Easing the Work of Family Caregivers
Technologies supporting the vital job of caring for a loved one.
Over 33 million people in the United States, 85% of them family members of the person they care for, provide unpaid help for adults. In recent years, technology designed to address family caregivers’ needs has also increased. This assistance is a good thing because caregivers never say: “I just have too much help.”
Technology for caregivers breaks down into a few general categories:
Organization & communication
Monitoring & motion detection
Emergency response systems
We discussed developments with two caregiver experts — Sara Czaja, Ph.D., assistant professor of Gerontology in Medicine, Weill Cornell School of Medicine in New York and psychologist Barry Jacobs, Psy.D., a clinical psychologist, health care consultant and co-author of AARP Meditations for Caregivers.
Organization & Communication
“Technology can be very beneficial to caregivers,” Czaja said. “Technology facilitates their access to resources and also to sources of support. For one thing, they can engage with other caregivers. It also helps with logistics.”
This category is a good example of Czaja’s point. It’s likely that life gets more complicated when a family member has a stroke. People who step into caregiving roles have a need to get and stay organized, handling logistics as efficiently as possible. They must keep track of innumerable documents — medical files, insurance documents, advance directives — as well as passwords, contact numbers, prescription and other health information. Not to mention staying on top of schedules, engaging helpers and keeping family, friends and co-workers updated on the survivor’s situation. There are several platforms that can help:
CaringBridge was founded in 1997 and became a non-profit 501(c)3 in 2002. As its name implies, it provides a way for a community of concerned family and friends to stay connected and in touch. It is not a platform for caregiving task management; it specializes in keeping loved ones connected. There’s a guest book where a community can pass along information and updates as well as good thoughts, encouragement and photos. This is a helpful addition even when using other caregiver apps. It allows for uplift and encouragement and shortens the amount of time spent updating your community. It’s free and available on the web in the Apple App Store and Google Play.
CareZone allows you to securely manage your loved one’s health information. You can manually enter or upload:
- medical files
- medication information (including pharmacy numbers, dosing, prescribing physicians, etc.)
- advance directives
- insurance information
It includes a shareable calendar and a to-do section, so you can share information and assign tasks to others on your care team. There is a place for notes, observations and photos. You can even send a voice message to a group of up to 100. It’s free and available in the Apple App Store and Google Play. Though CareZone offers paid products and services, no purchase is necessary to use all of the features offered in the app.
Caring Village is designed specifically for family caregivers to help them easily coordinate and keep track of their loved one’s care. Users can create “villages” among friends and relatives to coordinate the specifics of a loved one’s care. For instance, users can create customizable care plans for their loved ones plus personalized to-do lists. Other features include a centralized calendar, document storage, a place to list medications and a wellness journal that allows you to share entries with the rest of your village. The app is available for free to consumers and is available in the Apple App Store and Google Play.
Most survivors take several prescription medicines. Keeping up with dosages, instructions, scheduling and refills can complicate a caregiver’s already hectic life. Medication management apps are designed to keep adhering to a medication regimen safe and simple. Features of these apps may include:
- Reminders to take your medicine
- Dosage and instruction info
- Tracking when medicine is or isn’t taken
- Refill reminders, quick and easy refill ordering
- Side effect and drug interaction info and alerts
- Sharing information with caregivers
Dr. Sara Czaja
Remembering to take the right amount of the right medicine at the right time is job number one. There are calendar tools and other apps on mobile devices and desktop computers that can remind caregivers and survivors when to take their medication and how much medication to take when.
“Reminding someone to do something is called a prospective memory task,” Czaja said. “It’s remembering to do something in the future. There are ways that calendar functions can be set up to remind people. It offloads people’s memory — they don’t have to remember to take their medication [on their own]. It’s a big stress reducer.”
Dr. Barry Jacobs
“Medication management apps can really help caregivers do a better job,” Jacobs said. “They can help them understand the medicines, keep track of which medicines they have given and which they haven’t. They can help survivors and caregivers understand what to do in the event of an adverse medication event. Rather than just having a pill box and maybe a pill box with alarm, these apps can send you a text. It’s just a much higher level of functionality to ensure that the patient is receiving the medicine correctly.”
Everyone may not need a full-featured app. If your loved one only takes one or two medications, and reminders that alert you at the right time each day are all you’re after, a simple calendar or reminder app may be what you need. But if other features mentioned above sound helpful or important to you, here are a couple of examples of full-featured apps:
Medisafe is an easy-to-use medication reminder that also provides tips, refill reminders, progress reports and discounted prescription offers. Caregivers and health care providers can also be connected to the account. It has many free features with some premium features available for in-app purchase. Available in the Apple App Store and Google Play.
