Hallucinations Lewy Body Dementia Advice Support Questions Information Treatment

A Word from Verywell

Prevalence and Type of Hallucinations in Lewy Body Dementia

People with Lewy body dementia are more likely to experience hallucinations than those with Alzheimer’s or vascular dementia, and in general, they experience them earlier in the disease process than people do with other types of dementia. For some people, these hallucinations may even be one of the first symptoms of Lewy body dementia they experience.

Up to 80% of people with Lewy body dementia experience visual hallucinations. These hallucinations are often recurrent and very detailed. Hallucinations of adults, children or animals are common.

Responding to Lewy Body Dementia Hallucinations

It can be difficult to know how best respond to hallucinations in Lewy body dementia. Because these hallucinations often occur earlier in the disease process, some people respond well to gentle reality orientation and reassurances that the hallucination isn’t real.

Although it’s not recommended to try to persuade someone with Alzheimer’s disease that what they’re seeing or hearing isn’t there, in Lewy body dementia, you may want to try that method first since there are usually fewer cognitive deficits in the person with Lewy body dementia when they’re experiencing hallucinations.

If your loved one is very upset and distraught about his hallucination, you will want to use caution and provide some extra space between you and him. In his distress, it’s possible he could mistake you for his hallucination or experience a catastrophic reaction and become combative. Reassure him and ask him if you can come sit by him before entering his space.

Treatment of Hallucinations in Lewy Body Dementia

When someone with Lewy body dementia experiences hallucinations, treatment might follow a similar protocol to treatment of hallucinations in other kinds of dementia with a very important exception: the use of antipsychotic medications.

About half of people with Lewy body dementia are extremely sensitive to typical antipsychotic medications including Haldol and can experience severe and life-threatening reactions to them. Atypical antipsychotics may be less likely to provoke a serious reaction but caution is very important when considering the use of antipsychotic medications in Lewy body dementia.

A Word from Verywell

Finally, remember that Lewy body dementia, like other dementias, is a disease that affects the whole family. No matter how much you love the person, caring for someone with Lewy body dementia can be very draining on both your physical and emotional energy.

If you’re running on empty or just at a loss for what to do, consider attending a support group or looking into other ways to provide in-home care or facility care for your loved one.

Spiritual Religious Needs Dementia Care Plan Provision

In England and Wales there are over 700,000 people living with dementia, a third of whom live in care homes. Notably two thirds of residents in care homes have dementia (Department of Health 2009).

A study by Cohen–Mansfield et al (2006) found that the well-being of people with dementia living in care homes can be enhanced by the provision of person-centred care based on knowledge of their unique life story and the creation of positive relationships.

For people with dementia, helping to maintain a link or reconnect with their religion as part of their provision of care has the potential to increase their sense of well-being.

This has been recognised in the National Service Framework for Older People (DOH 2001) and by NICE/SCIE (2006). Both documents stress the necessity of providing person-centred care that responds to the individual’s needs including those relating to spirituality and religion.

SPIRITUALITY

Spirituality is a term increasingly used in healthcare (Sloan et al 1999) although neither spirituality nor spiritual care is easy to define. McSherry (2006) notes that the word spirituality is perceived and used differently by individuals, it is complex and subjective and he suggests that creating a single definition may be difficult.

This appears to be the case as there have been numerous attempts to define it. Swinton (2010) offers an alternative to attempting a single definition of spirituality. He instead suggests that, given the complexity of the subject, spirituality should be considered from various perspectives that take into account the diversity of human experience. Among those who have attempted a definition include:

MacKinlay (2001) who writes; “spirituality includes the need for ultimate meaning in each person, whether this is fulfilled through relationship with God or some sense of another, or whether some other sense of meaning becomes the guiding force within the individual’s life. Human spirituality also involves relationship with other people. Spirituality is part of every human being, it is what differentiates humans from other animal species.”

She continues by describing two components of spirituality, the generic and the specific. The generic part is central to all humans and is expressed by the search for meaning and purpose to life, whereas the specific part refers to the way each individual engages with the spiritual in his or her life.

