Dementia with Lewy bodies (DLB) and Parkinson’s disease (PD) are both disorders that affect someone’s ability to move and think. They have many similarities but also some crucial differences. This article will explain these conditions, how they are related, what to expect throughout the disease, and how to support your loved one with DLB or PD.
What are Lewy Bodies and How Do They Affect the Brain?
Lewy bodies are like tiny balls of sticky stuff that can build up in the brain. They are made of a protein called alpha-synuclein, which is normally found in the brain and helps the brain cells work properly. But sometimes, this protein can fold incorrectly and clump together, forming Lewy bodies.
Lewy bodies can cause problems for the brain because they can block the signals that the brain cells send to each other. These signals are called neurotransmitters, and they help the brain control different functions of the body and mind. For example, some neurotransmitters help us move our muscles, remember things, feel happy or sad, sleep well, and regulate our blood pressure and heart rate.
When Lewy bodies interfere with the neurotransmitters, they can cause different symptoms depending on where they are in the brain. Some of the most common symptoms are:
Trouble with movement: Lewy bodies can affect the part of the brain that controls movement, causing stiffness, slowness, shaking, and balance problems. Walking, talking, writing, eating, and other everyday tasks can be challenging.
Trouble with thinking: Lewy bodies can affect the part of the brain that controls thinking, memory, attention, and judgment. This can make remembering things, following instructions, solving problems, and making decisions hard.
Trouble with mood: Lewy bodies can affect the part of the brain that controls mood, emotions, and personality. This can make it hard to feel happy, calm, and motivated. It can also cause changes in behavior, such as being more irritable, aggressive, or paranoid.
Trouble with sleep: Lewy bodies can affect the part of the brain that controls sleep, causing problems with falling asleep, staying asleep, and having vivid dreams. This can make it hard to feel rested and refreshed in the morning.
Lewy bodies are linked to several brain-affecting diseases, such as dementia with Lewy bodies (DLB) and Parkinson’s disease (PD). These diseases are similar in some ways but different in others.
What to Expect Throughout the Disease?
Dementia with Lewy bodies (DLB) and Parkinson’s disease (PD) are diseases that affect the brain and make it hard to do many things. They worsen over time, and no medicine can make them disappear. However, not everyone with these diseases has the same problems or gets worse at the same speed. It depends on their age, genes, other health problems, and where they live.
Some of the problems that people with DLB and PDD have are:
Moving slowly, feeling stiff, shaking, and losing balance (parkinsonism)
Forgetting things, getting confused, and having trouble with thinking and solving problems (cognitive impairment)
Seeing or hearing things that are not there, believing things that are not true, and feeling scared or angry for no reason (psychosis)
Feeling sleepy or awake at the wrong times, having strange dreams, and acting out their dreams (REM sleep behavior disorder)
Feeling sad, worried, or bored (affective impairment)
Having trouble with controlling their blood pressure, heart rate, temperature, sweating, digestion, and urination (autonomic dysfunction)
However, not everyone with DLB and PDD has the same problems or the same severity of the issues. For example:
In DLB, people have more trouble thinking and seeing things that are not there, and they have these problems earlier than in PDD. In PDD, people have more trouble with moving and shaking, and they have these problems earlier than in DLB.
In DLB, people have more changes in how alert and awake they are, which are more severe than in PDD. In PDD, people have more changes in how well they can move, and these changes are more severe than in DLB.
In DLB, people have more problems with sleeping and dreaming, and they have these problems earlier than in PDD. In PDD, people have fewer problems with sleeping and dreaming, and they have these problems later than in DLB.
In DLB, people have more trouble controlling their body functions, which affects more parts of their bodies than in PDD. In PDD, people have less trouble controlling their body functions, which affects fewer parts of their bodies than in DLB.
People with DLB and PDD usually live for about 5 to 8 years after they are diagnosed, but this can be different for different people depending on how well they are cared for. Some of the things that can make their lives harder or shorter are:
Falling, hurting themselves, getting infections, and breaking bones because of their movement and balance problems
Choking, getting pneumonia, and not eating enough because of their swallowing problems
Getting urinary tract infections, constipation, and wetting themselves because of their bladder and bowel problems
Having a stroke, a heart attack, or fainting because of their blood pressure and heart rate problems
Having delirium, agitation, and aggression because of their thinking and psychiatric problems
Feeling isolated, lonely, and stressed because of their social and emotional problems
No cure or treatment can stop or reverse DLB and PDD, but some things can help with the symptoms and improve the lives of the patients and their caregivers. These include:
Medicines, such as levodopa, dopamine agonists, anticholinergics, and MAO-B inhibitors for movement and shaking problems; cholinesterase inhibitors and memantine for thinking and memory problems; antipsychotics, antidepressants, and mood stabilizers for seeing things that are not there and feeling sad or worried problems; and other drugs for sleep and body function problems
Therapies, such as physical, occupational, and speech therapy for movement, function, and swallowing problems; cognitive and behavioral therapy for thinking and psychiatric problems; and music, art, and animal therapy for emotional and social problems
Lifestyle changes, such as regular exercise, healthy diet, drinking enough water, and avoiding alcohol, tobacco, and caffeine for general health and well-being; avoiding things that can make their problems worse, such as stress, noise, and infections; and keeping a regular sleep schedule
Hospice Care for Your Loved One
If you are caring for a loved one with dementia, you may have heard of hospice care, but you may not know what it is or when it is appropriate. Hospice care is a special type that focuses on providing comfort and support to people with life-limiting illnesses and their families. It does not aim to cure the disease but to ease the symptoms and improve the quality of life in the final stages.
