inside look

When You Suspect Something’s Wrong: What You Should Do Before Getting a Diagnosis

One day you notice something’s not quite right. Previously, you may have thought, “Oh well, he is just becoming absent-minded or going through a temporary phase. As a person grows older, that is to be expected.” Yet, now the scene has begun to change in a disturbing way. Perhaps there have been frequent memory lapses, signs of disorganization and disorientation, a decline in self-confidence, or you have noticed increased moodiness with episodes of high anxiety. You don’t want to jump to conclusions, but you know that things seem to be getting worse, not better. You try not to panic, yet suddenly you realize that you must get some serious help. Where do you start?

First of all, you need to stop, breathe, and collect your thoughts. As Maria Shriver told the Huffington Post she felt when her father was diagnosed in 2003, you may feel confused, powerless, and alone.

Once you have dealt with the initial shock that most of us experience when dealing with life-impacting health issues, it is important to map out a step-by-step strategy. Finding out what is causing the problem and determining how best to ensure proper treatment, communicating with friends and other family members, and setting up appropriate financial, legal, and caretaking arrangements. 

Before you seek any kind of medical diagnosis or treatment (especially when dementia and Alzheimer’s disease are possibilities), I want to emphasize, once again, that you should first take immediate steps to prevent perhaps irreversible financial problems.

These steps are as follows:

  1. Establish and/or update all legal documents and financial instruments, including trusts, wills, powers of attorney, guardianship assignment as well as ownership of securities, real property, and bank accounts;

  2. Investigate health insurance coverage and Medicare, Medicaid, VA benefits or other entitlements, long-term health insurance policies, and Social Security and/or private disability eligibility.

  3. Address healthcare treatment preferences, health proxies, and end-of-life directives.

  4. Research private and/or government-subsidized (including military for veterans) options for in-home, out-patient, and institutional care.

  5. Resolve any other financial arrangements that might impact the eligibility of your loved one to qualify for medical and long-term-care benefits such as Medicare and/or Medicaid.

In the best of all possible worlds, these issues will have been discussed and planned for long before the onset of any symptoms of cognitive impairment. If you find that these issues have not yet been addressed, please refer to other sections in this book, which describe important legal and financial options that are available to families, guardians, and caregivers of people with Alzheimer’s and other dementias.

As you will see, the implications of a medical diagnosis are profound, because once the presence of any cognitive impairment—however mild—is confirmed, the legality of any changes to preexisting documents can be challenged. If you are—or think you may become—involved in a fiduciary capacity, do not hesitate to consult an attorney and/or financial advisor with expertise in the field of elder law before proceeding further with medical issues related to a possible diagnosis of dementia, including Alzheimer’s disease.

Of course, it is vitally important to get a medical assessment, as soon as possible, so that further deterioration can be addressed and perhaps delayed, if not prevented.