**Online Resources Tips and Tools**

Research from the Pew Internet & American Life Project

(<http://www.pewinternet.org/pdfs/PIP_Health_Report_July_2003.pdf>)
shows that, as more Americans come online, more rely on the internet for
important health information. Pew found that 58% of those who found the
internet to be crucial or important during a loved one's recent health
crisis say the single most important source of information was something
they found online. The trend in providing online health resources is to
offer users a dynamic, interactive experience, rather than simply
providing a list of offline resources.

Those seeking to find or share information on Alzheimer's disease are
increasingly finding more options. Persons with Alzheimer\'s, caregivers
or other health professionals are using online resources that can be
accessed 24 hours a day, seven days a week.

This Toolkit is designed to introduce ADDGS grantees to dynamic
(interactive) online resources for the Alzheimer community. It presents
information in two sections. These sections are:

-   [Examples of dynamic online resources with ADDGS project
    examples](http://www.aoa.gov/alz/Public/alzabout/news/volunteer-respite.asp)

-   [General principles for establishing and sustaining online
    resources](http://www.aoa.gov/alz/Public/alzabout/news/volunteer-respite.asp)

The resources and principles presented come from the direct experience
of ADDGS grantees. They are the collective products of the ADDGS Online
Resources Webcast participants.

[**Examples of dynamic online
resources**](http://www.aoa.gov/alz/Public/alzabout/news/volunteer-respite.asp)

**1. Online Training for Rural Caregivers (NV)**
[www.nevadacaregiver.org](http://www.nevadacaregiver.org/)

> The Nevada Caregiver Support Center designed this web-based program
> for instructing rural caregivers in restraint free methods of care for
> persons with dementia. The module-based training is designed to be
> interactive in order to increase the likelihood that participants will
> retain the information. There are pre-programmed \"probes\" within the
> course in order to assess the participant\'s ability to apply the
> information to a novel situation. 
>
> The goal of the program is to train caregivers in general principles
> of restraint free care and the application of the principles to
> specific problems (e.g., aggression, resistance to care, etc) in order
> to increase use of restraint free care and access to specialized
> training for caregivers in rural communities.

**2. Message Boards and Chat Rooms (Alzheimer's Association)**

<http://www.alz.org/login.htm>**\
**

> Most caregivers surveyed by the Pew Internet & American Life Project
> preferred an online forum that provides disease-specific insight. The
> Alzheimer's Association Online Community provides a number of forums
> for caregivers, persons with memory loss, and health professionals.
> Users can ask questions of care consultants, share stories, read news,
> and find out more about medications and treatments.

**\
**

**3. CareFinder (Alzheimer's Association)**
<http://www.alz.org/carefinder/index.asp>

> **\
> **Need to find good care in your community? Online since Spring 2006,
> this interactive tool provides users with recommended options and a
> list of questions to ask when screening a care provider. The
> CareFinder asks for information about a person\'s needs, abilities and
> preferences. After entering the requested information, users receive a
> personalized printout. The printout offers recommended care options
> and questions to ask when screening a caregiver or facility. It also
> provides links to local area Alzheimer\'s caregiver resources based on
> user-specified needs.

**4. Comprehensive Center on Alzheimer\'s Disease (VA)**
[www.AlzPossible.org](http://www.AlzPossible.org/)

**\
**

> The Virginia Alzheimer's Commission pioneered a statewide online
> Alzheimer's disease community of patients, caregivers, researchers,
> healthcare professionals, etc. Its AlzPossible.org website showcases
> the project's mission, objectives and accomplishments. It also hosts a
> virtual workspace for statewide Alzheimer workgroups. 
>
> The private segment of the website allows statewide Alzheimer
> workgroups to communicate effectively and initiate, develop and
> implement interdependent strategies towards the accomplishment of
> their respective missions. On the public segment, the public-at-large
> is able to review, learn and provide feedback on various statewide
> Alzheimer initiatives.

