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The challenges of Young-Onset Dementia are unique, and you are not alone.

Diagnosis and Misdiagnosis

  • Young onset dementia is considered rare, which often means that getting an accurate diagnosis is challenging and often takes a long time. Families know that getting an accurate and early diagnosis is critical to managing dementia.
  • Typical misdiagnoses for younger patients include depression, high stress, sleep apnea, or symptoms that resemble some other psychiatric illness. Surprisingly, there is a general lack of knowledge in primary care physicians and specialists.

Loss of Income

  • The necessity to give up employment and driving takes an emotional and financial toll on everyone in the family.
  • Younger patients have more significant financial responsibilities when their prime wage-earning years are cut short. Often there are still children in the home.
  • As the disease progresses, the spouse or caregiving partner may need to retire earlier than planned. As the role of caregiver increases, they will often progress to part-time or full-time care when funds are not available for placement or a home care agency.

Managing Significant Practical Changes

  • Families lack access to personal guidance for navigating the many decisions made throughout the stagers of the dementia maze.
  • Managing mounting health insurance bills, co-pays, and increased paperwork and phone calls can be overwhelming and time-consuming.
  • Losing health insurance and filing for disability is an equally overwhelming, time-consuming process, although crucial to accomplish.
  • It may become necessary to relocate or downsize to a smaller home.

Family Relationships and Milestones Disrupted

  • Maintaining child-parent relationships can be challenging with children living in the home.
  • Young adult children may be still launching, planning weddings, child rearing, or attending college.
  • School aged children are limited in extracurricular activities when a parent cannot provide transportation or are unable to afford the additional costs.
  • Parents agonize over how and what to tell their children. Often, children may think what’s happening to their parent is their fault or they feel embarrassed by their parent at school functions.
  • College-age adult children tend to “give it all up” with little regret at the time. However, this can lead to consequences as they launch and begin their adult lives after school.

Everyone is Grieving

  • Accepting and coping with losing skills at a young age is especially difficult for the person affected.
  • Family members are trying to balance their own sense of loss, sadness, and exhaustion while also supporting the person affected.
  • Anticipatory Grief/Dementia Grief affects everyone- regardless of age- in the family. Family roles change and personalities change.

Caregivers’ Physical and Emotional Health are Compromised

  • Physically fit younger patients may be challenging for care providers when they wander away, become lost or act out with aggression.
  • Senior parents caring for their adult child fall back into the old roles of responsibility of parent to child. Along with dealing with their own aging health concerns, senior parent’s lives become defined by their child’s dementia. Grandchildren may need additional care and attention.
  • Caregiver burn-out and stress is challenging and affects most aspects of a caregiver’s life.

Loved One Changes Habits and Appearance

  • Hygiene issues, such as hair care, showering, clothing choices, and poor self-care require more help and are emotionally distressing for both children and adults in the family.