June 2—This June, during Alzheimer’s Disease and Brain Awareness Month, the Alzheimer’s Association reveals insights from people with early-stage dementia and what they would like others to know about living with Alzheimer’s disease and other dementias.
Here are six things people with early-stage Alzheimer’s disease and other forms of dementia want you to know:
>> My Alzheimer’s diagnosis does not define me. Although a diagnosis of Alzheimer’s disease is life-changing, many people with the disease say their diagnosis does not change who they are. Many people diagnosed say they want to continue doing the activities they love for as long as possible and stay engaged with family and friends.
>> If you want to know how I’m doing, ask me. The sudden change in how others communicate with someone recently diagnosed with Alzheimer’s disease or another dementia is a frustrating experience for many people living with the disease. Many people say it can be upsetting when family and friends only verify the person through a spouse or adult child. They say avoiding or avoiding direct communication only makes them feel more isolated and alone.
>> Yes, young people can get dementia. While the vast majority of Americans affected by Alzheimer’s disease and other dementias are age 65 and older, the disease can affect younger people. People diagnosed with Alzheimer’s disease at an early stage (before age 65) say it is important for others to avoid the common misconception that Alzheimer’s disease and other dementias only affect than older people and to take cognitive problems seriously at all ages.
>> Please don’t discuss my diagnosis or tell me that I don’t look like I have Alzheimer’s disease. While family members and friends may be well-meaning in trying to dismiss an Alzheimer’s diagnosis, many people living with the disease say such responses can be offensive. If someone says they’ve been diagnosed with dementia, take them at their word.
>> Understand sometimes that my words and my actions are not me, it is my disease. As Alzheimer’s disease and other dementias progress, individuals may experience a wide range of disease-related behaviors, including anxiety, aggression, and confusion. Those diagnosed say it is important for others to recognize symptoms related to the disease, so they are better prepared to support the person and overcome communication and behavioral issues.
>> A diagnosis of Alzheimer’s does not mean that my life is over. Earlier detection and diagnosis of Alzheimer’s disease and other dementias gives those diagnosed more time to plan for their future and prioritize the things most important to them. Many people with early-stage Alzheimer’s disease and dementia say they want to continue leading active, fulfilling lives for as long as possible.
“The stigma surrounding Alzheimer’s disease and other dementias is due in large part to a lack of understanding of the disease,” David Hernandez, executive director of the West Texas Chapter, said in a press release. “These personal insights from people with early-stage dementia highlight common stigmas associated with the disease and provide valuable tips for improving how Texas residents can support and engage these people.”
To learn more about Alzheimer’s disease and other forms of dementia and how you can support individuals and families affected by dementia, visit alz.org/westtexas.