Globally, a new case of dementia is diagnosed every three seconds. The story of Dementia Spotlight Foundation is about one family who was affected by dementia and how they are trying to improve the quality of the lives of People Living with Dementia and their Care Partners. Whitney DeMarlo Oeltmann and Linda B. DeMarlo, her mother, founded Dementia Spotlight Foundation (DSF) after a physician told them that Anthony DeMarlo, Whitney’s father and Linda’s husband, had Alzheimer’s disease. The physician looked at Linda and said, “Good luck, this will be the hardest thing you ever do,” and sent them on their way.
Dementia Spotlight Foundation is focused on People Living with Dementia, their Care Partners, family members, and the communities where those affected by dementia live, work, and play. Our multi-faceted approach seeks to bring about change by providing supportive listening and dementia education to individuals and groups of People Living with Dementia and Care Partners. We strive to identify service needs and establish approaches to fill those gaps. At the community level, DSF is working with multiple partners to make the State of Georgia Dementia Friendly and Inclusive. Dementia not only affects the person who has the condition, it affects everyone in the community.
At Dementia Spotlight Foundation we want to raise awareness about dementia, with the goal of helping people and communities understand it. Dementia is life changing for all those involved and there are so many questions. Many of these are best answered by those who have walked this path, not by the medical community.
We joined forces with the Dementia Friendly Georgia working group, within the State of Georgia’s Alzheimer’s and Related Dementia (GARD) Collaborative. We helped to complete the application for licensure through Dementia Friends USA for Georgia. The obtainment of licensure will officially allow Georgia to move forward on a dementia friendly and inclusive implementation plan for the state. Once this is rolled-out, our hope is to decrease the misunderstanding and stigma that is perceived and experienced by People Living with Dementia and their loved ones.
We work with local groups as well. We have initiated conversations with the City of Decatur government, businesses, schools, and residents with the hopes of creating the first dementia friendly and inclusive city in the state. Although in the early stages, we are hopeful this plan will come to fruition and serve as an example for other Georgia cities to follow.
During our short existence, we have sponsored and hosted People Living with Dementia and their Care Partners to attend and speak at training events, as well as national and international conferences. We believe strongly in this because it is vital for audiences to hear first-hand about the lived experience. People Living with Dementia and their Care Partners must be included and at the table in everything that organizations and political entities do related to all things dementia. They must have a voice in the purpose and direction of all dementia-related programs and policies.
At DSF we work hard to provide free, or affordable, training sessions on the best ways to partner with and care for People Living with Dementia. For example, we have sponsored training by Teepa Snow, an internationally-acclaimed trainer who teaches a “Positive Approach to Care™” (PAC). With our sponsorship, she has trained more than 1000 Georgians, including Emergency First Responders. “Most education models teach the WHAT of dementia, including mostly facts and information. PAC takes it a step further and teaches the HOW to live in relationship with a changing brain.”
We also co-sponsor trainings based on The Eden AlternativeⓇ philosophy. The Eden Alternative’s mission is to improve the well-being of Elders and their Care Partners by transforming the communities in which they live and work. Their vision is to eliminate loneliness, helplessness and boredom -- the three plagues that cause suffering for our Elders. The Eden Alternative offers “a variety of educational experiences, designed to help individuals revolutionize the culture of care and aging in their organizations and the broader community.”
We were a sponsor of the recent Eden Alternative International Conference, which was held in Atlanta. We brought People Living with Dementia and their Care Partners to attend the conference and present their lived experience, and have done so at several other national conferences as well.
In many instances the Care Partner is the forgotten part of the dementia equation. For example, more than 65 million people, 29 percent of the US population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one. (caregiveraction.org)
Care for the Care Partner is as important as the care for People Living with Dementia. We make it a priority to associate ourselves with others who are working toward the same goal. We formed alliances with the Alzheimer’s Music Fest and the Laona M. Kitchen Foundation with the express intent of raising funds to provide free respite care for Care Partners.
Our Partners Include:
The Laona M. Kitchen Foundation (LMK) was founded by Gary Kitchen in honor of his mother who lived with Alzheimer’s disease. The mission of the foundation is to help Care Partners of those affected by Alzheimer’s disease and other dementias through voucher programs, community education, and assistance with applying for benefits. Dementia Spotlight Foundation accepts donations to provide respite care to Care Partners through the LMK Foundation.
The Alzheimer Music Fest (AMF) was created by Vince Zangaro. Vince served as the sole Care Partner for his father who lived with Alzheimer’s disease for 7 years. Then he met his wife, Amy, and they joined forces as his father’s Care Partners for the last 7 years of their family’s 14 year Alzheimer's journey. He learned so much during that time that he began the music fest that is now in its seventh year. Vince’s goal is also to increase awareness and raise donations to provide respite care for Care Partners. AMF has raised close to $110,000 and has donated the proceeds to Laona M. Kitchen Foundation (LMK), Amy’s Place, and now Dementia Spotlight Foundation.
We have identified and collaborated with many organizations and individuals that provide outstanding education and professional development to improve care and support for older Georgians and People Living with Dementia. These include the following:
The Culture Change Network of Georgia is a group of dedicated supporters and stakeholders working as partners to promote and foster culture change to improve the quality of life for older Georgians in all settings where aging services are delivered. The goal is to create the kind of care and support we want for our loved ones and ourselves. This group meets quarterly to explore and advance how culture change and person-centered care can be expanded throughout the state.
LeadingAge Georgia is the trusted voice for not-for-profit and other mission-driven organizations dedicated to providing quality housing, healthcare and community-based services for older Georgians.”
In addition, we are excited to announce we are in the process of collaborating with Gary LeBlanc, who is responsible for implementing The Purple Angel Wristband Program in Florida. This unique program helps create better hospital care for those with dementia. Our hope is to bring this same approach to Georgia.
In a continued effort to spread the word and help others we have also participated in these important initiatives:
Co-produced, with Teepa Snow, a training film aimed at judges who determine if and when a Person Living with Dementia requires a legal guardian. Soon to be released
Co-authored an article with William Hu, MD, PhD at Emory University, Dept of Neurology and Rollins School of Public Health titled “Moving the dementia friendly needle: Characterizing dementia-related stigma in the US.” Submitted to a peer- reviewed journal for publication. We funded the focus groups with People Living with Dementia and their Care Partners that provided the research that this paper is based upon. The study involved 20 People Living with different types of dementia and their Care Partners.
We will never stop our crusade until there is no longer a need for education about dementia. We have lived it and we know what those facing our same situation need to know.