Lewy Body Dementia is considered the second most common type of dementia after Alzheimer’s. It is a complex condition in which protein deposits of a protein called alpha-synuclein, referred to as Lewy Bodies develop in the brain and cause a progressive decline in physical, cognitive, and behavioral functioning. Dementia experts estimate that LBD accounts for 10%- 15% of all dementia cases.
LBD is different from both Alzheimer’s and Parkinson’s but symptoms do overlap in certain areas. Alzheimer’s and Parkinson’s both affect the brain’s ability to store new information in the form of memories – LBD on the other hand targets different cognitive functions like problem-solving and reasoning. Also, while Hallucinations typically occur early in LBD, they usually occur only after about four years from the onset of Alzheimer’s. According to Michael J. Fox Foundation for Parkinson’s Research, there is compelling evidence from recent studies that the alpha-synuclein proteins also play a role in the development of both (rare) familial and (more common) sporadic cases of Parkinson’s disease.
Symptoms of Lewy Body Dementia (LBD) vary and depend on the stage of the disease progression. A simplified framework to understand symptoms is to think of the disease progression in 3 stages – Mild, Moderate, and Severe. The table below details symptoms by stage.
Symptoms of Lewy Body Dementia
In progressive conditions, symptoms typically do NOT occur in chronological order – they usually overlap, and initial or mild symptoms deteriorate over time to become severe. Symptoms also vary by individual and can progress at different rates depending on how early your loved one is diagnosed, the introduction of interventions, the day-to-day approach to care, and the specific type of care that your loved one receives.
The severity of symptoms affects the behavior, memories, and health of your loved ones. At earlier stages and with mild to moderate symptoms, care can be managed with part-time hourly caregivers working with your loved one typically six to twelve hours a day where a combination of lucid phases (where your loved one is amenable to company and daily activities) and non-lucid (where symptoms like memory loss, disorientation, aggression) flare up and both of these interweave daily. As Lewy Body Dementia progresses and the physical toll of adapting to cognitive changes like memory loss, disorientation, and inability to complete simple tasks independently combine with physical challenges due to muscular rigidity and difficulties in walking or eating, these can lead to longer daily times with aggression, agitation, depression or even apathy – that’s why 24/7 live-in care is usually recommended to help manage the moderate to severe stages of Lewy Body Dementia care.
Navigating a diagnosis like Lewy Body Dementia can be challenging for most people. Beyond the diagnosis itself, there is a steep learning curve to understand the complexities of the condition, its symptoms, and how to provide the best type of care for your loved one. Understanding this process as 2 parts – behavioral and physical – is a helpful way to simplify the process and provide meaningful support.
Your loved one is experiencing cognitive, physical, and behavioral changes in themselves. They might forget words while speaking, and find it difficult to walk or eat independently. Challenging physical ailments including severe arthritis, injury, fever, urinary tract infection (UTI), bedsores, or constipation are common and can result in triggering frustration, aggression, and agitation.
The first step is to stay tolerant and patient of harmless behavioral changes that come with the onset of symptoms. It’s essential to understand that the manifestation of symptoms can trigger new behaviors and reactions. Focus on reassuring and distracting your loved one. Use kind and soothing words to comfort and calm them when they feel upset. A gentle, and empathetic attitude will help them feel reassured that you care for them.
Remember, a person with dementia is no longer able to process logic and reason due to changes outside of their control. Focus on keeping them happy by avoiding conflicts and without correcting their memories or what they are saying. If they are not harming themselves or others, allow them to express themselves as they wish. If they do become agitated or concerned, it’s important to validate their feelings and offer comfort, gentle hugs, and engaging activities they can participate in easily.
Creating a safe, calm, and comforting space for your loved ones is very important when providing them with physical support. Due to the physical aspect of the symptoms, it’s necessary to ensure that your loved one’s home is a safe spaces for them. Be sure to remove any cords, rugs, or furniture items that might cause them to fall and hurt themselves. Ensure that the home is well-lit so that your loved ones can clearly see where they are if disoriented or confused. Simplify cupboards, wardrobes, and drawers throughout the house so that it’s easy to find what they are looking for. Adding pictures or signs to cupboards and drawers also helps them find their things with ease.
Decluttering the home is essential for creating a calm and soothing space. Distractions like small pieces of furniture, decorations, and accumulated items of clothing or toiletries create a sense of untidiness which can add to your loved one’s feelings of confusion.
Minimizing objects, noises, and activities in the home can help people with dementia function better, reduce their anxiety, and reduce the tricks their eyes play on them whilst hallucinating.
Non-medical intervention via expert caregivers for people with Lewy Body Dementia is more effective the earlier it is introduced after diagnosis. Studies show that therapy has a tremendous impact on slowing the progression of dementia so it should not be taken lightly and based on something like “my loved one is at a mild stage” – to slow down the progression of LBD takes a lot of knowledge and experience that can be brought to bear to help your loved one’s quality of life stay high for a longer period.
Daily exercise and being outside are helpful. Physical therapy to help reduce the effects of muscle rigidity can make walking or getting out of bed easier and is key in helping your loved one both feel and function better. Specialized interventions like speech therapy can help with swallowing problems while occupational therapy can help improve the function of both motor and cognitive skills. Psychological counseling has also been shown to help reduce the intensity of depression and anxiety that affects those living with dementia.
Having a clear structure and simple routine for the day helps reduce the chances that your loved one will get angry or agitated by their condition. Consistency reduces uncertainty and confusion which is integral to the physical, mental, and emotional well-being of someone living with Lewy Body Dementia.
Managing care for a loved one with dementia is no easy task. There are multiple roles and responsibilities to fulfill, and it is a full-time job. With over 17 years of experience across the Dallas and Fort Worth Metroplex, Care Mountain provides quality, and highly experienced caregivers to help support you and your loved one living with Lewy Body dementia, Alzheimer’s, and Parkinson’s. We have worked with families from Dallas, Preston Hollow, Highland Park, Southlake, Richardson, Plano, McKinney, Frisco, to Arlington – Flexible options for both live-in and hourly in-home care provide specialized and expert care for all stages of a progressive condition. Your carefully matched and personalized caregiver can help with daily tasks and provide your loved one with consistent care and comfort in the familiar surroundings of your loved one’s home while maintaining the physical and behavioral support they need to help their condition. Contact us to help you and your loved one navigate this journey with experience and compassion.