Written by: Preeti Prangya Panda
Published on July 21, 2025
Introduction
Lewy Body Dementia (LBD) is considered to be the second common neurodegenerative disorder after Alzheimer’s disease. It mostly remains underdiagnosed, as many cases are only identified at autopsy.
Of all dementia cases, LBD accounts for 4–8%, according to clinical research-based studies. Therefore, correct diagnosis is vital since some of the common interventions used to treat other forms of dementia may worsen the situation with LBD.1
Multiple factors, such as age, genetics, and family history, influence the onset of dementia. However, it is important to know disease progression to manage the patients effectively. To simplify this caregiving urgency, a scale called the Global Deterioration Scale (GDS) was developed by U.S. geriatric psychiatrist Barry Reisberg. This scale was initially used for studying the stages in Alzheimer’s disease. This includes a 7-point scale to identify the early to most severe conditions for dementia.2
In this article, we’ll discuss these seven stages in detail.
What is Lewy Body Dementia?
Before diving into the 7 stages of Lewy body dementia, let’s first understand what are the causes of this disease. Dementia caused by lumpy deposits made of proteins like alpha-synuclein and ubiquitin is called Lewy body dementia.3
The Lewy body deposition prevents normal cells from functioning properly, leading to damage in cognitive functions such as memory, balance, and visual perception. The symptoms may worsen with each stage of the GDS level. Therefore, to better understand how the disease progresses, we can divide its severity into three levels.4
- Early stage dementia (Stage 1, 2, 3)
- Middle stage dementia (Stage 4, 5)
- Last stage dementia (Stage 6, 7)
Stages of Lewy body dementia?
As dementia progresses, symptoms change, with apathy (a loss of enthusiasm) being the most common at all stages.5
Weight loss, seizures, skin infections, difficulty swallowing, increased sleep, groaning, moaning, or grunting, and loss of bladder or bowel control are all indicators of severe dementia, says Dr. Bharath Kumar Surisetti, Consultant Neuro Physician, Yashoda Hospitals, Hyderabad.
Dr. Surisetti emphasizes, “The most ignored early warning sign of LBD is REM Sleep Behaviour Disorder, in which people, years before cognitive deterioration, act out their dreams, often violently. Visual hallucinations, slight mobility impairment, and cognitive fluctuations are additional subtle early signs.”
The seven stages of LBD are:
- Stage 1: no cognitive impairment
- Stage 2: Very mild cognitive decline
- Stage 3: mild cognitive decline
- Stage 4: moderate cognitive decline
- Stage 5: moderately severe cognitive decline
- Stage 6: severe cognitive decline
- Stage 7: very severe cognitive decline
Stage 1: No Cognitive Decline
Symptoms: No visible symptoms. Fully independent with normal memory and thinking. The people work normally without any help. Researchers study this stage by examining past cases.
Impact on life: No impact
A CT scan shows some changes in the brain pattern that can be a sign of future dementia. Although CT scan can detect about 1.9% to 10.4% of cognitive decline cases, it is an important imaging test in identifying treatable conditions like brain tumors or subdural hematomas, making them essential during the initial evaluation of dementia.6
Stage 2: Very Mild Cognitive Decline
Symptoms: The signs and symptoms of this stage are the same as normal aging, such as:
- Mild forgetfulness, such as forgetting what happened just a week ago.
- Misplacing items, such as asking questions like – Where have I kept my files, books, or key? Etc.
- Difficulty in recalling friend and family names.
As the symptoms are similar to the aging process, it is also called age-associated memory impairment. In LBD, early deficits involve attention and executive function rather than memory.3
Impact: No impact
Stage 3: Mild Cognitive Decline
Symptoms: Signs include occasional memory problems like:
- Problem in remembering recent events, such as a function that was celebrated just 2 days before.
- Trouble concentrating on complex tasks like working with a cheque book.
- Difficulties in finding the right words while talking. For example, getting confused about speaking the next word.
- Verbal repetition, like speaking the same scenario repeatedly
- Difficulty in doing attention-specific jobs like driving.
- Complexity with perceiving visual information correctly, difficulty with spatial orientation, or reading objects because of light, shadows, or the angle of view.7
Impact: At this point, it begins to affect daily activities in some areas. As a result, the person needs help to remember important tasks and meetings. Consequently, people in this stage may make mistakes, making their work harder. Family members may notice the cognitive changes.7 However, the individual remains independent in basic activities, and can do his work alone.
Stage 4: Moderate Cognitive Decline
Symptoms: First diagnosis of dementia occurs in this stage.
- Memory loss, such as forgetting addresses or mobile numbers.
- The thinking process gets slower, and the person struggles with doing day-to-day tasks.
- Visual hallucination and delusions. For example, the person may see clear, detailed images like people, animals, or objects that aren’t there.