**\
[General principles for establishing and sustaining online
resources](http://www.aoa.gov/alz/Public/alzabout/news/volunteer-respite.asp)\
**

This section describes successful strategies for developing a new online
Alzheimer resource. Including:

-   Creating realistic timelines

-   Pre-development research

-   Employing technical experts

-   Program Evaluation

-   Complementing online resource with offline services/ interactions

-   Maximizing Partnerships

**Establishing Online Resources\
**

1)  **Create realistic timelines\
    **

    a.  **Online resources are not an overnight success project or "off
        the shelf"\
        **

    b.  **Build in time to research, build, test, launch and evaluate
        tool\
        \
        \
        **

2)  **Invest in Comprehensive Background Research\
    **

    a.  **Define your target audience\
        **

        i.  Clearly identify who you are targeting

        ii. Use focus groups and hands-on testing with target audience

        iii. Make it practical and accessible. Seek to understand the
             challenges experienced by target audience

    b.  **Identify and test existing tools\
        **

        i.  Avoid re-creating the wheel or duplicating existing services

        ii. Contact others who provide similar services for best
            practices, template and technical assistance

    c.  **Design dynamic vs. static tools\
        **

        i.  Allow for some interactivity between user and the site

        ii. Allow users to set preferences regarding what kind of
            information will be displayed

        iii. Combine illustration with text to hold user's attention

    d.  **Use simple language\
        **

        i.  Identify terminology using the "lowest common denominator",
            or most simple language

        ii. Use easy to grasp concepts, short sentences and define
            technical terms

**\
\
**

3)  **Employ technical experts.** Examples of qualified experts
    include:**\
    **

    a.  **Information architecture specialists\
        **

        i.  Create a logical navigation structure. This allows users to
            find and read the content they want quickly and easily.

        ii. Design site so users always know where they are in the site,
            and provide them with the proper context for the information
            they are reading.

    b.  **Health literacy experts\
        **

        i.  Help to guide language choices. Identify and define words
            that users may not understand.

**Sustaining Online Resources\
\
**

1)  **Build a program evaluation component\
    **

    a.  **Identify specific outcomes** expected from the resource and
        evaluate progress toward those outcomes on a regular schedule**\
        **

    b.  **Re-question and recalibrate** the audience, language and
        content, regularly**\
        \
        **

2)  **Complement online resource with offline services/ interactions.**
    Examples include:

    a.  **In-person meetings** with online workgroup members **\
        **

    b.  **Phone consultation** to provide private, individualized
        support**\
        \
        **

3)  **Maximize your partnerships\
    **

    a.  **Free or reduced consultation services** may be available from
        outside partners

    b.  **Universities and community colleges** can be a great technical
        resource

**Contacts**

**[\
]{.underline}**

**Online Training for Rural Caregivers**

[www.nevadacaregiver.org](http://www.nevadacaregiver.org/)

Developed with funding from the NV ADDGS Grant

Jane Fisher, Ph.D.\
Nevada Caregiver Support Center\
Professor, Clinical Psychology

University of Nevada, Reno\
Phone: (775) 784-6828 x2052\
<fisher@unr.edu>

**Message Boards and Chat Rooms**

<http://www.alz.org/login.htm>\
Developed with funds from AoA

Beth Kallmyer

Alzheimer\'s Association National Office\
225 N. Michigan Ave., Fl. 17\
Chicago, IL 60601\
Phone: (312) 335-5708

<Beth.Kallmyer@alz.org>

**CareFinder**

<http://www.alz.org/carefinder/index.asp>

Developed with funds from AoA

Liz (Heck) Gould

Alzheimer\'s Association National Office\
225 N. Michigan Ave., Fl. 17\
Chicago, IL 60601\
Phone: (312) 335-5728

<Elizabeth.Heck@alz.org>

**Comprehensive Center on Alzheimer\'s Disease**

[www.AlzPossible.org](http://www.AlzPossible.org/)

Developed with funding from the VA ADDGS Grant

Nico Stanculescu

World Events Forum, Inc.

5030 N Marine Drive, Suite 2608

Chicago, IL  60640, USA

Phone: 773-784-8134

<nico@worldeventsforum.com>