Evidence Shows Dementia in Younger People More Common Than Thought

One of the fears many people have is developing Alzheimer's or other dementia. The fact is there may be many more younger people afflicted with some type of dementia than what was otherwise thought.

An investigation of 74 past studies shows that the prevalence of young-onset dementia is much higher than thought and is probably lower than actual numbers due to underestimating becasue of the lack of high-quality data.

Sebastian Köhler, Ph.D. of Maastricht University in The Netherlands, and a co-author of an investigation published in JAMA Neurology report the global age-standardized prevalence of young-onset dementia was 119.0 per 100,000, corresponding to 3.9 million people ages 30 to 64.

"At one time in the not-too-distant past, young-onset dementia was considered a disease, whereas later-onset dementia was considered the inevitable consequence of aging," observed David Knopman, MD, of the Mayo Clinic in Rochester, Minnesota, in an accompanying editorial.

"We now reject such a formulation, but within that misguided dichotomy is a recognition of the dramatic differences in prevalence and incidence of young-onset dementia compared with later-onset dementia," Dr. Knopman noted.

Early On-Set Dementia Affects People in Their Prime

The investigation examined 95 studies published from January 1990 through March 2020 in a systematic review and included 74 of these studies, spanning 2,760,379 unique patients, in a meta-analysis. They focused on people in 5-year bands from ages 30 to 64.

Dr. Knopman says early-onset dementia can be 'particularly disheartening' since it affects people in the prime of their lives as they focus on their careers and families.  

"Most dementia care is geared for older patients, and as a consequence, services are rarely available to address the needs of someone diagnosed with dementia in their 50s who has dependent children at home and a spouse who must continue working," Knopman said.

The investigators say that milder cases of dementia are expected to be undercounted, meaning the total number would be even higher. 

Some Types of Dementia Have Genetic Component

There is a genetic component for some of the early on-set cases. For early-onset Alzheimer's, there is a genetic link for some cases that run in families. It is linked to three genes — the APP, PSEN 1, and PSEN 2, which is different than the APOE gene that can increase the risk of Alzheimer's in general.

Mayo Clinic says that getting an accurate diagnosis right away of suspected early on-set dementia is crucial for doctors to rule out other potential medical problems that could create cognitive decline symptoms; some of those could be treatable. Getting the appropriate treatment is critical, but that requires getting the correct diagnosis.  

For those with dementia, the individual will require supervision and other long-term health care services as dementia progresses. Families are usually unprepared for the financial strain as health insurance will not pay for most dementia care. 

Health Insurance and Medicare Pay Little to Nothing for Dementia Care

Unless an individual has Long-Term Care Insurance or is qualified for Medicaid (little or no income and assets), the individual's personal savings will pay for the care, or their families will provide care -- sometimes both. 

Family caregivers are rarely trained or prepared for this demanding job. 

The costs of dementia care continue to grow. Like all types of long-term care services, costs go up with labor costs. These costs vary depending on where you live Cost of Care Calculator - Choose Your State | LTC News.

Be careful; while Long-Term Care Insurance can pay for the care you or a loved one may need, you can't wait until you need the care to purchase a policy. LTC Insurance is medically underwritten, so you must have reasonably good health to obtain coverage.

According to a recent industry study, 29% of Long-Term Care Insurance applications were declined. The number of decline applications increases by age. This number does not count the number of applications that were 'rated" or approved with higher-than-expected premiums due to pre-existing health issues. 

Underwriting Rules and Premiums Vary Dramatically 

Every insurance company has its own underwriting rules. Some companies consider family history, including a history of Alzheimer's or dementia. A family history of first-degree blood relatives with dementia could prevent you from obtaining preferred rates, even limit the amount of benefits you could purchase, or even prevent you from obtaining any coverage at all. 

Experts have suggested investigating Long-Term Care Insurance in your 40s or 50s when premiums are still very affordable, and your health is generally better. Always shop the top companies since premiums and underwriting vary dramatically between insurance companies. A licensed and experienced Long-Term Care Insurance specialist can help navigate the many available options Work With a Specialist | LTC News