Disease, Disorders, Medical Disciplines

Alzheimers Community Care, Inc.

We place a safety net around patients and caregivers every day.™

West Palm Beach, FL

Mission

Alzheimer’s Community Care is dedicated to promoting and providing community-based, family-centered care for patients and their caregivers living with neurocognitive disorders, through the belief, that where there is help, there is hope.

Ruling Year

1996

President and CEO

Ms, Mary M. Barnes

Main Address

800 Northpoint Parkway Suite 101-B

West Palm Beach, FL 33407 USA

Keywords

alzheimer's, dementia, health, caregiver, elderly, neurocognitive disorders, neurocognitive diseases, senior

EIN

31-1481653

 Number

7331578500

Cause Area (NTEE Code)

Alzheimer's (G83)

Health Support Services (E60)

Brain Disorders (G48)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Social Media

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Programs + Results

What we aim to solve

Nearly 66,000 people in Alzheimer’s Community Care’s (ACC) three-county footprint (Palm Beach, Martin, and St. Lucie Counties) have Alzheimer’s disease or other dementia. Seventy percent of these patients are cared for by family at home. Both the Alzheimer’s patient and caregiver need dementia-specific services to maintain quality of life and live in the community in safety and dignity. Families want to care for their loved ones with Alzheimer’s, but the burden can be overwhelming. Patients cannot be left alone, and their behavior is misunderstood by society. As a result, caregivers become isolated and depressed and patients face empty days. Studies show that without support, 40% to 70% of caregivers die before the patient from the stress and burden of caregiving. To maintain health, caregivers need respite from the challenges of caring for their loved one and patients need cognitive stimulation and socialization to have quality of life. ACC’s comprehensive model of care does both.

Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

Specialized Alzheimer's Day Care

Family Nurse Consultant

24-Hour Crisis Line

Professional and Community Education

ID Locator Service

Where we work

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of volunteers

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Number of support groups offered

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

Family Nurse Consultant

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Number of crisis hotline calls answered

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

Family Nurse Consultant

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Percent of caregivers who learned/utilized new strategies that make caring for their loved one with Alzhiemer's at home possible.

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

Family Nurse Consultant

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Percent of caregivers indicating that they intend to continue to provide community-based care.

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

Family Nurse Consultant

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Charting Impact

Five powerful questions that require reflection about what really matters - results.

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

The overarching goal of the Organization is to help Individuals with Alzheimer’s disease or other neurocognitive disorder remain living in community-based settings throughout each stage of the disease progression. Families want to keep their promise to their loved ones and provide care for them in the familiar surroundings of home. For many families, the challenge of providing community-based care is overwhelming. These families need dementia-specific guidance to navigate the ever-changing manifestations of the disease as well as the overwhelming stress and burden of providing round-the-clock care. The Organization remains on the cutting-edge of dementia-care, bringing new strategies and techniques to patients and caregivers to improve the quality of life for both patients and caregivers. Our 11 Specialized Alzheimer’s Day Care Centers provide therapeutic care to patients throughout the day. Special offerings include Music Therapy, Art Therapy, Pet Therapy (live and robotic), as well as music and dance performances. Special luncheons for patients and caregivers to celebrate Thanksgiving and Caregiver Appreciation provide fellowship among families and staff, who are all working together on behalf of patients. As the incidence of Alzheimer’s disease increases, the Organization, understanding that healthcare professionals must be equipped with the most current information to effectively work with these patients, whether being treated for Alzheimer’s disease itself, or other illnesses like diabetes, has trained over 1,000 nursing and health professional students and 120 physicians. As a result, these professionals are adapting patient education techniques for disease management to meet the special needs of Alzheimer’s patients, creating a culture of care that respects the dignity of each patient regardless of the level of cognitive decline. The hallmark of Alzheimer’s Community Care’s model of care is the emphasis on the health and well-being of BOTH the patient and caregiver. Caring for an Alzheimer’s patient is extremely stressful. As the disease progresses the patient cannot be left alone. As the patient’s behaviors become more unpredictable and inappropriate families isolate which leads to empty days for patients and feelings of depression among caregivers. Family Nurse Consultants create care plans for both patient and caregiver. As a care partner, nurses provide families with education, resources and support that reduce the burden of care, improving the quality of life for both. Caregivers receive life-saving respite through patient enrollment in Specialized Alzheimer’s Day Care. The ID Locator Bracelet Service also helps to reduce caregiver stress, as they know that should the unthinkable happen and their loved one wanders, they will be found quickly and returned to safety. Together the model of care keeps families together and helps to avoid or delay costly nursing home placement.

