Understanding the Symptoms and Care Options for Lewy Body Dementia
Lewy body dementia (LBD) is the second most common type of dementia after Alzheimer’s, and it’s thought to account for 10-15% of all those with the disease. Whether you’re caring for a loved one who’s been diagnosed with LBD or have dementia with Lewy bodies yourself, it might be difficult to know where to turn for help and guidance.
People with Lewy body dementia commonly find that their ability to think and move worsens over time. They might start seeing things that aren’t there, known as visual hallucinations, as well as experience fluctuations in alertness and sleep disturbances.
Today, we’ll explore the symptoms of Lewy body dementia to look out for, the best care options out there to consider and how Country Cousins can help.
What are the two types of Lewy body dementia?
There are two subtypes of LBD: dementia with Lewy bodies and Parkinson’s dementia. Both cause similar symptoms, but there are some subtle differences – the main of which is when certain symptoms occur.
- Dementia with Lewy bodies: This type of LBD often shows itself as cognitive symptoms (changes in thinking, visual perception etc.) and sleep difficulties first, with difficulty in movement occurring later.
- Parkinson’s dementia: Parkinson’s symptoms will show up first before the cognitive symptoms begin to appear.
As Lewy body disease progresses, the person affected will often see a range of physical and cognitive symptoms appearing or getting worse. This may make it harder for them to complete everyday tasks on their own.
What causes Lewy body dementia?
Lewy bodies are protein deposits that develop in the nerve cells within the brain, affecting the regions that control our thinking, memory and movement. These abnormal clumps of protein gather together, and the larger they get, the more damage they can cause.
There are a few factors that may increase the risk of developing Lewy body dementia, including:
- Age: People older than 60 have a higher risk of experiencing LBD.
- Gender: A higher number of men seem to develop the disease than women.
- Family history: People are more likely to get LBD if someone in their family has experienced the disease or Parkinson’s.
Symptoms of Lewy body dementia
A person with Lewy body experiences a range of dementia symptoms affecting their body and mind. Here are the most common indicators you or a loved one might experience:
Visual hallucinations
Many people who develop LBD say that their first symptom was hallucinations, which is when you see things that aren’t really there. The things you see may range from random shapes to animals, people to fears. Some hallucinations worry people while others are completely harmless – it all depends on what you visualise. It’s also possible for hallucinations to involve sound, smells and touch.
Movement symptoms
The movement symptoms of LBD often coincide with the symptoms of Parkinson’s disease. These might include slowed movement, tremors, rigid muscles or a shuffling walk. Movement symptoms usually increase the risks of falling, which puts the person affected in danger of serious injuries.
Poor regulation of body functions
Lewy body dementia affects how well the autonomic nervous system controls bodily functions like heart rate, sweating and digestion. LBD can cause a sudden drop in blood pressure when standing, which may cause dizziness, falls, loss of bladder control and bowel issues.
Cognitive changes
It’s not uncommon for people with LBD to have changes in the way they think, similar to the symptoms of Alzheimer’s disease. These symptoms include confusion, poor attention, visual-spatial problems and memory loss.
Trouble with sleep
Sleep disruptions are one of the most common symptoms for people dealing with Lewy body dementia. This is because they often have rapid eye movement, also known as REM sleep behaviour disorder. If you were to develop this symptom, you might wake up lots during the night, becoming restless and experiencing intense dreams or nightmares.
If you regularly sleep in the same bed as someone, you might’ve heard them say you’ve been kicking, punching, yelling or screaming during the night.
Fluctuations in alertness
People with Lewy body dementia sometimes have to deal with episodes of intense drowsiness and long naps during the day. Loved ones may notice you staring off into space for extended periods of time, or your speech becoming disorganised during conversations. Other times, you might surprise yourself and others around you with how focused and raring to go you are.
Mood and behaviour changes
Lewy body dementia is often a lot to deal with, from getting your initial diagnosis to your symptoms appearing and progressing as time goes on. Because of this, along with the stress and pressure of everyday tasks getting harder to manage on your own, it’s not uncommon for people with LBD to develop depression or lose motivation. Other changes could include anxiety, delusions and paranoia.
