia (PLWD).  When Michael was 49, he was diagnosed with early-stage AD … but that was only after Michael spent 10 years trying to receive a diagnosis for what was happening to him.  Doctors now believe he may have Frontotemporal Dementia (FTD) instead of young or early onset AD.  Regardless, Michael is now 63 and he continues to share his experiences to help improve life for those with all forms of dementia.  

I asked Michael to write about some of the things he thought were most important to share with both PLWDs and their caregivers so I could post these items in a Personal Blog.  I selected 4 items from Michael’s list to share in this column.  I will print Michael’s words in bold print, followed by my perspective as a former AD spouse caregiver.

1.  This disease is far worse than you can imagine. Just imagine that you are going in reverse from an adult to a child but you still have the knowledge of how things should be done but you are no longer capable of doing it.  For PLWD who are aware of what is happening to them, it is so very frustrating because they know that they are screwing up but can’t do much about it.   From my caregiver’s perspective, AD is even much worse than this description.  As this disease progresses from early to moderate to advanced stages and the PLWD continues “going in reverse,” the PLWD will also lose the knowledge of how things are done, not just the capability of how to do things.  Caregivers of those who are aware of their decline … not all PLWD are aware of how much they have declined … must also prepare for increasing frustration knowing there is nothing they can do to prevent this decline of their loved ones.  Both the PLWD and the caregiver must prepare to accept this reality.

2. Don’t argue about things that are not true or are remembered incorrectly, and sundowning makes it even more difficult.  Just trying to pay attention takes so much energy as the day progresses from morning to afternoon to night.  Just thinking about what to do takes up so much energy, I feel burnt out.  As my wife progressed from early to moderate stages of AD, I learned about something called “confabulation.”  Confabulation is a symptom of memory disorders often experienced by people suffering from dementia, traumatic brain injury, and a variety of other conditions. My wife would often “remember” events or activities that had never actually happened.  Even if presented with evidence to the contrary, she could not be convinced that her memory was faulty.  But she wasn’t lying to me when she confabulated … she genuinely believed that what she said was true.  Caregivers of PLWD should take Michael’s words to heart … don’t let yourself become involved in an argument you will not win, and be aware of the effects of sundowning.

3.  If you are going to have an angry face or tone, expect it 10 times worse from your PLWD.  I can vouch from personal experience that when I let my frustrations get the better of me, not only did I forget that my wife’s frustrations and feelings of anger were much greater than mine, but I also forgot how my reactions were affecting her.  Caregivers must not allow their frustrations or anger to show in their voice, facial expressions, or actions.  As with all situations when dealing with a PLWD, caregivers must always try to remember that their actions and reactions will have a great effect on their loved one’s actions and reactions.  So, in the words of one of my former teachers who posted only 2 words as her classroom rule each year: Be nice!

4.  This disease is like a curvy road and you need to be prepared for what is ahead to stay on track, and it will not be easy.  When I attended my first support group with fellow spouse caregivers, I was told that if you know one person with AD, then you know one person with AD.  All PLWD will eventually go through “stages” as this disease worsens.  However, some people advance rapidly through stages, some advance rapidly only through some stages, some advance slowly through all stages, and some advance slowly only through some stages.  Some go back and forth between stages because not all PLWD advance through stages in a completely linear fashion.  Some lose specific abilities forever as they advance to the next stage, while some regain those abilities for a limited period of time, only to then lose them forever.  And not every PLWD experiences the characteristics of a particular stage in the same way. 

As Michael said, “this disease is like a curvy road.”  Progression from early to moderate to severe stages of AD is a bumpy one, but you can learn about what lies ahead to avoid being surprised and to allow yourself to “stay on track.”  No one can predict exactly when or how quickly or slowly one will progress through stages of any form of dementia.  However, knowing what is coming … even if unable to know exactly when … will provide you time to plan for the future.

 

Personal Blog #24 … Personal Statement to GEAR 2.0 Task Force ... 8/16/21

The GEAR project … Geriatric Emergency care Applied Research … is winding down its year of having task force domain groups focus on four major areas affecting people with dementia or cognitive impairment in hospital Emergency Departments (EDs).  Groups focused on the best way to detect cognitive impairment/dementia in patients in the ED, the best practices to treat such patients, best ways to communicate with such patients and how to involve care partners in shared decision making, and best ways to facilitate transitions between the ED and home or to other facilities.  Groups worked on preparing questions to research in each area, prioritized questions, and conducted reviews of the literature.  Further discussion and voting will take place at upcoming “consensus conferences in September.  After these top priorities are selected, pilot grants will then be issued to, hopefully, provide some answers.  As stated on their new website, “The mission of the Geriatric Emergency care Applied Research (GEAR) network is to improve the emergency care of older adults and those with dementia and other cognitive impairments.  GEAR looks to identify research gaps in geriatric care and support research and evaluation of these areas”  https://gearnetwork.org/

As a former caregiver who participated in each of the four domain groups … zoom meetings for each domain were held monthly for the past year … I was given the opportunity to prepare a brief personal statement to be shared with participants at the consensus meetings in September.  I viewed this as an opportunity to share what I thought should be the two highest priorities of our group … the two areas needing most change to try to make ED experiences more effective for people with dementia.  Based upon my own experiences with my late wife in EDs, and the experiences of other caregivers who provided me feedback, here is what I prepared for that video statement. 

Should readers have any comments regarding this statement, or comments regarding any of my posted articles and personal blogs, please forward those comments to me at acvann@optonline.net.

Task Force Statement … Allan S. Vann

I am a former Alzheimer’s spouse caregiver.  When in moderate to severe stages, my late wife was brought to a hospital ED on several occasions.  The one common denominator of these ED visits was poor treatment.  I attribute that poor treatment to two overriding reasons … lack of training by ED staff, and the refusal of ED staff to see her as a higher triage priority.

One should expect better outcomes if ED staff are properly trained to diagnose and treat people with dementia, especially those in advanced stages.  Properly trained staff would know, for example, to use non-verbal communication and diagnostic techniques if the dementia patient is unable to understand questions or respond accurately.  If brought to the ED in pain after a fall, for example, it is futile to ask where the pain is or ask on a scale of 1-10 how much it hurts.  A knowledgeable physician might slowly apply pressure to different parts of the patient’s body to note reactions that would often indicate where and how severe the pain is.  Well-trained staff would also understand the value of asking caregivers, if present, for helpful information.

If dementia patients were a higher triage priority, issues in EDs that can unnecessarily cause increased discomfort and pain, let alone complicate diagnosis and treatment, could be lessened dramatically.  Issues such as increased anxiety, sundowning, restlessness, disorientation, and heightened confusion due to long waits for examination and diagnostic testing followed by longer waits for results of such testing, IV needles in arms for many hours, sensory overload due to bright overhead lighting, sounds of machines beeping and strangers and staff talking, lying on uncomfortable gurneys, effects of delays in taking daily medications which may specifically help lessen anxiety, increasing fatigue due to not eating until all testing is complete, and the list  goes on … all of these issues can be lessened to a great extent if people with dementia were a higher triage priority.  Inattention to these matters can also mask or exacerbate the very issues that led to the ED visit, or even cause new health issues, so ED staff must also recognize that it is extremely important to reach decisions to admit or discharge as quickly as possible.  

Many other spouse caregivers have shared similar ED experiences with me.  ED staff responsible for treating people with dementia need more and better education and training, and dementia patients must be given a higher triage priority.