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    Dementia Symptoms & Caregiver Strategies: Helpful Care Sharing Web Tools and Smart Phone Apps

    Web Tools

    Lotsa Helping Hands: http://www.lotsahelpinghands.com/
    When people rally to help someone in their family or community, Lotsa Helping Hands is a great tool making it easy for each person to know what to do and when. Their easy to use Help Calendar is a free, personalized online tool to organize family and friends who want to help with caregiving. It enables family members or caregivers to schedule and sign up for tasks that provide caregiver support including meals for the family, rides to medical appointments, and visits. Caregivers can post tasks that require help so volunteers can easily see what's needed. In addition, regular reminders are sent to volunteers so that no one forgets their commitments.

    A designated organizer sets up an account and schedules needs for meals, help driving to appointments, etc., on a calendar. Special dietary requests can also be noted. This can then be sent out by email to a list of volunteers. Volunteers then sign up for dates that work for them and an email reminder is sent several days before their sign-up date. For meal planning, volunteers can include what they're making, so others can plan accordingly (e.g. your mom won't get lasagna three days in a row).

    Alternatively you can sign up through the Alzheimer's Association Care Team Calendar which is powered by Lotsa Helping Hands: http://www.alz.org/care/alzheimers-dementia-care-calendar.asp.

    Care Calendar: http://www.carecalendar.org
    Similar to Lotsa Helping Hands, CareCalendar is a free web based system to organize meals and other help for families during a time of illness or life changing event. CareCalendar can also be used for long term situations, including homebound and caregiver respite care needs. Coordinate meal sign up, and other needed assistance, without the frustration of making dozens of phone calls. The volunteer helpers can see the needs and sign-up for items that fit their schedule.

    Using CareCalendar you can reduce the amount of time needed to coordinate the effort. Volunteer Helpers can access the CareCalendar when it's convenient for them. No need for phone tag or explaining the needs over and over again. Helpers can see what is needed and when (meals, rides to doctor appointments, yard work, activities) and sign themselves up to fill the need. CareCalendar sites are created specifically for each recipient with personalized features and information.

    Volunteer Spot: http://www.volunteerspot.com
    Similar to the above sites, Volunteer Spot helps an organizer set up an account and designates on a calendar what help is needed or other details. Notes can also be included on the calendar site (e.g. "Please keep meals as healthy as possible. No processed foods or sugar" or "This doctor's visit will take approximately two hours.")

    Caring Bridge: http://www.caringbridge.org/
    This site is a great way for friends and family to stay connected when a person close to you is ill. Updates on the person's progress and well-being are posted by a family caregiver and friends who join the network can respond with thoughtful posts any time of day. With the amount of work already on a caregiver's plate, sometimes they just don't have the time or energy to return well-meaning phone calls and emails. Caring Bridge makes it easy for friends to post messages and well wishes and for the caregiver and their loved one to read them at their leisure and respond when they are able. It's a way to show you're thinking about your friends without inundating a caregiver with phone calls and emails only to be disappointed when they're not returned.

    There are several other resources, including Carerunner, Careflash and Care Diary which provide similar coordination and information sharing features. In addition, there is a book called Share the Care (sharethecare.org) that describes in detail all of the different ways that friends and neighbors can help out.  Each person has a unique gift that allows them to contribute in a way that they are most comfortable. For example, someone might be a great cook; another person may have great organizational skills and be able to sort through medical bills. Yet another person may have the time to help drive their friend to medical appointments. The above tools may make it easier to maximize the time and skills of those who want to help but may not know what you need or are too afraid to ask.

    Smart Phone Apps

    Today practically everyone uses a smart phone or tablet. To support our fast paced lives, Americans are downloading mobile apps to help us track everything from our personal spending and productivity to our diet, exercise and mood. More than 44 million health-related apps were downloaded in 2012, so it should come as no surprise that apps for caregivers are a fast growing market.

    Here are seven apps that were reviewed by caregiver author, Ann Napoletan, including information about their features, the devices for which they're available, and the overall opinion of their usefulness and value. Ann is uniquely qualified to judge the merits of these apps. She is a regular contributor to the Caregivers.com blog and cared for her late mother who had Alzheimer's disease for nearly a decade. Of course every caregiver's needs are different, so don't necessarily rule out an app or count on a highly praised app to work perfectly for your individual family's needs.

