…….Help thou mine unbelief.
It seems fitting soon after Good Friday and Easter to focus on a contemporary cross in our world and ponder a little on what of resurrection shines through our dark places.
For me the crucifixion of Jesus speaks most clearly when I see him standing beside us in the places where we hurt most. He is the God who joins with us in our humanity and if our tragedies and pains are to find any meaning, for the Christian at least, they need to be swept up in Christ’s own suffering. I am not comfortable with the simplicity which simply asserts that Jesus died for our sins…it is far more complex than that.
The question that has haunted us all down the ages is, why does God allow suffering? Not all suffering is down to our sin although of course much of it is.
Suffering is part of the way an evolving world is. It is part of the complexity of our DNA, even of that which makes us individuals. It is here that the suffering of Jesus can speak to us most clearly. It is that which makes us resonate with the hymn, ‘simply to thy cross I cling.’ It is in that knowledge and that action where we find our redemption. It is the God who loves us beyond all imagining who holds us close in and through his own suffering that can give our suffering meaning.
In the mystery of the incarnation Christ lives and dies with us.
A family story is a focus for my thinking. One of the most challenging things for many of us is to watch those we love apparently grow away from us through dementia.
It is over simplistic, like so much of what I believe, to put it down to an aging population. Of course that is part of it but it is not that straightforward. That pain can start young.
My youngest brother Bob was in his early fifties when he showed the first signs that all was not well.
It is one of those tragic ironies that Bob’s mental state showed sign of deterioration so young just when he had, for the first time in his life, found a rewarding job that interested him and was well paid. Before this Bob had little.
For many years he worked for Redifusion, repairing television sets and brought his children piled in the back of the van to see Aunty Ann. His Redifusion van was often parked here in The Close in Salisbury. Bob married young. Bob’s wife was to prove his strength.
He married in Eastbourne Town Hall. At the time, I thought the marriage was destined to fail; so young, so few resources of any kind; but how wrong I was. We all supported them that day except for his father who refused to come. Bob and his wife worked hard at trying to have a reconciliation particularly after their first child was born but it was not to be. Out of family distress came something good however . Bob and Marilyn had a successful marriage. The young couple eventually had three children, my two nephews by birth and Sharah whom they adopted. A stable happy family.
I was always very close to Bob and I was fortunate that he wanted his children brought up close to me. I have benefitted ever since. When coming to stay in the vicarage at Woodford he would come to church with me and one day he suddenly said. Look Ann I either have to stop going or take it seriously. What do I have to do to join properly?
Some months later I had the pleasure of attending his confirmation and he and his wife became members of their local church.
It was about then he first began to show signs that something was wrong. He started hiding things; amongst them bottles and at first we thought there was a drink problem but that was not so…symptoms increased and got more complex. Eventually he was diagnosed with a form of Alzheimer’s disease. Bob and his wife threw themselves into working for the Alzheimer’s society helping to raise awareness as well as money. He made broadcasts and gave talks and as things grew steadily worse he did useful things like maintaining his local churchyard with his wife seeing him off from home and someone from the church ringing her to say he had arrived safely the other end. Eventually even that had to stop
Bob’s condition steadily deteriorated. He had a form of dementia known as Lewy Body Disease. It is close to both Alzheimer’s and Parkinson’s. (see below)
One of the later symptoms is hallucination, sleeplessness, and imaginings. In due course Bob had to go into residential care after some of his fantasies and imaginings, (usually played out in the night,) became impossible to cope with. He developed a physical strength that could not easily be contained.
It is not for me to reflect on how his wife and children coped or suffered. It was all so painful and they so faithful. Bob found walking difficult and steadily lost motor control but there was sometimes precious moments when he recognized something or someone and then his smile was infectious.
Those of you familiar with my Facebook feed will recognize the surname Noble and there you will see my family still supporting those societies which encompass the needs of those with dementia.
Those of you who have trod this path with loved ones will understand and understand why, I will not presume to write on behalf of my family. All have had to come to terms with the feelings of sadness, loss tiredness and distress that surrounds such illness, each in their own way. It is an illness that is both public and private but as a society we need to find ways of supporting individuals who are caring in ways that are generous and consistent, compassionate and effective.