MyMeds allows caregivers to schedule medication reminders that are sent via text. When their loved one has taken the medicine, they reply “yes.” It’s free and available in the Apple App Store and Google Play.
Keeping track of a loved one’s condition is certainly part of many caregivers’ duties. Depending on the information required, it can be a time-consuming job. Well, as they say, “There’s an app for that” — in fact, several.
“I think the value of these apps is several-fold,” Jacobs said. “One important part is that we know that when people are weighing themselves every day, or taking their blood pressure every day, or tracking whether they took their medicine or not, or how much they walked in a given day, they’re much more conscious of their behaviors that influence health. These selfmonitoring systems often change behavior. Another benefit is they’ll graph out how much you’ve walked in a week and how it compares to other weeks. It will take the data it has collected and give it to you in a graph or other form, which gives you a better sense of how you’re doing. Then when you go to the doctor’s office, you can show your doctor the phone, and they can see how your blood pressure has been trending. It provides much more detailed information to your health care team so that they can make better decisions and help you make better decisions.”
A couple of examples of health monitoring apps:
eCare21 allows a caregiver to remotely monitor a loved one’s glucose, heart rate, sleep, physical activity and more without being intrusive. With 24/7 monitoring via devices such as a FitBit or a smartwatch, caregivers and health providers can gather information to help them be proactive, even from a distance. Caregivers, other family members and doctors can easily access this information anywhere. The app is free and available at the Apple App Store and Google Play.
PainScale is a diary app that allows a caregiver to track and monitor a loved one’s pain. It’s a place to record pain triggers and intensity, activity levels, medication dosages, mood and sleep quality. The information can be compiled in a pain report that can be shared with health providers. It’s free and available at the Apple App Store and Google Play.
Emergency Response or Medical Alert Systems
Medical alert devices can help stroke survivors who are at risk of falling or have limited mobility who may have trouble calling for help in the event of a fall or other injury.
“These devices have been around forever,” Jacobs said. “They are quite helpful and provide a sense of reassurance that your loved one isn’t on the ground for several days before someone discovers them.”
You’ve likely seen ads for these devices on TV. They are usually a lightweight pendant or wristband that the user wears that connects either to a telephone landline or cellular network. In the event of a mishap, the survivor presses a button to contact a dispatcher who can summon emergency help or contact a friend or family member. The most sophisticated of these units can automatically activate when a fall is detected without the user having to take any action.
Can’t someone simply rely on their smartphone? Probably not. Our phone isn’t always on our body — just think how many times you’ve misplaced your phone. What about digital assistants like Alexa or Google Home, they make calls, right? They can dial phone numbers, but, right now at least, they can’t call 911. Medical alerts can.
These devices are not apps. Medical alert devices that are monitored require a monthly subscription. Subscriptions can range from $20/month for a basic landline-based plan up to $80/month to include more features, such as fall detection, GPS tracking or cellular service. Some companies require contracts.
A Consumer Reports article from February 2019 offers helpful guidance on how to decide what you need from an emergency alert system and offers an overview of several brands.
GPS & Motion Sensing Devices
Keeping tabs on a loved one can be vexing, especially if they have dementia. GPS tracking devices can help. Most cellphones contain GPS hardware by default, and a caregiver can download programs that lets them keep up with their loved one’s whereabouts. There are wearable GPS trackers that can be inserted into shoes or worn on the wrist. They allow family caregivers to keep tabs on a loved one without inconveniencing them.
Wearable sensors provide a wealth of capabilities for remote monitoring without being intrusive. Motion detectors can alert caregivers when their loved one has stopped moving for a long time. Motion-sensing security cameras can connect to a caregiver’s phone or tablet. Other types of sensing devices can:
- keep track of unusual activity
- send alerts if the temperature is outside of previously established ranges
- tie into the lighting system to dim and brighten various rooms based upon the resident’s movement around the house
- in many cases, friends and family can review sensor logs directly online.
There are a lot of these kinds of products. Google or Amazon will provide myriad choices in less than a second.
Staying at home is most everyone’s desire, but some survivors have trouble moving around and dealing with the details — thermostats and lights and locks. Today, smart home systems with an ever-increasing cornucopia of smart features puts many of those details as close as your smartphone. Many of these apps are able to learn different schedules or be programmed to one specific schedule. Smart thermostats are able to learn and adjust according to the household’s needs. Smart lights can turn on at certain times of day or night or turn on and off automatically when you enter or leave a room.
Automated door locks, security alarms, surveillance cameras and other security apparatus are safety measures that require little effort. Security cameras allow caregivers and survivors to keep an eye on the property but also allow caregivers to observe their loved ones from elsewhere when they have need to be away.
Again, there are plenty of options available.
