Digital Technology for the Family Caregiver
Thanks to advances in medicine and public health, people are living longer than ever before. This means more and more family caregivers are responsible for managing the diverse needs of a loved one with chronic illness or frailty. How can family caregivers attempt to balance this added responsibility along with their own personal needs, work, parenting and other demands in their lives?
Digital technology offers practical solutions for caregivers seeking to solve a problem, learn new skills and get support. Where else but online can you find a peer group of caregivers to talk to when you need it at 1:00 in the morning? How convenient it is to post an electronic schedule that allows friends and family to sign up for tasks like bringing by a meal, driving your loved one to a doctor’s appointment or giving you respite from caregiving.
This fact sheet offers an introduction to some of the tools currently available to help manage your caregiving responsibilities and other tasks. The world of technology changes quickly, so even more new devices, applications and websites will be available in the future to help you manage care.
Who Uses Technology?
Computer and mobile technologies seem to be everywhere these days. Although one in five adults does not use the Internet, the majority of Americans do go online for business, for information, to stay in touch with friends, for entertainment. (Digital Differences, Pew Research) As baby boomers age, the use of technologies to manage their own care and the care of others will increase. This age group, unlike their parents, is more familiar with technology. They use it in their work and they use it at home to stay connected and manage household functions. Generally, it’s viewed more positively as a regular part of daily life. Increasingly, baby boomers will demand technology solutions to make their lives easier. And this extends to help with caregiving responsibilties as well. (Family Caregivers Need Access & Training on Assistive Technologies, December 6, 2011, Kathleen Kelly, Executive Director, Family Caregiver Alliance.)
Below is an overview of the types of electronic related tools available to help caregivers take advantage of current digital resources.
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| Personal Computer (PC): An electronic tool capable of performing calculations and storing and processing large amounts of information.
| Multiple uses may include word processing to keep care notes, a database for tracking information or access to the internet for email to communicate with your loved one. You can also participate in an online support group, research health information, share digital photo albums and much more.
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| Tablet: A mobile computer, larger than a mobile phone or personal digital assistant, integrated into a flat touch screen.
| Designed for portable entertainment and communication (movies, music, e-mail and e-books), tablets share some of the same uses as computers, but they differ in significant ways. A touchscreen replaces the mouse and keyboard (though wireless keyboards can be purchased to use with the device), and they typically have no DVD drives. With a paid internet connection, however, viewing videos like the Caregiver College Series on FCA’s CAREGIVERdotORG YouTube channel is ideal. Currently, tablets do not run the most common software suites available since they are modeled on a smart-phone platform rather than a computer operating system. Tablets are ideal for the caregiver seeking to browse the web, use email, take photos/videos to share online, download apps for medication management or appointment scheduling, or play games and stream movies with their care receiver.
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| Cell phone & Smartphone: For voice and data communication. The information transmits over a network of satellites and antennas.
| Mobile phones are used just like a landline phone. The main difference is that the phone battery needs to be charged regularly and the phone will only work where it can access a signal from the phone company’s antenna. In addition to making calls, a smartphone is capable of internet access for email, text messaging, social media, web browsing and movie/video streaming. Use a phone to take photos or a video, or download special applications (“apps”) used to access a service or perform a task and more. Apps are dependant on the phone and service plan. (See Types of Caregiver Applications below.)
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| MP3: The primary format for the compression of audio signals (music or voice) into very small computer files.
| Use this tool to record your favorite music, e-book or narrated relaxation exercises to use whenever you have a moment to yourself. You can do the same for the person in your care.
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| GPS (global positioning device): A system of satellites, computers, and receivers that is able to determine the location of a receiver on earth by calculating the time difference for signals from different satellites to reach the receiver.
| Try using a GPS in the car for directions to a new doctor’s office visit or exercise class. A number of applications are now available for use as a tracking device for a loved one who is at risk for getting lost.
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| Game Console: A special type of computer used to play video games.
| Wouldn’t it be nice to make exercise more enjoyable at home or practice yoga with a friend? All you need is a TV screen, a game console such as a Nintendo Wii, and accessories. (And, yes, the determination to include exercise as part of your weekly routine!)