Sitting in a sleek black undertaker’s car going to the crematorium in Eastbourne, how proud I was to have a police escort… Many motor bikes. Bob had been a special constable for many years. They did him well for the four miles or so from church to crematorium. Traffic was stopped, roundabouts shut off so the slow steady pace of cars and motorbikes was not interrupted nor overtaken. A four miles I shall always remember.
Bob was unique. He could be difficult and of uncertain temper; he had crazes (A wormery comes to mind) but he worked hard, loved his family and was loyal to his friends and all those people with whom he worked or mixed with.
He died in his sixties.
Where is God in all this? It is only too easy to make simplistic or trite remarks about suffering. There is nothing pleasant or easy to say about dementia. It is a disease that is physical in origin and devastating to experience either as sufferer or carer.
What our faith can and does say is that every individual is a unique child of God who is loved by God deeply and for always. Of course we suffer to see our loved ones deteriorate. We are created to be interdependent. I do believe God holds our loved ones in his care. Our bodies do not cease to be temples of the Holy Spirit…temples where God dwells and temples we can love and care for. The context of the Christian faith is the eternal. The resurrection of Jesus points us to that eternity and that full glory of God which we usually call heaven. What happened before we were born and during our lifetime is not the whole story. Dementia is not the end. Each precious personality will be transformed into the kind of fulfilment in God we can only imagine. It is the Jesus who felt abandoned by God who is with us and in us, as we love and care for the frail in our midst. In Christian thought, the journey of life moves beyond death into the otherness of God. Just as God is with us now, so He awaits us in His transcendence where through his grace we will share in his glory. We see this glory in the resurrection stories of the gospel. Jesus is alive, not always recognisable but there we too can be found waiting like Mary Magdalene to hear His voice call each of us by name or like the faithful Thomas desperate to be sure. When there is a moment of recognition or memory in the eyes of those we seem to have lost we know that the person is there beyond the outward appearance hel din God’s love.
My brother Bob, your mother, friend or father, is known by God and will be held by him. Just as many of the miracles of Jesus rest on the faithfulness of others to bring the sick to him, and hold the distressed, so we do the same for those we love. The despair inherent in caring for one who seems lost to us, is really hard but no one is lost to God. We may not see it now but it is all embraced in that Easter cry
Alleluia, He is Risen, He is risen indeed. Alleluia.
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Lewy Body Dementia
Signs, Symptoms, Treatment, and Caregiving for Dementia with Lewy Bodies
Lewy Body Dementia (sometimes called Dementia with Lewy bodies) is a common form of dementia that shares characteristics with both Alzheimer’s and Parkinson’s diseases. Since Lewy Body Dementia (LBD) symptoms resemble other diseases, it can be especially challenging to diagnose correctly. While there is currently no cure for LBD, that doesn’t mean there isn’t hope. Early diagnosis allows for important early treatment that can extend your independence and quality of life. As a caregiver, there is also much you can do to make the life of a loved one with LBD safer and more comfortable.
What is Lewy Body Dementia?
While not as well known as other dementias, Lewy Body Dementia (LBD) is the second most common type of progressive dementia after Alzheimer’s disease, accounting for up to 20 percent of dementia cases worldwide. The disease is caused by the accumulation in the brain of abnormal microscopic protein deposits—named Lewy bodies after the neurologist Frederick Lewy who first observed their effect. These deposits disrupt the brain’s normal functioning, causing it to slowly deteriorate.
LBD can take two forms: dementia with Lewy bodies or Parkinson’s disease dementia. The difference between them lies mainly in how the disease starts. In dementia with Lewy bodies, the person may have a memory disorder that looks like Alzheimer’s (/articles/ alzheimers-dementia/alzheimers-disease.htm) but later develop movement and other distinctive problems, such as hallucinations. In Parkinson’s disease dementia, the person may initially have a movement disorder that looks like Parkinson’s but later also develop
dementia symptoms. Over time, though, both diagnoses will appear the same. Most people with LBD develop a similar spectrum of problems that include variations in attention and alertness, recurrent visual hallucinations, shuffling gait, tremors, and blank expression, along with various sleep disorders.
While Lewy Body Dementia can bear a striking resemblance to Alzheimer’s disease or Parkinson’s disease (/articles/alzheimers-dementia/parkinsons-disease-and- dementia.htm), treatment can be very different, making early recognition of the signs and symptoms key to managing the condition.