- Sleep disturbances.
- Fluctuations in cognitive (thinking) behavior leading to confusion.
Impact: The person needs help with daily living, such as managing finances, medications, driving, or shopping. They may require supervision to ensure safety. For instance, a person needs assistance for not wandering away or using the stove unsafely. Family members often notice the decline in multiple areas like physical activities, cognitive functions, and memory.
Stage 5: Moderate to Severe Cognitive Decline
Symptoms: Worsening symptoms are observed like:
- Memory loss, such as forgetting conversations.
- Disorientation, like losing track of location and date.
- Hallucinations and delusions are frequent.
- Sleep disturbances increase.
- Motor problems are seen as becoming unsteady or falling.
- Has trouble speaking or following multi-step commands.
Impact: At this stage, daily life requires proper assistance and supervised care. As a result, people usually need help with basic tasks like dressing, bathing, and feeding themselves. Furthermore, they often cannot live alone safely.
At this stage, the symptoms overlap with Alzheimer’s, but 80% of the people face complex hallucinations, which is unique to LBD.8
Stage 6: Severe Cognitive Decline
Symptoms: This stage is the onset of severe dementia.
- Thinking and memory retention become excessively reduced.
- Individuals fail to recognize their family members.
- Difficulty in performing tasks mentally.
- Hallucinations and delusions are frequent.
- Sleep and wake cycles are disrupted
- Loss of bladder or bowel control.
- Difficulty in swallowing
Impact: At this stage, total assistance is required both mentally and physically. The person needs help with all aspects of daily living, such as eating, dressing, and going to the washroom. Consequently, they are bedridden, and supervision becomes constant. Moreover, movement is significantly reduced. Extreme confusion and aggression can arise due to frustration or discomfort. Additionally, swallowing problems may lead to weight loss or even pneumonia, which is a common cause of death.9
Stage 7: Very Severe Cognitive Decline
Symptoms: This is the end-stage of dementia in which patients do not respond to any treatments.
- Complete bedridden and dependent.
- Almost no cognitive ability, like the patient can’t speak properly, sit up, smile, or walk.
- Awareness is completely lost.
- Reflexes remain, but action to the reflexes is absent. For example, one may get hurt if he/she touch a hot bowl; however, there will be no response to it.
- There may be intermittent groans or moans.
- Autonomic functions, such as breathing, can be difficult in this stage.
Impact: Full-time care is needed. The person needs total assistance with all bodily functions, such as they cannot feed, dress, or toilet themselves at all. Tube feeding or special eating assistance may be required if swallowing is difficult. The person’s personality is essentially lost, affecting their response.
There may be primitive reflexes (automatic and involuntary movements like an infant who closes their hand when we place our finger) and severe muscle rigidity. The meta-analysis of 29 studies found that individuals with dementia are 13.94 to 16.38 times more likely to exhibit these reflexes, highlighting their importance in dementia diagnosis.10
Support and Caregiving
Dr. Surisetti explains that, “Providing care to a loved one with LBD is often a complex and emotionally demanding experience for a caregiver. Caregiving strategies for people with Lewy Body Dementia (LBD) vary across stages. In the early stage, caregivers should promote independence, establish consistent routines, encourage light physical activity, and ensure a safe home environment.
As the condition progresses to the moderate stage, more hands-on support becomes necessary. This includes helping with daily tasks, simplifying communication using clear language and yes-or-no questions, and managing mood or behavioral changes with patience and reassurance. In the advanced stage, patients with LBD often require 24/7 care.
Caregivers should assist with all aspects of personal care, mobility, and hygiene, while also focusing on maintaining comfort, dignity, and emotional well-being through meaningful engagement and a supportive presence.”
Conclusion
Lewy body dementia is the most misunderstood disorder due to its overlapping features with other neurodegenerative disorders. Scales like GDS can help in measuring the accurate stage of a person with cognitive loss, providing an alert to caregivers and family members. Moreover, understanding the seven stages of LBD provides a way to early detection and proper care planning. In addition, raising awareness, offering compassionate care, and assisting caregivers can help people with such disorders.
FAQs
1. Is there any best treatment for Lewy body dementia?
There is no cure for LBD to date. However, the focus with treatment is on managing the symptoms using therapy, medication, and supportive care. Cholinesterase inhibitors can help with cognitive symptoms, while careful use of medications may address movement or behavioral issues.11
2. What is the life expectancy of a person with Lewy body dementia?
The average life expectancy of a person with LBD is 5 to 7 years, though it can vary widely.7
3. At what stage do dementia patients forget family members?
Dementia patients begin to forget family members in the later stages (stage 6 and stage 7) of the disease. This usually occurs when significant memory loss and confusion affect their ability to recognize familiar faces and relationships.
