Understanding the 7 Stages of Lewy Body Dementia

What is Lewy body dementia?

Dementia is used as an umbrella term to describe a range of conditions that impact a person’s cognitive function. Lewy body dementia (sometimes referred to as dementia with Lewy bodies) is one form of dementia that can cause symptoms such as: 

• Issues with understanding, thinking, memory and judgement (while this is true of those with Lewy body dementia, it is more common in Alzheimer’s disease)
• Hallucinations, such as hearing voices or seeing things that are not there
• Confusion or tiredness 
• Slow movements, stiff limbs, or uncontrollable shaking
• Disturbed sleep
• Fainting, falls or balance issues 
• Depression or anxiety

According to research from Alzheimer’s Research UK, an estimated 10% of those with dementia are thought to have Lewy body dementia. There are many different types, which you can read more about in our article: The Different Types Of DementiaAs an overview, some of the most common in the UK include:

• Alzheimer’s disease: This is the most common, and is thought to be caused by a buildup of amyloid and tau in the brain, which can form plaques and tangles, making cognitive function more difficult. Those with Alzheimer’s may experience memory issues, difficulties with reasoning, communication challenges, mood changes, and more. You can read more about this condition in our article: What Is Alzheimer’s?
• Vascular dementia: The second most common type of dementia interrupts the flow of blood vessels and oxygen within the brain, and can cause alterations to memory, cognitive function and behaviour. 
• Frontotemporal dementia (FTD): This is another umbrella term for a number of dementia conditions that are less common overall, but most common in those aged 40-60. Thought to occur due to a buildup of proteins in the frontal and temporal lobes, this can cause changes in personality, behaviour, language and speech. 

Lewy body dementia (LBD) is the third most common type of dementia and is thought to affect around 100,000 people in the UK. It can be split into two different subtypes – dementia with Lewy bodies, and Parkinson’s disease – this is because most people with Parkinson’s will have Lewy bodies present in their brains.Lewy body dementia symptoms that differ from other types of dementia include hallucinations (occurring in up to 80% of people with LBD) and sleep disturbances (affecting up to 90% of those with LBD). Those with Parkinson’s may experience difficulty with movement, and are likely to notice similar cognitive changes to Lewy body dementia. While the risk of eventually developing dementia increases, not everyone with Parkinson’s will go on to develop this.

How does Lewy body dementia affect the brain, and what causes it to happen?

Lewy body dementia causes abnormal clumps of protein to gather inside brain cells and accumulate over time until they start to impact brain function and cognition. Both Lewy body dementia and Parkinson’s have been linked to a deterioration of certain neurotransmitters in the brain, such as dopamine (the brain’s signalling system for muscle movement), and acetylcholine (the neurotransmitters responsible for memory, cognition and processing). The cause of Lewy body dementia remains unknown, however the primary risk factor for developing this type of dementia is age, and studies have identified those with Parkinson’s also have a higher risk of developing this type. In addition, rapid eye movement sleep behaviour disorder (RBD) has been found to be a core feature of Lewy body dementia, with a prevalence of up to 76%. For this reason, those who suffer from this condition are thought to have additional risk factors for Lewy body dementia. Research suggests Lewy body dementia could have genetic risk factors, but is not considered a genetic disease. If a person has a family member with Lewy body dementia, they may have an increased risk of developing the condition due to potential variants in certain genes, but this is not guaranteed. 

What are the stages of Lewy body dementia?

Understanding how dementia is likely to progress can be a huge help to carers and family members looking after someone with Lewy body dementia, as it can help them to anticipate needs, plan ahead for future care, and better understand what is happening to the person. Dementia progresses over time, and the condition can often be broken down into particular stages which range from mild to severe, according to the 7-stage Global Deterioration Scale (GDS) designed by Dr. Barry Reisberg in 1982. This helps to categorise a person’s dementia symptoms. In some cases, 3 stages of dementia are discussed; mild, moderate and severe, which are covered in our guide to managing the stages of dementia. However, the Global Deterioration Scale recognises 7 stages within this, including: 

Stage 1: No Cognitive Decline

This is considered mild dementia, and at this very early stage Lewy body dementia might be present but likely has no detectable symptoms, and may not be picked up in a dementia assessment. A person may experience very slight changes, such as increases in anxiety or depression, or difficulties with decision-making. At this early stage, carers or loved ones should focus on promoting the person’s overall health, wellness and cognitive function.

