This article is reprinted with permission from the Alzheimer’s Association of the Santa Barbara, San Luis Obispo, and Ventura Calif. chapter, and is excerpted from their quarterly publication Side by Side, Fall 2002. Deborah Dunn MFT, is the director of patient and family services at the Santa Barbara, San Luis Obispo, Calif. chapter of the Alzheimer’s Association.
One group of people touched by Alzheimer’s disease are families in which a member is diagnosed with early-onset Alzheimer’s disease. Early – onset describes the younger age of the person who is diagnosed (usually considered under 65). These families face the challenges similar to any family dealing with this diagnosis; however, they often have some distinct challenges unique to the younger diagnosed person and their family.
Randy, at the age of 48, first began having problems at work where he was a top level manager in a computer company. He began to bring projects from work home and work hours every evening in an effort to finish tasks that now seemed beyond his ability to complete.
Randy’s boss was the person who sat down with him one day and asked Randy if he was under any unusual stress because he could see changes in him and was concerned. It was this catalyst that prompted Randy and his wife Sara to seek medical help.
More and more physicians are diagnosing patients at an earlier age with Alzheimer’s disease. The improvement in diagnostic techniques, the increased knowledge of physicians and the increased awareness of the public are some factors that contribute to more persons being diagnosed earlier in the disease no matter what age they are. The early-onset diagnosis comes as double the shock because we don’t want to accept that someone in their 40’s could have Alzheimer’s.
Randy and Sara went through months of testing to come to the confirmed diagnosis of Alzheimer’s. As it was then apparent that Randy could not continue with his work they had to adjust to the loss of his income. Their son and daughter were included in family discussions that reexamined whether they could afford the colleges that both kids were preparing to attend. The family realized that their time with dad as they knew him was more precious than ever and this factored into decisions of attending college closer to home. Sara became the primary breadwinner for the family and Randy had to learn to fill his days and feed his self-esteem in new ways.
As with all families challenged with the diagnosis of Alzheimer’s the emotional fallout is huge; with early-onset it can be an especially difficult adjustment for the children and the financial security of the family.
Randy and Sara and their kids have done well over time. They have readjusted their plans and family roles to support each other and manage dad’s symptoms. By asking for help early on from agencies in their community, including the Alzheimer’s Association, the family had help in long-term planning, using outside support systems, and education about the progress of the disease and how to meet the often challenging symptoms. In facing the diagnosis early on and united as a family, they gave each other the chance to enjoy their relationship with dad and arrange special family time now, rather than putting it off until too late.
Randy was fortunate in that his boss and company were supportive and empathetic with their approach to the changes they saw in him at work. There are many incidents in which a younger person who is experiencing symptoms of dementia is fired from their job before they or their loved ones understand what is occurring. With more education and people who are affected speaking out, hopefully we can raise the level of awareness and understanding so that anyone faced with early-onset will be supported through the process.