Healthcare costs for people living with dementia are more than 60 percent higher than those with cancer or heart disease, according to a study led by Dr. Amy S. Kelley, Associate Professor in the Brookdale Department of Geriatrics and Palliative Medicine and a Brookdale National Leader in Aging Research. The study reveals the devastating effects of dementia on patients and on their families, many of whom bear the brunt of caregiving responsibilities and significant out-of-pocket costs not covered by insurance. Dementia is the fifth leading cause of death in the United States. It has no cure, nor any effective treatments to slow its course. It can last years and sometimes decades.

Dr. Kelley and her team of researchers looked at patients on Medicare and used data from the Health and Retirement Survey, a federally funded study. They found that the average total cost of care for a person with dementia over the last five years of life was $287,038. For a patient who died of heart disease it was $175,136, and for a cancer patient it was $173,383. Medicare paid almost the same amount for patients with each of those diseases — close to $100,000 — but dementia patients had far more expenses that were not covered.

On average, the out-of-pocket cost for a patient with dementia was $61,522 — $30,000 higher than the cost for someone with heart disease or cancer. This is because dementia patients need

around-the-clock assistance. Caregivers are needed to help with basic activities like eating, dressing and bathing, and provide constant supervision to make sure they do not wander off or harm themselves. None of these costs are covered by Medicare.

For many families, the cost of caring for a dementia patient often “consumed almost their entire household wealth,” said Dr. Kelley. There are 15 million Americans currently caring for someone with dementia, one in five will have to quit their job and 36 percent say their careers have been hurt, according to Caring.com.

Dr. Diane E. Meier, Director of the Center to Advance Palliative Care, said most families are unprepared for the financial burden of dementia, assuming Medicare will pick up most costs. “What patients and their families don’t realize is that they are on their own. We need to begin to address this issue now to protect families from financial ruin.”

The study gained substantial media attention, contributing to awareness of the struggles of patients with dementia, their families and their caregivers. The study findings were published in the Annals of Internal Medicine in October 2015. ■

LILIAN AND BENJAMIN HERTZBERG PALLIATIVE CARE INSTITUTE

PALLIATIVE CARE NEWSLETTER

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SPRING 2016

Amy S. Kelley, MDCasts a Spotlight on

Dementia Costs

BROOKDALE DEPARTMENT of GERIATRICS AND PALLIATIVE MEDICINE

LILIAN AND BENJAMIN HERTZBERG PALLIATIVE CARE INSTITUTE | SPRING NEWSLETTER | 2

HERTZBERG HONORED BY VOLUNTEERS AT CITI

Citi Crochets and Knits for the Community, a volunteer organization of Citi employees, has donated over 250 handmade crocheted and knitted blankets for patients and families of the Lilian and Benjamin Hertzberg Palliative Care Institute at Mount Sinai Hospital.

Citi Crochets initially planned to make 100 crocheted and knitted blankets for the Wiener Family Palliative Care Unit at Mount Sinai Hospital (MSH), but the project proved so inspiring to volunteers that the donation more than doubled. The blankets will be distributed to patients and families on our palliative care unit at MSH, throughout MSH by our palliative care consultation teams and on our inpatient palliative care unit at Mount Sinai Beth Israel.

Citi volunteers donated much more than blankets, however. They devoted countless hours and dedication to

patients and families whom they would likely never meet. Patients and families receive blankets infused with the warmth and kindness of strangers, which provide a glimmer of light and hope. For families, the blankets often serve as objects of remembrance after their loved one has died. The beautifully crafted blankets, transformed our hospital rooms as the blankets brought color and comfort to all. ■

Maureen Leahy Promoted to Associate Director of Nursing

Maureen Leahy, RN, BSN, MHA, CHPN, the Wiener Family Palliative Care Unit’s first Clinical Nurse Manager, was promoted to Associate Director of Nursing at Mount Sinai Hospital in March 2016.

In her role as Clinical Nurse Manager, Ms. Leahy has overseen nursing care and supervised the nursing staff on the Palliative Care Unit (PCU) and has educated Mount Sinai nurses in palliative care training and mentoring programs. “Maureen’s leadership is phenomenal and her focus on families and staff exemplary. She brings an attention and compassion to her work that I’ve never seen before. She has made the Wiener Family Palliative Care Unit into one of the best in the country,” says Dr. R. Sean Morrison, Executive Director of the Hertzberg Palliative Care Institute.

Ms. Leahy joined the Hertzberg Palliative Care Institute in October 2012 with a strong background in palliative nursing,

after serving as nurse manager at Tidewell Hospice in Port Charlotte, Florida, and establishing a palliative care program at the Lee Memorial Healthcare System in Fort Myers. At Hertzberg, Ms. Leahy says she has focused on cultivating the PCU nursing staff ’s strengths and creating a strong team and sense of community. “Palliative care is a demanding area of nursing and it’s important to support nurses both personally and professionally,” she said. “I always encourage them to express their feelings and maintain a work-life balance.”

In her new position, Ms. Leahy will have greater responsibility for educating frontline nurses throughout the Mount Sinai Health System about palliative care. “We’re facing an aging population that will need better pain management and end-of-life care,” she said. She will be starting a two-day palliative care nursing resource training program that will help nurses quickly identify patients who need palliative care consults, hospice care or other services.