More ways tech can help
Caregivers take care of their loved ones, but they also need to take good care of themselves. It also helps to learn about their loved ones condition and stay in communication with the health care team. Through it all, having the opportunity to learn from experts and other family caregivers can be invaluable.
Help with respite
All caregivers need time to take a breather. Generally, it doesn’t just happen, you have to make it happen, especially if it is to happen regularly — which it needs to. Here are a few apps that can help you give yourself the gift of a calm mind. These examples are free, or offer a combination of free and premium features:
For caregiver depression
It is not uncommon for family caregivers to feel depressed. Here are a couple of apps that may help:
Moodkit is an app designed to help you apply effective strategies of professional psychology from cognitive behavioral therapy to your everyday life. With four integrated tools, MoodKit helps you to engage in mood-enhancing activities, identify and change unhealthy thinking, rate and chart mood across time, and create journal entries using custom templates designed to promote well-being. It can be used on its own or to enhance professional treatment. Currently Moodkit costs $4.99 (one-time charge) and is only available for Apple devices.
What’s Up? is a free app that also uses cognitive behavioral therapy as well as acceptance and commitment therapy methods to help caregivers cope. It has many features including breathing techniques, a positive and negative habit tracker, a catastrophe scale that helps you put your problems into a better perspective as well as a diary for thoughts and feelings. Search for “What’s Up? A Mental Health App” in your device’s app store. It’s free to download with In-app purchases available.
Help with sleep
CBT-i Coach is for people who are engaged in cognitive behavioral therapy for insomnia with a health provider, or who have experienced symptoms of insomnia and would like to improve their sleep habits. The app will guide you through the process of learning about sleep, developing positive sleep routines, and improving your sleep environment. It provides a structured program that teaches strategies proven to improve sleep and help alleviate symptoms of insomnia. It is intended to augment face-to-face care with a health care professional, but can be used on its own, however, it is not intended to replace therapy for those who need it. It was a collaborative effort between VA’s National Center for PTSD, Stanford School of Medicine and DoD’s National Center for Telehealth and Technology.
Caregiver apps plus coaches
Sometimes insurance companies, health systems or other health providers will offer platforms that can be quite helpful for caregivers and their loved ones. The features may vary from platform to platform but can offer a secure communication mechanism with your health care teams. They may be set up to receive questions and provide answers without having to wait 24 hours or more for a response. It may connect directly to your electronic medical records. It’s a platform not just within the family, but between the family and the health care team. Most of these have supplemental human case management.
“There are ways of using the platform to connect with somebody immediately,” Jacobs said. “That person may check in weekly to see how things are going and then send links to instructional videos immediately on, for instance, car transfers and leg braces or help you download a stress management program.
“These platforms are usually provided by health insurance companies or health systems for certain patients and family members that fit certain high-risk medical profiles. By increasing the family caregiver’s communication, knowledge and capabilities, the insurers are hoping to foster better patient care in the home setting so survivors don’t have to go to the emergency room or hospital when it is avoidable. For the most past, these are not products that you would buy. It’s the basic apps that a caregiver can purchase on their own.”
Consider asking your health care team if they provide this type of platform.
It is the rare person who already knows what they’re doing when suddenly thrust into the role of caregiving for a stroke survivor. It’s easy to feel overwhelmed and like you are doing everything wrong. Training can help with that, and the internet has made that easier than ever.
Home Sweet Home Care offers free access to more than 50 family caregiver courses and around 30 videos through its Family Caregiver Education Program.
The Family Caregiver Alliance (FCA) National Center on Caregiving offers access to more than 40 free, recorded webinars on caregiver topics under categories of daily care, planning for care and self-care. Visit the FCA webinar library to view all webinars available. You can also visit the FCA’s YouTube channel, which offers numerous caregiving topics and videos in English and other languages, including Chinese, Mandarin, Spanish and Vietnamese.
mmlearn.org has produced more than 300 online caregiver training videos. These were initially created to provide caregiver training for professional caregivers, but the video collection also provides training to family caregivers. The collection contains discussions with elder law attorneys, physicians, therapists and other professionals on depression, memory loss and other medical conditions.
Caregiver Action Network’s Caregiver Video Resource Center has videos of caregivers talking about their experiences and what they’ve learned. In these videos, family members share discoveries and describe their journeys through caring for loved ones. The Caregiver Action Network also offers several instructional videos for hands-on care.
CareAware, a caregiver support service of CICOA Aging and In-Home Solutions in central Indiana, has a free, six-part video series covering the journey of caregiving, assembling and understanding key documents, and dealing with negative emotions and other topics.
It can be hard to feel confident and calm when taking on the care of another person, but with a little help from technology, maybe some of the stress can be reduced.
This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Heart Association.