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The Why and How of Early-Onset Dementia

Dementia is commonly associated with older age. However, recent statistics show that about 3.9 million people in the 30-64 age group may be suffering from dementia globally, with Alzheimer’s being the most prevalent—there are an estimated 300,000-360,000 early-onset Alzheimer’s patients living in the U.S.

Before we go any further, we find it is necessary when talking about dementia to also talk about caregiving. Patients Rising has developed a CAREGIVER RESOURCE HUB to help you better understand that complex yet vital role.

– Jim Sliney Jr, Editor

Types of early-Onset Dementia

Development of early-onset dementia may be different from that in older individuals and the symptoms may vary as well, which can result in diagnostic delays. Of the different kinds of dementia, the following are the most common among younger individuals:

  • Alzheimer’s: Less common than in older individuals: one-third of young individuals with dementia will have Alzheimer’s disease, compared to two-third of the older population with dementia. While memory loss is the first obvious sign of Alzheimer’s plaques in the senior population, it isn’t among the young.
  • Atypical Alzheimer’s: More common in the younger population, symptoms vary depending on the specific disease type:
    • Inability to understand visual information such as judging distance
    • Struggling with words or language
    • Social behavior issues and problems with decision making 
  • Familial Alzheimer’s: As the name suggests, this rare form of the disease runs in families and is a consequence of genetic mutations that a parent can pass on to their offspring. Symptoms may be evident in the 30s, 40s or 50s. 
  • Vascular dementia: Interrupted blood supply to the brain is the primary cause of this form of dementia, which is linked to diabetes and cardiovascular disease. Typical symptoms may vary and are associated with a slowdown in the person’s thought processes. 

Challenges With Diagnosis, Impact on Family

With some of these symptoms, dementia is not top-of-mind for most physicians who are examining the individual. This may result a in delayed diagnosis or conflicting diagnoses from different physicians, wrong treatment, and frustration for the patient. A comprehensive examination by a specialist in Alzheimer’s disease is a necessity for an accurate diagnosis.

It is also important to understand how this can impact your immediate family members, particularly your children if you are raising a family. The Alzheimer’s Association recommends:

  • Ensuring your own emotional and physical needs are being met
  • Deciding with your spouse/partner if and when you want to speak with your children about the diagnosis
  • Reassessing your financial plan with your family or a financial professional, especially if it includes planning for your children’s education

Other Tips and Helpful Resources

Loss of income from your inability to work is a possibility. Your partner/spouse’s ability to work may also be impacted as they take on caregiving duties. Consider how this will affect your income and your financial future. Consider speaking to a financial planner. This financial planning resource could also be useful.

If you are working, you can avail of the following through your employer before you leave your employment:

  • Disability insurance plan, which must kick off prior to symptoms
  • Family and Medical Leave Act: allows 12 weeks of annual unpaid leave for family and medical reasons
  • COBRA: allows continued group health plan coverage (18, 29, or 36 months) after you leave your employment 

The Social Security Administration recognizes early-onset Alzheimer’s as a disability under its Compassionate Allowance program, so those diagnosed can have access to Social Security Disability Insurance and Supplemental Security Income. 

Surabhi Dangi-Garimella, Ph.D. is a biologist with academic research experience who brings her skills and knowledge to the health care communications world. She provides writing and strategic support to non-profit groups via her consultancy, SDG AdvoHealth, LLC.

Surabhi Dangi Garamella

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