Learning that you have younger-onset dementia (YOD) or Alzheimer’s disease before age 65 can be an unexpected blow to your independence, active family life, career, and finances. Even though your declining abilities will alter those issues, you still can enjoy a productive and meaningful life.
Every patient and family’s experiences are unique. But understanding your condition’s special challenges may help ease everyone’s fears and anxieties about your future. You just need to revise your current and upcoming plans to handle life changes earlier than you anticipated. The Alzheimer’s Association and other experts describe what to expect and how to cope with common concerns.
Dementia Problems Begin in Adolescence
Historically, research associates younger-onset dementia with genetic mutations. Now, scientists have found additional contributing causes. A long-term study of 488,484 men averaging 18 years old identified nine risk factors that led to most YOD cases. They included an alcohol intoxication history, previous strokes, familial depression, fathers who suffered from dementia, low cognitive function, high blood pressure, antipsychotic use, other drug intoxication, and short height.
During follow-ups at a median of 37 years, 487 subjects had received YOD diagnoses at an average age of 54. The researchers traced most of the risk factors back to adolescence. Having two of them gave men 20 times greater odds of developing YOD.
Because some of the study’s risk factors are controllable, health care consultant Anthony Cirillo advises taking good care of yourself from adolescence (see video below). The sooner you manage your physical, emotional, and financial needs well, the better you’ll age. Exelon (Rivastigmine) prevents your brain’s acetylcholine from decreasing gradually to reduce dementia symptoms including memory problems.
Premature Alzheimer’s Diagnosis May Be Tricky
Early-onset Alzheimer’s disease tends to be the most prevalent sporadic disease form that doesn’t involve genetics. But getting that diagnosis may be difficult. Due to your young age and/or medical history, your doctor may rule out or overlook Alzheimer’s disease. If he misdiagnoses your symptoms as stress, depression, or menopause, he could prescribe the wrong treatment. Aricept (Donepezil) may enhance your memory, thinking, reasoning, awareness, and functional abilities.
Adapting to Your Changing Parenting Role
If you’re still raising dependent children, accepting changing family dynamics can be upsetting. Grieving anticipated adjustments is normal. So is wondering what role you’ll play in your kids’ milestone events as they grow older while your disease progresses. Being strong for them can be tough while coping with unexpected feelings.
To help your children get by with modified parental supervision, you need to take care of your personal emotional and physical needs first. Control stress, make your home safe, and continue your regular routine and physical activities whenever possible. Discussing your disease with your kids might be hard. In your efforts to protect them, you may delay or avoid sharing your disturbing news. With your partner, decide what details your children can understand and the amount of bad news they can handle.
Managing Career, Financial, and Legal Matters
You might not be ready to retire early, but dementia or Alzheimer’s disease will make working too hard at some point. Symptoms including difficulties remembering appointments, concentrating, making decisions, mastering new skills, and multitasking will lower your job performance eventually. Consider how your disease will affect your career and finances, especially if your job is your family’s primary income source. Then discuss these concerns with your family:
How long can you continue working?
Could your employer adjust your duties?
Do you need an easier job?
Is your family’s health insurance through your employer?
Will your partner need to quit working to care for you?
Can you afford to live on a declining or absent income?
What will your future care cost?
Even in early-stage illness, you may not realize when your symptoms are compromising your work. So you might not have capability to decide the right time to quit. Get opinions from family, friends, health care professionals, or even trusted clients. Retiring discussions and decisions can be emotional, especially if your occupation defines your personality and social value. Being unable to work at a young age can be devastating. Seek emotional support and reassurance that loved ones accept you for who you are ― not just what you can do.
Educate yourself to maximize your employer’s benefits before leaving your job. Know company policies regarding sick leave, short- and/or long-term disability insurance, unpaid leave through the Family and Medical Leave Act, retirement benefits, health insurance, and/or COBRA health care coverage. You might be eligible to receive expedited Social Security Disability Insurance and/or Supplemental Security Income under the Social Security Administration’s Compassionate Allowance Initiative. Other insurance options include Medicare and Medicaid. Affordable Care Act coverage for pre-existing conditions with possible premium subsidies is available through the Health Insurance Marketplace.
Before your diagnosis, saving for your children’s college educations, retirement, and/or paying down your mortgage may have been priorities. So revising your budgetary goals, expensive habits, and legal preparations is crucial during your disease’s early stage. Relatives, a financial advisor, and/or attorney can help structure plans so your family can make decisions on your behalf when necessary.