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August 1, 2020

The Reasons for and Risks of Dementia Diagnosis Delay

by Alzheimer’s Project Board Member, Philip Nowicki

As we age, we can certainly experience “senior” moments.  We may have difficulty remembering names, details of a movie recently watched, or where we misplaced an item.  Maybe we forgot what we had for lunch, where we parked, or why we walked into a room.  These behaviors are usually signs of normal aging.

On the other hand, one might start repeating the same question. Perhaps, familiar tasks are difficult to complete or familiar surroundings become unknown.  One may be unable to follow a story plot or show confusion with time or place. There may be a noticeable decline in one’s judgment or hygiene.  These memory and behavioral changes might evidence abnormal cognitive decline.

You or your loved one may wonder if this is the beginning of Alzheimer’s disease or a related dementia (ADRD). Since early dementia symptoms appear gradually and sporadically, it might be easier to believe that everything is okay. Ultimately, time will answer that question. Unfortunately, there is not just one, but many reasons for dementia diagnosis delay.

Potential Causes of Diagnosis Delay

According to a 2014 survey from the Florida Department of Elder Affairs, more than three-fourths of care recipients did not receive an ADRD diagnosis until at least one year after their symptoms began.  For over a third, it was more than three years.  Nearly half waited because they thought the symptoms were part of normal aging.  For others, the barriers to an early dementia diagnosis were the caregiver or care recipient not wanting to know or thinking anything could be done.  

Some employed caregivers or care recipients may have a diagnosis delay because they fear having to tell their boss.  Others may not be aware of local support services or who offers them. Some may fear the cost of those services.  For others, it could be an internal family dispute over what to do. 

The Importance of a Timely Diagnosis

So, what is the downside to not getting a diagnosis until the symptoms are more frequent and pronounced?   First and foremost, a diagnosis of one’s condition could rule out dementia.  One’s memory or behavioral changes could be due to a new medication being taken. It could also be an underactive thyroid, a Vitamin B-12 deficiency, a mini-stroke, depression, or some other medical condition.  Most treatments and therapies can address these conditions and the associated symptoms.     

The flip side is that an early diagnosis may eliminate these other conditions. The most likely conclusion is ADRD or cognitive impairment that will progress to ADRD.  Receiving the initial news of a dementia diagnosis of a loved one can be a heart-wrenching, devastating experience.  However, avoiding it can pose several risks for persons with dementia and their family members.   

Delaying Diagnosis is Playing with Fire…Literally!

In the beginning, everything may seem manageable.  However, as the disease progresses, that will dramatically change.   Unsupervised persons with dementia may forget to pay their rent, mortgage, insurance, utility, or credit card bills.  They are susceptible to fraud and financial exploitation.  They could wander away from home and get lost.  If they drive, they could cause an accident or aimlessly travel to an unknown destination.  They could forget to take important medications.  It’s possible they could leave the sink running and flood the house.  They could also leave the stove on and cause a fire. As a caregiver, you can’t be prepared for every possibility or know exactly what to expect.

Beware of the Risk of Delay

For the caregiver and family, the denial of dementia or delay of its diagnosis could have several consequences.  Failure to initially seek out legal and financial advice could be highly detrimental. Without this guidance, the costs and stress of care over the duration of the disease could increase substantially.

Once a loved one becomes incompetent, his or her Will cannot be changed.  If there is no Durable Power of Attorney to act on other matters, the caregiver will need to go to court to be appointed as a Legal Guardian.  It is a costly, time-consuming process and is subject to many cumbersome requirements. 

Likewise, if the caregiver or family does not plan ahead, qualifying care-related tax deductions might be ignored.  Other eligible financial benefits (e.g., VA, Medicaid, Medicare) may be overlooked.  Free support services like respite care, counseling, support groups, and training may be missed.   Opportunities to timely obtain competent and qualified in-house help, could be lost. In the event of an emergency (such as the caregiver being hospitalized suddenly), it’s critical to have care you can count on.

Act Fast & Ask for Help

Ignoring symptoms, delaying diagnosis, and not seeking help while in the early stages of the disease will greatly complicate matters. It will add to the stress of caring for your loved one over the long-run. If your loved one is showing signs of memory loss or cognitive decline, don’t wait!  In the Big Bend area, you can have a diagnostic evaluation done at the Tallahassee Memorial Healthcare Memory Disorder Clinic. Taking a proactive approach is much better than a reactive one!

If you receive a diagnosis of ADRD, you are not alone! Our mission here at the Alzheimer’s Project is to support families throughout their entire journey. Visit “Services” to learn more about how we help caregivers.

You can read more on this topic by Philip Nowicki on page 16 of the Capital Medical Society’s August Cap Scan newsletter. Dive deeper to learn the reasons for and risks of dementia diagnosis delay as it pertains to health care providers and their patients.

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