Signs and symptoms of Lewy Body Dementia
As with Alzheimer’s disease or Parkinson’s disease, the symptoms of Lewy Body Dementia worsen over time, with intellectual and motor functions deteriorating, typically over several years. Despite the overlaps, however, there are symptoms that indicate the disorder is indeed LBD and not another disorder.
While patients with LBD lose cognitive function, they are less prone to the short-term memory loss associated with Alzheimer’s disease. More commonly, they experience greater problems with executive functions of planning, decision-making, and organization, as well as difficulties with visual perception, such as judging and navigating distances. This can cause them to fall frequently or become lost in familiar settings. Lewy Body Dementia can also cause sleep disturbances, including insomnia, daytime sleepiness, and REM behavior disorder, whereby they act out their dreams. Someone with Lewy Body Dementia will also exhibit at least two of three core features:
Changes or “fluctuations” in awareness and concentration. The person will swing from a state of alertness to appearing drowsy, confused, or staring into space. These episodes can be unpredictable and last anywhere from a few seconds to several hours.
Spontaneous Parkinson’s-like motor symptoms, such as slowness of movement, rigid muscles, tremor, lack of facial expression, or abnormal gait.
Recurrent visual hallucinations or delusions, such as seeing shapes, colors, people, or animals that aren’t there or conversing with deceased loved ones.
It is often these extra signs and symptoms that distinguish LBD from other types of dementia. In short, if you or a loved is experiencing cognitive decline without the archetypal problems with recent memory, it may indicate that you’re dealing with Lewy Body Dementia rather than another type of dementia.
Signs of Lewy Body Dementia
- Mental decline. Lewy Body patients may experience extreme swings between alertness and confusion or drowsiness, as well as reduced attention span.
- Recurrent visual hallucinations or depression. Hallucinations, usually related to people or animals, occur in most LBD patients. Depression is also common.
- Increasing problems handling the tasks of daily living. Tasks that used to be simple may become difficult for a person with Lewy Body Dementia.
- Repeated falls and fainting.
- Motor problems such as slow movement, shuffling walk, stiff limbs, or tremors.
- Sleep disturbances, including insomnia and acting out dreams—physically moving limbs, sleep talking, screaming, hitting, or even getting up and engaging in daytime activities.
- Fluctuations in autonomic processes. This includes blood pressure, body temperature, urinary difficulties, constipation, and difficulty swallowing.
Parkinson’s, Alzheimer’s, and Lewy Body Dementia
Since Lewy Body Dementia is commonly misdiagnosed for both Parkinson’s and Alzheimer’s, it is helpful to understand how these diseases overlap.
|Overlapping Symptoms of Parkinson’s, Alzheimer’s, and Lewy Body Dementia|
|Parkinson’s and Lewy Body Dementia||Alzheimer’s and Lewy Body Dementia|
|Overlapping Symptoms of Parkinson’s, Alzheimer’s, and Lewy Body Dementia|
|Some of the motor symptoms found in both Parkinson’s and Lewy Body Disease’s patients include:
• muscle stiffness
• difficulties with balance
• shuffling gait
• stooped posture
• slow movements
• restless leg syndrome
|Some of the cognitive symptoms found in both Alzheimer’s and Lewy Body’s patients include:
• behavioral changes
• decreased judgment
• confusion and temporal/spatial disorientation
• difficulty following directions
• decreased ability to communicate
Diagnosis and treatment of Lewy Body Dementia
Since many of the symptoms can also be caused by other conditions, confirming a diagnosis of Lewy Body Dementia can be challenging. To help your doctor, take a friend or loved one along to appointments and keep detailed notes about how and when your symptoms occur.
How is Lewy Body Dementia diagnosed?
Since the Lewy bodies themselves can be identified only by autopsy, an accurate diagnosis relies heavily on physician awareness of the defining characteristics of the disease. Your doctor or specialist may:
Assess your symptoms, such as how long you have had memory problems and the presence of sleep disturbances or hallucinations.
Assess your mental abilities, such as language, organization, and communication skills, attention span, and ability to follow instructions.
Conduct a physical examination, including blood tests and review of current medications, to rule out other causes of symptoms.
Conduct brain scans. While a brain scan can detect mental deterioration, not the actual Lewy bodies, it may still be helpful in diagnosis.
What is the treatment for someone with Lewy Body Dementia?
While there is no cure at present for LBD, or any medications aimed at specifically treating LBD, doctors are able to treat many of its symptoms. Treatments are aimed at controlling the cognitive, motor, and psychiatric problems associated with the disorder, including hallucinations, depression, and sleep disturbances. There are also a number of self-help strategies that can help improve symptoms.
