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What should I know about caring for a loved one with early onset dementia?

Dr. Gary Small, MD
Psychiatrist (Therapist)

Families and people with early-onset dementia face specific challenges. 

Getting an accurate diagnosis can be difficult and frustrating because the dementia starts early in life. Usually, doctors see dementia in older people. It’s not expected in a younger person, so the symptoms may be ignored or the doctor may not pay close attention to them. 

Job loss and loss of income is another concern. The dementia occurs while people are still employed. The family loses income, and there's an effect on the person's self-esteem. Challenges include difficulty getting Social Security disability insurance, supplemental security income and other disability payments.

Early-onset dementia often goes together with health insurance concerns and high out-of-pocket medical care costs. People under age 65 generally do not have Medicare. Early-onset dementia patients may qualify for benefits, but only after a two-year waiting period. Those with health insurance are likely to have high out-of-pocket expenditures for premiums, deductibles, copayments and other services.

Long-term care expenses can be expensive. Adult daycare and respite care can be less expensive, but the total cost will add up when they're used consistently over extended periods of time.

Another issue is the lack of appropriate medical care, residential care and community services. Most services for people with dementia are designed for and targeted to older adults. Many people with early-onset dementia are uncomfortable with those services and tend not to use them.

Healthcare, residential care and community service providers may not know how to treat, provide care for or communicate with people with early-onset dementia. There aren’t any training programs to address these problems.

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Important: This content reflects information from various individuals and organizations and may offer alternative or opposing points of view. It should not be used for medical advice, diagnosis or treatment. As always, you should consult with your healthcare provider about your specific health needs.