**Getting a Place at the Table**

**Creative Strategies for Improving Dementia Care**

**and Sustaining ADDGS Initiatives**

**By**

**Anne Tate**

***Background:***

***In 2006 the U.S. Administration on Aging (AoA's) Alzheimer's Disease
Demonstration Grants to States(ADDGS) program's National Resource
Center's Technical Assistance Center organized two regional meetings for
program directors and partners. One took place in Charlotte, NC, in
early May and another in Denver, CO, in mid-June. The meetings centered
around three main themes: making state system change efforts
dementia-friendly, making health-care systems responsive to people with
dementia and their caregivers, and sustaining grants' most worthy
elements. This article summarizes the meeting's key findings.***

**Introduction**

Across the country, social-service agencies, Alzheimer's Association
chapters and other organizations that participate in the U.S.
Administration on Aging's Alzheimer's Disease Demonstration Grants to
States (ADDGS) are coming up with innovative strategies to achieve their
collective goal: helping people keep their loved ones with Alzheimer's
or related disorders at home. To do this, ADDGS grantees often have to
be the instigators, finding ways to influence state legislatures to
ensure that state systems changes focus on developing community and
home-based care and that Medicaid-eligibility standards include people
with dementia.

In addition to getting government gatekeepers to hear their message,
ADDGS grantees and their representatives have to reach out to physicians
and other medical professionals, many of whom are reluctant to diagnose
Alzheimer's disease -- either for lack of knowledge or time. They must
help to facilitate proper testing, follow-up and referrals, all of which
are essential to improving Alzheimer's care in this country.

Finally, because grant periods are three years without guarantee of
renewal, ADDGS grantees cannot be complacent. They must constantly be
looking for ways to sustain the programs that people with dementia and
their caregivers have come to rely upon. They have to make their cause
heard in an increasingly competitive philanthropic marketplace, a feat
that requires incredible innovation, resourcefulness and persistence.

In many cases, the key to achieving all of the aforementioned goals is
building new coalitions and relationships with legislators, advocacy
groups, medical professionals and community organizations. As Diane
Braunstein, the director of the AoA's ADDGS National Resource Center's
Technical Assistance Center, said, "Sometimes you can do things in
partnerships that you could never do alone."

**Making State Systems Change Dementia-Friendly**

Although keeping Alzheimer's and dementia patients out of nursing homes
saves states money, it's often a challenge for state agencies to get
legislators to make home and community-based care a priority. In 2004,
Medicaid expenditures for institutional long-term care services were
almost twice as much as for community-based services. For Alzheimer's
specific care, Medicaid spent almost three times as much for
institutional care as for community-based services. And, unless a cure
is found, the cost of Alzheimer's care is only going to grow, as the
United States will see a huge increase -- an average of 44 percent -- in
incidence of the disease during the next 20 years. Still, state
governments can be resistant to change in their systems, because doing
so requires spending money up front to prevent nursing-home placement.

"Just keeping somebody out of the nursing home for nine months, it will
save the state so much money," said Janice Price, the project director
for the grant at the Nebraska State Unit on Aging and an attendee at the
western regional meeting. "But (it requires) beefing up the services in
the home, and that's the hard sell."

In Washington, however, the very fact that nursing-home care is so
expensive was part of the impetus for state systems change. The state
was having budget problems, and, at the same time, advocates for
long-term-care consumers were lobbying the legislature for more home and
community-based care options. "(It was) a bold move to say we wanted to
reduce the nursing-home census," said Kathy Leitch, a presenter and the
assistant secretary for the Washington Aging and Disability Services
Administration. But, she pointed out, the earlier system had an
institutional focus, and a lot of people -- whether they were elderly or
disabled -- did not want nursing homes to be their first and only
choice.

"From a consumer viewpoint, it was good to get more home and
community-based options," Leitch said. Washington started specialized
training programs for dementia caregivers, expanded respite and
family-caregiver services, and put together a cash-and-counseling
demonstration, among other initiatives. As a result, more clients with
dementia are being served in home and community-based settings, and the
state's expenditures on Medicaid long-term-care in nursing homes has
decreased from 82 percent in the 1991-93 to 45 percent in the 2005-07
biennium.

