What Does Dementia Look Like?

My dad had lots of good days, days filled with laughter and conversations about his favorite memories of my childhood and his, days where he remembered many of the “little things” in my life that made me feel like he wasn’t aging at all.

There were other days, though, when Dad was not as sharp. In fact, there were days when Dad really wasn’t Dad. His behavior verged on combative, his tongue was sharp, and his disposition was bristly at best. On those days, he appeared forgetful, confused and agitated and often repeated himself as though I had not caught his biting comments the previous ten times. I reminded myself that he was aging and dismissed these personality changes as simple signs that he was growing older. After all, I persuaded myself, there was nothing to worry about: he was handling a lot, and these moments were blips in what was otherwise so normal.

But then, during Dad’s routine annual physical, his geriatrician diagnosed him with dementia. I was devastated! Not only did the diagnosis itself scare me, but I also could not understand how I had missed something that should have been so obvious. After all, isn’t dementia obvious?

In reality, the early stages of dementia ARE often difficult to recognize. Like my dad’s experience, the initial signs of memory loss and confusion can often pass quickly, followed by stretches of typical, understandable behavior. One day, your loved one may be calm, affectionate, and engaged—and the next day forgetful, confused and withdrawn. This slow-paced roller coaster ride means that families often struggle as they navigate the unpredictability of their loved one’s behavior without any idea that some form of dementia may be the underlying cause. And no two people present with dementia in exactly the same way with similar symptoms, making it even harder for families to comprehend.

I know it would have helped me to understand more clearly what dementia “looks” like. In hindsight, in addition to difficulties with short-term memory, I now recognize Dad suffered from other symptoms:

• Mood and personality changes
• Forgetting common words when speaking or mixing up words
• Difficulty completing familiar tasks
• Putting items in inappropriate places, such as putting his wallet in the freezer
• Getting lost while walking or driving in a familiar area
• Inability to manage multi-step tasks
• Struggling to pay bills and balance the check book
• Anxious moments or depression-like symptoms

Moreover, I now understand the impact that dementia has not only on memory, emotions and language, but also on executive functioning and decision-making capabilities. I assumed that my dad was able to think through “What if” situations and carry through with plans that had sequential steps. He would often forget where he left the car keys; I assumed he still had the capacity to know when it was time to stop driving. I would ask him to let me know when he was hungry; suddenly he was angry because I had not made him a sandwich.

Yes, it is true, occasional lapses in memory are normal. Many of us have forgotten an appointment or where we put our cellphone. It’s when forgetfulness becomes more persistent and interferes with everyday life that it may signal a problem. At this point, it may be helpful to connect with a doctor. While the fear of the diagnosis may initially feel daunting, it can also pave the way to receiving supportive services for both you and your loved one. 

Organizations like the Alzheimer’s Association and Dementia Society of America are here to help you on this journey, and care coordination programs like Benjamin Rose Institute on Aging’s WeCare…Because You Do can offer you support and guidance as you face challenges and difficult decisions on the road ahead. You may also consider looking into attending a Dementia Friends USA session to learn more about your loved one’s condition and empower yourself to better support them.