Young-onset Alzheimer's: When symptoms begin before age 65

When Alzheimer's begins in middle age, misdiagnosis may be more likely. This rare form of Alzheimer's affects work, finances and family.

By Mayo Clinic Staff

What is young-onset Alzheimer's?

Young-onset (also called early-onset) Alzheimer's is an uncommon form of dementia that affects people younger than age 65. About 5% to 6% of people with Alzheimer's disease develop symptoms before age 65. So if 4 million Americans have Alzheimer's, around 200,000 to 240,000 people have the young-onset form of the disease.

Most people with young-onset Alzheimer's develop symptoms of the disease when they are between 30 and 60 years old.

Causes

Most people with young-onset Alzheimer's have the most common form of the disease, called sporadic Alzheimer's. This type isn't caused by genetics, and experts don't know why these people get the disease at a younger age than others do.

But others with young-onset Alzheimer's have a type of the disease called familial Alzheimer's disease. They're likely to have a parent or grandparent who also developed Alzheimer's at a younger age.

Young-onset Alzheimer's that runs in families is linked to three genes — the APP, PSEN 1 and PSEN 2 — that differ from the APOE gene that can increase your risk of Alzheimer's in general.

Together, these three genes are present in less than 1% of all people with Alzheimer's but in about 11% of people with young-onset Alzheimer's. If you have a genetic mutation in one of those three genes, you may develop Alzheimer's before age 65.

Genetic testing for these mutations is available, but anyone who's considering it should pursue genetic counseling — to examine the pros and cons before getting tested.

For example, it may be helpful to consider how a positive test may affect your eligibility for long-term care, disability and life insurance.

On the other hand, if you know you carry a form of the young-onset genes, you may be able to take steps to make it easier for you and your loved ones to cope with the effects of the disease.

If you have young-onset Alzheimer's linked to one of the three genes or carry a form of these genes without symptoms, talk to your doctor about participating in a research study. By studying the young-onset form of Alzheimer's, researchers hope to learn more about the causes and progression of the disease and develop new treatments.

Accurate diagnosis critical

An accurate diagnosis of young-onset Alzheimer's is crucial for medical reasons to rule out other potential issues and get the most appropriate treatment as well as for personal and professional reasons.

For you and your family, the diagnosis is fundamental in helping your family respond with appropriate understanding and compassion. It can also give you and your family more time to make important decisions about financial and legal issues.

At work, it can allow you to explain your condition to your employer and perhaps arrange a lighter workload or more convenient schedule.

How to cope with young-onset Alzheimer's

Alzheimer's disease has a tremendous impact at any age. But people with young-onset Alzheimer's disease may face some unique challenges.

They may face stigmas and stereotypes about the disease. Due to their young age, people with young-onset Alzheimer's may find that others do not believe they have the disease or question the diagnosis.

People with young-onset Alzheimer's may lose relationships or jobs as a consequence of this misunderstanding instead of being identified as medically ill or disabled.

They may also face a loss of income from being diagnosed while still working.

What to do at work

Before your condition significantly affects your ability to do your job, talk to your employer. What you can do:

  • Find out if you can switch to a position that better suits your emerging limitations.
  • Familiarize yourself and your spouse, partner or caregiver with your benefits, and find out whether an employee assistance program is available.
  • Explore what benefits may be offered to you under the Americans with Disabilities Act, Family and Medical Leave Act and COBRA.
  • If you feel overwhelmed, consider reducing your hours or taking time off.

Coping tips for couples

After a diagnosis of young-onset Alzheimer's, spouses or partners often feel a sense of loneliness or loss as they face the possibility of spending many years without an active partner.

Losing the romantic component and changing to a caregiver status also complicates the relationship. Try to:

  • Talk about what kind of help you need from each other. Communicate about changes you're experiencing and ways in which your needs also may have changed. Don't be afraid to ask for help.
  • Continue participating in as many as possible of the activities that you currently enjoy with your partner and adapt as necessary. Or find new activities that you can enjoy together.
  • Keep a folder of resources you may need as the disease progresses.
  • Find a counselor who works with couples facing issues you feel challenged by, such as sexuality and changing roles in the relationship.

How to involve kids

A diagnosis of young-onset Alzheimer's can also be difficult for children, who may not understand. Children may blame themselves, become angry or react in any number of ways. Try to:

  • Find activities you can enjoy together.
  • Stay engaged and talk with your children honestly about what you're experiencing.
  • Find a support group for children, and invite your kids to some of your counseling sessions. Make your child's school counselor and social worker aware of your condition.
  • Keep a written, video or audio record of your thoughts, feelings and experiences for your children. They'll appreciate your sharing your wisdom and memories.

Financial issues

People with young-onset Alzheimer's often have to quit work, and this loss of income is a serious concern. Finances get even tighter if spouses or partners also quit their jobs to become full-time caregivers.

Some medical benefits plans and many social-support programs won't provide assistance unless the person with Alzheimer's is older than age 65. Younger people may need special waivers to get into such programs. What you can do:

  • Talk with a financial planner and an attorney to help you plan for your future financial needs.
  • Ask your employer whether early retirement is an option.
  • Explore what benefits may be available to you through Social Security, Medicare or Medicaid.
  • Organize your financial documents and make sure your spouse or partner understands and can manage your family's finances.