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| Digital Cameras: A camera that captures images electronically rather than on film. Most take both still pictures and short videos.
| Take photos of mom to share with your siblings who live in another state or short videos of a grandchild’s latest achievements.
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| Web Cams: Many newer computers and smart phones have cameras built in above the computer screen, but a small video camera can also be attached to most computers, if needed.
| Use with a video-conferencing tool such as Skype or Google Video chat for face-to-face connectionwith a relative who lives far away.
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| Software & Applications (“app”): These are programs you can download and access directly from a smart phone, tablet, MP3 player or other mobile device. Free and fee apps are available from the application marketplace on your mobile device or on the internet.
| From banking to playing Scrabble with a friend across the country, an online resource or mobile application is available for just about everything, or so it seems. (See Types of Caregiver Applications below.)
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Practically speaking, computer apps don’t come close to solving every caregiver challenge. Where is the app that makes all of your siblings willing and able to provide care for your frail dad? Or how about the app that cleans up the bathroom after you assist your spouse, who has dementia, take his shower? No, the burden for these and many other activities remains with the caregiver.
Nonetheless, computer and mobile device applications do excel in areas such as: sorting, organizing, recording, locating, informing, matching, coaching, calming and reminding. These digital tools are evolving to provide solid service in ever dependable and useful ways.
Finding the Right Digital Tools for Your Situation
Today more than 7,800 health-related applications alone are available across the three main mobile platforms (Android, Apple, Blackberry), according to a study by MobileHealth News. More than 500,000 apps are available across all venues and platforms with growth continuing at a rapid pace. With the overwhelming number of application to choose from, how do you find one that’s right for you and your situation?
No special credentials or qualifications are required to create a website or mobile application. Anyone with the talent, resources and/or determination can “go live” with their creation. It’s important to remember that there is no guarantee that the app has undergone expert review to ensure the information is accurate.
Here are a few tips to help you screen websites and mobile applications for your use:
- For health and nutrition information, ask your doctor or health provider for suggestions. Go to trusted sources such as the U.S. National Library of Medicine or the Mayo Clinic. When reviewing a source for trusted information, check to see if a skilled professional, one who does not receive payment to promote the product or service, reviews the information.
- Check for user ratings and reviews. Look for advice from real caregivers like you. It is not uncommon for companies to hire people to write positive “reviews” for their app or service.
- Ask a trusted friend for their recommendations.
- Visit the ‘About Us’ page on a website and check out the Board of Directors and/or staff to see if they have the expertise and knowledge on the information you’re seeking.
- Before downloading an application, carefully think about what you want it to do and how it can complement what you are already doing off-line. It may be a great app for your neighbor but not right for your situation. Does the app solve a caregiving problem or meet a personal need to take care of you? If not, don’t bother.
- Test the app before committing to paying a fee. You can do this by downloading a free or trial version first.
- Seek out tools that work for you. Good signs are: simple installation, ease of use, regular updates for information accuracy and tool improvement. Try to avoid those that barrage you with advertising or demand too much access to private information in exchange for using the tool.
Types of Caregiver Applications and Websites
As mentioned in the chart above, not all apps work on all devices; they are dependant on the device and service plan. Once you buy a device―whether mobile, tablet, laptop or dektop―you are limited to the mobile operating system (OS) or “platform” that runs on that device. The major systems currently available are Apple, Android, Microsoft and Blackberry. When reviewing the types of applications and websites below, remember to search on the manufacturer’s website for compatability with your device and platform (or on the platform-specific store, such as iTunes for Apple devices, and Google Play for Android devices).
Coordinating Care: Need a place where family, friends and neighbors can go to find out how they can help you with caregiving? Post information for people to stay updated about life and care issues? Offer a calendar where members of your group sign up to provide transportation to doctor appointments or come by for a visit and more? Examples: https://lotsahelpinghands.com/, Tyze.com.
