Alzheimer’s disease is not limited to the elderly. Although rare, some individuals are diagnosed with younger-onset Alzheimer’s disease in early adulthood—some as early as their twenties and thirties. Quarter-lifers who are diagnosed with Alzheimer’s struggle with unique challenges. While coping with the symptoms of Alzheimer’s, they are also transitioning to adulthood, launching their careers, getting married, and having children. It is possible for quarter-lifers, particularly quarter-life couples, to enjoy life and manage this disease. For these reasons, it is particularly critical for Quarter-life couples to prepare for the changes associated with early-onset Alzheimer’s disease by communicating about important, and sometimes difficult, topics.
8 Important Topics to Discuss:
1. Adjusting to the Diagnosis
What is your understanding of Alzheimer’s disease? Where can you get information you need? How do you each feel about your diagnosis? What are your hopes, concerns, fears, and expectations about this diagnosis?
2. Medical Care
Do you like and trust your medical providers? Most likely, your neurologist and primary care doctor will be the physicians managing this disease. What will your medical care look like over time? What medications will be prescribed and what tests will be run? Do you want to consider genetic testing for you and your children?
3. Psychological Support
Where can you get the emotional support you need? There is a range of support services for Alzheimer’s disease: support groups for patients and caregivers, seminars, conferences, professional counseling, and online forums. The Alzheimer’s Association and the Alzheimer’s Foundation of America are good resources.
4. Social Support
Which family members and friends would you like to inform about the diagnosis of Alzheimer’s? How would you like to talk to your children about this diagnosis? Whom can you depend on for support over the course of the disease? Who will serve as the primary caregiver for the person with Alzheimer’s?
5. Career
How will your diagnosis affect your ability to work? How will this diagnosis affect your spouse’s ability to work, if there are significant caregiving responsibilities?
6. Finances
How will this diagnosis change your family’s financial situation? Be sure to research benefits and disability insurance that may be available to you and your partner. Look into Medicare benefits and retirement benefits, as well.
7. Healthcare Planning
What legal paperwork should be completed to plan for your healthcare in the future? Consider meeting with an attorney to create a Last Will and Testament, Power of Attorney, Healthcare Proxy, and Living Will.
8. Finding Joy
Most importantly, talk about what brings you joy and how you can maximize experiences that are fulfilling for you and your family. Be patient with yourself as you adjust to this diagnosis. Are there certain experiences you’d like to share and/or important conversations you’d like to have with loved ones before the disease progresses? How can you plan for these things? How can you make the most of your life while also attending to this disease?
Resources:
https://www.alz.org/help-support/i-have-alz/younger-onset
Alzheimer’s Foundation of America: alzfdn.org
Alzheimer’s Association: alz.org
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