All mood and behaviour changes are often difficult for families, but one type of delusion, called Capgras syndrome, is particularly common and challenging. This is where the person dealing with LBD believes that a friend or family member has been replaced by an impostor.
Are there any complications of Lewy body dementia?
The main concern surrounding LBD is that it’s progressive, meaning the symptoms a person experiences at the beginning of their diagnosis will gradually get worse over time. As symptoms advance, complications can arise. These might include:
- Worsening dementia
- Aggressive behaviour
- Increased risk of fall or injury
- Depression
- Worsening of movement symptoms, such as tremors and stiffness
- Death, an average of seven to eight years after symptoms start
Care options for people with Lewy body dementia
The options of care for someone dealing with LBD symptoms will depend largely on what stage of the disease they’re in. Each person’s experience with dementia is unique, so it’s important that their care is tailored to them as much as possible. Here are some of the care options you can choose from depending on the stage of LBD you’re experiencing:
Early stage Lewy body dementia
The early stage of LBD usually only materialises in the form of subtle symptoms. These may be cognitive or physical, but not often both.
During this stage, the best care options include:
- Family carers or visits: Families may be able to visit their loved one with early-stage LBD a few times a week, helping them to remain independent and active while still establishing a consistent routine and safe environment.
- Therapies: Certain therapies might be able to help lessen mild symptoms, such as physiotherapy for movement and balance, cognitive stimulation for maintaining brain strength or psychological therapies to learn coping skills.
- Environmental and lifestyle adjustments: Family members can create a safe environment by reducing clutter and removing hazards and encouraging them to remain independent and active.
Moderate stage Lewy body dementia
As LBD progresses to the moderate stage, more support might be necessary. Symptoms often get worse and make daily tasks more difficult to complete on their own, and both physical and cognitive symptoms may be present.
Here are some of the best care options for this stage:
- Medications: Certain medicines may be able to manage symptoms like psychosis, sleep disturbances and Parkinsonism symptoms if the person is struggling to cope with their progressive disease.
- Live-in carers: When someone needs more round-the-clock care that their families can’t provide, a live-in carer is an excellent source of support while still fostering independence.
- Support groups: Support groups offer emotional guidance and practical advice from people who are going through the same thing or have already experienced it.
Advanced stage Lewy body dementia
At the advanced stage of Lewy body dementia, people might require intensive round-the-clock care.
The best care options during this stage could be:
- Continuous, compassionate care: Most people with advanced-stage LBD will need 24-hour care to keep their safety and well-being protected, including help with eating, bathing and toileting.
- Stimulation and therapies: These work to strengthen and maintain cognitive function and mobility, preserving a person’s independence and dignity.
- Comfort care: End-of-life care will often focus on pain management and emotional support.
How Country Cousins can help
It’s common to not know where to start when you or a loved one has been diagnosed with Lewy body dementia. As one of the UK’s leading dementia home care agencies, we can help by supporting your life at home. Here’s what our experienced carers offer people with Lewy body dementia:
- An experienced carer who understands dementia and treats you or your loved one with respect and dignity
- Cooking of nutritious meals
- Support with continence care and bathing
- Household chores
- Help with arranging and attending appointments and outings
- Reminders and encouragement to take medication
- Compassionate and friendly companionship
Our carers are placed in long-term assignments, so you can get to know your carer without having to worry about remembering lots of faces or becoming anxious about different people coming and going. Our goal is to support people with Lewy body dementia in a way that helps, encourages and uplifts them.
Talk to our team today
As the UK’s longest-serving introductory live-in care agency, we have been providing compassionate live-in care to those who need it since 1959 – all from the comfort of their own homes.
Give us a call today on 01293 224 706. Our experienced team is on hand to help from Monday to Friday, 8 am to 6 pm. Alternatively, contact us through our online enquiry form.
