This June, during Alzheimer’s & Brain Awareness Month, the Alzheimer’s Association – Eastern North Carolina Chapter and the Alzheimer’s Association – Western Carolina Chapter are revealing insights from people living with early-stage dementia and what they wish others knew about living with Alzheimer’s and other dementia.
Many Americans struggle with what to say and do when a family member, friend, co-worker or neighbor is diagnosed with Alzheimer’s disease or another dementia. The shock of someone revealing a dementia diagnosis can leave many at a loss for how to engage. Efforts to be supportive can be dampened by concerns of saying or doing the wrong thing. Worse, not knowing what to say or do, some individuals distance themselves from diagnosed individuals, further deepening the sadness, stigma and isolation people living with Alzheimer’s and dementia can experience in the wake of a diagnosis.
The Alzheimer’s Association recently asked those living with early-stage Alzheimer’s and other dementia what they want others to know about living with disease. Here are six things they shared:
- My Alzheimer’s diagnosis does not define me. Although an Alzheimer’s diagnosis is life changing, many living with the disease say their diagnosis does not change who they are. Many diagnosed individuals say they want to continue doing the activities they enjoy for as long as possible and stay engaged with family and friends.
- If you want to know how I am doing, just ask me. The sudden change in how others communicate with someone recently diagnosed with Alzheimer’s or another dementia is a frustrating experience for many living with the disease. Many individuals say it can be upsetting when family and friends only check on the person through a spouse or an adult child. They say avoiding or side-stepping direct communication only makes them feel more isolated and alone.
- Yes, younger people can have dementia. While the vast majority of Americans affected by Alzheimer’s and other dementia are age 65 and older, the disease can affect younger individuals. Those diagnosed with early-onset Alzheimer’s (before age 65) say it is important for others to avoid the common misconception that Alzheimer’s and other dementia only affects older people and to take cognitive concerns seriously at any age.
- Please don’t debate my diagnosis or tell me I don’t look like I have Alzheimer’s. While family members and friends may be well-intended in attempting to dismiss an Alzheimer’s diagnosis, many living with the disease say such responses can be offensive. If someone says they have been diagnosed with dementia, take them at their word.
- Understand sometimes my words and actions are not me, it’s my disease. As Alzheimer’s disease and other dementia progresses, individuals can experience a wide range of disease-related behaviors, including anxiety, aggression, and confusion. Diagnosed individuals say it’s important for others to recognize disease-related symptoms, so they are better prepared to support the person and navigate communication and behavioral challenges.
- An Alzheimer’s diagnosis does not mean my life is over. Earlier detection and diagnosis of Alzheimer’s disease and other dementia is enabling diagnosed individuals more time to plan their futures and prioritize doing the things most important to them. Many people living with early-stage Alzheimer’s and dementia say they want to continue living active, fulfilling lives for as long as possible.
“The stigma surrounding Alzheimer’s and other dementia is due in large part to a lack of understanding of the disease,” said Lisa Roberts, executive director of the Alzheimer’s Association – Eastern North Carolina Chapter. “These personal insights from people living with early-stage dementia highlight common disease-related stigmas and provide valuable guidance for improving how North Carolina residents can support and engage these individuals.”
During Alzheimer’s & Brain Awareness Month in June, the Alzheimer’s Association encourages everyone to learn more about disease-related challenges facing those living with Alzheimer’s and other dementia. Educating yourself and others about the disease is one of the best ways to reduce stigma and misperceptions. The Alzheimer’s Association offers guidance for navigating every stage of the disease.
The Association’s Live Well series provides tips to help early-stage individuals live their best lives. For other disease-related information and resources, visit alz.org.
During Alzheimer’s and Brain Awareness Month, join the Alzheimer’s Association in North Carolina for these activities to support the 180,000 North Carolinians living with Alzheimer’s and their 356,000 caregivers.
“Healthy Brain, Healthy Body, Healthy You Symposium” — will take place on June 13-16 from 12:15p.m. – 1:15 p.m. Learn about research in the areas of diet and nutrition, cognitive activity and social engagement. Discover strategies and activities to incorporate into your plan for healthy aging in our four-part series. Sponsored by Sharon Towers this series includes sessions on healthy habits, therapeutic horticulture, food prep, and mindfulness. Participants may join all sessions or just those of interest.