Alzheimer’s Community Care is taking a broad approach to changing the paradigm for Alzheimer’s patients and families. On the micro level, the organization provides programing designed to assist individual families to continue to provide home-based care. These services include the Family Nurse Consultant Program, Specialized Alzheimer’s Day Care (11 locations), Carergiver Support Groups, Case Management Services, an ID Locator Bracelet Service, and a 24-Hour Alzheimer’s Crisis Line to improve the quality of life for both Alzheimer’s patients and their family caregivers. On the macro level, Alzheimer’s Community Care is working to reduce the stigma associated with Alzheimer’s disease or other neurocognitive disorder, improve the care of Alzheimer’s patients across the state of Florida and create dementia-friendly communities. The Organization partners with eight colleges to present dementia-specific care training for our community’s future healthcare providers. Students are given the latest information as researchers learn more about neurocognitive diseases. For example, for patients with Lewy Body Dementia, anesthesia may be fatal. Alzheimer’s Community Care keeps abreast of research and brings the latest information to clinicians to help them improve patient care. importance. A partnership with the Veterans Administration brings dementia-specific care training to their staff, who see increasing numbers of combat veterans experiencing Alzheimer’s disease and other neurocognitive disorders as a direct result of their service to the country. The organization continues to develop partnerships with educational, faith-based and law enforcement organizations to foster a culture that respects the dignity of and provides support to dementia patients and their families. Alzheimer’s Community Care has been educating the community through the Annual Alzheimer’s Educational Conference since 1997, bringing nationally recognized speakers and researchers in Alzheimer’s disease and other neurocognitive disorders to present to caregivers and professionals to improve care for patients and the quality of life for caregivers. Alzheimer’s Community Care is also spearheading a pilot project to create a dementia-friendly community across Martin County, Florida. This includes providing sector-specific training to retail, healthcare and government employees to increase Alzheimer’s disease awareness and sensitivity. Based on the success of the initiative, the Organization will be expanding the work into Palm Beach and St. Lucie Counties. The Organization also advocates legislatively to improve the care of Alzheimer’s patients, including the successful passage of the Specialized Alzheimer’s Services Adult Day Care Act, which provides additional regulations and raises the bar for services to patients with Alzheimer’s disease or other neurocognitive disorder.

Mary M. Barnes is the founding director of Alzheimer’s Community Care. She has been the President and CEO throughout the 23-year history of the organization. Ms. Barnes has been working in the field of gerontology for her entire career and emerged as a leading advocate for Alzheimer’s disease and related disorders in 1985 when she became the founding Executive Director of the Greater Palm Beach Chapter of a National Florida Alzheimer’s Association. She serves on numerous committees including Florida’s Alzheimer’s Disease Advisory Committee’s Home and Community-Based Services Subcommittee, Palm Beach County’s Special Needs Shelter Interagency Committee and Florida’s Silver Alert Support Committee. The board and senior leadership of the organization remain committed to working locally to give patients and caregivers compassionate and culturally appropriate care that is embedded in communities through partnerships with faith-based and other organizations. Even the term local has changed as needs emerged. The initial focus of Palm Beach County has grown as other areas request services and support. Through leadership’s vision the organization has grown rapidly as community needs emerge. For example, after creating the successful Silver Alert, Ms. Barnes continued forward to include Lost on Foot, that now incorporates the ID Locator Bracelet Service. Ms. Barnes and the board lend their voice to policy advocates at the local, state, and national level to promote policies that support community-based, family-centered care for all who suffer from Alzheimer’s disease and other neurocognitive disorders. Karen Gilbert, DNP, MS, RN, CDP serves as the Vice President of Education and Quality Assurance and as such, supervises the Family Nurse Consultant Program. She has worked with Alzheimer's patients for over 21 years and is recognized as a Certified Dementia Practitioner (CDP) by the National Council of Certified Dementia Practitioners. As a Certified Alzheimer’s disease trainer, Ms. Gilbert plans and delivers monthly in-service training to give all nursing and direct service staff knowledge of new and emerging care strategies for Alzheimer’s patients and their family caregivers. Ms. Gilbert has been instrumental in ACC’s recent Joint Commission reaccreditation with high marks and outstanding Palm Beach County Financially Assisted Agency audit. All Family Nurse Consultants (FNC) are licensed nurses with specialized training and expertise in working with Alzheimer's patients and their family caregivers. All staff, regardless of their role in the Organization, receive Dementia-Specific Level I and Level II training within six months of hire.

