The continuum and progression of Lewy Body Dementia symptoms is difficult to predict, but has some significant consistency that applies to many people and may help with planning. Precipitous drops. Miraculous recoveries. Dizzying variations. I consider it a continuum. And not a linear one. So I never apply stages, phases or expectations. The only one I knew for certain, was the very end. The rest was a wild ride indeed. I defer to the exceptional work of an exceptionally resourceful and committed duo, Sue Lewis and June Christensen, who exhaustively compiled the document based on input from approximately members of an online group called Lewy Body Caring Spouses in In my view, this is the best description of a possible sequence, categorized into five groupings of symptoms, which will always have a great deal of overlap.
This is a subtle, but important difference to me. The following piece is based on the discussions and observations of the LBD caring spouses. It is in no way intended to represent research or science. It is developed as a very broad framework to refer to. The phases have no specific time frame. Due to the fluctuations of the disease, the phases are not linear. Symptoms noted in an early phase may be present for the course of the disease.
These symptoms may increase in frequency or severity over time. Or not. By no means will a person with LBD display all the symptoms listed in any specific phase. Symptoms from later stages can also appear this early on the continuum.
At the end of this phase, cognitive impairment is difficult to deny. By this point, most caregivers are worried that something is seriously wrong and seek medical attention. Caregivers consult with an elder law attorney by this point: at very least have a Power of Attorney and Medical Power of Attorney document on the patient. Protect assets: family, friends, caregivers may be able to take financial advantage of LO. Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.
Correct diagnosis by this point more likely. Caregiver and patient actively grieve. Caregivers may need home health aide assistance to maintain LO in the home. Caregiver needs regular planned respite to maintain their own health. Caregiver health issues often arise and require health care. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety and health risks. The needs of the patient significantly affect personal finances.
