Significant efforts are underway to find effective treatments and prevention strategies for Alzheimer’s disease and related dementias. But for the millions of people living with these diseases today, there is an immediate urgent need to find effective ways to improve access to dementia care and support.
Telehealth, which uses video calling and other technologies to support patients and their caregivers at home, is one promising way to help ensure people have access to much-needed care and education. Using a computer, tablet, or phone, patients and their families can have a remote appointment with a doctor or join an online health education program to learn about how to improve well-being and quality of life. Wearable devices to track changes that could signal a health or safety problem, such as mobility and balance, may be another aspect of telehealth.
The ability to receive care and be monitored remotely may be particularly helpful for older adults with limited mobility and those living in rural areas. Even in populated areas, people with dementia and their caregivers may have difficulty leaving home or lack adequate transportation to access the care and support they need. In addition, for some, dementia expertise may not be available near home.
There can be huge geographic gaps in where dementia care specialists are available. Even if patients are able to see dementia specialists, it might be only once a year or every six months. This can mean they are not getting the care they need at the time concerns arise.
— Katherine L. Possin, Ph.D., associate professor of neurology at the University of California, San Francisco.
By making dementia care and education more accessible, telehealth can help manage dementia issues at home before a crisis happens. This, in turn, can lessen caregiver burden and stress and improve quality of life for people with dementia. Promising evidence suggests that telehealth dementia services may also reduce emergency department visits, which may help reduce the costs of dementia care.
“NIA is committed to supporting the development of effective interventions to help people living with dementia and those caring for people with dementia and is equally committed to ensuring that these interventions get to the people who need them,” said Lisa Onken, Ph.D., director of the behavior change and intervention program in NIA’s Division of Behavioral and Social Research. “Telehealth interventions offer a method of delivering dementia care that may be easier for people with dementia and their care providers who find it difficult to leave their home. With telehealth, health care providers can meet people where they are in their homes.”
Several NIA-supported researchers are exploring innovative ways to use different types of telehealth technologies to support dementia care and make dementia care more widespread.
Care Ecosystem: Expanding access to dementia care expertise
For many caregivers and people living with dementia, it can be a struggle to get to dementia care expertise. To help, researchers at the Memory and Aging Center at the University of California, San Francisco (UCSF) developed the Care Ecosystem — a collaborative dementia care program delivered over the phone.
“Our vision was to develop a dementia care model using telehealth to reach all people living with dementia wherever they were and when they needed the help,” said Katherine L. Possin, Ph.D., associate professor of neurology and director of the Care Ecosystem at UCSF.
At the heart of the Care Ecosystem are care team navigators (CTNs), who are trained dementia care guides. Through regular phone and video calls, each CTN provides patients and caregivers with education and support, and coordinates care with a team of dementia specialists, including a nurse, social worker, and pharmacist. The CTN will ask the caregiver about current challenges and works to resolve immediate concerns such as caregiver stress. Next, the CTN helps the family think about long-term care strategies, such as advance care planning, and connects them to community resources.
These conversations and consultations can help foster valuable, trusting relationships. When concerns arise, caregivers can get answers from a CTN who knows them personally. When issues occur after hours, caregivers can use strategies they developed with their CTN. Possin said this helps to lower the number of crises: “We find that emergencies don’t happen as often.”
The reduction of emergency department visits was confirmed in a recent study of the Care Ecosystem. According to this study of 780 pairs of caregivers and people with dementia, the telehealth-based Care Ecosystem resulted in measurable differences. Study volunteers in San Francisco and Omaha, Nebraska, participated in the Care Ecosystem program for one year. Results showed that those participating in the program saw significant improvements in several areas, compared to study volunteers with usual care:
- Improved dementia patient well-being, including physical health, energy level, mood, living situation, memory, relationships, and finances
- Decreased levels of caregiver depression
- Reduced caregiver burden
- Decreased number of emergency department visits
“To have an access point for critical symptom management is beyond huge,” said Helen Medsger, a family caregiver, in a video about the Care Ecosystem. “It certainly kept my family out of the ER more than once.”
Based on the results of the initial study, Possin is leading a five-year follow-up study to determine the long-term effects of the dementia support program and to identify those who are most likely to benefit. According to Possin and the Care Ecosystem website, several U.S. health care systems and clinics have begun to adopt the Care Ecosystem dementia care model to expand access to dementia expertise nationwide. Sites include the Ochsner Brain Health and Cognitive Disorders program at the Ochsner Medical Center in New Orleans and the Curry Senior Center, a safety-net clinic dedicated to providing health care to marginalized low-income and homeless seniors in the Tenderloin neighborhood of San Francisco. To help health care systems and clinics implement the program. UCSF offers a Care System Toolkit.
Tele-Savvy: Online caregiver education
Caregiver training through telehealth is another way to improve dementia care. Caregivers are often short on time, juggling the care of a loved one and managing their own health, sometimes while working and raising a family. Traveling to a training and the need for in-home care while the caregiver is away can make attending a caregiver class in person difficult. Using a telehealth platform to bring training to the caregivers, on their own time and in their own space, enables more people to access this vital information.