Stage 2: Very Mild Cognitive Decline

Still within the mild dementia category, this stage may show very mild symptoms of cognitive decline, but these can sometimes be so slight that they are overlooked by family members, carers and medical professionals alike. In stage 2, a person may experience a slightly more noticeable decline in their cognitive abilities, such as memory loss (forgetting where they keep everyday objects), or decreased problem-solving skills. An example may be if someone previously completed a crossword puzzle easily, but now finds them difficult. While symptoms may be noticeable, they are unlikely to negatively impact the person’s usual daily activities, but early detection of dementia and monitoring of symptoms are important in order to seek the best treatment.In the early stages, it is important to consider practical steps that may be required in future, such as creating an Advance Statement for Care, a Living Will, and a Health And Welfare Power Of Attorney. 

Stage 3: Mild Cognitive Decline

This is the last stage of mild dementia, and could show more noticeable symptoms. Common challenges at this stage might include difficulty multitasking, becoming easily confused, getting lost while walking or driving somewhere new, or forgetting names. At this stage a person may still be able to live independently, but could experience symptoms that affect their work if they are in employment. For this reason, they may require help with certain daily activities like keeping track of money or taking any necessary medications.

Stage 4: Moderate Cognitive Decline 

Moving into the moderate dementia category, this stage may bring with it more noticeable symptoms such as significantly reduced problem-solving skills, memory lapses, and difficulties with communication. At this stage a person may begin to need help with activities like getting washed and dressed each day, and remembering to cook and eat. Their behaviour may change, such as becoming easily agitated or suspicious of people around them, but they will likely still be able to recognise and communicate with family and friends. Depending on their individual circumstances, a person at this stage of dementia may still be able to live alone, but could benefit from home care visits to assist with personal care. Their ability to organise things could be impacted, so they may require help with planning, travelling to appointments, managing finances, and other administrative tasks. A person at this stage of dementia may still be able to move around easily, but it can be beneficial to start thinking about adapting to their changing communication needs, planning for future mobility issues with home adaptations, and considering long term palliative care for dementia to help maintain quality of life.

Stage 5: Moderately Severe Decline

Within the moderate dementia category, this stage may see further decline in cognitive function and abilities, posing challenges to a person’s daily activities. At this stage they will likely need a lot more assistance in the form of home care, or to be moved to a care facility. Home care is often recommended for older adults, according to the World Health Organization, as this helps them maintain a strong sense of wellbeing. However, individuals with dementia may find home care particularly helpful as it means remaining in familiar surroundings with a lower likelihood of confusion and anxiety as their condition progresses. One 2013 study found those living with dementia at home experienced higher activity levels, quality of life, and felt more socially connected than those living in a care home. This can also be the preferred option for those who will eventually need end-of-life care, with research finding that an estimated 71% of people would prefer this option over a hospice. While staying at home is often best, living arrangements may need to be adjusted to account for their advancing symptoms, such as communication issues, and an inability to perform personal care tasks. Other symptoms often experienced at this stage could include disorientation and confusion, difficulty recognising family members, and severe recollection issues. At this stage they may depend almost entirely on caregivers, so providing them with an environment where they feel safe and supported is of the utmost importance. 

Stage 6: Severe Decline

Those at this stage of dementia are considered to have severe dementia, and this means navigating significant cognitive and physical decline. Professional care of some sort will almost certainly be required if the person does not have full-time care from a loved one. They may no longer be able to communicate effectively, recognise family or friends, and will depend entirely on others for daily care. As well as cognitive decline, their physical abilities will also be impacted, such as their ability to walk independently. Alternatively, if their physical abilities are intact, they may develop a tendency to wander off or respond to stimuli around them, such as shadows. Sundowning can become an issue, which you can read more about in our article: What is “sundowning” in dementia?Behavioural changes could also become more severe at this point, and they may display aggression, paranoia or agitation that is uncharacteristic of their usual personality. At this stage, patience and understanding must be practised in order to help the person feel as comfortable as possible. You may find more useful information in our guide to advanced dementia.