Clinical trials

The Alzheimer's Association created the Longitudinal Early-Onset Alzheimer's Disease Study (LEADS) to learn more about the disease, including its causes and early detection possibilities. For more information about LEADS or to enroll, visit the Alzheimer's Association page here.

Resources for support

Key elements of Alzheimer's care are education and support. This is especially true in young-onset Alzheimer's given its unique challenges. Getting connected to services such as support groups can help you identify resources, gain a deeper understanding of the disability and learn ways to adapt.

Remember, you're not alone. Many resources are available to assist you, your family and your caregivers in coping with this disease. Options for support may vary depending on where you live.

In the early stages of the disease, be sure that you and your spouse or partner do research and establish a plan for managing the progression of your condition. Knowing you have a plan and have identified support and resources will help everyone in the future.

March 17, 2020 See more In-depth

See also

  1. MIND diet may cut Alzheimer's risk
  2. Adult day service
  3. Alzheimer's sleep problems
  4. Alzheimer's: New treatments
  5. Alzheimer's 101
  6. Alzheimer's and dementia care: 8 tips for doctor visits
  7. Alzheimer's and daily tasks
  8. Alzheimer's and dementia: Tips for daily care
  9. Understanding the difference between dementia types
  10. Alzheimer's: Can a head injury increase my risk?
  11. Mediterranean diet
  12. Alzheimer's disease
  13. Alzheimer's disease: Can exercise prevent memory loss?
  14. Alzheimer's drugs
  15. Alzheimer's genes
  16. Alzheimer's nose spray: New Alzheimer's treatment?
  17. Alzheimer's or depression: Could it be both?
  18. Alzheimer's prevention: Does it exist?
  19. Alzheimer's stages
  20. Alzheimer's test: Detection at the earliest stages
  21. Alzheimer's and holidays
  22. Antidepressant withdrawal: Is there such a thing?
  23. Antidepressants and alcohol: What's the concern?
  24. Antidepressants and weight gain: What causes it?
  25. Antidepressants: Can they stop working?
  26. Antidepressants: Side effects
  27. Antidepressants: Selecting one that's right for you
  28. Antidepressants: Which cause the fewest sexual side effects?
  29. Anxiety disorders
  30. Atypical antidepressants
  31. Axona: Medical food to treat Alzheimer's
  32. Benefits of being bilingual
  33. Caffeine and depression: Is there a link?
  34. The role of diet and exercise in preventing Alzheimer's disease
  35. Can music help someone with Alzheimer's?
  36. Can yoga help me keep caregiver stress in check?
  37. Caregiver stress
  38. Dementia caregiving: Dealing with the strain on your marriage
  39. Long-distance caregiving
  40. Clinical depression: What does that mean?
  41. CT scan
  42. CT scans: Are they safe?
  43. Depression and anxiety: Can I have both?
  44. Depression, anxiety and exercise
  45. Depression: Diagnosis is key
  46. Depression in women: Understanding the gender gap
  47. Depression (major depressive disorder)
  48. Depression: Provide support, encouragement
  49. Depression: Supporting a family member or friend
  50. Diabetes and Alzheimer's
  51. Diagnosing Alzheimer's
  52. Does obstructive sleep apnea increase my risk for Alzheimer's disease?
  53. Alzheimer's elder care
  54. Fish oil and depression
  55. Folic acid supplements: Can they slow cognitive decline?
  56. Ginkgo biloba: Can it prevent memory loss?
  57. Home safety tips for Alzheimer's caregivers
  58. How can I cope with caregiver guilt?
  59. Huperzine A: Can it treat Alzheimer's?
  60. Improve brain health with the MIND diet
  61. Intermittent fasting
  62. Is the definition of Alzheimer's disease changing?
  63. Depression and diet
  64. Lexapro side effects: Is breast tenderness common?
  65. Male depression: Understanding the issues
  66. MAOIs and diet: Is it necessary to restrict tyramine?
  67. Marijuana and depression
  68. Mayo Clinic Minute: 3 tips to reduce your risk of Alzheimer's disease
  69. Mayo Clinic Minute: Alzheimer's disease risk and lifestyle
  70. Mayo Clinic Minute New definition of Alzheimer's changes
  71. Mayo Clinic Minute: Women and Alzheimer's Disease
  72. Mediterranean diet recipes
  73. Memory loss: When to seek help
  74. Mild depression: Are antidepressants effective?
  75. Monoamine oxidase inhibitors (MAOIs)
  76. MRI
  77. Natural remedies for depression: Are they effective?
  78. Nervous breakdown: What does it mean?
  79. New Alzheimers Research
  80. Pain and depression: Is there a link?
  81. Pet therapy
  82. Phantosmia: What causes olfactory hallucinations?
  83. Phosphatidylserine supplements: Can they improve memory?
  84. Positron emission tomography scan
  85. Rapidly progressing Alzheimer's: Something else?
  86. Seeing Inside the Heart with MRI
  87. Selective serotonin reuptake inhibitors (SSRIs)
  88. Serotonin and norepinephrine reuptake inhibitors (SNRIs)
  89. Sharing Alzheimer's diagnosis
  90. Brain anatomy
  91. Sundowning: Late-day confusion
  92. Treatment-resistant depression
  93. Tricyclic antidepressants and tetracyclic antidepressants
  94. Video: Alzheimer's drug shows early promise
  95. MRI
  96. Vitamin B-12 and depression
  97. Vitamin B-12 and Alzheimer's
  98. Vitamin D: Can it prevent Alzheimer's & dementia?