This can be through religion, relationships or anything that gives meaning to their life. Frankl (1964) states that this meaning must be specific and have purpose to the individual. Spirituality would appear to be something that is quite individual and may change over the life course as different things become important a person’s life.

Speck (1988), writing from a cleric’s point of view, notes that “A wider understanding of the word spiritual, as relating to the search for existential meaning within any given life experience, allows us to consider spiritual needs and issues in the absence of any clear practice of religion or faith, but this does not mean they are separated from each other.”

Although religion appears to be an expression of spirituality, spirituality is not solely defined in the context of religion. Whilst religion cannot be separated from spirituality, Stallwood and Stoll (1975) note that spiritual needs are not purely associated with religion or belief in God but also a search for meaning and purpose in life.

Importantly, Burnard (1988) warns against denying the spiritual needs of atheists and agnostics because they do not share a belief in a god or deity. It is clear that everyone has spiritual needs and this includes that those who do not have any religious affiliation.

Parsons (2001) takes the view that “On one level understanding spirituality involves finding out about the way in which someone has made sense of his or her life and identity; on the other it is about practising faith usually in a ritualised way with other people.”

Following on from the difficulties in defining spirituality, spiritual needs have also been given much deliberation by many authors. Spiritual needs are identified by Moffit (1999) as being linked to religious beliefs and the need for religious ritual and also a desire to understand one’s self. She elaborates that this includes seeking a deeper understanding of normal experiences, holding onto our sense of personal identity and contemplating the meaning of life.

Moffit’s definition, written for Methodist homes publications, implies a religious belief. Narayanasamy (2001) built on previous definitions by Higfield and Cason (1983) and identified nine spiritual needs including the expression of god or deity.

He notes that the belief in a god may be an important dimension of spirituality but acknowledge that for some individuals their Supreme Being or deity may be their work or recreational activity. He suggests a flexible approach in which god or deity is defined by the individual.

RELIGION

Religion is perhaps somewhat easier to define than spirituality. Religion is associated with a faith in a God or gods and includes prayer, ritual and a particular way of life. Hicks (1999) describes religion as “a behavioural manifestation of an individual’s spirituality and a framework from which he or she expresses that spirituality.”

The Cambridge dictionary online (2011) defines religion as ‘the belief in and worship of a god or gods, or any such system of belief and worship’. MacKinlay (2001) notes that everyone we meet (within a particular society) knows what religion is, although the term does not mean the same to each person.

LITERATURE REVIEW

Despite a series of studies ( see, for example, King et al 1995, Ross 1997 and Isaia et al 1999) showing that older people are reported to be a highly spiritual and religious group, the spiritual dimension, as an essential component of holistic care, is frequently overlooked.

Notably, there has been little research into the area of religion and dementia. Personal accounts, however, of individuals with dementia such as Christine Bryden (2005) and Robert Davis (1989) shed light on the importance of spirituality and religion for them on their journey into dementia.

Jolley et al (2010) found that in the early stages of dementia there was no obvious reduction of spiritual awareness amongst memory clinic patients when they were compared with those caring for them and the practices associated with their beliefs were very important to them.

In addition, Katsuno (2003) found that religiosity had a positive association with perceived quality of life for people with early stage dementia. The participants used religion as a means of coping and to help them find meaning and purpose in their lives. Similarly, Snyder (2003) and Stuckey et al (2002) also found that religion can help people with early dementia cope with the impact of the disease on their lives.

Trevitt and MacKinlay (2004) and MacKinlay (2009) explored issues of religiosity with care home residents with dementia and found that religious activities were particularly important to them. Also, studying care home residents, Walters (2007) found that a multisensory approach to ministry visits to the care home had a positive effect on the observed experience of people with moderate dementia.

Several other interventions have been documented where people with more advanced dementia have participated in acts of worship (e.g. Goodall 1999, Kirkland & McIlveen 1999, Shamy 2003), which appeared to have been beneficial to them although none of these are evaluated from the direct perspective of the participants with dementia. Higgins et al (2004) report on a small pilot study interviewing people with dementia who had taken part in an act of worship and found this to be a positive experience.