“We will never have enough palliative care specialists to take care of patients, so we have to train the non-specialist staff in palliative care skills. In her expanded role, I expect that Maureen will develop new initiatives, teach and inspire,” said Dr. Morrison. ■

LILIAN AND BENJAMIN HERTZBERG PALLIATIVE CARE INSTITUTE | SPRING NEWSLETTER |3

“Maureen’s leadership is phenomenal and her focus on families and

staff exemplary.”

LILIAN AND BENJAMIN HERTZBERG PALLIATIVE CARE INSTITUTE | SPRING NEWSLETTER | 4

Palliative Care Unit Nurses Receive National Board

Certification

The nursing staff of the Wiener Family Palliative Care Unit (PCU) at Mount Sinai Hospital has received certification from the National Board for Certification of Hospice and Palliative Nurses. The achievement is an important milestone for the nursing team, and for Maureen Leahy, Associate Director of Nursing, who listed certification as a primary goal when she joined the PCU in 2012.

“Becoming certified shows our nurses’ strong commitment to palliative care and providing exceptional patient care. It helps advance the field to become part of the organization that determines palliative care nursing policy,” said Ms. Leahy, who has been certified since the American Nurses Credentialing Center’s first National Examination was offered. She has maintained her certification since that time and has supported her staff through their study and test taking.

To achieve certification, nurses must take a rigorous exam with in-depth questions about every aspect of palliative care: from pain management, to addressing family and patient concerns, as well as providing end-of-life care. “Preparing for the exam has helped the nursing staff understand their strengths and reinforced their knowledge of palliative care. They have become more confident in their roles as consultants to other medical units at Mount Sinai and as ambassadors for palliative care nursing,” said Ms. Leahy.

Stephen Ryan, RN, BSN, MSW, CHPN, a member of the PCU nursing staff, said: “Certification demonstrates that we are not only nurses who are working on a palliative care unit but are palliative care nurses who are following national standards and best practices in the field. Palliative care is growing and becoming more recognized; certification is a step in the right direction.”

Dr. R. Sean Morrison, Executive Director of the Hertzberg Palliative Care Institute said: “I’m incredibly proud of the number of nurses who have sought certification. It assures our patients that they are receiving the highest level of palliative care from the nurses on our unit.”

The following Palliative Care Unit nurses and nursing assistants have received National Certification in Hospice and Palliative Care Nursing (CHPN/CHPNA):

Joan Christopher, BSN, RN, CHPNSylvie Jacobs, BSN, RN, CHPNKrizia Sabas Ko, BSN, RN, CHPNLuz Lamagna, BSN, RN, CHPNJosh Lasseigne, BSN, RN, CHPNIngrid Lockhart, PCA, CHPNAMaureen Leahy, BSN, RN, MHA, CHPNNatasha Marks, PCA, BS, CHPNAMorgan Meinel, BSN, RN, CHPNAkinola Odunayo, BSN, RN, MHA, CHPNStephen Ryan, BSN, RN, MSW, CHPN

LILIAN AND BENJAMIN HERTZBERG PALLIATIVE CARE INSTITUTE | SPRING NEWSLETTER | 5

Terry Lee had one wish: “to be with horses again.” The former equestrian’s advanced kidney disease made it almost impossible to leave the hospital, but soon after she was admitted to Mount Sinai Beth Israel’s Palliative Care Service last November, she had an unusual visitor.

Dr. Elizabeth Mann, a Geriatrics and Palliative Medicine Fellow within the Hertzberg Palliative Care Institute, had been caring for Ms. Lee at Mount Sinai Beth Israel. Ms. Lee, who had no family or friends to visit her in the hospital, spoke with Dr. Mann about her love for horses. Dr. Mann, an avid rider, wondered what it would be like to never see or touch a horse again and knew she had to do something special.

Dr. Mann contacted Gentle Carousels, a nonprofit organization which brings

miniature horses to visit patients in the hospital. “Magic” came to visit Ms. Lee not once – but twice! “To have a special visitor just for her made her very happy,” Dr. Mann recalled.

Ms. Lee was elated. She exclaimed: “My heart is bounding out of my chest!”

Dr. Mann was not only able to bring joy to Ms. Lee but she also saw the entire staff rally together. “I think it shows that all members of the hospital staff, even those who aren’t involved in direct patient care, want to make things better for our patients. It really pulled people together to work on a common cause.”

Ms. Lee died days later with the palliative care staff by her side. Those not with her but whom she had touched were thinking of her, her spirit, her love for horses, and her joy in having “Magic” visit.

“Although we couldn’t bring Terry back to the stable, we could bring the stable to Terry. It’s moments like these that make my day and make the staff ’s day,” said Dr. Stephen Berns, Director of Education for Palliative Care at Mount Sinai Beth Israel. ■

Making Miracles Happen IN PALLIATIVE CARE

Lilian and Benjamin Hertzberg Palliative Care InstituteBrookdale Department of Geriatrics and Palliative Medicine

Icahn School of Medicine at Mount SinaiOne Gustave L. Levy Place, Box 1070, New York, NY 10029

Tel. 212-241-1446 • www.mountsinai.org/palliative

Above left: Elizabeth Mann, MD,”Magic” and Stephen Berns, MD

Left: Members of the Mount Sinai Beth Israel Staff who made this miracle happen

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