ODL 202: Living with Cognitive Impairment – Personal Perspectives

Revised on 09/15/2023

Target Audience:

This course is targeted for social workers, case managers, nurses, and counselors.

Overview:

More than 16 million people in the United States are living with cognitive impairment. With age being the greatest risk factor, this number is expected to dramatically increase as the Baby Boomer generation passes the age of 65. As helping professionals, we often see the clients behind these statistics, who wish to continue to live their life with meaning, dignity, and purpose. In this one-hour discussion, we hear from two people living with cognitive impairment who are finding purposeful and joyful living. This eye-opening discussion moderated by Cindy Nelson, JD,  exemplifies what living with meaning, dignity and purposefulness looks like.

Course Objectives:

By the end of the session – the participant will be able to:

• Summarize the concept of purposefulness in relation to the aging process
• Recognize the importance of connectedness, purposefulness, and joy in an individual’s development
• Describe techniques for improving the quality of life of persons with cognitive disorders.

Presenters:

Arthena Caston was diagnosed with mild cognitive impairment (MCI) in 2016 at age 51. 

Arthena worked in customer support for a large insurance company when she began noticing lapses in her memory. As a natural “people person,” Arthena enjoyed her daily interactions with customers, but she soon forgot to return their calls unless she wrote herself detailed notes. 

At home, Arthena found favorite pursuits, including reading, cooking, and routine trips to Hobby Lobby were becoming more challenging. Even routine tasks such as putting on makeup before work became difficult. The most alarming moment, however, came the day she left her car running for an entire day in her employer’s parking lot, only realizing her mistake when she returned home later that night. 

Prompted by her worsening memory lapses, Arthena and her husband, Virous, shared their concerns with her primary care physician. She was referred to a neurologist for brain imaging and then referred to a neuropsychiatrist, who performed additional cognitive testing. Two days after first sharing her concerns with her doctor, Arthena had her diagnosis – MCI. Arthena remembers “feeling numb” when she finally received her diagnosis. She still recalls the progression of Alzheimer’s disease in her father – “a strong military man who became a shell of his former self.” 

Shortly after receiving her diagnosis, Arthena called the Alzheimer’s Association 24/7 Helpline. She was connected with her local chapter, where she received an in-person care consultation as well as help in arranging a care consultation for her family independent of her. 

“It was important to me for my family to have a safe place to openly share their feelings,” Arthena says. “I want my family to understand what the future holds and to be open with their feelings as my symptoms and behaviors change.” 

Married for 29 years, Arthena confides that her husband initially struggled to come to terms with diagnosis, but has become her greatest supporter. “My husband is my rock and more proud of me than anyone I know,” she says. 

Today, Arthena has a renewed sense of purpose and passion for sharing what life is like living with dementia. Known in her neighborhood as the “Purple Dog Lady,” Arthena walks her dogs daily, typically donning purple Alzheimer’s Association t-shirts and sweaters. She even combined her love of designing items with her passion for advocacy, creating her own Alzheimer’s t-shirt to sell and raise funds for the fight against the disease. Arthena works closely with her local Alzheimer’s Association chapter, volunteering her time toward increasing concern awareness and fundraising.  

In 2020, Arthena was elected to the Alzheimer’s Association Board of Directors. She is one of two individuals living with dementia to serve on the 29-member, all-volunteer governing board. In her role, Arthena helps steer the strategic direction of the Association as it carries out its mission to lead the way to end Alzheimer’s and all other dementia by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support.

“I am honored to serve on the Alzheimer’s Association Board of Directors and to have an opportunity to give all those living with dementia a voice,” Arthena said. “So many people think people living with Alzheimer’s and other dementia have nothing to contribute, but I am living proof that we have done. I want to use my voice to help inform the Association’s programs and initiatives so they are responsive to the needs of individuals and families affected by this devastating disease.”

Prior to her appointment on the Board, Arthena served on the Association’s National Early Stage Advisory Group, which helps raise awareness of Alzheimer’s and other dementia by sharing members’ personal insights and experiences of living with dementia with media and other audiences across the country.

“It’s ok to be afraid. It’s alright to cry, scream, get mad, question the diagnosis and ask ‘why me?’” she says. “But after you have gone through the initial shock and pain, start thinking about what you can do to enjoy the time you have with family and friends. Do everything you have ever wanted to do and enjoy life.” 

Arthena and her husband, Virous, live in Macon, Georgia with their two dogs. They have two adult daughters serving in the U.S. Air Force, and two grandsons who they visit often.

Lynn Ross, LMSW, is a retired medical social worker that has found it hard to retire. From her experience as an Activity Director in a skilled nursing facility, to the director of an Alzheimer’s Day program, as a geriatric care coordinator with a local elder law attorney, and as a medical social worker for ten years, Lynn brings a wealth of knowledge to her part time work with Caring Companion of Atlanta, a home care agency.  In 2017, she retired from the Movement Disorders program in the Department of Neurology at Emory University and since has volunteered with several organizations serving those living with dementia in Georgia.  Lynn serves on the Advisory Councils for Culture Change of GA, and Georgia Alzheimer’s and Related Dementias (GARD) State Plan.  With GARD, she is a member of the Outreach & Partnership Workgroup.  

Her other interests include arts/crafts, Mixed Media especially, and card making.  Lynn lives in Atlanta.   

Cindy Nelson, JD, is an Attorney and the Founder of Nelson Elder Care Law. She focuses her practice on representing seniors’ rights and interests.

She has been instrumental in strengthening Georgia legislation against elder abuse, securing additional funding for senior services, and the implementation of Georgia Alzheimer and Related Dementia plans.

Prior to founding Nelson Elder Care Law, she worked for Area Agencies on Aging, a non-profit elder care law clinic, an elder law legal firm, the Georgia Long-term Care Ombudsman, a Superior Court Judge, and Cobb County Probate Judge.

1 CREDIT HOUR APPROVED FOR:

Social Workers
ASWB ACE – 1 CE Credit*
New York State Education Department’s State Board for Social Work – 1 Contact Hour
Case Managers
CCMC – 1 Contact Hour
Nurses
California Board of Registered Nursing – 1 Contact Hour
Counselors
NBCC ACEP – 1 Contact Hour
New York State Education Department’s State Board for Mental Health Practitioners – 1 Contact Hour

* ACE individual course approval meets the NJ Board of Social Work Examiners requirements for individual course approval pursuant to NJ Code 13:44G-6.4.16

Please make sure to check with your own state board to ensure the transferability of CE credit for an asynchronous course. Some state boards may place restrictions regarding the modality of training required for ethics credits to be awarded. If this training indicates ethics credits are available, please verify that your state allows them to be earned through an on-demand course format.