Listen Live or Listen at Your Convenience Thursday – Jan 10th, 2023 – 2pm EST, 1pm CST, 12pm MST, 11am PST & 7pm London GMT, 9pm South Africa SAST, and on the 11th at 6am in Australia AEDT
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Our Host, Lori La Bey talks with Kris Sundberg the Executive Director of Elder Care IQ and Elder Voice Family Advocates, an advocacy non-profit organization. Kris is a passionateAs an award winning, former executive and corporate officer in Fortune 100 and entrepreneurial companies, she brings extensive experience in management, communications, and public affairs.
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Contact Kris Sundberg – Elder Vocie Family Advocates & Elder Voice IQ
“With an estimated 80,006 deaths of residents due to COVID in long-term care homes nationwide — approximately 10,000 additional deaths reported since a month ago — and significant family visitation restrictions still in place in many LTC homes across the nation, it seems as though listening to the voice of elders in these care settings is now more important than ever!” Dr. Eilon Caspi
KARE 11 Investigates: Elder neglect alleged in locked down facilities
Maltreatment reports dropped during the pandemic, but some families say loved ones suffered emotional and physical neglect as families were locked out for months. Very , very sad story.
Let Us Know Your Thoughts
RESEARCH SURVEY Caregiver Burnout & Dementia
Chantell Horn, is a student studying for the Graduate Diploma in Occupational Health and Safety Management at Southern Institute of Technology, New Zealand. She is currently completing her dissertation which would enable her to look at the reality of burnout among dementia caregivers and the effects on them.
Alzheimer’s Speaks Radio – Shifting dementia care from crisis to comfort around the world one episode at a time by raising all voices and delivering sounds news, not just sound bites since 2011.
Lori La Bey Can Help Your Organization Switch To Virtual Presentations For Staff Trainings, Family Support, Perspective Clients and Support Gatherings.
Accepting Dementia in Your Life
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For a Complete List of Dementia Chats Videos – Click Here
We would love to here your thoughts and comments on this tip.
See What Others Have Say About Lori La Bey
I want to echo the thanks and appreciation of my colleagues… Your presentations were movingly authentic, fully engaging and wonderfully informative. Thank you for all that you are doing, and all that you’ve done for us!
Carla Koehl, Director of Community Relations – Artis Senior Living of Lexington
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge WA
Lori La Bey, host of Alzheimer’s Speaks is joined on Open Mic with Cate Lau-Booth, Harry Urban, Craig Hanke and Kelley Horton.
All topics related to dementia and caregiving are welcome.
We feel everyone’s input is valuable to shift our dementia care from crisis to comfort. If you are living with a form of dementia or have symptoms, those that care or have cared for a loved one or are professional care partner, business professionals making a difference, authors, singers and song writers, film makers, advocates, politicians, family and friends of those with dementia… Everyone is welcome to give insights, state needs they see and support to others as long as it is in a respectful fashion. We look forward to hearing from you.
Today our Dementia Chats Experts, those diagnosed and living with cognitive impairment, discuss what they would like to see their communities provide them to show they are truly a “Dementia Friendly Business or Communities.” You will find great tips for businesses and communities to consider.
Our experts today are: Michael Ellenbogen, Laurie Scherrer, Bob Savage and Truthful Loving Kindness. Lori La Bey, founder of Alzheimer’s Speaks facilitates the conversation. Lori can be reached at or visit Alzheimer’s Speaks website.
Voices of Those Diagnosed with Dementia
Dementia Chats™ was created with the intention to educate people living with dementia; their care partners both family and friends as well as professionals and advocates. Our Experts are those diagnosed with dementia. We have been doing this series since July of 2012.
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge Washington
Minnesota, is entering the last 3 weeks of this short legislative session and consumer advocacy groups such as Elder Voice Family Advocates and AARP MN are concerned and letting their voices be heard. Without strong protections and response, avoidable abuse, neglect, and mistreatment of these vulnerable adults will continue in the coming years.
An estimated 40% of residents in assisted living residences in Minnesota have dementia.
Many more are likely to have some level of cognitive impairment.
Article By Eilon Caspi
Head in the Sand
A 90 years old resident with Alzheimer’s disease was living in a “memory care” unit of an assisted living residence (ALR) in Minnesota. One evening in 2016, while lying in her bed she called for staff help 99 times over 39 minutes. Nobody came to assist her. Then, around 8:30pm, she fell off the bed. While lying on the floor, she continued to call and cry out for help for 143 times (including multiple loud banging on the bed rail using her small wooden cross). At some point she cried out, “Please help me Lord.” Nobody came to assist her. In total, she called and cried out for help 242 times over the course of an hour and 38 minutes.
It was only after her daughter who watched the incident remotely on a hidden camera alerted the staff to the fall that they came to assist her. A staff member who came into her bedroom asked her, “Were you calling for help?”
