Center for Leadership and Public Policy

October 3, 2014

Alabama Dementia Initiative

With the encouragement of Governor Robert Bentley, the Alabama Department of Senior Services has initiated a major effort to understand and address the growing challenges of Alzheimer’s and dementia in the state of Alabama. To this end, the Center for Leadership and Public Policy (CLPP) at Alabama State University has been contracted to implement the Alabama Dementia Initiate (ADI).

The elements of the ADI are: demographic analysis, eight caregiver workshops at strategic locations in Alabama, a major statewide conference involving key individuals and professionals in the dementia network, a dementia publication to assist caregivers, the development of a comprehensive and informative dementia website and a small grant demonstration program. The project is beginning with the design of multiple survey instruments to be administered by the CLPP Polling and Demographic Research Division. These survey instruments will be focused on the general population of Alabama, a sample of identified caregivers and the organizations providing dementia services in Alabama.

In addition to informing you of the scope of this project, we are contacting you to encourage you or your organization to submit a proposal for the small grant element of the ADI. The total budget for this program is $60,000, where five or more grants of up to $12,000 will awarded in a competitive process. Eligible organizations for this program are universities, local governments, regional planning agencies, nonprofit organizations, for-profit organizations, or a combination of such organizations.

Applicants for these grants must submit proposals of three to five double-spaced, typed pages indicating the overall nature of the proposed grant program, the specific plan for conducting the program, the materials and supplies needed for the program and how the program will be evaluated at its completion. A separate budget page is required for the proposal indicating the cost of personnel, supplies, and services to carry out the grant activities. Special consideration will be given to proposals whose project results are deemed likely to be sustained after the project completion date.

The deadline for the submission of proposals is 5:00 p.m. on Friday, October 31, 2014. The proposals can be sent to tvocino@alasu.edu or by mail to Thomas Vocino, Ph.D., Project Director, Center for Leadership and Public Policy, Alabama State University, 600 South Court Street, Suite 430, Montgomery, AL 36104. A committee will evaluate all proposals and the successful applicants will be notified by November 15, 2014. All grant activities must be completed, including a project evaluation, by August 31, 2015.

If you have any questions concerning the Alabama Dementia Initiative (ADI), please do not hesitate to contact me at 334.229.6015 to tvocino@alasu.edu.

The documentary, “I’ll Be Me” hit home many times as the tears welled up from the deep places I’ve hidden my grief. I could see or hear others in the almost filled auditorium that were experiencing similar feelings. Watching the story of Glen Campbell’s final tour as his dementia progressed was bittersweet. His life’s musical achievements are such a dominant thread in his life that those creative elements remain strong even as words and memories become distant. His ability to sing, read, and play the guitar gave me hope for continued sharing and connecting with the many I know with AD. Mr. Campbell said, “I’m still here but yet I’m gone.” His daughter, Ashley, says in the documentary, “Daddy, don’t you worry, I’ll do the remembering.” Mr. Campbell is fortunate to have close family relationships that know his story so well and can tap into that creative place to draw out communication as his dementia progresses.

Likewise, the artist, Hilgos, is featured in a collection of stories entitled, “I Remember Better When I Paint,” which tells the remarkable uncovering of her intact ability to paint and communicate through her art even after she was deemed “void and with no mind” by nursing home staff and doctors. This effort, inspired by her daughter who responded to her mother’s remark, “I remember better when I paint” hired an art student to prompt this retired artist to once again pick up a brush.

Although this positive response took several months of consistent presence on the part of the student, once the breakthrough came, the communication began. Following 91-year old Hilda’s lead, a memorable relationship developed that changed the course of both their lives. Hilda Gorenstein (Hilgos) returned to creating more works of art to be displayed and appreciated. Although Mrs. Gorenstein is now gone, that young art student, Jenny Graf Sheppard, continues to speak about and research the value of the arts with Alzheimer patients.

Dr. Gene Cohen writes “All of us have certain skills or interests that we have more highly developed than others- usually an area where we have, in some manner, been creatively engaged. The challenge is to help affected individuals find those areas and have an opportunity to tap them. The result is a quality of life that is increased by the satisfaction of being able to use that residual capacity.”1

Indeed, that is the challenge. Not all folks have the obvious talent that Glen Campbell has with his music and Hilgos had with her paintings. It is the mystery to be solved. Often, the duty is left to activity directors or private sitters who have little knowledge of the history of that individual. I am faced with that challenge on a daily basis with my mother and others whom I see whose mysteries remains unsolved.

I hope that Mr. Campbell’s caregivers sing to him those familiar songs that are hidden where memories never die – in that creative place that brings joy and beauty to those who see and hear. I am reminded what is written in Isaiah 61:3-4 “To appoint unto them that mourn in Zion, to give unto them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness; that they might be called trees of righteousness, the planting of the Lord, that he might be glorified. KJV”.

When the creative is tapped, life is brought forth. Instead of the blank, “nothing is there” diagnosis, beauty is uncovered and rises from the ashes. Joy comes from that discovery, however brief, and thanks are given for the moment shared.

May we become more sensitive to the remaining qualities of those living with AD, recognize what they are and be sure to tap into that wellspring of life that remains.

Creating awareness of Alzheimer’s disease and offering emotional support is a goal of the Volunteers of America and of the Mobile Museum of Art “Keepsake” Program. Both recognize the growing need in our community and the coming tsunami of diagnosed cases that we are not prepared for.

To learn more about the Campbell’s effort to create awareness, go to glencampbellmovie.com.

To learn more about Hilda’s Gorenstein’s story, go to www.hilgos.org

1Cohen, Gene D. M.D., Ph.D. (2011). Creativity and Art in Promoting Health and Coping with Alzheimer’s in I Remember Better When I Paint, Berna G. Huebner, Editor.