![](media/image4.wmf)*Presented by: Kathy Leitch, Washington State Dept
of Social and Health Services Aging and Disability Services
Administration*

Leitch acknowledged the importance of partners in their effort to affect
systems change. She said that the state's senior citizens' lobby played
a role in molding the overall policy discussion in the 1990s, when the
policy change was in its early stages. And, more recently, Leitch said,
the state's long-term-care ombudsman, AAAs, and Alzheimer's Association
Chapters have done a great job keeping the topic on the legislature's
radar screen. Even if they don't ask for big dollar amounts, she said,
incremental changes can add up and keep the issue alive. And keeping
requests small might increase the chances of getting something from
legislators.

Joan Senecal, the deputy commissioner at Vermont's Department of
Disabilities, Aging and Independent Living, also emphasized
coalition-building as an effective tool for changing state systems from
within and making sure the needs of people with dementia are being
recognized.

"Find people who share your passion," Senecal said. She advised ADDGS
grantees and project directors to "get yourself a place at the table, no
matter where it happens to be set."

In 1996, Senecal's department worked to persuade state legislators that
entering a nursing home should not be the sole choice for those needing
long-term care. The department wanted to see Vermont, which is
considered an aging state, put money budgeted for nursing-home Medicaid
expenditures -- but that was not being used -- toward home and
community-based care. By finding advocates in the legislature and in the
community, such as the AARP and Area Agencies on Aging, Senecal and her
colleagues were able to "shift the balance" of funding for long-term
care in the state. As a result, Vermont has had a marked increase in use
of Medicaid waivers for home and community-based care, and nursing-home
placement has decreased. Public expenditures on nursing-home care in the
state have dropped from 88 percent in 1996 to 68 percent in 2005, while
the percentage being spent on community-based services has gone up.

After the department was able to build more home and community-based
care options through the "shifting the balance" legislation, the
department pushed for state legislation and an 1115 federal
demonstration waiver to ensure that those eligible for Medicaid
long-term care were given a choice between institutional and home and
community-based care, without changing the nursing home level-of-care
criteria "It shouldn't make a difference what you want," Senecal said.
"You shouldn't have to wait."

Natalie Kelly, the director of public policy for the Florida Alzheimer's
Association Chapter, also emphasized the importance of
coalition-building and finding advocates. Not only do these
relationships help your agency or department gain credibility and power,
she said, but they help build a rapport with the community. The purpose
of partnerships is to educate and "to listen to the individuals we
serve," Kelly said. She urged project directors to be proactive, get
informed and target key players in order to create these key
relationships. "Go to the obvious first," Kelly said, "Then go to the
not-so-obvious," such as the sheriff's association. She gave a list of
tips for making the most out of community contacts, recommending that
directors and representatives be focused and assertive, that they pick
their battles carefully, and that they don't take things personally.
Above all, she said, being passionate about a cause attracts partners.
"If you aren't fired with enthusiasm, you will be fired with
enthusiasm," Kelly said, sharing a quote by coaching icon Vince
Lombardi.

Another way to engage state legislators and to convince them to include
home and community-based care in their agenda is to prove you can put
their money to good use. Carroll Rodriguez, the state policy director
for the Missouri Coalition of Alzheimer's Chapters, said that they
experienced a kind of snowball effect after they successfully
implemented some much-needed programs with their grant money. "I think
the ADDGS dollars enabled us to do some projects we would never been
able to do otherwise, and we were able to show the state we could do a
good job with the money," Rodriguez said.

Their grant focused on reaching individuals that were in the early
stages of memory loss, introducing them to community-based services and
showing them how to take advantage of those resources. The second
component was aimed at security -- training law-enforcement officers and
getting people with memory loss to register for Safe Return®. Lastly,
the grant helps families with respite and hospice assistance for people
in the late stages of Alzheimer's disease. "We are really administering
programs that people can't access through Medicaid," Rodriguez said. She
said that they were able to show the state legislators the importance
and success of these initiatives and twice get them to increase state
budget appropriations for their programs. Rodriguez hopes this is a sign
that they have changed the mindset of some legislators and have educated
them about choices for long-term care.

