Volume 23, Number 12: December 2022
An App To Reduce The Load of Caregiving
By Romayne Gallagher
IAHPC App Reviewer
Caregiving can be a full-time job, something most people don’t understand until they are immersed. If a group of people care for one person, communication, sharing of tasks and keeping others advised becomes another layer of duties. Caring Village is a website-based system as well as a mobile app that gathers caregivers together virtually, with the goal of enhancing awareness, support, and sharing of tasks. The app works on Apple (48.5 MB) and Google (10.92 MB), and is easy to navigate and populate with information. It has a pleasant user interface, good function, and doesn’t crash.
Mike Behrmann of Virginia, USA, began the website in reaction to his experience looking after his mother-in-law with Alzheimer’s disease. “We had no previous experience, little to no understanding of the disease, and no clue about the resources available to us. Our family struggled with constant miscommunication, legal challenges, and general chaos while caring for Mom. We learned very quickly how stressful caregiving can truly be.”1
The website has a strong commercial component: the “marketplace.” It describes and recommends technology (e.g., GPS locators, at-home defibrillators, home alert systems, etc.); how to evaluate services (e.g., meal delivery, in-home care, etc.), citing providers; adaptive products (e.g., clothing, walk-in tubs, raised toilet seats, bed rails, etc.), and many more care products that may or may not be affordable. Despite the clearly commercial nature of this website section, being aware of what is out there can spark creative solutions for the multitude of issues that may arise with caregiving.
The Dashboard is the crux
The most useful part of the website and mobile app is the Caring Village Dashboard, billed as a virtual “command center” for sharing information. You can build your “village,” or care team, by adding siblings, friends, and neighbors so that you all can communicate securely in one place. Formal caregivers can be added to the group, though I can’t see this being workable for most professionals. A Care Plan documents tasks done regularly (medications, dressing changes, etc.), and a shared calendar shows upcoming appointments and any other events posted by members of the care team. To-do lists can be created and shared, allowing others to volunteer or simply be aware of what is happening.
Documents & photos can be stored
The app can be a repository of electronic documents, as well as information and contacts to aid those picking up medications or purchasing equipment to modify the home for declining mobility. The app also allows for a daily posting of how the person being cared for (“the center of the caring village”) is doing; it can store personal comments and photos. Photos could be used to track symptoms or follow the progress of wound healing. A “wellness journal” provided could also be used as a symptom tracker if the group decides on a scale to use and posts it in the comment section.
A downfall: lack of patient access
The concept is excellent but needs adapting to align with maintaining the personhood of the person at the center of the caring. The person being cared for cannot be invited to join the virtual group, unless they are called a “friend.” Thus, they cannot directly participate in rating their own well-being! I can understand that in advancing dementia, participation may not be possible, but it seems clear that a multitude of people use this app for various conditions. Oddly, depression—a very common condition—is lacking, but rare genetic conditions are listed.
Many people have insight into their own cognitive decline, and Caring Village’s ability to store photos and documents could be adapted to become a memory prompt for those with dementia who are still navigating their phones, tablets, or computers. The village is the love and support surrounding the person with the illness and that is made clear by how it is named (i.e., Jane Doe’s Village) on the Dashboard. Describing a person’s challenges as “Village conditions,” however, seems off base.
Useful for: informal caregivers
If people can overcome the impersonal aspects of the app, it could be a useful tool for an informal caregiving team struggling to communicate or set up caregiving routines. It might also serve as a way for out-of-town relatives to keep up with what is happening and contribute what they can. It is a worthwhile idea that can reduce miscommunications and share the load of caregiving.
Reference
M Behrmann, D Fogarty, B Kehr. Enduring Alzheimers: Practical Tips for Caring for Loved Ones and Yourself. Self-published, Amazon, 2019.
Dr. Romayne Gallagher, founding director of the Division of Palliative Care at the University of British Columbia, Canada, established a public forum on death and dying replicated by others in North America and Europe, and has been a palliative care consultant for more than 17 years.
Shopping with a Smile Helps IAHPC
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How to sign up for AmazonSmile by computer or mobile device:
- If you have an account, click on ‘your account’ and select ‘your AmazonSmile.’ Select International Association on Hospice and Palliative Care as your charity.
- If not, go to smile.amazon.com. Put International Association on Hospice and Palliative Care in the search bar, then select it as your charity.
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