The Silver Lining of an Early Diagnosis

By Tamekia Reece
Edited by Bernard A. Krooks,

There seems to be a discrepancy among the population: whether they would prefer to know in advance if they have Alzheimer’s, or if they would rather put off getting a diagnosis of Alzheimer’s disease (AD) until the later stages of the disease. They may think, what’s the point in having early notice about something for which there is no cure? Others may fear an early-stage diagnosis means they’ll worry so much about the future that they will no longer be able to enjoy the present. However, as difficult as it is, getting an Alzheimer’s diagnosis sooner rather than later does have some benefits.

Planning for the Future

The biggest advantage of an early diagnosis is that you are able to get your affairs in order and you can participate in the long-term planning of your life. “With a later diagnosis, the AD may have already progressed to the point where you can no longer tell people what you want and what your preferences are,” says Catherine Anne Seal, JD, LL.M, CELA, President of the National Academy of Elder Law Attorneys (NAELA) and senior member of the law firm of Kirtland & Seal, LLC, in Colorado Springs, CO. An earlier diagnosis, on the other hand, allows you to express your wishes and preferences with the people who will be caring for you when you’re no longer capable of making decisions, she says.

An early diagnosis means you get the chance to do the following:

Choose an Agent

Your agent is the person who you would like to manage your legal, financial and personal care decisions if you are unable to do so. An early diagnosis allows you to decide for yourself who that will be rather than having family choose or having the court appoint someone as a guardian or conservator. Instead of picking someone simply because he or she is your older child or sibling, truly consider who you would like to have in charge. “You need to really think about who is trustworthy with finances and who is going to do things the way you want,” Seal says.

Tend to Legal Matters

Once you decide on an agent, you will need to get a durable medical power of attorney so the person is able to make medical decisions for you if you’re unable to and a durable financial or general power of attorney so he or she can handle financial matters for you, Seal says. It’s also a good time to create or update your will. In addition, you may want a living will. “The living will gives doctors guidance about how you wish to be treated in certain medical situations, like if you’re terminal or in a persistent vegetative state,” Seal explains. Some documents can be prepared without an attorney, but if you’re unsure or have particular questions, seek assistance from one who specializes in elder law.

Organize Financial Information

It’s very important for your family to be in the loop about your financial situation. You don’t have to reveal specific figures, but make sure trusted individuals are able to access the information when necessary. Create a list of your important financial details, such as bank accounts, income, savings, pension and 401(k), assets and debts. Have a copy of your tax returns, vehicle titles and property deeds. Make a plan and discuss how your long-term care will be covered. Keep the information in a lockbox or folder and let your agent or a trusted family member know where to find it.

Gather Other Important Documents

In addition to financial records, know where birth certificates, marriage licenses, divorce decrees, driver’s licenses, passports, military records and similar documents are stored. Many families find themselves searching for, or scrambling to replace, important paperwork for a loved one. These items (or copies) should also be kept in your lockbox or folder.

Discuss Health and Care Wishes

One of the biggest struggles for caregivers and families of a person diagnosed with AD is deciding what kind of care the person would choose if able.

Talk to your doctor about what may happen as your dementia progresses. Following that discussion, make some plans and share it with your loved ones. Where would you most like to be cared for? Do you want to stay home and have live-in care? Do you prefer a facility with around-the-clock care? Or would your choice be to go to a senior living center where you can live independently for as long as you can, but still have people there to check on you? Would you like to participate in Alzheimer’s studies? Is there anyone in your family that you’d prefer not be your caregiver? If it’s important to you, it’s worth sharing.

Make Your Final Arrangements

It’s tough to think about one’s own passing but it’s important to make your own final arrangements rather than leaving people to guess at what you would’ve wanted. Do you have any special funeral or burial arrangements that are important to you? Do you want to donate your organs? Would you like to donate your body for research? Do you prefer to be cremated? Talk to your family about your final wishes. In some states, you are permitted to designate in a written document the person who will have the right to control the disposition of your remains. By taking the time to think through these issues and make your choices known in writing, you can help avoid family disputes.

Maximize Your Life

“It’s important to remember a diagnosis of Alzheimer’s does not mean your life is over,” Seal says. Being diagnosed at early-stage allows you to make the most of the time you have before the disease progresses. Maybe you would like to travel or write a book. Or maybe you’ve had a lifelong dream of playing in a rock band. Whatever it is you have always wanted to do, use this as an opportunity to do it—and enjoy it!

Bernard A. Krooks is managing partner of the law firm Littman Krooks LLP (www.littmankrooks.com). A certified elder law attorney, he is a past president of the National Academy of Elder Law Attorneys