While Rodriguez acknowledges that the ADDGS grant money enabled this to
happen, she said that it took a lot of work and initiative on the
coalition's end. "We were very proactive about going after this money,"
she said. "We set up meetings with key legislators who have the
influence to make that happen."

**State Systems Changes: Looking beyond the Legislature to ADRCs and
Medicaid**

Another strategy to ensure that memory-care becomes a part of state
systems is to hitch your wagon to an existing organization that has a
steady stream of funding. Donna Walberg, the ADDGS project manager for
the Minnesota Board on Aging, pointed out that there's nothing wrong
with using other people's money to complete your agenda. This is what
they did in Minnesota, and it worked. "If it was there and it had money,
we were there," Walberg said. Minnesota's Alzheimer's Demonstration
Project joined with the federally-backed Aging Disabilities Resource
Centers (ADRCs) in their state and helped them add memory-care
assessment to their operations.

![](media/image4.wmf)

As part of their efforts, the Alzheimer's Demonstration Project in
Minnesota worked with the centers to train staff for a telephone
help-line for seniors (the Senior Linkage Line has a call
infrastructure, and the Alzheimer's project representatives have
embedded memory-loss ID questions in the questioning path), an online
consumer and caregiver tool that identifies memory loss and a
memory-care Web site.

Walberg said another great thing about the ADRCs is that they have
physical locations. In fact, the centers are often first points of entry
for many people seeking long-term care. By working with these centers,
the Minnesota Board on Aging is able to identify people with dementia
earlier and refer them to health-services organizations, such as
physicians, clinics and hospitals. "If you get people earlier, that's
when you can make the most difference," Walberg said. On the flip side
of the coin, the ADRCs appreciate their relationship to the Alzheimer's
project because it gives them connections to health-care providers.
"It's a win-win," she said.

She also emphasized that it's not only important to find partners, but
to make the most of those partnerships. You don't just want to sell them
on your practices, she said, but you want them to own and perpetuate
your practices. "The whole philosophy is that we don't create new
systems, we embed memory-loss identification and care pathways in
existing systems, whether it's the ADRC or county long-term-care
assessments," Walberg said. "When we go away, all those practices will
still be there."

Walberg gave project directors some tips for making friends with their
local ADRCs, which now have locations in 44 states. "The stuff you do
with the ADRC is so easy; they're sitting right there. And they are
connected to the ultimate payer source -- the Centers for Medicare and
Medicaid Services." She said it's important to meet team manager-to-team
manager, to provide some funding, to do the background work and to
publicly recognize their support. "They're now proud of the fact that
they're dementia-capable," she said of the ADRCs in Minnesota.

Also key for getting essential services to people with dementia is
ensuring that their needs are recognized by state Medicaid
long-term-care standards and criteria. Jane Tilly, director of Quality
Care Advocacy for the Alzheimer's Association, talked to project
directors about things that states should take into account when
assessing whether a person qualifies for nursing-home level of care.

She highlighted the unique difficulties people with dementia have with
Activities of Daily Living (ADLs) and Instrumental Activities or Daily
Living (IADLs), such as the need for physical and verbal cuing, the need
for special supervision with such activities as managing finances and
cooking, and specific behavioral symptoms, such as combativeness. "A
person may need care 24 hours a day, but the state won't provide it
because the state's not measuring those things," Tilly said. She added
that states use different standards for determining eligibility for
long-term-care waivers, often giving physical disability more weight.
She advocated for states to come up with a comprehensive definition of
ADLs and to avoid using mental status exams as a factor in eligibility.
"It's a screening tool, but doesn't tell you whether a person's having
trouble managing on their own," Tilly said.

She then gave some examples of states that have incorporated
dementia-specific criteria into their Medicaid-waiver assessments.
Colorado, for instance, expanded the definition of the toileting ADL to
include keeping yourself and your environment clean. And in Florida,
they added medication management to their criteria.

**Making health-care systems dementia-friendly**

In addition to breaking down legislative barriers, ADDGS grantees and
dementia-care advocates have to work to overcome resistance from
physicians and nurses. Health-care professionals have the potential to
be crucial sources of information for the patient, but many of them do
not want to or cannot diagnose Alzheimer's for a variety of reasons.