Alzheimer’s Community Care’s model of care incorporates best practices for home-based, dementia-specific care based on research conducted at the Fisher Center for Alzheimer's disease. This includes: 1.) Education of caregivers about the disease; 2.) Counseling and support for the caregiver; and 3.) Strengthening social supports and family relationships. This model results in informed caregivers who report less isolation and who are better prepared to provide home-based care. Each core service offered by Alzheimer’s Community Care has annual outcome goals. These outcomes include (1) Reduction in caregiver stress and burden as measured by the Zarit Burden Interview, a standard measure of caregiver stress; (2) Increased knowledge of Alzheimer’s disease and strategies to manage behaviors; (3) Caregiver intention to continue to provide community-based care; (4) Reduced incidence of patient wandering; (5) patients avoiding or delaying nursing home care. Program staff track all activities and information gathered through assessments in our clinical software. Nurses submit monthly reports which are reviewed by the nursing supervisor. These reports are compiled into quarterly reports for submission to the Director of Community Care Services for review. In the event that there are areas where a program or service is not meeting its goals and intended outcomes, the report is reviewed again at Alzheimer’s Community Care’s monthly leadership meeting, where possible reasons for not meeting targets are discussed, and corrective action plans are implemented as needed. Leadership then follows-up during the next quarter to ensure that issues have been addressed and corrective action is effective. Alzheimer’s Community Care partnered with the University of South Florida to conduct data analysis and present findings for patients and families participating in one or more of ACC’s programs. Data collected at ACC’s Specialized Alzheimer’s Day Centers shows that of the average monthly census, 27% are Black and 22% are Hispanic/Latino. More than 75% of participants have Brief Interview for Mental Status (BIMS) scores indicative of severe cognitive impairment, a proportion that exceeds that of most studies of nursing home residents. However, only 41% of their caregivers have Zarit Burden Scores (the standard tool by which caregiver burden is measured) indicative of high burden. The study clearly demonstrates the effectiveness of Alzheimer’s Community Care’s family-centered model of care that delays or eliminates the need for nursing home placement, regardless of poverty, ethnicity or cultural background.

In its 23-year history, Alzheimer’s Community Cares’ (ACC) comprehensive approach has improved access to healthcare for Alzheimer’s patients and caregivers, improved health outcomes for underserved and uninsured Floridians and has fostered systemic change in the funding and treatment of patients and families coping with Alzheimer’s disease. The organization has grown from one location to 11 Specialized Alzheimer’s Day Care Centers, (a 12th is currently in the planning phase), one Family Nurse Consultant to seven (with an additional four Family Nurse Consultant Assistants),an ID Locator Bracelet Program serving over 250 patients each year, and educational programs serving caregivers and professionals. The Organization’s demonstrated success includes ACC becoming the first community-based, dementia-specific organization in the nation to receive accreditation by the Joint Commission. In 2014 ACC received the Rosalyn Gilbert Caregiver Legacy Award for outstanding work with minority populations and in 2015 the Organization was the National Merit Award Winner from the Mutual of America Foundation for innovations in healthcare education. ACC’s strategic priority for the immediate future is advocating for standard, routine cognitive screening across all healthcare settings, making cognition the sixth vital sign. This strategy would allow for the early identification of symptoms of cognitive impairment. As a result of the prompt evaluation, any treatable causes, such as hypothyroidism, malnutrition/dehydration, vitamin deficiencies, menopause, or brain tumor could be treated immediately. If there is an underlying dementia, some causes of cognitive decline, while not reversable, may be treatable to slow the rate of further decline. Any treatments of Alzheimer’s disease or other neurocognitive disorder are typically more effective when started early in the disease process. Also, diagnoses are more accurate early in the disease process. A full understanding of which neurocognitive disorder is impacting the brain is important in developing care plans. Obtaining an accurate diagnosis once most of the brain has become affected is difficult. For patients and families, an early diagnosis is empowering. Patients are able to participate in their own legal, financial and long-term care planning. They are then able to make their wishes known to family members. With early diagnosis, patients can spend their time focusing on what matters most to them, such as recording family history or making memories with grandchildren while they still can. Early diagnosis also helps patients and families develop realistic expectations and plan for the future together which will result in reduced stress and feelings of burden and regret later in the disease process. Taken altogether, these advantages result in a higher quality of life for the person afflicted, less stress for family care partners, and more time to treasure the present and prepare for the future.

External Reviews

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Financials

Alzheimers Community Care, Inc.

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Operations

The people, governance practices, and partners that make the organization tick.

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FREE: Gain immediate access to the following:

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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?

Yes

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Yes

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Yes

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Yes

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

No

Organizational Demographics

Who works and leads organizations that serve our diverse communities? This organization has voluntarily shared information to answer this important question and to support sector-wide learning. GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

SOURCE: Self-reported; last updated 08/20/2019

Leadership

The organization's leader identifies as:

Race & Ethnicity
White/Caucasian/European
Gender Identity
Female, Not Transgender (Cisgender)
Sexual Orientation
Heterosexual or Straight
Disability Status
Person without a disability

Race & Ethnicity

Gender Identity

Sexual Orientation

No data

Disability

Equity Strategies

Last updated: 08/20/2019

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. Learn more

Data

done
We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
done
We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.

Policies and processes

done
We use a vetting process to identify vendors and partners that share our commitment to race equity.
done
We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
done
We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
done
We have community representation at the board level, either on the board itself or through a community advisory board.
done
We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
done
We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
done
We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.