The Tele-Savvy program, led by Kenneth Hepburn, Ph.D., professor in the Nell Hodgson Woodruff School of Nursing at Emory University, includes weekly video conferences and daily, short video lessons that can be watched anytime. Through interactive exercises and learning about other caregivers’ experiences, the program teaches caregivers to think like a nurse — to assess, plan, implement, and evaluate care needs. The caregivers also learn new strategies for home activities and clinical communication skills.
A small, preliminary study of 57 caregivers from 14 different states who completed the six-week Tele-Savvy training showed some benefits for both the caregivers and care recipients. Results showed a significant improvement in caregiver well-being and a decrease in the number of upsetting behaviors and psychological symptoms in the care recipients. This small study helped make the case for further research into Tele-Savvy’s effectiveness in diverse populations and a larger sample size. Hepburn and his colleagues are now looking at the effectiveness of the Tele-Savvy program over a longer period of time, one year, in a larger group of people of different racial and ethnic backgrounds including African American, white, and Hispanic caregivers. Also, as different types of dementia can present unique challenges, Hepburn is leading a study in which the training is tailored for caregivers of those living with primary progressive aphasia, when a person’s language skills become slowly and gradually impaired.
Caregivers perform many roles, Hepburn said, including nursing tasks, social work tasks, and occupational and physical therapy tasks. “The Tele-Savvy program may not only be good for caregivers,” he said, “but also to help clinical providers see the trained caregivers as health care partners.”
MOVING Together: Mindful movement online for caregivers and people with memory loss
Telehealth can also bring exercise into the home, making it easier to reap the many health and emotional benefits of staying active. With support from an NIA Small Business Innovation Research grant, Together Senior Health, Inc., is evaluating the use of an online platform to deliver MOVING Together. This program is a mindful movement class for older adults with memory loss and their care partners. The online class is based on the PLIÉ and Paired PLIÉ programs (Preventing Loss of Independence through Exercise), an in-person group class developed by UCSF with support from NIA and the Veterans Administration.
MOVING Together focuses exercises to improve activities that are important for everyday living, such as getting up and down from a chair. It’s these activities that can trigger falls, which can affect a person’s confidence about moving around the home. This, in turn, “can lead to a loss of independence,” said Cynthia Benjamin, CEO and co-founder of Together Senior Health, Inc.
“Using repetition and doing movements in different ways, people don’t have to remember. Muscle memory still works well even with general memory decline,” she added.
To help older participants access the class with ease, Benjamin uses a thoughtful, intuitive web-platform design and a team of class instructors that are available to answer questions. In addition, participants receive a home visit to help them get connected to the web platform and plan for their first class.
Participation from home provides a safe, familiar environment that is particularly beneficial for people with memory loss. “Having to go to a new place can be very disorienting,” said Benjamin. Moreover, learning new movement strategies at home lends important context. “By learning in their homes, it’s much easier for people to translate the new skills, such as moving from their chair to their sofa.”
With NIA SBIR support, Benjamin is comparing the effectiveness of the online pilot program to the original in-person class. In the second phase of the study, they will expand the online class to more people and measure the effects on people’s health and well-being, including quality of life or improvements in balance. For future studies, Benjamin hopes to adapt MOVING Together for people with mild cognitive impairment to add other evidence-based activities, such as music, and understand the long-term effects, such as improved sense of self.
Looking ahead
Telehealth innovations created by NIA-supported researchers and others are ushering in a promising new era for dementia care and caregiving. By reaching people in their homes, telehealth technologies are helping to address health inequities for families that live in rural areas or who otherwise cannot access care easily.
“Caregivers may be especially in need for dementia expertise and interventions to be easily accessible. Telehealth may be able to help meet this critical need,” Onken said.
As researchers and others continue to explore telehealth services, they are also considering the potential challenges. For example, internet connections and understanding technology may be challenges for some. Although internet access is becoming more widespread, many people still lack quality internet service. Others may not have a computer in their home or lack a video camera on their phone.
Telehealth services won’t completely replace in-person visits to the doctor or other professionals anytime soon, but, for some, they may help provide the added support and expertise that families living with Alzheimer’s disease or a related dementia need — when they need it, wherever they live.
References
Possin KL, et al. Effect of collaborative dementia care via telephone and internet on quality of life, caregiver well-being, and health care use: The Care Ecosystem randomized clinical trial. JAMA Internal Medicine. 2019;179(12):1658-1667. doi: 10.1001/jamainternmed.2019.4101.
Griffiths PC, et al. Tele-Savvy: An online program for dementia caregivers. American Journal of Alzheimer’s Disease and Other Dementias. 2018;33(5):269-276. doi: 10.1177/1533317518755331.
Casey JJ, et al. An integrative group movement program for people with dementia and care partners together (Paired PLIÉ): initial process evaluation. Aging & Mental Health. 2020;24(6):971-977. doi: 10.1080/13607863.2018.1553142.