![](media/image5.wmf){width="3.058333333333333in"
height="2.2993055555555557in"}

*Presented by: Sheryl Pfliger - NDDHS Aging Services Division*

*Trisha Skajewski - Alzheimer\'s Association Minnesota-North Dakota*

First, many health-care providers do not spend enough time with patients
to properly identify memory-loss problems. Most doctors' visits last 15
minutes or less, which is not long enough to assess dementia-related
behaviors, such as a need for cueing or for supervision with ADLs and
IADLs. Trisha Skajewski, the family services manager for the
Minnesota-North Dakota Alzheimer's Association, said she knew of a
neurologist who said he spent as little as seven minutes with patients.
In addition to lack of time, many doctors do not have the proper
diagnostic tools to pick up on dementia. It's difficult to assess
symptoms, as that often involves knowing how a person spent their day
(for example, finding out whether a person was able to cook and eat
breakfast.)

Others simply do not know enough about Alzheimer's and dementia or are
too intimidated by the volume of information on the subject. At the
eastern regional meeting, Barbara Lawrence, a senior outreach specialist
at the University of Wisconsin Medical School, gave a statistic that
illustrated the overwhelming amount of information that's available to
physicians; she said that it would take 627.5 hours a month to read all
of the relevant articles on dementia and Alzheimer's care.

But regardless of whether doctors or primary-care physicians (PCPs) are
informed about the disease, many of them have defeatist attitudes about
the disease. At the western regional meeting, Kate Gordon, a technical
assistance specialist at the AoA's ADDGS National Resource Center, told
a story about a doctor who rejected the suggestion that he go into the
field of gerontology, saying "there's no cure" for problems associated
with aging. Lawrence pointed out that many health-care professionals
think Alzheimer's disease is "part of normal aging," that "medicines
don't work," and that there's "nothing you can do, anyway."

In addition, health-care providers are often unable or unsure of how to
handle the multiple needs of patients and their families, as most
caregivers need some assistance and direction. Skajewski talked to a
nurse who had gotten a call from a family member requesting extra help,
and the nurse did not know what to do. Skajewski suggested the nurse
refer caregivers to the Alzheimer's Association, and the nurse responded
incredulously, saying, "You mean I can do that?"

There are several strategies state agencies and ADDGS project
representatives can use to combat these service-provider prejudices and
barriers to dementia care.

"Have as many tricks in your bag as you can," said Liz Gould, the
associate director for clinical care at the Alzheimer's Association. She
and Debra Cherry, the associate executive director of the Alzheimer's
Association in Los Angeles, gave presentations at both meetings about
California's Alzheimer's Disease Management Guidelines, which were a
joint effort of the State Department of Health, Alzheimer's Association
chapters, the AoA, and the U.S. Department of Health and Human Services
to help establish a standard for dementia care in the state. To do this,
these organizations formed a workgroup aimed at creating, disseminating
and implementing comprehensive Alzheimer's care guidelines. Gould and
Cherry both said that PCPs wanted the help and support "to do the right
thing," but they were having difficulties because of time constraints
and the large volume of unsynthesized information. Not only are office
visits short, but physicians often do not have the extra hours to learn
about Alzheimer's and dementia. Cherry said that one physician told her,
"Show me how to do it (dementia assessment) in five minutes."

![](media/image3.wmf)

With these barriers in mind, the workgroup, which was made up of
health-care providers, professional and volunteer organizations, and
purchasers of health care, first came up with an evidence base --
putting together an extensive literature review of 275 articles, which
later would be updated, augmented and revised. The group divided the
guidelines into four key areas to make the information more digestible
for PCPs: assessment, treatment, patient/caregiver education and
support, and reporting requirements. When the existing literature was
inconsistent, subgroups worked on getting experts' consensus. And an
executive committee was set up to oversee the project activities and to
conduct monthly conference calls.

Once the guidelines were created, they were disseminated through the
mail and put on several organizations' Web sites. The workgroup even got
the medical board to make the guidelines a "centerfold" in their
quarterly publication. But Heck and Cherry said that the fear was that
PCPs would throw the guidelines away or not pay attention to them. The
challenge is: "How do you capture and engage primary-care physicians?"
Cherry said.

