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  • Writer's pictureKimberly Massey

Track, Talk, and Tell: The First Three Things to do if a Loved One is Showing Signs of Dementia

When a loved one has begun to be more forgetful, learn how to track the signs of dementia and take those first early steps.

My Family’s Early Journey to Diagnosis

We’ve teased for years that my dad is the poster child for ADHD. Though never formally diagnosed, as more people in our family received their own diagnoses, it became clear that the trait came from his branch of the family tree. Unsurprisingly, his memory loss was hard to recognize at first.

He began to lose things more than normal. Wallet. Keys. Credit Cards. Then he had occasional trouble remembering a common word.

Mom and Dad spoke with his doctors. He had had a small stroke and not long after, open heart surgery to replace a valve. His doctors said not to worry- his forgetfulness was a side effect of being under anesthesia and would wear off in time.

I didn’t begin to worry until my parents went on a trip. After a long day on the road, mom called me. They had gotten lost, and she was exhausted.

My dad has always had a knack for directions. Mom could get turned around somewhere he’s never been, and she could call him. In a few minutes, he would know where she was and how to get her back on the right track.

Person's finger pointing at a roadmap.

After that incident, we began watching him in earnest. His primary doctors continued to tell them not to worry.

As the incidents increased, Mom and Dad sought an answer from our state’s teaching hospital, which has a specialty diagnosing and treating dementia. We were fortunate to learn of his diagnosis early. Despite several doctors assuring us he was fine, with diagnosis in hand, we had more time to manage the changes that come about with dementia.

1) Keep a calendar or log of changes and incidents.

As soon as you suspect a change start taking notes. Pay close attention to the types of changes you’ve noticed. Memory loss related to dementia is more than being forgetful. It includes:

  • A decline in memory- losing things, becoming more forgetful, forgetting things they usually remember.

  • Changes in speech- asking the same question over and over, forgetting common words or the names of common items.

  • Worsening judgement- a change in spending habits, being more easily manipulated.

  • Changes in their abilities- making more mistakes at work, a decline in their skills and hobbies.

  • Changes in personality or mood- some people may develop anxiety or depression. Significant personality changes are also seen in frontotemporal dementia and should be quickly brought to the attention of a knowledgeable doctor.

  • Changes in visual perception- causing more scratches or dents on the car, for example.

Your record of possible signs of dementia may be very helpful to experienced physicians. Your notes may help to determine if the memory loss is related to normal aging, is worsening over time, or is symptomatic of other illnesses.

Our family even learned that medications that are commonly prescribed contribute to memory loss. While there is no cure for dementia, there is always a benefit to extending health and quality of life for everyone.

List of things that can cause memory loss

2) Bring your loved one into the loop.

If you’ve recently noticed changes, mention it to your loved one. You might say, "I' feel as if I've seen some some changes in your memory, and I know how challenging that can be." Or, gently explore a symptom you may have noticed, saying, “I’ve noticed you’ve misplaced your keys a few times. Stress can cause us to be forgetful. Is everything ok?” They may be willing to share changes they have noticed on their own and add insight into the changes.

As you discuss your feelings, reassure your loved one. Let them know you're there to support them and help find answers. Share with them that there are many things that can mimic memory loss and that many

When diagnosis is made later into the disease process, it becomes harder to manage their care. Though their insight may worsen over time, if caught early, they can contribute to planning their care and maintaining a good quality of life.

3) Do your homework and prepare to become an advocate.

Learn about dementia and other health concerns that often accompany aging. Surprisingly, many family physicians and internists are unfamiliar with the nuances of cognitive impairment. In my experience, many physicians are reluctant to diagnose dementia. Some may feel that a diagnosis isn’t important since there is no cure. Some worry that the stigma of dementia is more harmful than delaying diagnosis or treatment.

If your loved one continues to experience changes in their cognitive abilities, you will need to support them and advocate for high quality care.

I understand that relationships with loved ones are complicated. You may be hesitant to bring up changes. You may not want to “rock the boat.” Or your loved may deny changes or refuse to see a doctor.

One of my philosophies in life is “You can only do what you can do. But, always do what you CAN do.” If you suspect a loved one is experiencing memory loss or cognitive decline, there may be areas where your hands are tied. But there are things you can do that may make a significant difference in the future.

Please, share your diagnostic experience in the comments. Sign up for the Tenacious Hearts newsletter for insights into dementia and tips for maintaining the best quality of life possible.

From my tenacious heart to yours,

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About Me

Caregivers, Dementia, Starfish and the Ocean

Hello! The Tenacious Heart Project is where I share with you my strong belief that we can do better for caregivers and people with dementia.  

It may be overly optimistic thinking that we can improve something as big and important and caregiver support and dementia.  I do understand that.  But in my nearly 30 years in the nonprofit sector, I have seen lives change.  I know it happens on the individual level and I know it can be done on a societal level.

I have my strengths and weaknesses.  One thing I am good at is solving problems.  I like thinking about solutions and how to put those solutions in place.  As noted already, sometimes I never give up.  That stubbornness has benefited my family and I a lot.  When my daughter needed a health advocate, we looked for solutions.  It took five years to find the right specialist, but since we did 18 months ago, her quality of life is exponentially better.   

The more my dad and family are affected by dementia, the more I am compelled to improve options for caregivers and the people they support.  The Tenacious Heart Project is just one small way I hope to help.  I feel like we are all the starfish on the beach.  One day, thousands of starfish washed up on a beach.  Taking a walk, a gentleman saw a young girl carefully picking up a starfish and returning it to the ocean.  He asked her, why are you wasting your time? You'll never help get all the starfish back into the oven.  To which she promptly replied "maybe not, but I helped that one." And she moved on, putting each starfish she encountered back into the ocean. 

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