Early-onset Alzheimer’s disease, also known as younger-onset affects people younger than 65, many people with this diagnosis are in their 40’s and 50’s, they have families and careers when Alzheimer’s disease strikes. In the United State it is estimated that approximately 200,000 people have early onset Alzheimer’s.
Getting a diagnosis for this dementia presents serious problems for people under 65. Health care providers generally don’t look for the disease in younger patients and it is not uncommon for doctors to say that the symptoms may be related to stress menopause or depression. It can therefore be months or years before the right diagnosis is made and proper treatment can begin.
Although Early-onset Alzheimer’s disease (EOD) currently has no cure doctors have had some success in helping people maintain function, control behavior and slow the progression of the disease, in addition researchers are learning new things about Alzheimer’s disease every day.
The medical community does not know the exact cause of the disease but researchers do know genetics play a role in Alzheimer’s. There are risk genes, which increase the likelihood of developing a disease, but do not guarantee it will happen. And there are deterministic genes that directly cause a disease, guaranteeing that anyone who inherits them will develop the disorder.
After a younger-onset diagnosis, individuals can often live meaningful and productive lives and still have much to contribute to the world.
Impact on the family
Family dynamics will almost surely change. In the role of parenting talking about an Alzheimer’s diagnosis is often difficult and decisions need to be made regarding timing especially when younger children are concerned, often the child is too young to understand.
It is normal that the whole family will experience grief and usually counseling is a good idea.
Having a diagnosis makes it possible for the person in the early stage of EOD to have the opportunity and time to put critical financial and legal plans in place. To talk to family members and to gain confidence about decisions family members may need to make on their behalf when it becomes too demanding or unsafe for them to make decisions.
Receiving a diagnosis while working
For the person with EOD it is critical to be educated about the benefits that may be available through their employer and through this knowledge be able to maximize these benefits before needing to leave the job
Benefits offered by an employer may include
Disability insurance provides income for a worker who can no longer work due to illness or injury. The insurance plan must be in place before symptoms of Alzheimer’s disease appear. With an employer sponsored disability policy, a percentage of salary may be provided. Benefits paid out of an employer plan may be taxed as income
COBRA is a federal law that allows individuals to continue their health care coverage after leaving a job. COBRA refers to the Consolidated Omnibus Budget Reconciliation Act of 1985 and is available to those who work in companies with 20 or more.
Receiving a diagnosis after leaving a job
Lack of health insurance for those with EOD and their families and high out-of pocket expenses for medical care can put a significant strain on the financial situation and the ability to get the appropriate medical care needed. There are though some programs that at least may help somewhat with finances.
Medicare is a federal health insurance program generally for people aged 65 or older who are receiving Social Security retirement benefits, but does offer benefits for individuals who are younger than 65 and have received Social Security disability benefits for at least 24 months.
Pre-existing Condition Insurance Plans were established under the Affordable Care Act. The federal government will provide premium subsidies to low and moderate income individuals to help them purchase health insurance, and will offer subsidies to businesses that provide health insurance coverage to retirees aged 55 to 64.
It may be possible to tap into financial resources from retirement plans, even if the person with EOD has not yet reached retirement age. Retirement plans include Individual Retirement Accounts (IRAs) and annuities. Pension plans will typically pay benefits before retirement age to a worker defined as disabled under the plan’s guidelines. It may also be possible to withdraw money from an IRA or employee-funded retirement plan before age 59 1/2 without paying the typical 10 percent early withdrawal penalty.
Although a devastating diagnosis it is possible to live well with Alzheimer’s by taking control of health and wellness, and focusing energy on the aspects of life that the person with EOD finds most meaningful.
In an NPR special Alzheimer’s Association Early Stage Advisor Greg O’Brien offers a glimpse of what it’s like to live with EOD. Greg a journalist and writer was diagnosed with disease 6 years ago.
You can access this series through this link.