One of the ways the workgroup addressed this problem was to give
providers tool kits, which included a medical-record checklist, signs of
elder abuse, applications for the Safe Return program®. Cherry said that
getting educational acting troupes to recreate scenes from doctors'
offices was a creative, effective method to demonstrate the need for
better dementia care in health systems. And Cherry and Heck both
mentioned having caregivers tell their stories to personalize and drive
home the importance of implementing the guidelines. "Once they (PCPs)
see someone they've diagnosed or seen is being helped, that makes a
world of difference," Heck said.

Other states have used different methods to engage doctors and instigate
changes in state health-care systems. "Don't try to change the world,"
Lawrence said. "Work with interested doctors." She and Skajewski each
recommended finding physicians who already are interested in the disease
and who are willing to learn more. They said this "early majority" will
help in the education of other doctors, because professionals listen to
one another. But the first step, they said, is getting in the office
door and introducing yourself and your message.

In Minnesota, part of the physician-outreach initiative is leaving
attractive, clear and well-produced "memory care" folders with
health-care providers. The local Alzheimer's chapters actually lifted
this successful marketing idea from pharmaceutical companies. The
folders are for family members of people with dementia and include fact
sheets, warning signs, and referrals to service organizations.

Some states find a physician champion. In Michigan, PCP's and
representatives from the Alzheimer\'s Association and AAAs visit
physician offices and clinics to discuss issues and solutions in
dementia care and to introduce the importance of early diagnosis. In
this forum, doctors and office staff are able to air their concerns, and
dementia experts can provide them with advice and resources.

Iowa uses a similar approach, but with nurses. Their college of nursing
established a curriculum for training memory-loss nurse specialists. Not
only are these nurses liaisons to physicians, they are able to go into
the community, manage cases, and suggest services.

It's also helpful, just as it was with enacting state systems change, to
use existing -- and well-funded -- systems to train and educate
health-care professionals. The North Dakota Department of Human
Services, for example, takes advantage of a bioterrorism network created
and paid for by the state's emergency-preparedness division of the
health department, using it for dementia-care education and outreach.
"It's (like something) out of Star Wars," said Sheryl Pfliger, the
program administrator for the human-services department. Pfliger said
that the department got a grant to install a high-tech
video-conferencing system on the network and make it possible to
communicate via satellite at 41 locations. With these "telemedicine
lines," physicians are able to connect to one another, and the
department can hold educational symposiums for medical professionals and
patients' families. "It's very time effective," Pfliger said, adding
that sessions are often conducted during the noon hour for health-care
providers. She also pointed out that all states have these bioterrorism
networks, and it's just a matter of creating ways to use them.

**Mental-health systems: Are they dementia-friendly?**

The relationship between Alzheimer's disease and mental health remains
murky, mainly because a consensus has yet to be reached on whether
dementia should be considered a mental illness. The Alzheimer's
Association does not take a position on the matter (though it has gone
back and forth in the past), and a Surgeon General's report in 2000
categorized the disease as a mental illness. But, as Katie Maslow, the
Alzheimer's Association's Associate Director for Quality Care Advocacy
pointed out, memory loss produces some symptoms that would be considered
mental-health issues, such as apathy, delusions, and depression. Maslow
said that although the disease produces these psychological outcomes, it
also can be considered a neurological condition because of its
neurodegenerative quality. She then asked an important question: "Does
it matter?" The symptoms are real.

People with dementia often need treatment for mental-health problems,
but they rarely pursue care for several reasons. First, some of them
still believe there is a stigma associated with mental illness. Second,
the criteria for mental-health patients often do not include people with
dementia. Third, doctors already have a client overload. Fourth, there's
a lack of reimbursement for these services from Medicaid and Medicare.

Maslow said that states differ on classification, and some may code
"senility" as a problem that should be relegated to geriatric medicine.
Even local health-care providers are not consistent with their policies.
Either way, the discrepancy between physical and mental disabilities
doesn't make sense, she said.

Maslow told project directors that the first step toward integrating
mental-health care into dementia systems is doing research. Maine, for
example, did a study of mental-health care for older people. She said
it's important to understand current policies and identify potential
barriers, which often include getting buy-ins from community-health
centers, finding adequate staff time to devote to treatment, and
figuring out a way to pay for these services.