Managing Appointments and Tasks: These applications allow multiple people to: maintain a single calendar color-coded by user, assign and coordinate tasks, establish a list of what needs to be done and notes for the status of a given project or event. Examples: Google Calendar.
Medication Management: When faced with multiple prescriptions and over-the-counter medications, remembering when to take what pill when and with what can be confusing at best. These applications often include pill identification tools such as the FDA Drug Database, medication scheduling trackers and reminder alarms―all personalized to fit your requirements. There are even apps for the person who needs an incentive to adhere to their medication regime, employing the use of prizes, fun games, and educational tips. Examples: PillBox (National Library of Medicine), MedMinder.
Personal Health Record Tracking: Keeping track of your health, the health of the person your care for and possibly the health of children and spouse in your family are important. These apps offer secure tools to protect privacy, offer strategies to organize personal health records, and often include a way to record symptoms and keep track of test results and diagnoses. They can track hospital visits, immunization dates, maintain insurance records, and provide health-related alerts. There is even a tool to suggest questions for a doctor’s visit and then record the visit (with the okay of your doctor of course), to help remind you what was said and to share all or part of this with other key family members who were unable to attend the appointment. Examples: Mayo Health Manager, WebMD Health Manager, genieMD.
Social and Emotional Support: Caregivers all too often feel alone and isolated. Forty percent to 70 percent of family caregivers have high-risk symptoms for depression. Of these caregivers, one quarter to one-half meet the diagnostic criteria for major depression (Zarit). Communities of caregivers are available online and by mobile phone 24 hours a day to listen and to provide much needed encouragement. Examples: Strength for Caring – CareConnector, PTSD Coach, Alzheimer’s Association (https://www.alz.org).
Meditation and Spirituality: Sometimes a physical respite from caregiving isn’t always possible. You may find yourself with a mere 10-15 minutes to yourself on a particularly stressful day of caregiving―not long enough for a hot bath, perhaps, but enough time to calm your mind with an audio-based app playing nature sounds, soothing music or a repetition of mantras or chants. Whatever works to calm your mind, can certainly work on calming your body. One popular place to listen to music and sounds online is Pandora (both a website, www.pandora.com, and an app), an online radio site that allows users to type in an artist, genre or composer to build their own personalized radio station. Examples: At www.Pandora.com, try “Nature Sounds Radio.” Also, Meditation Oasis has iPhone/iPad apps like “Simply Being – Guided Meditation for Relaxation and Presence.”
Information & Education: Caregiver information classes are now being offered by webinar. Webinars are seminars where you can listen to a live presenter by phone or through the speakers on your computer while watching their visual presentation on a computer screen. Typically, these sessions offer time during or after the presentation for you to ask questions and make comments just as you might during an in-person class. Examples: Look for announcements about upcoming webinars on trusted websites such as the Family Caregiver Alliance website (www.Caregiver.org), the Alzheimer’s Association website (www.alz.org), and AgingCare.com.
Safety: What if you could set up two mobile devices that communicated with each other? One might be on your smart phone and the other installed safely on your loved one―in their shoe or on the back of their belt to help locate them should they become lost due to severe memory loss. This is now possible with GPS devices that can be programmed and personalized for your situation. For long-distance caregiving, programmable webcams and video conferencing might offer you and your loved one reassurance and peace of mind, just being able to see each other, or provide early warning if something doesn’t look right. Examples: Family Locator – Find my Family and Friends (iOS) (also available for Android), Life360, Skype, Google Chat.
Exercise and Nutrition: Mobile applications are making it easier for you to have a few more minutes to take care of you. Staying in touch by mobile phone allows you to go for a walk while you neighbor sits with your husband who has dementia. With an application that provides a selection of simple healthy meals, suggestions each morning help you decide what to make for dinner. You can also order your groceries online if you can’t make it to the grocery store for a few days. Examples: My Fitness Pal, Pedometer apps, AllRecipe.com, SpecialFork (app).