Stage 7: Very Severe Decline

The final stage of severe dementia will usually involve palliative care, or end-of-life care, as well as emotional support for the person and their loved ones. At this stage the brain will become almost completely incapable, which could result in diminished motor skills, complete decline of communication, and the need for constant care.You may find more helpful information in our guide to when someone should be offered palliative care.While severe dementia can last for several years in some cases, and end-of-life care will not necessarily be required, it is important to remember there is no cure or delay for the symptoms of dementia, and this final stage of the process is often preparation for end-of-life care. The doctor in charge of the person’s care may be able to provide more information to loved ones about their prognosis, depending on symptoms.

How is Lewy body dementia diagnosed and treated?

Like other forms of dementia, there is no cure for Lewy body dementia, so it is important to seek a diagnosis as early as possible so you or your loved one can receive the appropriate care for the relevant stage of dementia. The first step is to speak to your GP and discuss signs and symptoms you have noticed, so they can explore a possible dementia diagnosis. They will typically begin by ruling out any other treatable conditions that could cause similar symptoms, as well as doing a review of your medical and family history to find out what your personal dementia risk may be. If they think it is appropriate, they may suggest brain scans to identify signs of strokes, tumours or other brain issues, or other tests such as a psychiatric evaluations to explore any behavioural or mood changes, genetic tests to learn more about any family history of dementia, or cerebrospinal fluid (CSF) tests to measure the proteins and other fluids in the brain and spinal cord. If they believe dementia could be the issue, they may refer you to a neurologist specialising in the brain and nervous system, a geriatric psychiatrist, or a memory clinic for testing. Lewy body dementia is a fatal condition that will progress over time, and according to the National Institute on Aging, someone could expect to live an average of 5-8 years after diagnosis. However, this could be as long as 20 years for otherwise healthy individuals. Dementia is a diagnosis no one wants, but if you suspect any signs of this in yourself or a loved one, it is best to seek help as soon as possible so your doctor can identify the cause and start treatments to help manage the condition and plan for the future. Doctors may prescribe certain medications to treat dementia symptoms such as movement difficulties, sleep disturbances, or behavioural and mood issues. 

When should someone with Lewy body dementia seek specialist care?

If you or a loved one has been diagnosed with Lewy body dementia, gaining more understanding of its progression is often the best way to plan for the future. You may be looking into caring for someone with dementia at home, but even in the early stages, discussing specialist care can be helpful so you can watch for signs that someone may need additional help, and react accordingly. If you are looking into specialist care for dementia, you may want to ask a home care provider questions such as:

• Will I/my loved one receive a carer with specialist training and experience in dementia? 
• Will I/my loved one receive the same carer on a regular basis?
• How often can I/my loved one receive specialist dementia care?
• Do I/does my loved one need a live-in carer, and is this an option?
• How much will I/my loved one be able to influence the daily schedule of activities? 
• Can care adapt as my/my loved one’s symptoms progress through the different stages of dementia? 

At Home Instead, we offer specialist, person-centred care, meaning as long as the person requiring care is able to make decisions about their own care and how they spend their time, our Care Professionals will respect their wishes provided they are safe and well. They will also provide a high standard of dementia-focused care through our unique training programme created by ageing experts, dementia specialists and key medical practitioners from across the world. This training is assured by City & Guilds, so you can be confident you are in the right hands. You may find more helpful information in our guide on how to choose and arrange home care.We’re an award-winning home care provider and part of a worldwide organisation devoted to providing the highest-quality relationship-led care for older people in their own homes. Arranging care for yourself or your loved one shouldn’t be stressful, so whatever questions you would like answered, feel free to reach out to the Home Instead team to discuss your needs.