Helping LBD Resident Navigate LTC

Linda H., at her stage of LBD, is thriving in full time nursing home care. Living alone had become frightening for her. Now, she enjoys sitting by the nurse’s station surrounded by her former profession as an RN. She eats well and loves to go to activities. She is described as “easy going” by nurses and residents alike.

Before full-time care, we kept her in her home for 10 years with caregiver assistance. Now that she needs 24-hour care, it has been an eye-opening experience. While only a few of her fellow residents have LBD or Alzheimer’s, many are much older, feeble and suffer from senility. This makes those residents slower, unaware of their surroundings and unable to direct themselves. This is very different resident from one with Lewy Body.

Today’s economic reality is that once a resident is in a full-time care facility, they are completely dependent on an in-house staff or a transient agency staff. Resident’s families believe that a friendly staffer means, their loved ones are regularly getting the hot food menu choice, their “guided eating” lasts for the entire meal, their marked laundry is always returned, they are sought out to attend activities and there are no prescription delivery mistakes. Being in a nursing home with her, 2-3 hours a day, I only wish it were true.

People with LBD have memory issues, but they are often present enough to be social and want to be active. Linda wants to engage in the life around her, and the stimulation prolongs the damaging effects of LBD. We chose this convenient location, so we could be part of her daily routine too. The sad fact is her schedule, often, sidelines Linda for convenience sake, which is counterintuitive to the LBD resident’s needs. As I compare notes with my peers caring for parents with dementia, we are surprised at the slow uptake of appropriate activity levels. Today, nursing home residents are younger and the surge of dementia populations is barreling down on everybody.

The challenge of full-time care has been in educating the staff on supportive care. LBD residents need to be; physically active, engaged with their environment, eat healthy food and as they go through psychological phases, they need empathy so they aren’t afraid. Be aware that placing your LBD into full-time care may be “breaking new ground” for the facility. You, as the experienced caregiver, may need to advocate on the best practices for the best results for both the patient and the facility. Both federal and state regulations require that long term care (LTC) residents are: Treated with consideration, respect and full recognition of his/her dignity and individuality. Not neglected or become a victim of involuntary seclusion. And, be free from chemical restraints. As guardians, our LBD relatives still need our oversight. It is a quality of life issue for everyone.

Karen C

October 19, 2020