4. Why do dementia patients get angry at night?
Dementia patients often get angry at night due to a phenomenon called sundowning, where confusion and agitation worsen in the late afternoon or evening.13
5. What makes a dementia patient happy?
For instance, simple activities like listening to music, looking at photos, watching movies, or remembering happy moments can bring joy to people with dementia. This is because the parts of the brain that feel happiness often stay strong even as dementia progresses.14
References
- Prasad S, Katta MR, Abhishek S, Sridhar R, Valisekka SS, Hameed M, et al. Recent advances in Lewy body dementia: A comprehensive review. Disease-a-Month [Internet]. 2023 [cited 2025 Jul 20]; 69(5):101441. Available from: https://www.sciencedirect.com/science/article/pii/S0011502922001250.
- APA Dictionary of Psychology [Internet]. [cited 2025 Jul 20]. Available from: https://dictionary.apa.org/
- Haider A, Spurling BC, Sánchez-Manso JC. Lewy Body Dementia. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2025 [cited 2025 Jul 20]. Available from: http://www.ncbi.nlm.nih.gov/books/NBK482441/.
- Alzheimer’s Stages – Early, Middle, Late Dementia Symptoms | alz.org. Alzheimer’s Association [Internet]. [cited 2025 Jul 20]. Available from: https://www.alz.org/alzheimers-dementia/stages.
- García-Martín V, Hoyos-Alonso MC de, Ariza-Cardiel G, Delgado-Puebla R, García-Domingo P, Hernández-Melo E, et al. Neuropsychiatric symptoms and subsyndromes in patients with different stages of dementia in primary care follow-up (NeDEM project): a cross-sectional study. BMC Geriatr [Internet]. 2022 [cited 2025 Jul 20]; 22:71. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8783993/.
- Pasi M, Poggesi A, Pantoni L. The use of CT in dementia. Int Psychogeriatr. 2011; 23 Suppl 2:S6-12.
- efetherston. Lewy Body Dementia Association [Internet]. 2020. New Research Definition of MCI-LB – LBDA; [cited 2025 Jul 20]. Available from: https://www.lbda.org/new-research-definition-of-mild-cognitive-impairment-with-lewy-bodies-mci-lb/.
- McKeith IG, Boeve BF, Dickson DW, Halliday G, Taylor J-P, Weintraub D, et al. Diagnosis and management of dementia with Lewy bodies: Fourth consensus report of the DLB Consortium. Neurology [Internet]. 2017 [cited 2025 Jul 20]; 89(1):88–100. Available from: https://www.neurology.org/doi/10.1212/WNL.0000000000004058.
- Londos E, Hanxsson O, Alm Hirsch I, Janneskog A, Bülow M, Palmqvist S. Dysphagia in Lewy body dementia – a clinical observational study of swallowing function by videofluoroscopic examination. BMC Neurol [Internet]. 2013 [cited 2025 Jul 20]; 13:140. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4126015/.
- Altunkalem Seydi K, Kaya D, Yavuz I, Ontan MS, Dost FS, Isik AT. Primitive reflexes and dementia in older adults: a meta-analysis of observational and cohort studies. Psychogeriatrics. 2024; 24(3):688–700.
- Xu H, Habich A, Ferreira D, Elisabet L, Westman E, Eriksdotter M. Long‐term effects of cholinesterase inhibitors and memantine on cognitive decline, cardiovascular events, and mortality in dementia with Lewy bodies: An up to 10‐year follow‐up study. Alzheimer’s & Dementia [Internet]. 2024 [cited 2025 Jul 20]; 20(10):6740–54. Available from: https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.14118.
- efetherston. Lewy Body Dementia Association [Internet]. 2022. Preparing Families with LBD for End of Life; [cited 2025 Jul 20]. Available from: https://www.lbda.org/blog/preparing-families-with-lbd-for-end-of-life/.
- Coping With Agitation, Aggression, and Sundowning in Alzheimer’s Disease. National Institute on Aging [Internet]. 2024 [cited 2025 Jul 20]. Available from: https://www.nia.nih.gov/health/alzheimers-changes-behavior-and-communication/coping-agitation-aggression-and-sundowning.
- Miklitz C, Fliessbach K, McCormick C. Happiness, positive emotions, and subjective well-being in dementia. Front Neurol [Internet]. 2024 [cited 2025 Jul 20]; 15:1422354. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11300272/.
Author Bio
Preeti Prangya Panda
Preeti Prangya Panda holds a Master’s degree in Biotechnology with three years of experience as a freelance content writer in the medical and healthcare domain. Her passion for writing stems from deep curiosity about medicine, health, and innovations. Through her work, she aims to bridge the gap between science and the public, promoting health literacy and sharing the latest advancements in the field.
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