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Help us shape the 2020 Dementia Care & Caregiving Summit

Elena Fazio
Elena FAZIO,
Health Scientist Administrator,
Division of Behavioral and Social Research (DBSR)
.
Courtney Wallin
Courtney WALLIN,
Office of the Director (OD).

Millions of Americans and their caregivers are living with Alzheimer’s disease and related dementias now, and that number will continue to grow. In addition to seeking effective treatments, we must further develop the evidence base about what works to improve care, services, and supports. We need your ideas and questions to set the agenda for this high-priority area of research.

If you’re interested in being part of the solution, you can help shape the discussion at the upcoming Second National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. While the Summit isn’t until next year (March 24-25, to be exact), we need to hear from you by June 28 to help craft the conversation around future caregiving research priorities!

A bit of background

The 2020 Summit follows the groundbreaking first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers (also known as the Dementia Care & Caregiving Summit), held in conjunction with the U.S. Department of Health and Human Services in October 2017. The 2017 Dementia Care & Caregiving Summit Report summarizes this Summit and the numerous research recommendations it generated. Several of these recommendations were directed at NIA, and we have been working since 2017 to implement them. The 2020 Dementia Care & Caregiving Summit aims to expand on what was learned from the previous summit and spark new and innovative ideas.

We want to hear from YOU!

We are early in the planning process for the 2020 Summit, and we’re eager to receive input from all stakeholders about topics of interest. We’ve even issued a Request for Information to solicit your ideas.

And when we say all stakeholders, we mean all. We’d like to hear from people living with dementia, caregivers, scientists, academic institutions, the private sector, health professionals, professional societies, advocacy groups, communities, and other interested members of the public. If you’d like to see a specific topic considered, please email us or you can react to the primary goals that have been outlined for the meeting, which include:

  • Sharing findings from dementia caregiving and dementia care intervention research
  • Sharing research findings on the improved characterization of persons with dementia, caregivers, and health and social service systems
  • Conveying progress made since the 2017 Dementia Care Summit
  • Providing opportunities for stakeholders to discuss dementia care and caregiving research needs and the experience of seeking care
  • Addressing participation of persons with dementia and caregivers in research
  • Addressing how scientists can improve intervention research
  • Addressing the experience of dementia across and between care settings
  • Highlighting critical future scientific areas of inquiry, including infrastructure and data needs

Whether the disease has personally touched you or your family, you are a researcher in this field, or you are newly interested in this topic, we value your ideas. We encourage you to comment below or email us your ideas. All input will be considered. We will accept responses until June 28, 2019, so act now and submit your ideas as soon as possible!

Attending the event

This event will be held March 24-25, 2020, on the NIH campus in Bethesda, MD. It is open to the public, and all interested parties are welcome to attend. Registration is expected to open in late 2019. For now, we encourage you to subscribe to the blog, and keep checking the NIA website for more information.

Comments

Submitted by Poorna Kushalnagar on June 12, 2019

There needs to be a discussion on making research findings accessible for caregivers with sensory disabilities (e.g. making print larger; placing text on platforms that can be read by screen reading technology; making information available in American Sign Language).

