Help guide loved ones toward care for dementia

You don’t need us to cite studies to convince you that growing old can be frightening and lonely. Losing physical strength, having to search for words and details, and fearing the loss of independence are all bad enough. Add any kind of cognitive impairment such as Alzheimer’s disease or another form of dementia, and you have a recipe for confusion, frustration and isolation, affecting the person losing touch and all those close to him or her.

Unfortunately, most of us aren’t sure how to recognize the signs of cognitive impairment, and we don’t know that help is available, so we just retreat from the changes we see. Steve Kuhner, for example, wondered silently for more than a year what was happening to his wife, Ione, when she began to misplace items at home and work and got lost while driving to a familiar place. Their two grown children also saw their mother’s behavior changing but were fearful of speaking up. Ione Kuhner herself was quietly worried. She was only 55, so dementia was not on the top of anyone’s list. It was her good friend Renee Schaukowitch who took action, leading to a diagnosis, treatments and participation in a clinical trial — along with “Team Kuhner” at September’s San Francisco Walk to End Alzheimer’s.

“I love my friend Ione and will do anything to make this journey easier,” Schaukowitch said.

We’re all going to need a Renee in our lives to help us out of our lonely retreat and toward the care we need. With projections of 13.8 million adults suffering from Alzheimer’s in the U.S. by 2050, we can no longer pretend that this is a problem for individual families to solve. And we can no longer keep this growing problem in the shadows. Dementia affects us all.

Some communities in the U.S. have already stepped up to become “dementia friendly” by creating public meeting places (“Memory Cafes”) and by training police, community workers and even bank tellers to look for signs of cognitive impairment and offer assistance.

San Francisco was the first city in the nation to create a 10-year plan for excellence in dementia care but, absent priority funding, progress is slow. Shouldn’t the city that has always been so forward-thinking, and that has created a model HIV program, also lead the way in mobilizing community awareness and support to address this new challenge?

At CPMC’s Ray Dolby Brain Health Center, we’ve planted a seed with our Friends’ Connection program, which provides education and resources to help those affected maintain strong ties to important friends and family in order to facilitate sharing and combat isolation. Like the center itself, it is informed by our personal experience of being the caregiver for a family member with cognitive impairment.

We know how daunting it is to navigate a fragmented care system. That’s why we developed an innovative partnership with the Alzheimer’s Association and assembled a team to provide services not just for patients, but also for those in the very challenging role of care partners.

Reach out to a friend who might be worrying in silence. Get informed about the ways a diagnosis of cognitive impairment can lead to help and resources. Let’s push forward. It’s urgent.