Tools for Caregivers: How journals can help

Last month, as I was preparing to present a talk at a Family Caregiver Alliance retreat, I spent some time looking into tech tools to recommend to caregivers.

As you might imagine, there are many apps and programs to consider, and I quickly realized that it wasn’t going to be possible to review everything that’s available.

So instead, I decided to start by thinking about my patients and families, and trying to identify a few key areas in which I’d seen tools and organizational strategies really help caregivers better manage an older person’s health needs.

I came up with four key categories of tools that I’ve recommended to families:

• Journal/notebook, for notes and symptom tracking
• Portable and up-to-date medication list
• Organizer to keep copies of medical results and medical records
• Personal/family task organizer

In this post, I explain how a journal can help caregivers with the medical parts of their caregiving. Then I’ll describe a few tech tools that caregivers might want to try.

Why Caregivers Should Use a Journal

The main reason to use a journal is to keep track of information as things happen. You could, of course, keep track of things in your head and Pew recently found that this is what many people do! But if you start using a journal to keep track of things and remember things, you’ll probably feel less stressed. Plus, the information will be more accurate, and can be easier to share with other family members and a care circle.

Here are some specific examples of information that I recommend caregivers track in a journal:

• Symptoms that worry you and that you want to ask a doctor about. This is probably the number 1 thing I wish caregivers would take notes on, because when a caregiver has gathered some information about a concerning symptom, it’s much easier for me to be helpful during the clinic visit. (Most of the time, they’ve been tracking in their head, and we end up agreeing that they’ll take notes and bring me more information at the next visit.)
  • Examples of symptoms that I’m often asked to help with:
    • falls, sleep problems, pain, fatigue, incontinence.
  • What caregivers can track:
    • Most useful is how often it happens, how bad it is, and whether there seems to be any trigger or pattern. But jotting down any information is helpful.
• Listing concerns & questions before each medical visit. It’s very helpful when a patient or family comes to a visit with a list of concerns and questions. Now, it’s often not possible to address everything on the list in a single visit, but seeing the list allows me to start the visit by asking the family to highlight their highest priorities, and then we can set a little agenda for what we’ll get done (and when we might address the other items).
  • If you come to visits with a prioritized list, or having identified your top 3 concerns, this is a big help.
• Taking notes during a visit. These days doctors are often required to provide patients with a written summary of the visit. But there’s no guarantee that this summary will contain all the useful information that may have come up during the visit, so I still recommend that families try to take notes if possible.
  • Especially important is to write down “Action items” or “Next Steps.” This will ensure that the doctor has been clear about what it is that a family should do next.
    • For instance, in my practice I might ask a family to try timed toileting, or to really track how often the older person experiences back pain.

Tools Caregivers Can Use to Journal

What should a caregiver use as a journal for medical issues? It really depends on the caregiver. The key is to find something that is easy to use often, preferably on a daily basis. Beyond that, different options offer different features and advantages.

Here are some options that we discussed at the caregiver retreat:

• Pen and paper. For many people, a spiral notebook and a pen are what is easiest to use.
  • Pros: Inexpensive, easy to bring into visit, easy to enter information.
  • Cons: Information only in one place, so harder to share with care circle. Notebook can be lost.
    • Also, handwritten information is not searchable, although in truth I’m not sure caregivers and doctors have reached the point at which they want to search in the same way that many of us now search email.
• Computerized notes. At the retreat, some caregivers reported using Word, and one said she was using Evernote.
  • Pros: Often easy to use. Can be backed up and shared through cloud-sync services such as Google Drive, which also usually allows access from smartphones and mobile devices.
  • Cons: May not be encrypted; may be less secure than services developed specifically for health information. Also, it’s often hard to digitally take notes during a medical visit.
• New tools for health information and/or caregivers. Several apps designed for caregivers are now available.
  • Pros: May be a better fit for the needs of caregivers
  • Cons: Tools are evolving and changing quickly. May have a learning curve. Deciding on a tool may feel a bit overwhelming for a busy caregiver. Not yet clear where one can find lots of reviews from other family caregivers. Can be challenging to get other family members to start using a new tool.
  • Some new tools caregivers might try (all allow sharing with care circle):
    • Unfrazzle: iOS only, designed specifically for needs of overwhelmed caregivers, allows user to create customized journals that can help track a symptom or remind a caregiver to do something
    • Balance: iOS only, designed specifically for Alzheimer’s caregivers. Has a section allowing caregiver to log yes/no answers regarding certain common symptoms in Alzheimers, and so can generate a behavior/symptom log which can be emailed to someone.
    • CareZone: available via web browser, and also on both Android and iOS. Includes a journaling section.

In preparation for the caregiver retreat, I tried all three apps listed above. For me personally, I liked CareZone the most, but that’s largely because I really like having a web interface. I find that access a tool through the web browser, instead of just via smartphone, makes it much easier to enter information, and allows one to view things on a bigger screen.

But in the end, I think caregivers will be better judges of apps than doctors will be. It’s the caregiver, after all, who will need to find apps and tools useful. All we doctors can do is explain what kind of information we need, in order to provide medical help that improves life for the patient and family.

If you’re a caregiver for an older person, what tools do you use for keeping track of notes, symptoms, observations, and questions for the doctor? Have you tried any of the tools listed above?