Submitted by Shirley Crow on June 12, 2019

My husband was just admitted to the hospital (from assisted living) due to seizures. The hospital staff performed 5 tests to determine the source of the seizures - 2 CT scans, EEG and 2 MRI's The Neurologist(s) on call were not familiar with Alzheimer's causing seizures - particularly prevalent in young onset patients (if you read the literature). Even his memory care physician was not aware that young onset has a higher incidence of seizures as the disease progresses to it's final stages. Basic Alzheimer's education is needed for all providers who are likely to encounter such a patient - General practitioners, neurologists, other caregivers. A primer on what to expect in young vs. older Alzheimer's patients that is mandatory for all care givers would be helpful. There are too many professionals out there providing care who are unfamiliar with the typical medical aspects of this disease, particularly when it strikes the younger age group. My husband has a PhD from Harvard. No amount of education, ongoing reading, puzzles, etc. would have changed the outcome. Dispelling myths around the disease would be helpful. A dementia specialist actually told me that in the highly educated they are able to compensate for quite a while before the disease shows itself as a precipitous decline. It would also be helpful to educate individuals on hospice in the assisted living setting vs hospice at home vs. what happens when a hospice patient is hospitalized (hospice must be stopped and restarted around the hospitalization) otherwise the hospitalization is not paid for. So perhaps a primer on what happens as patients progress, what help is available through Medicare, etc. When I see the web pages about Alzheimer's they all more or less say the same thing, but some of the nuances of this disease are missing, because people just don't know enough about it. And by "people" I mean health care providers who should know. I had to instruct my husband's general practitioner on how to give the Mini Mental Exam and what drugs to try. Everyone should know this already.

Submitted by Leonard Hayflick on June 12, 2019

Because it is almost universally believed that aging is the greatest risk factor for AD why is the NIA not meaningfully supporting research on the fundamental biology of aging? Research on age-associated diseases and longevity determinants is not research on the biology of aging.

L. Hayflick
Founding Member of the Council of the NIA
Founding Chair of the Executive Committee of the Council of the NIA

Submitted by Jean Neils-Strunjas on June 12, 2019

There is agreement that the most effective interventions for cognition occur when a person is diagnosed with MCI as opposed to more advanced dementia. What types of interventions have proven effective and should be promoted at the community level?

Submitted by Thomas Murcott on June 13, 2019

Often primary care providers are the first line of defense the quest for better brain health. The numerous studies indicate that regular physical activity, management of cardiovascular risk factors (especially diabetes, obesity, smoking, and hypertension), healthy diet, and lifelong learning and cognitive training reduce the risk of cognitive decline and dementia. It is critical to get the tools necessary to effectively diagnose into the hands of primary care physicians so that they can determine MCI/AD biomarkers early, years before the patient is symptomatic -- at which point the impending cognitive decline cannot be as effectively addressed. An age 55+ physical at the doctor's office should check the brain, not just the heart, lungs, ENT, etc. Proactive brain health programs should be put in place to educate primary care providers and inculcate a standardized approach to early detection and better brain health programming.
Tom Murcott
Evoke Neuroscience

Submitted by June McMahon on June 13, 2019

I am the caregiver for my mother who has dementia. We are both deaf and there is a need to caregivers and programs for deaf people who have dementia.

Submitted by Karen Wall on June 13, 2019

I recently retired from the VA where I was the Dementia Care Coordinator in a large VA Community Living Center. I also have a background in mental health, and the two specialties were are perfect fit for supporting the veteran, their family, and our staff caring for them. My passion is working with older adults living with dementia and providing support and education to their families/caregivers.

The first topic close to my teaching heart is the biology and neuroanatomy of dementia. Oftentimes, there is an assumption that family members/caregivers are either not interested in the deep science or are not able to understand it. What I have discovered is that they are not only very much interested, but they are also quite capable of grasping what they are being told about their loved one's brain and changes in structure and function with the disease progression.

The second topic close to my heart is the use of technology in dementia care, specifically, robotic pets. Over the past 3 years, I had introduced the Joy For All Companion Cat and Dog on our dementia units as a non-pharmacologic intervention for behavior management and mood support. Technology is here and we need to embrace it even in our care of our older adults.

On the other side of the table is my love for teaching caregiving staff how to be resilient in their work with this very difficult disease. The work and emotions involved in doing this work can cause burnout quickly in caregivers, and I aim to support them by teaching them ways to rekindle the "zest" in their work.

Submitted by Tahmina on June 14, 2019

Access a Doctor when you NEED it most!

