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Alzheimer’s Association Holds Listening Session to Hear from Families, Caregivers
by Connie McMullen
The Alzheimer’s Association held a listening session March 20th, to gather opinions and stories from caregivers of persons living with dementia.
The "Listening Session on Behavioral Care Needs of Persons with Dementia in Nevada" was held in partnership with the Nevada Aging and Disability Services Division and the Department of Public and Behavioral Health, and video conferenced statewide to gather information. Testimony will be presented to the interim Legislative Committee to Study the Needs Related to the Behavioral and Cognitive Care of Older Persons, which is meeting April 10th, to develop policy recommendations to be considered in the 80th Legislative Session.
Figures show the prevalence of Alzheimer’s disease in Nevada will grow 49 percent between 2017 and 2025. Sixty-four-thousand Nevadans will be affected, the second highest percentage increase of all 50 states.
Costs associated with the disease are also having an impact. In 2015, Nevada had the highest Medicare cost in the nation spending $30,000 per person on people with Alzheimer’s disease.
Alzheimer’s disease is now the sixth leading cause of death in the United States creating a significant public health concern that many consider to be a growing epidemic. "We have a lot of work to do to change this direction," said Ruth Gay, M.S., Chief of Public Policy, Alzheimer’s Association of Northern California and Northern Nevada.
While statistics show one in six Nevadans over age 45 experience cognitive decline significant enough to interfere with daily activities, only half have spoken to their doctor about it.
"This is an opportunity to bring together people to share how to better serve those with dementia and cognitive impairment different from developmental disabilities and combat related trauma," Gay said. "The fact the state focused a committee to consider this speaks loudly."
Moderator Elizabeth Edgerly, Ph.D., Executive Director, Alzheimer’s Association Northern California and Northern Nevada chapter, told attendees, "You are not alone in this," thanking caregivers for sharing personal stories.
Thirteen caregivers and advocates across the state spoke of their personal experiences. Among them was Anna Olsen-Figueroa, Social Services Manager with ADSD, and a family caregiver. Olsen-Figueroa said the biggest problem she has experienced is that people do not know where to look for assistance. She said families choose to care for a loved one without help and support.
"Families see it as their responsibility, but they also need to work," she said. "Taking time off to juggle family responsibility causes problems."
Figures show nearly 40 percent of Alzheimer’s and dementia caregivers in Nevada provide 20 or more hours of care per week, and nearly half provide care to their parent or parent-in-law. Olsen-Figueroa said "caregiving creates high job turnover" and those people are hard to replace.
Others testified the cost of caring for a loved one was difficult to afford. Recent data shows that in 2017, the lifetime cost of care for a person living with dementia was $341,840 – with 70 percent borne by families directly through out-of-pocket costs and the value of unpaid care.
Testimony taken will be used to develop bill drafts to provide better access to care and services. Caregivers and families can contact the Alzheimer’s Association 24/7 Helpline at 1 (800) 272-3900 or visit online at alz.org.