Next, Maslow recommended that ADDGS grantees look for partners in their
community and consider joint projects to start the ball rolling. Maslow
said that several states have made good efforts to work with
mental-health systems.

In Michigan, for instance, the Department of Community Health is
developing a wraparound model to serve people with Alzheimer's disease
that have behavioral problems. And Vermont has a bridge program to
provide referrals to caregivers with mental-health issues.

**Sustaining Your Grant's Most Worthy Element**

Many of the presenters at both regional meetings discussed the need to
embed dementia-care standards and practices in existing government and
health-care systems. They, too, encouraged the building of coalitions
and partnerships. The reasons they focused on these issues is that ADDGS
funding is limited to grant periods, and project directors should be
looking for ways to ensure that their initiatives can live on, even
after the grant money stops.

Another strategy for sustainability, however, is to appeal to charitable
foundations, corporations, and individuals for donations. At each
meeting, an expert in philanthropic giving talked to ADDGS grantees
about procuring funding in an increasingly competitive donor
marketplace.

Karla Williams, a principal at the Williams Group and a presenter in
Charlotte, told the audience that donors today are more sophisticated,
skeptical, and experienced and that they demand more information and
accountability. As a result, she said, those looking for funding must be
more "savvy" and able to present their case in a clear, compelling way.
To do this, she encouraged the use of written materials, electronic
messages, verbal scripts, and grant applications.

Michael Marcus, a principal with Consultants for Community Resources who
presented in Denver, said that while written materials must be
convincing, they also must be concise. The project description should
answer "the why," and there should be no more than three objectives in
any proposal. Marcus said a former co-worker of his told him, "if you
can't say what you want to do in one page -- you can't do it."

Marcus also discussed the value of "asset mapping," a process by which
an agency or organization makes a concerted effort to shift from a
needs-based paradigm to an asset-based paradigm. The key to this is to
refresh the language and the focus of written materials (i.e. changing
consumers to citizens and therapeutic vision to community vision;
highlighting capacities instead of problems). These modifications can
help others see potential partnerships as positive, mutually satisfying
and beneficial for everyone.

A well-articulated cause is useless, however, if it's given to an
organization that is interested only in other issues. Marcus said that
the first step toward pursuing good donor relationships is to do a
"force-field analysis," or to think about sustaining projects and
strategic planning. Project directors have to consider their goals,
their driving and restraining forces, and the steps to get from here to
there. When assessing the different forces out there, he said, it's
necessary to take into account the resources, vested interests,
traditions, and values of certain groups. Only then can a project
director or representative start strengthening relationships with
driving forces (or potential donors) and also initiate strategies to
overcome obstacles from restraining forces.

Williams also said that part of a grant proposal's success depends on
targeting the right donors and finding the person within an organization
who will make the best liaison. To develop a rapport with these
organizations and contacts, she emphasized the importance of cultivating
a distinct image, using a credible spokesperson, and designing an
effective communications plan. Volunteers can be great resources, too,
Williams pointed out. Not only will they help with fundraising events,
but, she said, they can be a "key influence for others to give because
they're not paid to back an organization."

![](media/image4.png){width="3.247916666666667in"
height="2.2180555555555554in"}

*Presented by: Karla Williams, The Williams Group*

After receiving funds, it's important for grantees to follow-up and show
what they did with the funds through annual report\]s, thank-you
letters, and newsletters. "Let them know how wisely you stewarded the
money they gave," Williams said, and then you can ask them for more.

Another strategy is to ask a lot of people for a little bit of money.
"The average donation check written by an individual is \$25," said
Marcus. But if a large number of people give small amounts, they add up.
Williams gave the example of the Million Dollar Club fundraiser used by
the Omaha Children's Museum and others. "If we can find 1,000 donors to
give \$1,000, then we have \$1 million," she said.

Finally, Williams said that sometimes events do not generate big
donations, but they serve another crucial function: raising community
awareness. In Wisconsin, for example, a regional Alzheimer's Association
chapter held a motorcycle race and balloon release to put the disease on
people's radar screen. Activities such as these are a first step toward
gaining community allies and volunteers and building coalitions to help
communicate the importance of a cause.

