Preparing for Your Future After an Early Onset Dementia Diagnosis

A diagnosis of dementia can be devastating no matter your age. However, older adults, especially those over the age of 65, tend to be more aware of the possibility of dementia, and know that their risk statistically increases each year. But for younger adults, being diagnosed with dementia between the ages of 30 and 60 is not only upsetting—it can be outright shocking.

What is early onset dementia?

Early onset dementia, also known as young(er) onset dementia, is the occurrence of dementia in people under the age of 65. It is considered an uncommon form of dementia. According to the Mayo Clinic, only about five or six percent of Alzheimer’s cases are early onset. However, this number could potentially be larger. Many adults in this age category do not anticipate developing dementia, so may not get tested until the later stages of the disease. 

What causes early onset dementia?

This question is still the subject of research, and for many cases of early onset dementia, physicians aren’t sure of the direct cause. Research does confirm, however, that individuals with Down syndrome are at an increased risk for early onset dementia, due to an extra copy of chromosome 21, which can cause protein buildups in the brain.

Early onset dementia can also be linked to family history and genetics. According to research, mutations in three key genes are linked to early onset dementia. People with a family history of dementia often seek out genetic counselors to assess their risk and check for these mutations.

Learning about your condition

Before you start planning for the future after a diagnosis of early onset dementia, it’s important to learn what might be coming down the road ahead. Two of the most important first steps include:

• Learning what type of dementia you have: Alzheimer’s is the most common form of dementia, but not the only one. There is also Lewy Body dementia, frontotemporal dementia, vascular dementia, mixed dementia and various conditions that can lead to dementia, such a Creutzfeldt-Jakob disease. Knowing the type of dementia you have can help you be better prepared for what your symptoms might be, and what resources might be most helpful to you.
  
  To learn more, please visit our guide to understanding different types of dementia.
   
• Researching the different stages of dementia: Dementia is a progressive disease. In the early stages, it may not feel like much has changed. You’ll generally be able to take care of yourself even with lapses in memory and changes to your normal mood or behavior. In the later stages, however, you will need support in most areas of life. It’s important to be prepared for these changes, and to recognize that your current condition will change over time.
  
  To learn more, please visit our guide to navigating the different stages of dementia.

 
Preparing for your future care needs

Because of their younger age, people with early onset dementia may face different challenges than those who develop the disease at a later age. The below issues are important to consider as soon as possible, while still in the early stages of the disease. It can be sobering, but it’s essential to remember that if you don’t make decisions while you are able to, someone else will be making these decisions for you in the future.

• Employment and finances: Most people who develop early onset dementia are not at the age of retirement. This makes considering your employment and financial situation after your diagnosis a must.
  
  At work, start by having a conversation with your employer:
  • Have medical documentation prepared. Your doctor can also provide an assessment of your current ability to work
  • Be honest about what your limitations might be moving forward, and how you plan to proceed with your employment as the disease progresses
  • Ask if there is an employee assistance program in place that might offer support
  • Learn more about your options regarding disability insurance, medical leave and continuing coverage after you leave your job using COBRA
    
    Talking with a financial counselor about managing your finances and undergoing a benefits check-up could also be helpful during this time. You should also look into putting together estate planning documents:
    • Wills
    • Powers of Attorney
    • Trusts
    • Do Not Resuscitate order 
• The needs of your children: When older adults develop dementia, there’s a higher likelihood that their children are independent adults. Unfortunately, many with early onset dementia have children that may still be young.
  
  It’s important to make sure that your children understand what your diagnosis means, and receive the information they need on ways your memory, behavior and ability to communicate might change. This is even more important if one or more of your children will serve as caregivers. Encourage questions, share what information you have and seek out answers to what you do not know together. Your children should also be informed of your financial and future care decisions, if age-appropriate.
• Building a network of support and expressing your preferences for care: Depending on your age, you may not have even begun to think about needing a caregiver, who that person will be, and how and when they will help you. If so, it’s important to consider these things as soon as you can. Open up discussions with family, friends and other loved ones about who can help and in what ways. Be sure to clearly express your own opinions, wants and needs while you can. You might also want to write down whatever plan you come up with—it can change, of course, as your situation changes, but it will serve as a good starting point and reference for your loved ones.

Resources

Our services at Benjamin Rose Institute on Aging can support you and your caregiver(s) on your dementia journey. Our WeCare…Because You Do care coaching service can support you and your loved ones in building a care plan, addressing financial concerns, overcoming challenges and so much more.

Other resources include:

• The Alzheimer’s Association
• Dementia Friends USA
• Alzheimer’s Foundation of America
• National Institute on Aging
• U.S Department of Veterans Affairs

This article was written as a part of the Expansion of Dementia-Capable Communities within Urban and Rural Settings in Ohio using Evidence-Based and Informed Programming project, funded by the Administration for Community Living, Alzheimer’s Disease Program’s Initiative (#90ADPI0052-01-00). Learn more here.