When the family showed staff the video of the fall, their response, as reported by another daughter, was, “This is the assisted living model. If she was at home and had hired another home health group to come in, she would have experienced the same thing.”
This daughter reported that a similar incident occurred a month earlier and that the ALR “has done nothing to make improvements” to prevent her mother’s second fall off her bed and provide a timely response. The daughter wrote that without the hidden camera, the family wouldn’t have known what happened to her mother. She reported that the Minnesota Department of Health (MDH) who watched the video didn’t investigate the alleged neglect pertaining to the fall and the failure of staff to respond to it. She added, “Facilities will never be held accountable. Lack of regulation and strong lobbying presence paid for by the assisted living groups doesn’t help us much either.”
Permission to use information pertaining to this incident was given by the resident’s daughter.
A Minnesota Senate Aging and Long-Term Care Policy Committee hearing was held on February 28, 2018. The committee heard from leaders of the long-term care (LTC) industry about the abuse and neglect stories reported in the Star Tribune Special Report entitled Left to Suffer: Abused, Ignored Across Minnesota (November 12-16, 2017).
Patti Cullen, president and CEO, Care Providers of MN, said, “We are all deeply disturbed by the stories highlighted in the media.” Carli Lindemann, Vice President of Housing, Knute Nelson, Alexandria, Minnesota, asked, “Is there anything we could have done to prevent this from occurring?”
The short answer is “Yes.”
The warning signs for the current crisis in ALRs and “memory care” units in Minnesota have been widely known across the country for over 20 years. The table below outlines 16 warning signs, including government reports, research studies, and experts’ opinions.
Chronology of Warning Signs in Assisted Living Industry – 1997 – 2018
Year
Report / Study / Experts’ Statement
1.
1997
General Accounting Office report
2.
1999
General Accounting Office study
3.
2003
Hearing before the U.S. Senate Special Committee on Aging entitled Assisted Living: Examining the Assisted Living Workgroup Final Report
4.
2004
Article by Gruber-Baldini and colleagues
5.
2005
Book by Robert Kane and Joan West It Shouldn’t Be This Way: The Failure of Long-Term Care
6.
2007
Pace & Love’s book chapter
7.
2008
Pace & Love’s “ostrich statement” and call for action
8.
2009
Study by Hawes and Kimbell entitled Detecting, Addressing and Preventing Elder Abuse in Residential Care Facilities
9.
2011
Study entitled Mistreatment in Assisted Living Facilities by Philips and Guo
10.
2012
Hawes’s “ticking time bomb” interview with PBS Frontline
11.
12.
2013
Large-scale study by Castle entitled An Examination of Resident Abuse in Assisted Living FacilitiesFrontline and ProPublica investigation and film entitled Life and Death in Assisted Living
13.
2013/4
National study of Long-Term Care Providers; and Deadly Neglect report in San Diego County, California
14.
2014
National study by Zimmerman, Sloane, & Read
15.
2015
Report on growth in complaints of abuse, neglect, and exploitation between 2010 and 2015; and Review of practices and states’ regulatory activity by Brian Kaskie and colleagues
2017-2018
Star Tribune Special Report Left to Suffer; Report by Office of the Legislative Auditor of MN Evaluation of Minnesota Department of Health Office of Health Facility Complaints
16.
2018
General Accounting Office study entitled Improved Federal Oversight of Beneficiary Health and Welfare is Needed
Were the numerous warning signs over the past two decades known to the leaders of the assisted living industry in Minnesota?
During the Minnesota Senate Aging and Long-Term Care Policy Committee hearing held on February 28, 2018, Patti Cullen said, “We feel strongly about the need to focus on prevention.” She added: “The industry has zero tolerance for mistreatment.”
If these warning signs were known, to what extent strong, proactive, anticipatory preventive steps were taken (in close collaboration with consumers, consumer advocacy organizations, and MDH) to develop and implement basic and effective measures to protect vulnerable and frail elders from abuse and neglect in ALRs in Minnesota?
Governor Dayton told reporters after the Senate hearing on February 21, 2018, “Although the Department of Health is partially to blame, the real responsibility falls on each and every one of the care providers in the state’s facilities.” He added, “they need to fix the problems, stop breaking state laws and follow moral codes” (Channel 5 ABC Eyewitness News, February 22, 2018).
For the leaders of the LTC industry in Minnesota to ignore the warning signs and allow ALRs to remain a registration-only entity may be at the very least considered immoral and irresponsible and at worse neglectful.
Did the leaders of the LTC industry in Minnesota examine and give serious consideration to adopting the National Assisted Living Workgroup’s 110 recommendations for change including the recommendation to ensure that a state licensure for ALRs is implemented?
Without a reform consisting a comprehensive set of basic safeguards in legislation to protect residents in this rapidly growing LTC setting, vulnerable and frail residents will continue to be at risk of neglect, abuse, avoidable accidents, and other forms of harm.
