Understanding Lewy Body Dementia Stages

If a friend or family member has been diagnosed with Lewy body dementia (LBD), the news can be devastating. While it can be difficult to come to terms with this diagnosis at first, knowing what to expect during the earlier and later Lewy body dementia stages can help you support your loved one better. This blog post will delve into the specifics of the various LBD stages, from the initial signs to more advanced symptoms, so you can gain a better understanding and take steps to manage the condition.

What is Lewy Body Dementia?

LBD comes into two forms: dementia with Lewy body disease and Parkinson’s disease with dementia. Research into what causes LBD is still being done, but scientists know that certain protein clusters called Lewy bodies develop in the brain and cause damage to nerve cells. Multiple parts of the brain are affected by Lewy bodies, including the brain stem, hippocampus, and cerebral cortex.

The earliest the disease typically begins is in a person’s 50s, but symptoms can start as late as a person’s mid-80s. As the disease progresses, people have difficulty understanding what is going on around them. They often forget key information about themselves, their family, and their location. People with LBD also experience hallucinations and delusions. They may see people or animals that don’t exist and have conversations with them. A person’s personality can dramatically change, too. In the later stages, people begin to lose the ability to eat and speak. People with LBD will need 24-hour care in the final stages of the disease. The type of treatment for the condition depends on which stage the person is in. Below, we discuss the specific stages of LBD.

7 Stages of Lewy Body Dementia

Understanding the different stages of Lewy body dementia can be challenging and emotional. As this disease progresses, it is important to understand how one’s symptoms will change over time, as well as what interventions and treatments may be helpful in managing them.

Dementia can’t typically be diagnosed in your loved one until Stage 4, yet you can educate yourself as much as possible about what to expect, no matter what stage the person is in. Unfortunately, once someone is diagnosed with LBD, people live for an average of only five to seven years. Some people pass away sooner while others may not pass away until up to 20 years after a diagnosis. It may be helpful to seek counseling to ensure you get appropriate support as you support your loved one throughout the LBD stages.

Stage 1: No noticeable symptoms

The first stage of dementia, paradoxically, is that there are no symptoms at all. You won’t notice any issues in your friend or family member, and they won’t have memory issues at all. While there’s no way to completely prevent developing dementia, studies have shown that staying mentally active can reduce your risk. Reading, writing, doing crafts, and playing instruments are just some examples of things you can do.

Stage 2: Very subtle changes

If someone is in Stage 2 of dementia, you’ll begin to notice that they forget certain words every now and then but can still communicate basically as normal. Many older people have a very mild form of forgetfulness, however, so it can be very difficult to differentiate between typical aging symptoms and LBD.

Stage 3: Mild cognitive decline

When a person reaches Stage 3 in their LBD or other type of dementia, their forgetfulness will be slightly worse than normal. They may have trouble focusing and have a harder time remembering to take their medications.

Stage 4: Moderate dementia

Doctors are more likely to make a diagnosis in Stage 4 of dementia. At this point, a person will still remember their past but may have trouble recalling recent events. Simple tasks like doing laundry may begin to get difficult, and the senior will likely need extra support at this time.

Stage 5: Moderately severe cognitive decline

Stage 5 dementia marks an increase in cognitive decline. At this point, your loved one may ask a question again and again, forgetting they’ve already asked it. They might also begin to experience bowel or bladder incontinence and require assistance with using the bathroom. People experiencing Stage 5 dementia may not understand where they are or the time of year.

Stage 6: Severe cognitive decline

Once a person has reached Stage 6 of the disease, they may be unable to speak anymore. They may get lost and have a difficult time eating. Their personality may also change as well as their sleep patterns. People with dementia often sleep during the day and have trouble falling asleep at night.

Stage 7: Very severe dementia

In the final stages of dementia, people are often unable to swallow and can’t sit or walk without help. They also experience complete incontinence and often don’t recognize even their closest family members.

Navigating the Late Stages of Lewy Body Dementia

From mild cognitive impairment to severe dementia, LBD can impact a person’s life in profound ways. It is important for caregivers and loved ones to understand the final stages of the disease. Knowing what to expect can help them prepare themselves for the end stages.

In the final stages of LBD, friends and family can offer several types of support. Monetary support can help cover costs for round-the-clock care and assistive devices. Other forms of support include helping the person eat, bathe, and keep their living area clean.

When someone with LBD has hallucinations or delusions, you can try to comfort them instead of trying to convince them of reality. If the person is able to still speak, listening to what they’re saying can help comfort them. Sometimes, playing their favorite songs can provide solace. So can giving them the opportunity to perform tasks like folding towels or playing low-impact games like balloon volleyball, if they’re physically able.

Conclusion

If your loved one has been diagnosed with Lewy body dementia, take some time to process the diagnosis. Work with the individual so that you can both be as informed as possible about what to expect in the later stages of LBD. Joining a caregiver support group and seeking counseling may help you come to terms with your family member’s diagnosis.

Sources:

1. “What Are the 7 Stages of Dementia?”, Lewy Body Dementia Resource Center, https://lewybodyresourcecenter.org/what-are-the-7-stages-of-dementia/
2. “Lewy Body Dementias,” University of California San Francisco, https://memory.ucsf.edu/dementia/parkinsons/lewy-body-dementias
3. “Lewy Body Dementia FAQs,” Rush Hospital, https://www.rush.edu/services/lewy-body-dementia-care/lewy-body-dementia-faqs
4. “Dementia: 7 Stages,” Compassion & Choices, https://www.compassionandchoices.org/resource/dementia-7-stages
5. “How to Reduce Your Risk of Alzheimer’s and Other Dementias,” Alzheimer’s Society, https://www.alzheimers.org.uk/about-dementia/risk-factors-and-prevention/how-reduce-your-risk-alzheimers-and-other-dementias