Submitted by Robyn Torres RN on June 14, 2019

We need to find ways to help families source and pay for the cost of adult day services, respite and long-term residential care, for their loved ones suffering from the middle to late stages of dementia. Many families struggle to provide care at home for as long as possible, in order to prepare for a lengthy period of unrelenting financial output for care in a setting other than one's home. Memory care programs and stays in memory care units are rarely, if ever, covered by medical insurance, other than by privately funded long term care insurance. In this country, specialized dementia care is out of reach for the majority due to the lack of consistent funding and the shortage of program slots and unit beds.

Submitted by Sharon K. Inou… on June 14, 2019

Delirium occurs in 22-89% of older adults with ADRD spanning all care settings, particularly in hospital, post-operative, post-acute, long-term care, and palliative care settings1,2. It is associated with numerous adverse outcomes including prolonged hospital stays, loss of function, nursing home admission, and mortality3-7. Importantly, delirium has been associated with an accelerated course of cognitive decline in those both with and without underlying ADRD8-11. Moreover, delirium is known to be a distressing experience for both patient and caregiver that may affect emotional, psychological, and physical well-being long after the delirium episode12-13. ADRD caregivers, therefore, are subject not only to burden from caring for a person with ADRD, but also to added distress from acute delirium. Although there are areas of overlap, the experience – and therefore burden – of delirium and dementia are largely distinct. While dementia involves an insidious and progressive decline, delirium is characterized by its acute onset and fluctuating course with often severe and unexpected change, carrying with it uncertainty of course and prognosis. Consequently, delirium contributes unique and cumulative sources of distress for ADRD caregivers.
We propose a session dedicated to the important area of caregiver issues for persons developing delirium superimposed on ADRD. Family members are key to the recognition of delirium in persons with ADRD, where change in mental status is a key diagnostic feature. Understanding caregiver and individual risk factors for delirium incidence, duration, and severity in persons with ADRD will be key to developing interventions to reduce the adverse outcomes and burden associated with delirium. Developing and testing approaches to improve family identification of delirium for community-living persons with ADRD, along with multi-component, nonpharmacologic preventive strategies will help to empower caregivers, reduce burden, and minimize adverse outcomes from delirium in this vulnerable population. Finding effective interventions to reduce caregiver burden for delirium in ADRD will also be key to advance the field. Importantly, intervening for delirium may offer an unprecedented opportunity to forestall future cognitive decline in persons with ADRD.
This proposed area aligns with the NIA focus on research needed to improve quality of care and outcomes across care settings, including quality of life and the experience of persons with dementia and their caregivers. Further research in this area would increase our knowledge about interventions that can reduce burden and improve emotional outcomes and quality of life for millions of individuals and their families.

Sharon Inouye, MD, MPH, for the Network for Investigation of Delirium: Unifying Scientists (NIDUS-R24 Delirium Network)