“Warning Signs of Alzheimer’s” — will take place June 30 from 6:00 p.m. – 7:00 p.m. Alzheimer’s Disease and other dementias cause memory, thinking and behavior problems that interfere with daily living. Alzheimer’s experts will share how to recognize common signs of the disease; how to approach someone about memory concerns; the importance of early detection; benefits of diagnosis; possible tests and assessments for the diagnostic process and Alzheimer’s Association resources.
“Understanding Alzheimer’s and Dementia” — will take place on in Wilmington, N.C., on June 15 from 10:30 a.m. – 11:30 a.m. Alzheimer’s disease is not a normal part of aging. Learn about the impact of Alzheimer’s; the difference between Alzheimer’s and dementia; stages and risk factors; current research and treatments available for some symptoms; and Alzheimer’s Association resources.
“Mental Health & The Aging Brain: Prevention, Diagnosis & Treatment” — will take place on June 9 from 6:00 p.m. – 7:30 p.m. as part of the “Under the Dementia Umbrella” series. This program will provide an understanding of mental health issues that can occur prior to and after diagnosis of a neurocognitive disorder. Learn how to identify and understand key differences in dementia and neurocognitive symptoms, and what interventions and treatments are available.
“The Impact of HIV on Brain Health” — will take place on June 16 from 11:00 a.m. – Noon as part of the “Thrive with Pride” monthly series. While many issues are the same for all older adults and those who care for them, some unique considerations arise for LGBTQ+ people dealing with aging. Each month various topics are discussed related to brain health, caregiving and the unique issues that impact LGBTQ+ individuals. During this June program learn about the difference between Alzheimer’s and dementia, stages and risk factors, current research and the impact of HIV to long-term cognitive health.
Additional information on educational programs and other care and support resources or how to get involved with the Association, can be found by visiting the Alzheimer’s Association – Eastern North Carolina Chapter at act.alz.org/ENCmonthlyprograms or by calling our 24/7 Helpline (800-272-3900).
Fight the Darkness of Alzheimer’s on the Day with the Most Light. The Longest Day – June 21
During June, the Alzheimer’s Association is also inviting North Carolina residents to participate in The Longest Day® on June 21. Held annually on the summer solstice, The Longest Day invites participants to fight the darkness of Alzheimer’s through a fundraising activity of their choice. Throughout the month and culminating on June 21, Longest Day participants will use their creativity and passion to raise funds and awareness for the care, support and research efforts of the Alzheimer’s Association.
Participants of more than 160 activities taking place across North Carolina for The Longest Day will bake, bike, hike, golf, knit, play bridge and take part in other favorite activities. For more information and to register for The Longest Day, visit alz.org/thelongestday.
Additional Facts and Figures: (alz.org/facts)
- An estimated 6.5 million Americans age 65 and older are living with Alzheimer’s dementia, including 180,000 North Carolina residents, a number estimated to grow to as many as 210,000 by 2025.
- Nationally, more than 11 million caregivers of people with Alzheimer’s disease or other dementias. In North Carolina, 356,000 caregivers provide a total of 514 million hours of unpaid care, valued at a total of $7.3 billion.
- One in three seniors dies with Alzheimer’s or other dementia.
- Nearly two-thirds of those with Alzheimer’s—3.9 million—are women.
- Older non-Hispanic Blacks and Hispanic Americans are disproportionately more likely than older whites to have Alzheimer’s or other dementias.
About Alzheimer’s & Brain Awareness Month
Established by the Alzheimer’s Association in 2014, Alzheimer’s & Brain Awareness Month is dedicated to encouraging a global conversation about the brain and Alzheimer’s disease and other dementia. To learn more about the Alzheimer’s Association, available resources and how you can get involved to support the cause, visit alz.org/abam.
About the Alzheimer’s Association®
The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is 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. Our vision is a world without Alzheimer’s and all other dementia®. Visit alz.org or call 800-272-3900.
About the Alzheimer’s Association – Eastern North Carolina Chapter:
The Eastern North Carolina Chapter provides patient and family services, information and referral, education, and advocacy in 51 eastern North Carolina counties. It offers opportunities to get involved and to make a difference, in addition to a variety of services including a 24/7 Helpline, support groups, educational programs and care consultations. For more information about Alzheimer’s disease, or the Alzheimer’s Association – Eastern North Carolina Chapter, visit alz.org/nc or call 800-272-3900. For the latest news and updates, follow us on Facebook, Twitter and Instagram.
By Christine John-Fuller, Alzheimer’s Association