In Their Own Words: How One Program Changed the Lives of Dementia Patients and Their Caregivers
April 1, 2020
This article describes one of more than 40 dementia caregiving programs found in Best Practice Caregiving (bpc.caregiver.org), a free online database that helps organizations identify, compare and adopt best-fit programs for their clientele and community.
When the UCLA Alzheimer’s and Dementia Care (UCLA ADC) Program was developed in 2012, David Reuben, MD, Chief, Division of Geriatrics at the David Geffen School of Medicine at UCLA and Director of the UCLA ADC, and team had a simple goal: To provide more individualized support for the dementia patients and their family caregivers who receive care from the UCLA health system. In the program, specialized nurse practitioner Dementia Care Specialists co-manage dementia with primary care and specialist physicians to provide personalized dementia care focused on clinical, behavioral and social needs.
Seven and a half years and more than 2,800 patients later, the positive outcomes—clinical, behavioral, family stress reduction and more—are abundant and clear.
Metrics that Matter
These improved outcomes are experienced by patients and the family and friend caregivers who provide assistance and care, oftentimes 24/7. The ways the program has helped them are as unique as the individuals themselves. They’re usually deeply personal or deceptively simplistic—but for these program participants, they might be among the most important benefits.
- “I wouldn’t be able to keep my mom at home, honestly, without having [the UCLA team] to call upon … Health issues are still scary at times to me and it is comforting to know that I am not alone in making decisions for Mom.” — Ellen, daughter and caregiver of Pauline
- “It … helps knowing what the stages are and knowing what to expect. There’s no fear of the unknown now … [My mother’s] thriving at 93 years old with this diagnosis, and that’s a blessing.” — Konda, daughter and caregiver of Joyce
- “We don’t feel alone in dealing with the memory decline that has impacted our uncle and [our Dementia Care Manager’s] suggestions have been invaluable.” — Dawn, niece and caregiver of Bill
- “Charlie had an instant connection with [Our Dementia Care Specialist Nurse Practitioner] and since then, they have formed a very close bond. [Our manager] is heaven-sent and I would be lost without her.” — Natalie, sister and caregiver of Charlie
- “For me, there is security in knowing, and with the ADC Program, I have immediate access to answers.” — James, husband and caregiver to Marilyn
The ADC Program’s benefits have extended beyond UCLA, as it’s being adopted and launched at other delivery sites expecting to achieve similar positive outcomes.
A New Way to Share Best Practices
Successful programs like UCLA ADC haven’t always been readily available—or even known—to other health care and community service organizations, which has left a gap in getting the right support and services to people who need them.
That has all changed with the recent launch of Best Practice Caregiving (bpc.caregiver.org), a free, online database that provides organizations with an easy-to-use, comprehensive tool to learn about top dementia caregiving programs across the U.S.
Best Practice Caregiving features more than 40 vetted, proven dementia caregiving programs, including UCLA ADC. Health and service providers can use the resource to compare a range of evidence-based programs, determine the best fit for clients and patients and learn what training is needed to offer the programs in any community.
Developed by Industry Leaders
The database is a product of the collaboration among three leading organizations in the field of aging and caregiving: Benjamin Rose Institute on Aging, Center for Research & Education; Family Caregiver Alliance: National Center on Caregiving; and The Gerontological Society of America. Project funders are The John A. Hartford Foundation, Archstone Foundation and RRF Foundation for Aging.
When asked about his wishes for the ADC Program, James said, “I would like to see it expand to other sites around the country. Based on my experience, the ADC Program is an awesome program and everyone would benefit from having it available.” With Best Practice Caregiving, that wish is one step closer to coming true.