This morning I attended a networking event and the speakers were Melanie Chavin & Nicole Batsh from the Greater Illinois Chapter of the Alzheimer's Association.
The very first thing we learned was the difference between "early stage" & "early on-set". You can be any age and be in the early stage. It is the first stage of the disease where the short term memory issues are starting to interfere with your day to day. Early Onset affects people under the age of 65 - including some in their 30's!, 40's or 50's.
We heard an example this morning about a young man who was diagnosed at 36! He has three children under the age of 15 and his wife was a stay at home mom. He worked in construction and so he eventually lost his job. They lost their home, they lost their car - basically anything that depended on that lost salary. The wife is now going back to school so that she will be able to have a job that will support the family in the future. On the plus side, the gentleman, who is now only 39 is living out his dream of being a high school coach so he is working at that job now, and enjoying every moment he can.
The following is from a handout we received from Melanie & Nicole, provided by the Alzheimer's Association:
- Many researchers believe that young-onset Alzheimer's accounts for up to 10% (!!) of Alzheimer's cases.
- Individuals who have young-onset Alzheimer's experience symptoms similar to those found in late-onset Alzheimer's.
- Individuals are often active with a career, family and social obligations and may be more physically healthy when the symptoms begin.
There are important issues that affect the person with early-onset Alzheimer's such as:
- Changes in the relationsips with family, spouse & friends
- The impact of diagnosis on career
- The impact of diagnosis on finances, for example, pay for a child's education and future health care costs
- As a result and in addition to their younger age, the person may have difficulty obtaining an accurate diagnonsis
- Many people find that they are diagnosed with a psychiatric illness initially, as many healthcare professionals may attribute the symptoms to stress, depression and other psychiatric disturbances
(Often, they don't get the information on the disease that they need or the treatment or even information on community support..)
Living with early-onset Alzheimer's:
- Financial and legal planning are key when diagnosed with young-onset Alzheimer's
- Life is not over - individuals can have meaningful and productive lives by engaging in the activities and interests they enjoy
- Facility placement can be more difficult as younger onset individuals can be physically healthy and because of their young age, not fit in with other facility residents.
We had someone with early-onset living in our assisted living when I worked there - she was in her early 50's and looked great - so most people thought she was actually an employee, not a resident...
For more information and support call the Alzheimer's Association Helpline 24 x 7 at 1-800-272-3900
