When our group first gathered we wanted to define the differences between Young Onset and Regular Onset Alzheimer’s in order to illumine the unique challenges that Young Onset patients and their families face. Below is a comparison between the two diseases around four core issues.
| Young-Onset (Early Onset) Alzheimer’s Disease | Regular-Onset Alzheimer’s Disease | |
|---|---|---|
| Economics | Often diagnosed at height of earning power; if the affected person is the sole or primary earner, income potential is limited after onset | Family on fixed income with set resources that may not be adequate to care for a long-term illness |
| Family may have to dip into retirement and/or college savings | Family depletes retirement savings or potential to save, requiring individuals to work into their 70s | |
| May be financially supporting dependent children or parents | May still be financially supporting dependent parents | |
| May be fired before the diagnosis, thereby eliminating options for long-term disability | May be too late for long-term care insurance; premiums skyrocket with age | |
| Must have two years’ worth of SSDI/Title II disability benefits before they can apply for Medicare coverage | Medicare coverage starts at age 65 | |
| Caregiver may have to give up work entirely, or might be terminated for lower performance | Caregiver may have to give up work entirely, or might be terminated for lower performance | |
| Potentially, credit rating could be damaged, or home could be lost due to depletion of income | Potentially, credit rating could be damaged, or home could be lost due to depletion of income | |
| Family Issues | May be caring for dependent children or parents | May be alone |
| Children experience loss from both parents • The affected parent can no longer care for and guide them • The other parent becomes overwhelmed by caregiving • The child may have to serve as the caregiver to the parent or younger siblings | Children are older and are able to provide care for parent Children may be working full time, caring for their own children, and may not be able to care for parent |
|
| Social stigma, since others aren’t accustomed to seeing younger folks with dementia; families may experience social exclusion and isolation | Stigma that the affected person has already lived a full life, so this isn’t so bad | |
| Their children fear the risk of getting Young-Onset due to genetics | Their children fear getting Alzheimer’s as they age | |
| A parent feels guilt from having a disease that could affect their children | May have a spouse with significant healthcare issues as well | |
| Diagnostic and Support Issues | Obtaining an accurate diagnosis is nearly impossible; general practitioners and specialists are often not willing to consider the disease in younger persons. • Non-memory symptoms are overlooked, such as behavioral or executive dysfunction, or language deficits • Alternative conditions are considered first: ADD, menopause, depression • No sense of urgency with memory loss or other symptoms • Regardless of the presenting symptoms, the delay to actual diagnosis is often over 3 years | Acceptance of the idea that memory loss is a normal part of aging, results in not getting properly diagnosed |
| Available Alzheimer’s services are targeted to older folks. Younger patients: • Are more physically fit and prefer activity-based programs • Are sexually active • Have different interests and sensibilities • Lack of appropriate services results in reduced participation and increased isolation • Have access to more information through technology and active networks | Services are targeted for the activity levels and sensibilities of those 65 and older • Can relate to support group participants who are the same age • Depend on their web-savvy children to find services and support |
|
| Research | Options for clinical trial participation are limited due to younger age | Many opportunities to participate in clinical trials |