1.3 Million Americans with LBD

LBD Managing the diseaseLBD (Lewy Body Dementia) is less well known to professionals and lay people alike even though it is the second (to Alzheimer’s) most common of degenerative dementia. Many people and their family caregivers who are managing this disease live in South Florida – Palm Beach and Broward counties.

As it mimics AD and Parkinson disease, LBD is likely widely under diagnosed. If a person presents with movement problems, PD is suspected and later dementia may occur. Others with a memory disorder may get an Alzheimer’s diagnosis and when other features develop, then “dementia with Lewy Bodies’ is diagnosed. DLB is usually suspected firstly when neuropsychiatric symptoms occur: hallucinations, behavioral problems, sleep problems and difficulty with thinking.

As you can see, treatment is difficult since the diagnosing of LBD is challenging. Me4dications are prescribed to address the different symptoms but as yet, there isn’t a singular LBD medication.

Common symptoms of Lewy Body Dementia are:

~Dementia – cognitive and memory impairment                                                                                                                                                

~Hallucinations – a telltale sign of LBD- seeing or hearing things that aren’t there.                                                                                                                                                                                                        ~Changes in concentration and attention – signs of cognitive decline.                                                                                                                                                                                                                                       ~Movement problems – Rigidity, stiffness, shuffling, slowness and tremors.                                                                                                                                                                                                                            ~Extreme reaction or sensitivity to medications used to treat hallucinations.                                                                                                                                                                                                                         ~REM Sleep Behavior Disorder – when people act out their dreams.

As you can tell, it is a complicated physical and cognitive, psychiatric combination. Much more research is need and education of both doctors and the public. Spouses and family will benefit from Caregiver Support Groups to learn from others and be connected to an educational system addressing the disease you are managing and living with.

As a family member, living with someone having these symptoms yet can be difficult, frightening and exhausting for the spousal caregiver.  Medications can be changing frequently and different aspects of the disease and its progression can be very unsettling. Placement may be considered or hiring of a caregiver into the house. Caring for a loved one with LBD is more than just challenging, and usually cannot be sustained for too long without causing negative health effects on the family caregiver.  In order to have a break from being “on duty” it is recommended to have a family/friend schedule of relieving the husband or wife. If family is unavailable and friends unable to manage, than using a home health aide or certified nurse assistant can work wonders to help carry some of the intense load of caring for someone with Lewy Body Dementia.