This month, the Alzheimer’s Association, a volunteer health organization that focuses on care, support and research for Alzheimer’s Disease, joins together with persons in the early stages of the disease to encourage families to talk about memory and cognition concerns sooner rather than in the disease’s later stages. They personally know the many benefits of early diagnosis, that includes access to more effective medical and lifestyle interventions and the ability to take an active role in planning with family members for the future.
“Denial and rationalization are common responses to the early signs and symptoms of Alzheimer’s – it was a part of my experience,” said Darrell Foss, a member of the Alzheimer’s Association’s Early-Stage Advisory Group, which is composed of people in the early stages of Alzheimer’s disease. “Too often, people experiencing symptoms, or family members seeing them, wait to speak up, even when they know something is wrong. It can be scary, but that is why I’m sharing my personal experience – to illustrate why talking about Alzheimer’s concerns early is so important,” he said.
Making More Informed Decisions
Mary Tarbell, 66, an Alzheimer’s Association Early-Stage Advisor who was diagnosed with Alzheimer’s disease in 2016, agrees with Foss, noting she personally knows the benefits of confronting her diagnosis to refocus her priorities.
“Learning I had Alzheimer’s was painful,” said Tarbell. “But getting an early diagnosis has given me the chance to make informed decisions about the future with my family. My husband and I are using this time to plan some vacations and do the things we want to do while we still can.”
Adds Pam Montana, also an Alzheimer’s Association Early-Stage Advisor who was diagnosed with Alzheimer’s disease in 2016 at age 61, “Many see Alzheimer’s disease as the end of life and, while there is currently no cure, living with the disease is a complex experience that often runs the course of many years.”
“It is so important for me to encourage others with a diagnosis to stay active and engaged as long as possible. I encourage people to seek out life-affirming moments. For example, I’m an advocate for the cause, it is important for me to face this disease and share my story while I’m able, and that leads to an enormous sense of accomplishment, even with this extremely difficult diagnosis. I want to tell these stories and let others know they are not alone,” says Montana.
“Unfortunately, people often avoid conversations due to denial, fear, anxiety, lack of awareness and difficulty having hard conversations about health issues, particularly with Alzheimer’s or other dementias due to stigma and perceptions associated with the disease,” said Ruth Drew, Director of Family and Information Services for the Alzheimer’s Association
To help people understand the early symptoms of Alzheimer’s or behaviors, the Alzheimer’s Association offers 10 Warning Signs. Should these signs appear, it is important to talk about them with the person experiencing symptoms and encourage them to speak with a medical professional.
Six Tips for Talking About Alzheimer’s
To help families overcome common communication obstacles, the Alzheimer’s Association offers 6 Tips for Approaching Alzheimer’s, a list of best practices for talking about the disease with someone who may be experiencing symptoms (for more on these tips, go to alz.org/6Tips).
- Have the conversation as early as possible
- Think about who’s best suited to have the conversation
- Practice conversation starters
- Offer support and companionship
- Anticipate gaps in self-awareness
- Recognize the conversation may not go as planned
Visit alz.org to learn cognitive disorder, its warning signs, the importance of early detection and diagnosis as well as information on care and support groups.
Contact the West View Nursing & Rehabilitation Center to help you locate the community resources and experts to navigate the the challenges you face at each stage of the disease. Call Hugh Hall, Administrator at (401) 828-9000.