1. Fong TG, Davis D, Growdon ME, Albuquerque A, Inouye SK. The interface between delirium and dementia in elderly adults. Lancet Neurology. 2015; 14:823-832.
2. Fick DM, Agostini JV, Inouye SK. Delirium superimposed on dementia: a systematic review. J Am Geriatr Soc. 2002;50(10):1723-1732.
3. Marcantonio ER. Delirium in Hospitalized Older Adults. N Engl J Med. 2017;377(15):1456-1466.
4. Oh ES, Fong TG, Hshieh TT, Inouye SK. Delirium in Older Persons: Advances in Diagnosis and Treatment. JAMA. 2017;318(12):1161-1174.
5. Fong TG, Jones RN, Marcantonio ER, Tommet D, Gross AL, Habtemariam D, Schmitt E, Yap L, Inouye SK. Adverse outcomes after hospitalization and delirium in persons with Alzheimer Disease. Ann Intern Med. 2012;156:848-856. PMC3556489.
6. Rudolph JL, Zanin NM, Jones RN, et al. Hospitalization in community-dwelling persons with Alzheimer's disease: frequency and causes. J Am Geriatr Soc. 2010;58(8):1542-1548.
7. Lange E, Verhaak PFM, Meer K. Prevalence, presentation and prognosis of delirium in older people in the population, at home and in long term care: a review. International Journal of Geriatric Psychiatry. 2012;28(2):127-134.
8. Fong TG, Jones RN, Shi P, Marcantonio ER, Yap L, Rudolph JL, Yang FM, Kiely DK, Inouye SK. Delirium accelerates cognitive decline in Alzheimer’s disease. Neurology. 2009;72:1570-1575.
9. Gross AL, Jones RN, Habtemariam D, Fong TG, Tommet D, Quach L, Schmitt E, Yap L, Inouye SK. Delirium and long-term cognitive trajectory among persons with dementia. Arch Intern Med. 2012. 172; 1324-31.
10. Inouye SK, Marcantonio ER, Kosar CM, Tommet D, Schmitt EM, Travison TG, Saczynski JS, Ngo LH, Alsop DC, Jones RN. The short-term and long-term relationship between delirium and cognitive trajectory in older surgical patients. Alzheimers Dement. 2016; 12:766-75.
11. Girard TD, Jackson JC, Pandharipande PP, et al. Delirium as a predictor of long-term cognitive impairment in survivors of critical illness. Crit Care Med. 2010;38(7):1513-1520.
12. Schmitt EM, Gallagher J, Albuquerque A, et al. Perspectives on the Delirium Experience and Its Burden: Common Themes Among Older Patients, Their Family Caregivers, and Nurses. The Gerontologist. 2017:gnx153-gnx153 (Epub).
13. Racine AM, D’Aquila M, Schmitt EM, Gallagher J, Marcantonio ER, Jones RN, Inouye SK,* Schulman-Green D.* Delirium burden in patients and family caregivers: development and testing of new instruments. Gerontologist. 2018; gny041 (Epub)

Submitted by Sharon Hall on June 15, 2019

There needs to be a greater effort in calling the neurodegenerative diseases dementia, NOT Alzheimer's as a synonym. Those with the "related dementias" become second class citizens in the conversation when a summit is called Alzheimer's but means neurodegenerative disease re: Alzhiemer's, Frontotemporal, Lewy Body, vascular, Parkinson's. Acknowledge that young onset can affect those very young, like in their 30's, who still have small children at home and no access to services for those over age 60.

Submitted by Diane Smith on June 17, 2019

Public as well as professional education is needed to bring awareness to frontotemporal dementia (FTD). As of 2013, the average time from symptom onset to diagnosis of FTD was over four years (vanVliet et al., 2013). Caregivers struggle to understand early onset symptoms such as behavioral and psychological symptoms of dementia (BPSD), personality changes, and impairment in executive functioning. Imagine, if you will, providing care for a loved one with behavioral and personality changes, for years, without a diagnosis or information about the cause or sources of support. As an example, FTD is often initially thought to be a psychiatric illness or, because average age at onset is 60 years old, a middle age crisis. People with FTD may have agnosia, disinhibition, and impulsivity. As professionals we need to gear our minds to think dementia when we hear of middle aged persons with a new onset of criminal behavior. When the news broadcaster tells of yet another senior citizen being conned out of all of their money; think FTD. When your patients' spouses or children tell you about bizarre ritualistic behaviors, uncontrolled spending, gambling, sexual behaviors, or eating: think FTD. As neurodegeneration of the frontal and or temporal lobes gradually spreads and the symptoms increase support and education is a must for these caregivers to continue to provide care for their loved one at home. The Association of Frontotemporal Degeneration (theAFTD.org) is a great source of help for individuals with FTD and their family caregivers. Yet, this organization is not widely known to the public or professionals. Please, consider including FTD in your conversation.

Submitted by Negin Hajizadeh on June 18, 2019

Older patients require specific treatments and considerations in the hospital setting . Providers who are not trained in Geriatric best-practices face difficulties in caring for these patients such as in the recognition and management of delirium. Older patients are also at risk for faulty and biased clinician prognostication which is communicated to family members and may influence decisions about treatments. Critically ill older patients in particular require tailored management and as the average age in our ICUs increases we need research on methods to efficiently and effectively educate clinicians and other hospital providers on the unique considerations for older critically ill patients. These efforts must also include changes to the built environments of our hospitals to mitigate delirium and functional decline for those who survive their hospital admission.

