Alzheimer’s in ActionAn online community connecting people and families affected by Alzheimer’s disease and other types of dementia.
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"What if I see you, and I don't know that
  you're my daughter, and I don't know that
  you love me?"

"Then, I'll tell you that I do, and you'll
  believe me.”

    - Lisa Genova, Still Alice -

About younger-onset Alzheimer’s

Alzheimer’s disease is considered to be younger-onset Alzheimer’s if it affects a person under 65. Younger-onset can also be referred to as early-onset Alzheimer’s. People with younger-onset Alzheimer’s can be in the early, middle or late stage of the disease.

The majority of people with younger-onset have sporadic Alzheimer’s disease, which is the most common form of Alzheimer’s and is not attributed to genetics. Doctors do not understand why most cases of younger-onset Alzheimer’s appear at such a young age.

However, researchers 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.

Like many people with younger-onset Alzheimer’s, receiving an accurate diagnosis may have been difficult.  Age or medical history can cause doctors to overlook or rule out Alzheimer’s disease. It’s also not uncommon to be told your symptoms may be related to stress, menopause or depression. This can lead to misdiagnosis (sometimes multiple times) and incorrect treatment.

Impact on you and your family

Learning about the unique challenges of living with younger-onset is the first step in understanding the impact the disease will have on you and your family. While this may be difficult for you at first, it can help relieve some of the anxieties and fears you may have about the future, and allow you more time to focus on the things that bring you joy.

While each family experiences the impact of younger-onset Alzheimer’s disease differently, there are common issues:

Your role as a parent      You may be one of the many people diagnosed with younger-onset who is raising a family. It can be painful to know that family dynamics will change. It is normal to grieve now about the anticipated changes in your parental role. It is also normal to wonder what role you will play in the significant events of your child’s life as he or she grows older and as the disease progresses.  Remaining strong for your child can be difficult as you cope with your own emotions. The best way you can help your child work through the challenges of living with the disease is to take good care of your own physical and emotional needs.

Talking with your child about your Alzheimer’s diagnosis may be difficult; it is something that you never anticipated having to do. You may want to protect your young family members and avoid the subject or delay sharing your diagnosis. Only you and your partner know the type of information your child is capable of understanding and how much he or she can handle.

Stigma There are many myths, misconceptions and stereotypes about Alzheimer’s disease. Because of your young age, people may not believe you have the disease, may question your diagnosis or dismiss it.  Stigma can have a significant impact on your well-being and quality of life. It may cause you to withdraw from your relationships and become isolated. Don’t fear stigma, fight it instead.

Plan for your future Prior to your diagnosis, you may have been saving for your child’s college education or your retirement. As someone in the early stage of the disease, you have the ability to put critical financial and legal plans in place.  Be confident about the decisions your family will need to make on your behalf when it becomes too demanding or unsafe for you to make your own decisions.

Talk with your family or consider speaking with a financial planner and an attorney.

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