Hospice care can benefit people with dementia and their families in many ways. It can help manage the pain, agitation, and distress common in advanced dementia. Hospice care can also provide emotional and spiritual support to the person with dementia and their loved ones and practical assistance with daily tasks and caregiving. Depending on the patient’s and family’s needs and preferences, hospice care can be provided at home, in a hospice facility, or a nursing home.
Hospice care is available to people with a life expectancy of six months or less, as determined by a physician. However, this does not mean hospice care will end after six months. Hospice care can continue if the person meets the eligibility criteria and the family wishes to receive it. For people with dementia, the eligibility criteria may include experiencing multiple physical and mental declines, such as losing weight, having difficulty swallowing, being bedridden, or having severe cognitive impairment. Hospice care may also be appropriate for people with dementia who require frequent nursing care or who have recurrent infections that are hard to treat or prevent.
Signs and Symptoms that Indicate Hospice Care May Be Appropriate for Someone with Dementia
Dementia is a progressive disease that affects the brain and causes memory loss, confusion, and behavioral changes. There are different types and stages of dementia, but one of the most common and severe forms is Alzheimer’s disease. Alzheimer’s disease can be measured by the FAST Scale, which stands for Functional Assessment Staging. The FAST Scale has seven stages, from 1 to 7, that describe the functional decline of people with Alzheimer’s disease. Stage 7 is the most advanced, indicating that the person may benefit from hospice care.
Some of the signs and symptoms that are typical of stage 7 on the FAST Scale are:
Incontinence: People who need diapers or pads cannot control their bladder or bowel movements.
Inability to communicate: The person cannot speak or understand language and may only make sounds or gestures.
Loss of all intelligible vocabulary: The person cannot say any words that make sense and may only repeat sounds or phrases.
Another sign that hospice care may be appropriate for someone with dementia is severe cognitive impairment. This means that the person has no awareness of self, environment, or time and cannot recognize familiar people or objects. The person may not respond to their name, not know where they are or what day it is, and may not remember their spouse, children, or friends. The person may also hallucinate, have delusions or paranoia, and may become agitated or aggressive.
Other signs and symptoms that indicate hospice care may be appropriate for someone with dementia are recurrent infections and difficulty swallowing, eating, or drinking. Recurrent infections, such as pneumonia, urinary tract infections, or sepsis, are common in people with advanced dementia, and they can be life-threatening or cause complications. Difficulty swallowing, eating, or drinking can lead to weight loss, dehydration, or malnutrition and can also increase the risk of choking or aspiration. These conditions can affect the person’s comfort and well-being and may require hospice care to manage them.
Pain, agitation, or distress are also signs and symptoms that indicate hospice care may be appropriate for someone with dementia. Pain can be caused by various factors, such as infections, injuries, pressure ulcers, or arthritis, and it can be hard to detect or measure in people with dementia, who may not be able to express or report it. Agitation or distress can be caused by cognitive impairment, environmental factors, or unmet needs, and they can manifest as restlessness, anxiety, anger, or depression. Pain, agitation, or distress can affect the person’s quality of life and comfort and may require hospice care to relieve them with medication or other interventions.
The Importance of Hospice Care for People with Dementia and Their Families
Hospice care can make a difference for people with dementia and their families in the final stages of the disease. Hospice care can help improve the person’s comfort and dignity and reduce their suffering and stress. Hospice care can also help the family cope with the emotional and practical challenges of caring for a loved one with dementia and provide them with guidance and support. Hospice care can help the family prepare for the end of life and the grief process and offer them bereavement services after the death of their loved one.
If you think that hospice care may be proper for your loved one with dementia, you should talk to your physician and hospice team about your options and preferences. They can help you determine the eligibility and availability of hospice care and explain the benefits and services that hospice care can provide. They can also help you find and select a hospice provider that meets your needs and expectations.
There are many resources and contact information that you can use to learn more about hospice care and find a hospice provider near you. Some of them are:
The Alzheimer’s Association: A national organization that provides information, education, support, and advocacy for people with Alzheimer’s disease and their families.
The Hospice Foundation of America: A national organization that promotes hospice care and educates the public and professionals about its benefits and services.
The National Hospice Foundation: A national organization that supports hospice care and raises funds for hospice programs and research.
Hospice care can be a valuable option for your loved one with dementia and your family. Hospice care can help you make the most of the time you have left with your loved one and provide you with comfort and support. Hospice care can help you honor your loved one’s wishes and values and celebrate their life and legacy. Hospice care can help you say goodbye to your loved one with peace and grace.
Conclusion
DLB and PDD are diseases that make the brain work differently and cause many problems for the people who have them and the people who take care of them. But you can learn more about these diseases and how to deal with them. You can also give your loved one the best care and support possible and make their life better and happier. You can also take care of yourself and find joy and meaning in your role as a caregiver. You don’t have to do this alone; many people and places can help you and your loved one.
