Dementia is usually thought of as a health concern of the elderly — but for a few patients, a dementia diagnosis comes earlier. This loss of memory and cognitive abilities at a younger age is called early-onset dementia. Diagnosis of early dementia is a challenge, and dementia treatment is complicated by the demands of younger families and jobs.
“The majority of cases of dementia in the United States are in people over 65, and 50 percent are in people over 85 years old but … we’ve seen patients who have the disease at 35,” says Raj C. Shah, MD, medical director of the Rush Memory Center at Rush University Medical Center in Chicago.
As many as 6 percent of Alzheimer’s disease cases occur before age 65, usually in a person’s forties or fifties. Close to 60 percent of those cases are inherited — 13 percent appear in families in which three generations have developed Alzheimer’s disease. Alzheimer’s disease is the most common cause of dementia symptoms, but other causes of early-onset dementia include:
  • Vascular dementia. Changes in blood flow to parts of the brain, often due to mini-strokes, can begin in mid-life.
  • Frontotemporal dementia. A fatal disorder in which parts of the brain shrink.
  • Parkinson’s disease. Motor skills — walking, balance, and the like — deteriorate because the brain stops producing dopamine.
The Complications That Come With Early Dementia
 
Early-onset dementia comes with complications that do not arise in later years, including:
  • Difficult dementia diagnosis. Dementia is usually not a doctor’s first conclusion when a person starts to lose cognitive function in middle life — which means that it can take a while to arrive at a correct diagnosis. However, while the diagnostic process is taking place, dementia symptoms can wreak havoc on personal relationships and work obligations.
  • Family. When people are diagnosed over age 65, they are usually finished with child-rearing responsibilities, but early-onset dementia can interrupt family life as adults in middle age may still be raising children, supporting young adults in college, and even caring for their own aging parents.
  • Employment. Dementia treatment often focuses on helping patients stay as long as possible in the working world. Patients and families also have to work with employers to adjust workloads or tasks to suit abilities.
  • Finances. The burden of early dementia combined with the possible loss of employment can cripple a family’s financial situation.
  • Qualifying for services. Many services and funding programs are only available for people over age 65, which means patients with early onset dementia and their families have to work harder to get the support they need.
Handling an Early Dementia Diagnosis
 
“We have to take a slightly different approach to building the care plan,” says Dr. Shah. A care plan is a detailed approach to dementia treatment that creates a so-called web of services around the patient and his family. These services include a medical team, occupational therapists, support groups, and community services or agencies that can provide assistance.
Therapy may be necessary for the children and spouses of the dementia patient, who may experience significant anger, grief, and resentment over an early dementia diagnosis. The care plan has to be adjusted as the needs of the patient and family caregivers change.
There may be a perception that early dementia progresses more rapidly than later onset dementia, but this is likely because everything related to dementia treatment, including entering a nursing home, is happening at an earlier age rather than happening more quickly or severely.
Early onset dementia places a significant burden on families — but with the dedicated help of their medical team, friends, family, and coworkers, patients may be able to maintain quality of life for many years.