Caring for Loved Ones with Dementia: Navigating Challenges

Dr. Marc Rothman, a geriatrician making house calls in New York City, frequently encounters families dealing with dementia. He notes, “Families are often slowly tiptoeing into crisis,” overwhelmed by caregiving responsibilities and the complexities of the healthcare system.

Rothman explains that while caring for a loved one at home can work for years, advanced dementia complicates matters. It can feel like creating a personalized nursing home, which is, as he puts it, “incredibly complicated.” He emphasizes the multidimensional nature of care: managing diet, medications, recreational activities, rehabilitation, appointments—all while caring for oneself.

Specific circumstances can trigger family caregivers to consider relocating their loved one to a nursing home. Rothman points to incontinence as a major factor, along with increased paranoia, aggressive behaviors, and wandering tendencies, where individuals may leave familiar settings only to become disoriented.

Elizabeth Edgerly from the Alzheimer’s Association offers her perspective on wandering, which is sometimes seen as a misnomer. She asserts that there are reasons behind these actions, noting, “At the most basic level, wandering means that someone walks away and has trouble finding their way back.” Yet, for many, it’s not quite that simple.

Edgerly adds, “It may be they want to go home, even though they’re already in their home.” Sometimes, individuals may “leave” to go to jobs they retired from long ago, or even to pick up children who are now adults.

A Terrifying Episode for One Couple

Valerie Staats, caregiver to her wife, Shelley Schultz, knows these challenges all too well. Both have years of experience in healthcare, yet dealing with Schultz’s Alzheimer’s has been daunting. An incident last fall led Staats to reconsider at-home care. After a busy day, she settled Isabelle for a nap, thinking she’d take a quick rest. Hours later, she woke up to find Schultz missing.

Staats recounted, “Now my panic is like, right up there… I go out, looking for her, driving around, couldn’t find her.” As she called the police, fear surged within her. A long search ensued until, finally, they received the news: Shelley had been found just a block away, albeit cold but safe. Edgerly highlights that the chances of a good outcome diminish significantly if a person goes missing for over 24 hours.

Grim Statistics, Expensive Care

Edgerly shares concerning statistics; about 60% of dementia patients will become lost at some point, with nearly half of those missing for more than a day facing serious injury or worse. After the incident, Valerie felt overwhelmed with guilt and increased security measures at home, all while managing her own health issues.

She is now contemplating the transition of moving Shelley to a secure memory care unit, a facility not just designed to keep residents safe but to provide specialized care for dementia patients. Memory care facilities, unlike standard nursing homes, often feature trained staff who focus on the unique needs of those with dementia.

Loren Shook from Silverado Memory Care notes, “We’re complete nerds about improving the quality of life for people with dementia.” He emphasizes that providing a purposeful environment can greatly enhance a resident’s well-being. Activities tailored to interests—like engaging with children—help rekindle lost skills and create a sense of purpose.

However, quality care does come at a cost, with prices ranging from $10,000 a month upwards. Valerie has recently learned from doctors that Shelley is in the severe stage of dementia and feels the time may have come to pursue the memory care unit. They’ve both visited the facility, and Valerie appreciates the friendly and knowledgeable staff, which gives her confidence in their care.

As she prepares for this change, Valerie struggles with what that means for their relationship. “Nighttime is when I sometimes connect with her,” she reflects, missing the prior depth of communication. Yet, even in those quiet moments, when she tucks Shelley in and shares “I love you, goodnight,” it’s a reminder of the bond they still share amidst the challenges.

Valerie hopes that, with this transition, they can still enjoy their time together as a loving couple, not just as caregiver and care recipient.