All of these tactics require a lot of work, research, and
resourcefulness on the part of the project directors, but they are
essential to making programs sustainable.

**Sharing sustainable elements**

At each of the ADDGS regional meetings, representatives shared their
program's "most sustainable element." The innovative ways in which ADDGS
grantees used their funds varied widely, from Virginia's "Granddriver"
program to "memory cafes" in Colorado. But they all had one element in
common; innovation. Indeed, innovation and creativity has helped many
states use their ADDGS money effectively. Here are a few interesting
examples of things different project directors and employees have done
with their ADDGS grants:

-   The **Southwestern Indiana Regional Council on Aging** applied for a
    technology grant to install devices to help caregivers, such as
    video monitors, medicine dispensers, and special door contacts and
    floor mats that set off alarms if a patient wanders unexpectedly.

> "We are able to assess each situation and recommend different pieces
> of technology that would best suit each situation," wrote Carolyn
> Connors, director of brokered services for the council. She gave an
> example of a 77-year-old client with Alzheimer\'s and Parkinson's
> whose wife was having trouble caring for him at home.  With the help
> of monitoring equipment, she was able to keep better tabs on him and
> free up some time for herself. "With the floor mats and door contacts
> an audio alarm would ring in the home if he got out of his chair or
> opened an exterior door," Connors wrote, "When she needed to run
> errands, her brother would use the video monitoring to watch our
> client." The woman told the case worker that these devices were
> crucial to keeping her husband at home and relieved some of the stress
> of caregiving.

-   The **Illinois Department of Public Health** targets two diverse,
    underserved elderly populations -- limited English proficient and
    rural. Community-based service providers are trained on recognizing
    memory problems and dementia, the importance of appropriate
    diagnosis and treatment, and available community-based services. To
    reach elders with limited English proficiency, the department
    partnered with the Coalition of Limited English Speaking Elderly.
    The coalition is made up of about 40 ethnic community service
    agencies. People in these communities trust the doctors they know
    and who share their language and ethnic background. These doctors
    are provided with information on appropriate diagnosis and treatment
    and available community-based services.

> "In some languages, you can't use the word 'dementia' because it
> translates as mental illness or retardation," said Jane Kessler, a
> gerontological specialist at the department. Urban Chicago is home to
> myriad ethnic groups, including high concentrations of Bosnian, Arab
> and Polish people. Kessler said that in many Eastern European and
> formerly communist countries, mentally ill people were often taken
> from homes in the middle of the night, never to be seen
>
> again. Because of that history, many immigrants and refugees are wary
> of government organizations. They see us as "Big Brother,'' Kessler
> said. So Illinois came up with this training program to reach these
> often isolated and sometimes highly fearful populations.

-   The **Alzheimer's Association Colorado Chapter** recently started
    outreach to the deaf/hard of hearing community. Pat Holley, the
    Family Services Director for the Alzheimer\'s Association Colorado
    Chapter, said that targeting deaf and hard of hearing caregivers
    came about when a deaf couple began attending the organization's
    "Savvy Caregiver" classes. Holley and her colleagues hired an
    interpreter to help communicate with them. "We thought 'This is a
    population that is in dire need. They're already dealing with
    someone who has Alzheimer's disease, and then you throw on top of
    that deafness." They continue to look for ways to adapt their
    services for the deaf and hard of hearing community, and are
    exploring the possibility of creating closed captions on the "Savvy
    Caregiver" training video.

The above examples are but a short sample of some successful grant
initiatives. To see more identified "best practices" among previous
grantees and to find out more about the ADDGS grant program, visit
<http://www.aoa.gov/alz>.

**Key Recommendations**

*Key recommendations made by presenters and participants included the
following advice.*

-   **Engaging in Systems Change Activities**

> *Systems Change presenters encouraged participants to:*

-   ***Engage in proactive behavior*** to ensure that the needs of
    people with dementia are included in state system-change activities.
    "Find people who share your passion" and "get yourself a place at
    the table, no matter where it happens to be set."

