While Alzheimer’s is most often linked older adults, it may also arise at an early age, when someone is in the 30s or 40s. This is tied to underlying conditions such as Downs Syndrome, but at other times its arrival is a mystery.
It is also considered hereditary. There are risk genes, which increase the likelihood of developing a disease, but do not guarantee it will happen. There are also deterministic genes that directly cause a disease, guaranteeing that anyone who inherits them will develop the disorder.
A thorough diagnosis is necessary with a trained geriatrician or neurologist for a correct diagnosis and to rule out other physical problems. Although no one wishes for this disease, a diagnosis allows an individual to make plans for the present and for the future. The more a person and a family know, the wiser the decisions made.
Early onset sometimes refers to anyone under 65 who is diagnosed with Alzheimer’s or it references the early stage of the disease, with mid- and late stages to follow.
Age or medical history can cause doctors to overlook or rule out Alzheimer’s disease. It’s also not uncommon to be told that symptoms are related to stress, menopause, traumatic life changes, or depression. Misdiagnosis causes late diagnosis or incorrect treatment.
Early-stage symptoms are often sporadic with good days then rougher days; remembering the minutest detail and then forgetting something that just occurred. Learning to live with anxiety and fear helps alleviate some of the frustration and confusion.
Depending on the type and requirements of employment, people may remain on the job indefinitely. Understanding supervisors and co-workers make a positive difference.
If this is not the case the individual with early onset may qualify for disability benefits. Application for these, must come prior to a diagnosis of Alzheimer’s. This may feel unfair, but it protects the insurance system from the long-term expense. Insurance or a pension may not allow for the same lifestyle, but it provides a financial lifeline.
Then comes the stigma. With younger or early onset, since signs and symptoms may come and go, many will not understand or believe, wondering how a person can move back and forth through cognitive changes. It cannot be explained other than telling others that the disease does not define the individual, but rather is simply a part of this lifecycle.
Unfortunately, negative reactions may include turning away, ignoring, and complete disconnection at a time when patience and friendship are vital. The individual must work to fight the stigma, to clarify the disease manifestations, and then to accept support, well-meaning or otherwise. This, of course, is not easy when people have been cruel or have abandoned the person living with dementia. It is a time when one recognizes true friends who love and care regardless.
There may also be truths that are not shared or that are shared only in tiny bits. Some might call these “secrets” which reflect a negative connotation. From my observations I view it as a means of protection. A person with an Alzheimer’s diagnosis may want to guard the feelings and emotions of those who are the closest, trying not to burden them or drag them down.
A trusted friend, counselor, or support group offers the chance to off-load some of the worry and guilt. With no cure, reversal, or prevention this disease is depressing and proves to be an unwieldy, treacherous load. Who to tell, what to say, how to go about the challenges of daily living are a few of the concerns that accompany dementia. This has led me to a conclusion – a younger/early to mid-stage discussion group is necessary.
We could gather once or twice a month at Humboldt General Hospital (we have been offered a room), a coffee shop, or when the weather warms, the park. The idea is offering time to search resources, discuss concerns, seek insight, and discover ways to carry on in this very difficult situation. As we gain from each member, we will expand personal understanding and improve life beneath this cloud. We will discover the crucial moments of sunshine and calm in the safety and security of others who are facing similar uncertainties and apprehension. I do not presume to understand Alzheimer’s or to know intricate solutions, but I can listen and Iearn. Together we will battle this disease with the hope of making a difference for ourselves and others. There is power in knowledge and friendship.
Contact me for more information: ginilc25@gmail.com