    CareZone: https://carezone.com
    iPhone: Yes (free) | iPad: Yes (free) Android: Yes (free) | Web app: No

    Not only does CareZone have a number of great features but it's also free.

    • A care profile to log all pertinent information about loved one who is receiving care
    • Invite friends and families to join you and become "helpers"
    • A shareable task-list to help you keep on track
    • A shareable journal, which includes ability to log observations and upload photos to keep loved ones up to date about the elder's well-being
    • Medication tracking, "to keep a list all meds, dosages, purpose, prescribing physician, pharmacy, RX number and more."
    • File storage service so that you can share files with loved ones about elder's care
    • What's called a "CareZone broadcast" that allows you to "send a recorded voice message to up to 100 recipients."

    Pros/Cons: The app does not track medication schedules or send reminders, although those features are currently in development.

    Caring Ties: http://caringties.com/

    iPhone: No | iPad: No | Android: No | Web app: Yes (free)
    Caring Ties offers many of the features you would expect in an application for caregivers, but it's strictly a web based application rather than one designed to run specifically on your device. That means that you can access it with any modern, internet connected smart phones and tablets but that it is not downloaded from an application store. This app might be best for someone who does not have a smart phone or tablet, but can access the internet on a PC or laptop.
    • Reminders, for example, to test blood sugar
    • Note taking about loved one's well being
    • Log medical information such as blood pressure
    • Share information with loved ones, and including setting different levels of access for different loved ones
    • List of medications

    Pros/Cons: Caring Ties seems to run well on a desktop version but it was somewhat clunky when tested on an iPhone. The makers advertise the web-only factor as a benefit, noting, "Even if you accidentally spill a drink on your device there's nothing to worry about," but other apps offer both a dedicated app and in the cloud storage, so this argument is somewhat dubious.

    Balance: For Alzheimer's Caregivers: https://itunes.apple.com/us/app/balance-for-alzheimers-caregivers/id609839752?mt=8
    iPhone: Yes ($.99) | iPad: yes ($.99) | Android: No | Web app: No Balance: For Alzheimer's Caregivers is a versatile app geared specifically caring for a loved one with Alzheimer's disease.
    • Alzheimer's disease reference and information
    • Alzheimer's caregiving and advice
    • Advanced medication management features, such as refill date, start date, dosage, and so on
    • Uses the iPhone and iPad's native scheduling features, but adds categories relevant to caregivers
    • "Doctor diary" for logging symptoms and taking notes that may be relevant at the next's visit
    • News about Alzheimer's disease

    Pros/Cons: The app is useful, but some areas could use improvement. Patient profile information is limited to name, birth date, and gender, and the app lacks a contact list, sharable to-do list, and file storage capability. Also, having a companion website generally increases usability, but unfortunately a user's only window into Balance is through the smart phone app.

    Unfrazzle: http://unfrazzledcare.com/
    iPhone: Yes (free) | iPad: Yes (free) | Android: Free | Web app: no
    Unfrazzle a highly customizable and personalizable tool that could be quite helpful for caregivers. It could also be used for other productivity purposes as well. That said, it requires the user to invest some time in setup and customization to get the most out of it.
    • Create to-do list and journals
    • Track anything and everything you like (i.e. weight over time, mood, etc.)
    • Connect with other family members and share information and responsibilities
    • Highly customizable

    Pros/Cons: The app is highly flexible and makes no cookie-cutter assumptions about the user and his or her needs, but it is also quite complex and might be somewhat imponderable to less tech-savvy users. There is a steep learning curve and the user interface is less than intuitive. The app may become a stronger and more accessible tool over time.

    *The information above was compiled by Howard Hahn, MSW thorough personal clinical experience and commonly available published materials.

    Cognitive Impairment can have many causes. The patient’s doctor should be consulted to determine a specific diagnosis and treatment options. But whatever the cause, the symptoms are often alike, and the Caregiver Strategies are often similar.

    The information in the resources listed above was compiled by the Ray Dolby Brain Health Center through clinical experience and commonly available published materials. For information on additional Caregiver Strategies, go to: cpmc.org/brainhealth.