Medication for Lewy Body Dementia
Medications for the treatment of LBD can offer relief of cognitive, movement, and behavioral symptoms, and may include the same drugs used to treat Alzheimer’s disease and Parkinson’s disease. However, some people with LBD can have extremely adverse reactions to certain medications and may react very differently than patients with Alzheimer’s or Parkinson’s. Some medications can even worsen LBD symptoms, another reason why accurate early diagnosis is so important. Speak with your doctor about possible side effects for any medication prescribed.
Your doctor may use cholinesterase inhibitors, such as donepezil and rivastigmine, to treat the cognitive symptoms of Lewy Body Dementia. They can also be effective in treating visual hallucinations and other psychiatric symptoms.
Levodopa may help with movement and rigidity in some people with LBD.
Melatonin or clonazepam can help treat REM Sleep Behavior Disorder and other sleeping problems.
Dementia with Lewy bodies and neuroleptics
Neuroleptics, or antipsychotics, are strong tranquillizers usually given to people with severe mental health problems. They are sometimes also prescribed for people with dementia to treat hallucinations or other behavior problems. However, if taken by people with LBD, neuroleptics may be particularly dangerous. This class of drugs can induce Parkinson-like side-effects, including rigidity, immobility, and an inability to perform tasks or to communicate. Studies have shown that they may even cause sudden death in people with LBD. If a person with LBD must be prescribed a neuroleptic, this should be done with the utmost care, under constant supervision, and should be monitored carefully and regularly.
According to Lewy Body Dementia Association: Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal. (NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure).
Self-help tips for living with Lewy Body Dementia
Being diagnosed with an incurable illness, especially one that involves dementia, can be an overwhelming experience. Because the treatment for Lewy Body dementia focuses primarily on symptom management, it’s helpful to take as proactive an approach as possible right away. This means reaching out to loved ones for support, working with your physician to control symptoms, and making lifestyle changes to accommodate the effects of the disease.
Become informed. Learn as much as you can about Lewy Body Dementia and how it is likely to specifically affect you, given your health history, age, and lifestyle. The more you know, the more control you’ll feel and the better you’ll be able to cope with symptoms.
Reduce stress. Stress and anxiety can make many symptoms of LBD worse. To find ways to relax, experiment with relaxation techniques such as music therapy, meditation, and deep breathing exercises. Pet therapy, involving visits from specially trained animals, can also help to relieve stress and improve the mood of people with LBD.
Treat depression. Depression can be common among those diagnosed with LBD. Report symptoms (/articles/depression/depression-signs-and-symptoms.htm) to your doctor and take steps to address the problem. Receiving treatment for depression can make it easier to handle the other challenges of LBD.
Avoid isolation. Reach out to family and friends for emotional support and join a support group for patients with Lewy Body Dementia. Talking to other people facing the same challenges can help with feelings of isolation and depression and provide a wealth of helpful information on coping with LBD.
Exercise can not only improve physical function, it can help relieve stress and boost your mood. Any type of physical activity that raises your heart rate can be beneficial, so find the activities that appeal to you.
Enjoy games and puzzles. Playing cards or word games such as Scrabble, or completing crossword and Sudoku puzzles can exercise your brain and may help slow cognitive decline in people with LBD.
Non-medical Treatments for Lewy Body Dementia
- Physical therapy options include cardiovascular, strengthening, and flexibility exercises, as well as gait training. Physicians may also recommend general physical fitness programs such as aerobic, strengthening, or water exercise.
- Speech therapy may be helpful for low voice volume and poor enunciation. Speech therapy may also improve muscular strength and swallowing difficulties.
- Occupational therapy may help maintain skills and promote function and independence. In addition to these forms of therapy and treatment, music and aroma therapy can also reduce anxiety and improve mood.
- Individual and family psychotherapy can be useful for learning strategies to manage emotional and behavioral symptoms and to help make plans that address individual and family concerns about the future. Source: LBDA
Caring for someone with Lewy Body Dementia
Caring for someone with Lewy Body Dementia, or any form of dementia, is hugely challenging. Just as LBD can impact every aspect of a person, caring for someone with the disease can impact every aspect of your daily life. You’ll likely face tests of stamina, problem solving, and resiliency. However, your caregiving journey can also be an intensely rewarding experience as long as you take care of yourself and get the support that you need.