Shopping for Goods and Services: If caregiving responsibilities keep you close to home much of the time, secure websites allow you to do your errands and shop for needed items online any time, day or night. Now more and more people are taking care of banking, bill-paying, clothes and appliance shopping, refilling prescriptions, movie and book purchases, and much more online. Examples: all major banks and credit unions; Amazon.com; Overstock.com, Zappos.com
Entertainment & Brain Games: Caregivers who experience chronic stress may be at greater risk for cognitive decline including loss in short-term memory, attention and verbal IQ. (Vitaliano) Finding time for entertainment―playing e-Scrabble with your niece across country or trying some of the free games available online can both engage your brain and add some enjoyment to your life. Examples: Words With Friends2, AARP Free Brain Games, ScrabbleGames
Next Steps
- Do a search online to read about the kinds of tools you are interested in (customer reviews can be invaluable), before going to an app store.
- Ask friends what websites or apps they find particularly useful.
- Visit a store where they sell electronic devices such as mobile phones. Ask a customer salesperson to guide you in testing the tool. Find out what type of follow-up help and free training they offer. For online tools and applications, search the internet or visit the e-marketplace found on your phone to try the tool and read ratings from other users.
- Seek out a family member, friend or service to provide technical assistance should you need it to get up and running or if you can’t make your device do what you want it to do.
While there is a learning curve for some of these applications and programs, many people just like you find that their lives are improved and their isolation is reduced when they use technology. So we end with these short words of advice: Go ahead, give it a try! . . . You have everything to gain!
Credits
Digital Differences (April 2012) (Pew Internet & American Life Project) https://pewresearch.org/pubs/2240/internet-adoption-digital-online-broadband-mobile
e-Connected Family Caregiver Study (2011) https://www.unitedhealthgroup.com/content/dam/UHG/PDF/2011/UHC-NAC-eConnected-Family-Caregiver.pdf
Finding Answers Online in Sickness and in Health (2006) http://pewresearch.org/pubs/ 220/finding-answers-online-in-sickness-and-in-health
Family Caregivers Need Access & Training on Assistive Technology (Family Caregiver Alliance Blog (originally featured on Disability.gov Blog), K. Kelly, December 2011) https://www.caregiver.org/family-caregivers-need-access-training-assistive-technologies
The Social Life of Health Information (2011) https://pewresearch.org/pubs/1989/health-care-online-social-network-users
Vitaliano, P.P., Echeverria, D., Yi, J., Phillips, P.E.M, Young, H. & Siegler, I.C. (2005). Psychophysiological mediators of caregiver stress and differential cognitive decline. Psychology and Aging, 20:402-411.
Zarit, S. (2006). Assessment of Family Caregivers: A Research Perspective. In Family Caregiver Alliance (Eds.), Caregiver Assessment: Voices and Views from the Field. Report from a National Consensus Development Conference (Vol. II) (pp. 12-37). San Francisco: Family Caregiver Alliance.
RESOURCES
Family Caregiver Alliance
National Center on Caregiving
San Francisco, CA 94103
(415) 434-3388 | (800) 445-8106
www.caregiver.org | info@caregiver.org
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.
FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.
For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s and other debilitating health conditions that strike adults.
Additional Resources:
US National Library of Medicine
https://www.nlm.nih.gov/mobile/
US Dept. of Health & Human Services
https://health.gov/myhealthfinder
Accessibility Guide for Boomers
https://www.microsoft.com/en-us/accessibility/
Exercise & Physical Activity: Your Everyday Guide from The National Institute on Aging
https://order.nia.nih.gov/publication/exercise-physical-activity-your-everyday-guide-from-the-national-institute-on-aging
CareConnector: Patient Engagement Tool
https://www.mtbc.com/products-services/patient-engagement
PTSD Coach
https://www.ptsd.va.gov/public/pages/ptsdcoach.asp
Next Avenue
Website focused on the 50+ viewing audience of public television stations across the country.
https://www.nextavenue.org/
This fact sheet was written and prepared by Family Caregiver Alliance. Reviewed by Marie Jobling, Executive Director, Community Living Campaign. Funded by the San Francisco Department of Adult and Aging Services. © 2012 Family Caregiver Alliance. All rights reserved.