Alzheimer’s disease is considered to be young onset, or starting point, if in individual is age 65 or younger when symptoms first appear. Young-onset individuals may not necessarily be in the early stage of Alzheimer’s when diagnosed.
This information below presents some of the issues that young-onset individuals experience due to their younger age (e.g., children living at home, employment issues) and offers suggestions on ways professionals can assist young-onset Alzheimer families. The local Alzheimer’s Association can provide information, support and referrals to families facing young-onset issues.
Difficulty obtaining a diagnosis
Young-onset individuals may have a difficult time obtaining an accurate diagnosis due to:
- Younger age and healthy appearance ruling out Alzheimer’s disease
- Attributing Alzheimer symptoms to stress
- Diagnosis of depression or another psychiatric illness
- Conflicting diagnosis from different health care professionals
Tips for helping individuals obtain a diagnostic assessment:
- Call the Alzheimer’s Association for diagnostic protocol information and referral to a specialist.
- Advocate with managed care for a comprehensive diagnostic evaluation.
- Encourage young-onset individuals and caregivers to write down symptoms and other experiences to share with health care professionals.
- Refer caregivers to the Alzheimer’s Association Web site.
- Encourage caregivers to share information about Alzheimer’s disease from the Internet with health care professionals to confirm accuracy of information.
Financial challenges
Due to the age of young-onset individuals, insurance and other benefits may be more difficult to obtain and there may be more expenses to consider. Financial challenges may include the following:
- Loss of income and insurance coverage when no longer employed
- Reduction or loss of retirement benefits due to early retirement
- Delay in the eligibility for Medicare or disability
- Increase in family expenses due to treatment and care for diagnosed individual
- Spouse may need to work or increase hours to help support the family
Tips for addressing financial challenges:
- Investigate early retirement or other financial planning options if the young-onset individual is still working.
- Refer to a skilled financial adviser or attorney.
- Offer your assistance with completing the disability insurance application process.
- Arrange for the family to meet with social security consultants.
Impact on children
Children of a parent diagnosed with young-onset Alzheimer’s disease may feel:
- Fear and grief at the gradual losses the parent experiences
- Ashamed and may avoid inviting friends home
- Anxious if he or she detects stress in the parents’ relationship
- Alone due to the well parent focusing his or her attention on the diagnosed parent
- Awkward due to reversal of roles within the family
- Frustrated due to changes in lifestyle
- Frightened about his or her own future and the chances of getting Alzheimer’s disease
Tips for helping children cope:
- Refer to the Alzheimer’s Association for resources for children and teens, such as the Web site section just for kids and teens.
- Assess the child’s need for counseling and refer to a counselor who specializes in this area.
- Refer the child to a support group to express his or her feelings.
- Suggest the child’s teachers be notified and provided with information about Alzheimer’s disease.
- Help the caregiver find activities the child and the parent can do together.
- Assist the caregiver in making time to spend alone with the child.
- Encourage open communication between parent and child.
- Address fears related to heredity of young-onset Alzheimer’s and fears of “catching or getting” the disease.
- Refer to the Alzheimer’s Association for education about the limits of genetic testing.
Finding support services
Young-onset individuals may need additional support services to supplement help from family and friends. Challenges you may face include:
- Finding a home care agency that understands how to meet the specific needs of individuals with young-onset Alzheimer’s
- Locating respite services and adult day programs with participants the same age as the young-onset individual
- Locating a residential care setting with younger residents
Tips for helping families arrange support services:
- Inform families about the type of programs available in the community (e.g., respite care, home care, adult day programs) and link them to the needed resources.
- Contact the Alzheimer’s Association for community programs that specialize in Alzheimer care.
- Work with the family to discuss their issues regarding placement in a care facility.
- Assist the caregiver in finding residential care options before they are needed.
- Arrange for the caregiver to consult with an attorney or care manager to establish a financial plan for current and future needs.
