This month's Health Care Trailblazer, Dr. Elizabeth Edgerly, is an influential leader in the Alzheimer's community and a Geriatric Specialist. Her exciting new projects are focused on supporting caregivers and families who care for those with dementia. I was fortunate enough to track her down for a phone interview before she left for Boston to give a presentation at the AAIC Conference. Dr. Edgerly's journey from psychology student to being named 2013's Woman Health Care Executive Woman of the Year is an inspirational story for psychologists and health professionals pursuing a field in geriatric care.
You were named the 2013’s Woman Health Care Executives Woman of the Year by the Alzheimer’s Association. Can you share about your background and how you came to receive such a prestigious acknowledgment?
I received a Bachelors in Psychology in 1988 and a PhD in Psychology in 1993. In 1995 I joined the Alzheimer’s Association and continue to oversee all chapter programs for persons with dementia, their families and professionals. Through the Alzheimer’s Association I have taken on a very active role as a presenter and spokesperson while continuing to develop new programs to improve the quality of life for persons with dementia.
As for the award, I was nominated by a colleague named Jillian Springer, a manager at California Pacific Medical Center and Brain Health Center in San Francisco. We were partnered together through the Alzheimer’s Association to work on an innovative clinical model of brain health. It was noted to be the only model that integrated a memory clinic with assistance from an equipped in-house Alzheimer’s Association staff. I am so proud to be the first psychologist to receive this award and honored to be able to further raise awareness about Alzheimer's to such a prestigious group of women leaders in the field.
I noticed you have done research on the important topic of sexuality and intimacy in later life. How would you advise staff members of care homes to help them feel more comfortable discussing sexual topics with residents?
There hasn’t been much research done on this topic and how it affects people with Alzheimer’s and their interpersonal relations. Advising staff on this subject can be tricky due to varying religious backgrounds and personal beliefs. This can influence their comfort level when discussing this topic or caring for a person who has Alzheimer’s.
I personally encourage staff caring for patients with Alzheimer’s to separate their beliefs about sexuality (masturbation, homosexuality) from the beliefs of the people they are caring for. I realize this is not easy to do. However, the reality is that all staff should realize older adults residing in a care facility often do not have the freedom to find privacy to fulfill their sexual needs in a safe manner. This is especially true if a staff member is unwilling to discuss the subject with them. In this case the normal sexual activity of an individual becomes placed at the mercy of someone else’s judgment, which does not seem fair.
The bottom line is staff should create an open environment and recognize that private sexual expression is normal late in life.
Drawing from your research, what is the best way for psychologists to collaborate with the health care team on best practice for patients with Dementia or Alzheimers?
Psychologists have the opportunity to play a unique role in treating behavioral symptoms of patients with dementia. Approaches that are commonly used to intervene with behavioral symptoms in children and adults with developmental or emotional disorders have been successfully applied to behavioral symptoms of dementia. There are systems for looking at triggers for behaviors and finding ways to prevent behaviors from occurring. Through recognition of early signs, experts in the field of behavioral modification can help staff and family caregivers to prevent problems from occurring. Psychologists who have an expertise in dementia are also able to assist families in understanding and addressing the challenges they face and developing coping strategies for the dementia itself as well as the concurrent conditions that are common in caregivers (such as depression, grief and anxiety disorders).
There is a developing field of cognitive rehabilitation that focuses on improving or compensating for loss of cognitive function in patients with deficit. This approach, along with psychotherapy for caregivers and early stage patients with dementia, is expanding and creating an ever greater role for psychologists.
In consideration of the baby boomers soon comprising the majority of the population, what does the future of dementia care look like?
The Alzheimer’s Association website has projected statistics of the impact on caregivers and the rest of us:
Total payments for health care, long-term care and hospice for people with Alzheimer's and other dementias are projected to increase from $203 billion in 2013 to $1.2 trillion in 2050 (in current dollars). This dramatic rise includes a 500% increase in combined Medicare and Medicaid spending.
By 2025, the number of people age 65 and older with Alzheimer's disease is estimated to reach 7.1 million—a 40 percent increase from the 5 million age 65 and older currently affected.
By 2050, the number of people age 65 and older with Alzheimer's disease may nearly triple, from 5 million to a projected 13.8 million, barring the development of medical breakthroughs to prevent, slow or stop the disease.