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-   ***Demonstrate passion*** about your cause because it attracts
    partners. "If you aren't fired with enthusiasm, you will be fired
    with enthusiasm."

-   ***Show*** that grantees can put public funds to good use. "ADDGS
    dollars enabled us to do some projects we would have never been able
    to do otherwise, and we were able to show the state we could do a
    good job with the money."

-   ***Partner*** with existing organizations with a steady stream of
    funding and make the most of those partnerships. There is nothing
    wrong with using other people's money to complete your agenda. "If
    it was there and it had money, we were there." "You don't just want
    to sell them (partners) on your practices, but you want them to own
    and perpetuate your practices."

-   ***Ensure*** that state Medicaid eligibility standards and criteria
    take into account the need for physical and verbal cuing, the need
    for special supervision with activities such as managing finances
    and cooking, and specific behavioral symptoms, such as
    combativeness. "A person may need care 24 hours a day, but the state
    won't provide it because the state's not measuring those things."

**Making Health Care Systems Dementia Friendly**

> *Presenters on making healthcare systems more dementia friendly
> encouraged participants to work with primary care physicians and
> healthcare systems to:*

-   ***Assist*** primary care physicians to better understand the
    disease by starting with interested doctors. "Don't try to change
    the world. Work with interested doctors".

-   ***Help*** primary care physician "do the right thing" by making
    sure you "have as may tricks in your bag as you can". Understand
    that physicians want to be shown "how to do it (dementia assessment)
    in five minutes" and keep in mind that having caregivers tell their
    stories can be an effective form of outreach. "Once they
    (physicians) see someone they've diagnosed or seen is being helped,
    that makes a world of difference."

-   ***Creatively assess*** existing resources that can be used to train
    and educate health professionals. One state used its bioterrorism
    network to conduct physician outreach efforts. These "telemedicine
    lines" allow physicians to connect to one another, and the
    department can hold educational symposiums for medical professionals
    and patients families. "It's very effective."

-   ***Engage*** mental health systems because people with dementia
    often need treatment for mental health problems. Examples of states
    undertaking these efforts include Michigan's wraparound model
    serving people with Alzheimer's with behavioral problems and
    Vermont's bridge program providing referrals to caregivers with
    mental-health issues. Although the disease produces psychological
    outcomes, it can also be considered a neurological condition because
    of its neurodegenerative quality. The important question with
    respect to connecting with mental systems is "Does it matter?"
    Either way, the symptoms are real.

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-   **Sustaining Grant's Most Worthy Elements**

> *Presenters recommended that participants take the following actions
> to sustain worthwhile grant activities at the end of a grant period.*

-   ***Build*** coalitions and partnerships with existing government and
    healthcare systems and with private-sector funders and donors to
    ensure that worthy grant activities can be sustained even if new
    grant funds are not forthcoming.

-   ***Appeal*** to charitable foundations, corporations and individual
    donors by presenting your case in a clear and compelling way.
    Written materials must be concise and should answer "the why". "If
    you can't say what you want to do in one page -- you can't do it."

-   ***Develop*** a rapport with organizations by cultivating contacts,
    creating a distinct image, using a credible spokesperson, and
    designing an effective communication plan. Volunteers can be a great
    resource. They help with fundraising events and can be a "key
    influence for others to give because they're not paid to back the
    organization".

-   ***Assess*** your community's assets (not just its needs) along with
    community resources, vested interests, traditions, and values. Only
    once these forces have been evaluated can a project director or
    representative start strengthening relationships with potential
    donors and initiate strategies to overcome obstacles to success.

-   ***Follow-up*** with donors and funders to show what was done with
    the funds though annual reports, thank-you letters, and newsletters.
    "Let them know how wisely you stewarded the money they gave".

*This project was funded by the Administration on Aging under contract
no. GS-10F-009L MOBIS, Delivery Order No. HHSP233200400143U. This report
is a product of the Alzheimer's Disease Demonstration Grants to States
National Resource Center. The statements contained in this report are
solely those of the authors and do not necessarily reflect the views or
policies of the Administration on Aging, RTI International, or the
Alzheimer's Association. The Alzheimer's Association assumes
responsibility for the accuracy and completeness of the information
contained in this report.*