Stolen Future: Part 2

Alzheimer’s Association offers variety of services for dementia patients, families

All kinds of services are available for patients and families through the Alzheimer's Association.

Alzheimer’s Association offers variety of services for dementia patients, families

The Alzheimer's Association has dozens of chapters across the country offering free services to help those living with dementia and their caregivers at every stage.

However, only about 7 percent to 10 percent of those eligible access the support, said Cheryl Kinney, director of client services for the Greater Missouri Chapter, which serves 86 counties in Missouri and 10 in Illinois.

“If a doctor just hands them a brochure with a phone number on it, they won't call," Kinney said. Some doctors don't even mention the Alzheimer's Association, she added. “It's, ‘Here's a prescription and call me in a year.’ And people are struggling.”

The association provides personal care consultations to address needs and concerns. Services include a 24-hour helpline, education about symptoms, support groups, connections to community resources and social activities.

Families may not think they need support when symptoms are in the early stages, but advocates say it's a critical time for preparation and planning.

Programs are expanding for those in the early stages as advocates learn more about their needs, Kinney said, including a program called “Leaving Your Legacy” which encourages individuals to think about who they are and how they want to affect others.

Through questions — What brings me joy? How can I share that with others? How can I help others? How can I make life better for other people? — individuals are encouraged to leave their legacy in various ways, including letters to grandchildren, a cookbook of their recipes, volunteering, participating in research or making photo albums.

“It's a great time to create a life story through videos or journals, and that makes a person feel like they are able to pass on their lessons learned and experiences to others,” Kinney said.


In later stages, it helps families maintain connections and helps health care providers who might be meeting a patient for the first time. “They can see her as Mrs. Jones who is an exceptional seamstress who sewed all her kids' clothes and loved the Cardinals,” she said. “They see her as more human.”

Julie Whitley, a social worker for the Alzheimer's Association, said she helps patients find their purpose no matter how mild or severe the symptoms.

“If the patient is a type-A, want-to-control-things personality, this is a really hard disease,” Whitley said. “We help them focus on what can you do now and still do well?”

Advocates say connecting with others early in the disease process is important in helping people feel more supported as symptoms progress. They call this a “care team” — friends and family who are informed about the person's needs and educated about dementia.

The Alzheimer's Association can facilitate a discussion among team members. Or if a person has few close family members or friends, the association can help figure out ways — such as using a church or volunteer group — to fill the gaps. It's important not to become isolated.

“Start building that care team early and expand it as needed,” Kinney said. “The emotional, spiritual and financial toll can be so overwhelming. That is why you need a care team in place. You need to know who you can turn to.”


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About this series

Photo of Michele Munz

Michele Munz has been a reporter for the St. Louis Post-Dispatch for 20 years, the past nine covering health and medicine. As a health reporter, Munz has won awards for her coverage of midwifery care, an experimental treatment for ALS and the opioid epidemic. She was the St. Louis Newspaper Guild’s 2015 Terry Hughes Award winner.

Photo of Christian Gooden

Christian Gooden has been with the Post-Dispatch since 1999. He is a native of University City and graduate of Cardinal Ritter College Preparatory High School. He earned a degree in journalism from Morehouse College in Atlanta, Ga. He has worked at The Atlanta Journal-Constitution and the Milledgeville (Georgia) Union-Recorder.

Photo of Cristina M. Fletes

Cristina M. Fletes is a staff photographer and videographer at the St. Louis Post-Dispatch. She received a bachelor of fine arts degree in studio art from Louisiana State University in Baton Rouge and a master's degree in photojournalism from the University of North Carolina at Chapel Hill.

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