Submitted by Karen Young on June 19, 2019

Hi Elena and Courtney:

There is no question that Creative Human Engagement is the most cost effective, immediate intervention for families living with Alzheimer's (though I must admit I am a little biased).

9 years ago I started Sweet Readers with my mother (then living with Alzheimer's) and daughter (then 11 years old).

We connect trained middle school students and adults living with AD through immersive arts-based programs. Our mission is to empower young people, through training, multigenerational programs and communities of support, to revitalize adults living with AD and become catalysts for eldercare excellence.

Since 2011 we have served roughly 40,000 people spanning four generations and bridging 40 communities in three countries (US, UK and Canada). We have seen remarkable evidence that the type of Creative Human Engagement we provide directly combats isolation and loneliness and have also seen remarkable breakthroughs for people in all stages of the disease as well as people struggling with FTD and recovering from stroke.

I would be delighted to come to your conference and speak about our work and the importance of Creative Human Engagement for people living with AD, particularly with trained young people!

Turns out in June, 2020 we will kick off our 10th Anniversary Year which will include a documentary of the impact of youth and Creative Human Engagement on families living with AD.

Please feel free to reach out to me if you would like more input!

Thank you so much for your work and focus on this timely and critical area.

Submitted by John Sawyer, PhD on June 20, 2019

We run a Dementia Care management program and are expanding it this year.

We have found one key thing is to track how such a program provides value/sustainability so organizations can justify those programs.

We would love to do such a talk. We work with UCSF and others on dementia care management.

Thanks !

R. John Sawyer, II, Ph.D., ABPP-CN
Board Certified Clinical Neuropsychologist
Co-Director, Cognitive Disorders and Brain Health Program
Department of Neurology and Neurosciences
Ochsner Health System

Submitted by NIA Blog Team on June 20, 2019

Thanks to everyone for your thoughtful comments. We will consider these as input to the official Request for Information. If you have additional ideas or topics of interest to submit, please email DementiaCareSummit2020@nih.gov by June 28.

Submitted by Matt Estrade on June 25, 2019

I urge the summit to consider discussion on further research of the concept of 'Ambiguous Loss' of dementia care partners and expansion of programs that may ameliorate the impact. Dr. Pauline Boss and colleagues have pioneered this idea for 40 years; my experience as a gerontologist and support group leader have shown me that there is great merit in addressing this content. Ambiguous loss is when the care partner (or family member) struggles with the idea that their loved one -because of the disease - is both alive and dead at the same time. The struggle may cause care partners to 'freeze' in their coping and/or alienate their loved one. When described to care partners, this concept is very familiar to them.

I also ask the summit to continue research in the impact of religious and spiritual practices on care partners and persons living with dementia. As far as I can see, Dr. Ralph Piedmont's ASPIRES scale has not been use with this population yet and would be an excellent tool for this purpose. Thank you for considering these ideas.

Submitted by Uganda Allianc… on June 26, 2019

The online sharing has been so helpful in enabling us access new and relevant information to share with the communities to expand reach and inform policy

Submitted by Cathy Sikorski… on June 26, 2019

As a caregiver for 8 different family members and friends over the last 30 years and consequently limiting my Elder, I continue to see a desperate need for better legal preparation in the face of aging and dementia. Often, especially at an initial diagnosis, important legal and financial steps can be taken especially to protect a community spouse and/or caregiver from destitution. I would love to present at this conference on these important topics.

Submitted by Kelly on July 10, 2019

I would like to hear about recent studies that have focused on interventions that improve the quality of life for those in the middle to late stages of memory loss. As I read the latest in research most focus on prevention, understandable, but as I develop programs for residents I would like to hear about new ways to improve quality of life that have research to back it up. Thanks.

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