How to help someone manage Lewy Body Dementia
When it comes to helping someone manage the symptoms of LBD, small things can often make a big difference.
Create a routine. It may help people with Lewy Body Dementia to have predictable routines, especially around meal times and sleep times.
Establish a nighttime ritual. Try to establish bedtime rituals that are calming and away from the noise of television, meal cleanup, and active family members. Limiting caffeine consumption during the day, discouraging daytime napping, and encouraging exercise can help curb restlessness at night.
Modify tasks. Break tasks into easier steps and focus on success, not failure.
Walk together. Taking a walk with the patient with LBD is a win-win activity. Being outdoors and exercising is vital for the health and state of mind for both the patient and you.
Strengthen senses. Have a doctor evaluate each the patient’s five senses in order to identify and treat any abnormalities. Then ask about exercises to improve them.
Make lifestyle changes. To help minimize the risk of fall-related injuries, you can help stabilize blood pressure. Help your loved one stay well hydrated, exercise, take in adequate sodium (salt), avoid prolonged bed rest, and stand up slowly.
Tips for managing behavioral changes
One of the major challenges of caring for a loved one with dementia can be coping with the troubling behavioral changes that often occur. As a caregiver, you can’t change the person with dementia, but you can employ strategies to modify or better accommodate any problem behaviors.
- Remember, the person with dementia is not being deliberately difficult. Your loved one’s sense of reality may be different to yours, but it’s still very real to him or her.
- Troubling behavior can often be a reaction to stress or a frustrated attempt to communicate. Try to establish why the patient is stressed or what is triggering the behavior. Is your loved one hungry, thirsty, tired, in pain, frustrated?
- Speak calmly, softly and use body language. A dementia patient will often respond to your facial expression, tone of voice, and body language far more than the words you choose. Use eye contact, a smile, or reassuring touch to help convey your message.
- The environment and atmosphere you create while caregiving can help a dementia patient feel calm and safe. Modify the environment to reduce potential stressors such as loud or unidentifiable noises. Try to remain flexible, patient, and relaxed. If you find yourself becoming anxious or losing control, take a time out to cool down.
Care for the caregiver
One of the most important ways that you as a caregiver can help the patient with LBD is to make sure you also take care of yourself (/articles/alzheimers-dementia/dementia-and- alzheimers-care.htm). If you don’t get the physical and emotional support you need, you won’t be able to provide the best level of care, and you face becoming overwhelmed. Help yourself cope by learning ways to prevent burnout, garner your own support, and improve your state of mind.
Ask for help. Reach out to other family members, friends, or volunteer organizations to help with the daily burden of caregiving. When someone offers to help, let them. Taking regular breaks does not mean you’re being neglectful or disloyal to your loved one. Caregivers who take regular time away not only provide better care, they also find more satisfaction in their caretaking roles.
Schedule daily mini-workouts. Regular exercise releases endorphins that actually keep you happy. Try ten-minute sessions sprinkled over the course of the day if you can’t block out an hour away.
Keep up your social ties. Stay connected to friends and family and welcome the support they give you. This will lighten the load of caretaking.
Talk to others in similar situations. Caring for someone with dementia can be very hard work—both physically and emotionally. Joining a support group can provide a welcome opportunity to speak frankly about your experiences with other caregivers.
Learn how to manage stress. Caregiving for a loved one with dementia can be one of the most stressful tasks you’ll undertake in life. Relaxation techniques such as deep breathing, meditation, rhythmic exercise, or yoga (/articles/stress/relaxation-techniques- for-stress-relief.htm) can help reduce stress and boost your mood and energy levels.
Related HelpGuide articles
- Dementia:(/articles/alzheimers-dementia/understanding-dementia.htm) Recognizing Dementia Symptoms and Signs and What You Can Do About It
- Parkinson’s Disease and Parkinson’s Dementia: (/articles/alzheimers-dementia/ parkinsons-disease-and-dementia.htm) Managing Symptoms, Getting Support, and Coping with Parkinson’s
- Alzheimer’s Disease: (/articles/alzheimers-dementia/alzheimers-disease.htm) Your Guide to Alzheimer’s Symptoms, Stages, Diagnosis, and Coping Tips
Authors: Lawrence Robinson and Jeanne Segal, Ph.D. Last updated: April 2017.
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