Alzheimer’s disease is a commonly heard but rarely understood form of memory loss that usually becomes more prominent with age. Most people diagnosed with Alzheimer’s are in the age band of greater than 65, but neither is Alzheimer’s a normal part of aging nor is it typically tied to old age. While for most of us, our brain changes with age- leading to loss of abilities like remembering and decision making; the Alzheimer’s brain degenerates to a much greater extent- and in a specific pattern. More precisely, it starts developing protein structures on the insides or in between spaces in the brain’s nerve cells- thwarting communication and normal functioning of these cells. The changes typically begin in areas of the brain related to learning and remembering- so the first among Alzheimer’s early symptoms is the inability to recollect recently learnt information. With time, the structures become more intrusive, spreading to other parts and impacting other abilities like the ability to converse, communicate, carry out daily tasks and so on- making the patient highly vulnerable to personality changes and greatly dependent on a support system. Why some people might be at a greater risk of developing this disease remains unknown though genes have long been thought to play a role.
What is early onset Alzheimer’s disease?
When Alzheimer’s sets in under the age of 65, it is known as early onset Alzheimer’s disease or young onset Alzheimer’s disease. The early onset Alzheimer’s age is hard to define with the typical starting age being between 40 and 5o, but it is not unheard of for people to get it as early as their 30’s. The victim may suddenly find that he’s losing track of things- people, events and dates, forgetting his familiar way back home from office, misplacing things all too often, or forgetting familiar recipes in the kitchen. Coping with these changes can be highly taxing- because you’re probably at a stage of life where you need to be in full control- of yourself, your job, your children and family responsibilities.
Living with early onset Alzheimer’s Disease
Be positive about your role as a parent
It is natural to feel at a loss when you have a family to rise and children to take care of. But grieving about changes in your parental role or what part you might be able to play in your children’s later life-developments- marriage, settlement etc. is only part of the story. The best way to remain strong for your children is to take good care of your physical and emotional needs. Also discuss with your partner as to how much information about your diagnosis you can reveal to your child and when is the best time to do this- only you and your spouse will know how much revelation your child can handle.
Deal with the stigma nonchalantly
You’ll be surrounded by myths, overreactions, dismissals and denials. Deal with them nonchalantly- they are the most unimportant part of your attempt at giving your life post-diagnosis the quality it deserves. Fight stigma with sensible indifference.
Sort out important matters with your lawyer in advance
As young onset Alzheimer’s progresses, you will likely lose certain abilities like taking right judgments related to money and property matters. You need someone trustworthy to take care of them on your behalf. Make arrangements with your lawyer in advance- for instance giving someone the power of attorney for making decisions you may not be able to make.
Plan your future health costs
Anticipate your future health needs- talk to close family about the need of safety equipment at home or professional caregivers in future. You’ve probably been planning all this while for your child’s education or wedding- create a bracket for your own needs too.
Plan your support system
A lot of people will be on it- close family, trusted relatives, neighbors, friends and health professionals. Plan out in advance.
Check your eligibility for Social Security Disability
The Social Security Administration lists early onset Alzheimer’s under Compassionate Allowance Initiative, giving those with the condition speedy access to Social Security Disability Insurance and Supplemental Security Income.
Face tough questions like loss of income in future
Don’t evade questions like how long will you be able to work? If you’re the primary earning member- think of what will happen when you may no longer be in a state to work. Will your partner have to quit work to provide care- what is the best way to financially reassess your situation?
Consider employee benefits options
If you’ve had an early onset Alzheimer’s diagnosis while you’re still working, then consider probable ways of getting employee benefits like disability insurance, paid sick leave or other short term disability benefits, benefits under the Federal Family and Leave Medical Act and COBRA.
Explore Health insurance options
If you were diagnosed after you left your job, update yourself on other financial aid options like Medicare (a federal health insurance program for people above 65 receiving Social security retirement benefits that also extends to individuals younger than 65 who’ve been receiving Social Security disability benefits for at least 24 months.