During the Senate hearing held on February 28, 2018, Gayle Kvenvold, president and CEO, LeadingAge MN, expressed her “deepest apologies” to family members for the abuse and neglect experienced by their loved ones in LTC homes across the state. She described the current state of affairs as “a watershed moment.”
The sorely needed and long-overdue need for a licensure of ALRs in Minnesota combined with ALR’s industry commitment to implementation of evidence-based best care policies and practices will ultimately increase the likelihood that residents will remain safe and free from psychological harm.
It will also fulfill the important promise of ALR as a safe care environment; one that is fully committed to ensuring that vulnerable and frail residents will experience the “highest practical medical, psychological, and social well-being.”
U.S. General Accounting Office. Long-Term Care: Consumer Protection and Quality of Care Issues in Assisted Living. Report to Ron Ryan, U.S. Senate, 1997.
U.S. General Accounting Office. Assisted Living: Quality of Care and Consumer Protection Issues. Testimony before the U.S. Senate Special Committee on Aging, 1999.
U.S. Senate Special Committee on Aging. Assisted Living: Examining the Assisted Living Workgroup Final Report, April 29, 2003.
Sloane, P.D., Zimmerman, S., & Ori, M. Care for persons with dementia. In: S. Zimmerman, S., Sloane, P.D. & Eckert, J.K. eds. Assisted living: Needs, practices, and policies in residential care for elderly. Baltimore: The Johns Hopkins University Press, 2001.
Gruber-Baldini, A. L., Boustani, M., Sloane, P. D., & Zimmerman, S. Behavioral symptoms in residential care/assisted living facilities: Prevalence, risk factors, and medication management. Journal of the American Geriatrics Society, 2004; 52: 1610–1617.
Kane, L. R. & West, C.J. It Shouldn’t Be This Way: The Failure of Long-Term Care. Vanderbilt University Press, 2005.
Pace, D.D. & Love, K. Enhancing assisted living: Are collaborative stakeholder efforts necessary? In: Golant, S.M., and Hyde, J., eds. The Assisted Living Residence: A Vision for the Future. Johns Hopkins University Press, 2008.
Hawes, C. and Kimbell, A.N. Detecting, Addressing and Preventing Elder Abuse in Residential Care Facilities. Report to National Institute of Justice, U.S. Department of Justice, 2009.
Philips, L.R. and Guo, G. Mistreatment in Assisted Living Facilities: Complaints, substantiations and risk factors. The Gerontologist, 2011; 51(3): 343-353.
Zimmerman, S., Gruber-Baldini, A.L., Sloane, P.D., Eckert, J.K., Hebel, J.R., Morgan, L.A., Stearns, S.C., Wildfire, J., Maganizer, J., Chen, H.C. & Konard, T.R. Assisted living and nursing homes: Apples and oranges? The Gerontologist, 2003; 43, Special Issue II: 107-117.
Breslow, J.M. Assisted living is a “ticking time bomb.” Interview of Catherine Hawes. PBS Frontline 2013 (interview held on November 10, 2012).
Castle, N. An Examination of Resident Abuse in Assisted Living Facilities. A report submitted to the U.S. Department of Justice, 2013.
Frontline and ProPublica. Life and Death in Assisted Living. PBS, 2012.
Centers for Disease Control and Prevention. National Study of Long-Term Care Providers. Fast Facts, 2013-14. National Center for Assisted Living.
Zimmerman, S., Sloane, P.D., & Read, D. Dementia prevalence and care in assisted living. Health Affairs, 2014; 33(4): 658-666.
National Consumer Voice for Quality of Long-Term Care (2018). More must be done to protect residents of assisted living facilities. News article, February 6, 2018.
Kaskie, B.P. Policies to protect persons with dementia in assisted living: Déjà vu all over again? The Gerontologist, 2015; 55(2): 199-209.
Institute of Medicine. Improving the quality of care in nursing homes, 1986. Washington, DC: National Academy Press.
Office of the Legislative Auditor of Minnesota. Office of Health Facility Complaints. Evaluation Report, 2018.
U.S. General Accounting Office. Medicaid Assisted Living Services: Improved Federal Oversight of Beneficiary Health and Welfare is Needed, 2018.
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge Washington
On Alzheimer’s Speaks Radio This Tuesday, August 30th, 2016
2pm EST, 1pm CST, 12pm MST, 11am PST and 4pm London Time
Harry Urbanlives in Pennsylvania and was diagnosed with dementia of the Alzheimer’s type, over 12 years ago. He founded a dementia support group on Facebook called Forget Me Notand started the United Against Dementia initiative. he also writes a blog at MyThoughtsOnDementia.com. Today we will discuss abuse and dementia. This is a very complicated and dangerous situation when it occurs, no matter what type of abuse it is.
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