More Facts can be found in this inforgraphic: http://www.alz.org/documents_custom/2013_facts_figures_fact_sheet.pdf.
Are you currently working on any research or projects that you can share with us?
I am currently working on two major research/evaluation projects while simultaneously also working closely with the Brain Health Center, which is in it’s first year of development.
The first is called the “Family Support Program”, which tests the NYU caregiver intervention in a culturally and ethnically diverse population of Northern California. This intensive caregiver support program has been found to be effective in a largely white, middle and upper class community. We are testing it with mono lingual and bilingual families, many of who are Latino or Chinese in partnership with colleagues at other Alzheimer's Association chapters in California.
The second project I’m working on is “The San Francisco Dementia Support Network: Enhancing quality of care for persons with dementia in managed care”, a partnership between the Alzheimer's Association, Kaiser Permanente SF and UCSF. It was presented on July 15th, 2013 at the Alzheimer's Association International Conference 2013 in Boston and showed that, through intensive social support services, we can improve caregiver efficacy and also reduce emergency room visits.
How would you advise emerging psychologists to become leaders in their field?
I encourage current and future psychologists to consider sharing their knowledge and skills through non traditional avenues such as through educational programs (to the general public or caregivers) and through program evaluation. We have so much to offer - especially in dementia care - and this shift could allow us to think more broadly about what we can do on a bigger scale with our careers. I also encourage graduate students in psychology and allied professions to consider going into Gerontology. There is a real need for more expertise in aging now and in the future. This gap in the system needs to be filled.
Can you name a few organizations or care transition tools to look out for that are making strides in improving dementia care?
Organizations that have concentrated efforts on reducing use of antipsychotics, which is safer practice for seniors:
Pioneer Network: https://www.pioneernetwork.net
California Culture Change Coalition: http://www.calculturechange.org
There is also exciting innovative work taking place in the area of technology that is helpful for providers, caregivers and persons with dementia. In some cases, technology may allow someone the opportunity to live alone at home safely for a longer period of time. An example of such technology is a sensor that can be placed on a door (or even on a cabinet door) that tracks whether or not a family member has left home (or, in the case of the cabinet door, if they've reached in the cabinet for their morning cereal). With this technology caregivers can receive a text notification about their loved ones' activities.
Another area of technology that has proven useful is location devices such as ID bracelets we use on the Alzheimer’s Association site, called ComfortZone. Locator devices such as these that can be used to locate a wandering or confused family member, have helped ease the mind of family caregivers.
Finally, can you please share a memorable experience or interaction you had with a role model or mentor of yours?
When I was an undergraduate at the University of Maine in Orono, I took an Aging and Psychology course. The course was taught by Dr. Jane Fisher. I was a senior and set on studying fear and anxiety. After taking her course and learning more about how to conduct research with older adults, I fell in love with the individuals with whom I performed testing. What for some people could be depressing (i.e. working with older adults) gave me joy and a purpose in life. It became my calling. Dr. Fisher’s enthusiasm was infectious and changed my whole career trajectory as well as my focus in psychology.
About Elizabeth Edgerly
Elizabeth Edgerly, Ph.D., is a clinical psychologist and serves as Chief Program Officer of the Alzheimer’s Association, Northern California & Northern Nevada. Dr. Edgerly joined the Alzheimer’s Association in 1995 and oversees all chapter programs for persons with dementia, their families and professionals. She is instrumental in the development of new programs to improve the quality of life for persons with dementia. Dr. Edgerly is an active presenter and spokesperson for the Alzheimer's Association and has appeared on television, radio and in numerous national and local publications, speaking on topics related to brain health, caregiving and Alzheimer’s. She serves on numerous national and local advisory councils, including the Center for Disease Control’s 2013 Healthy Brain Initiative, the California Department of Public Health’s Partnership to Improve Dementia Care and Reduce Inappropriate Use of Antipsychotic Medication, the San Francisco Department of Aging’s Strategy for Dementia Excellence and the new Brain Health Center at California Pacific Medical Center. Dr. Edgerly staffs the chapter’s Medical Scientific Advisory Council and co-created the Alzheimer’s Association annual awards for excellence in Alzheimer’s science that have honored 80 young researchers since 2002.