Recently the Alzheimer’s Society (2010) collected the views of people with dementia, including some with more advanced dementia living in care homes, and found that the ability to practice faith or religion was one of the key quality of life indicators for them. Clearly there is a lack of knowledge on how religion impacts on the lives of those with more advanced dementia living in care homes.

In particular the perspective of these individuals has not been sought regarding this aspect of their lives. While observational methods and anecdotal reports help to provide some understanding it is preferable to obtain their personal views.

This will help those working in care homes and from church groups to support people with more advanced dementia living in care homes to remain connected to their religion. Ethical approval has recently been obtained to carry out a study in interviewing people with moderate to advanced dementia living in care homes and this will endeavour to understand the role of Christian religion for them.

DISCUSSION

In addition to the benefits of religion described above there are many studies highlighting the clear immediate benefits of religion on health outcomes, see Koenig (2001), however we can only measure the benefits of religion here on earth. To those that have a religious faith and believe in an afterlife united with God, the potential eternal benefits outshine any that are gained here on earth.

For this reason, it is particularly important that people with dementia are supported to remain connected to their faith group and in this way the future benefits for them may also be enhanced. Bringing religion into the workplace, particularly in healthcare, is not encouraged, and this was highlighted by the case of the nurse, Caroline Petrie, who was suspended for offering to pray for a patient (BBC 2009).

This may well have discouraged other nurses from offering prayer to those who indicate they would appreciate this support, for fear of a similar outcome. While there is concern regarding the possibility of proselytising, particularly in vulnerable patients such as those with dementia, healthcare professionals are guided by their own codes of conduct such as the NMC (2008) and are required to act in a professional manner.

And yet, the belief of Christianity is that spiritual care can help here and now and also make a true difference in eternity. We must not lightly ignore the spiritual needs of those who suffer dementia.(CMQ August 2011) (that article is attached below for info )

People with end stage dementia who lack capacity to decide on aspects of their care, such as taking part in a religious service or receiving Holy Communion, could have this decision made as part of a best interest process under the framework of the MCA (see CMQ August 2011).

However, for those who are still able to express themselves verbally and particularly those who have a lifelong faith, we could ask them directly what they would like to help them remain connected to their faith. This seems a rather obvious course of action. Nevertheless, I suggest that in order to provide holistic person centred care that meets their needs, including those relating to religion and spirituality, this would be a good place to start.

Care Home & Care Staff Dignity Respect Understanding – End of Life Care

Multiple Dementia Types: Diseases Descriptions Symptoms

Dementia is a broad term used to describe a group of symptoms that occur when brain cells stop working properly. It is certain diseases that damage the brain and cause dementia.

This post will explain the different dementia types, their symptoms, progression and where to go for further advice and support.

Alzheimer’s disease

Overview

Alzheimer’s disease is the most common cause of dementia, affecting around 500,000 people in the UK.

It is a progressive disease that develops slowly over time and in early stages, it can be difficult to distinguish Alzheimer’s from mild forgetfulness, which can be seen in normal ageing.

People with Alzheimer’s have a shortage of some important chemicals in their brain. These chemical messengers help to transmit signals around the brain and when there is a shortage of them, the signals are not transmitted as effectively.

Over time, more parts of the brain become more damaged and the symptoms become more severe.

The symptoms of Alzheimer’s disease can be broken down into earlier symptoms and later symptoms.

Symptoms

Typical early symptoms of Alzheimer’s may include:

Forgetting recent events, names and faces
Becoming increasingly repetitive, e.g. repeating questions after a very short interval
Misplacing items or putting them in odd places
Uncertainty about the date or time of day
Unsure of their whereabouts or getting lost, particularly in unusual surroundings
Becoming low in mood, anxious or irritable, losing self-confidence or showing less interest in what’s happening

The rate at which Alzheimer’s progresses is different with every person. As it progresses, more symptoms may occur or worsen, such as:

Degraded ability to remember, think and make decisions
Communication and language become more difficult
Difficulty recognising familiar faces or household objects
Difficultly in day-to-day tasks, for example eating, dressing, using a TV remote control, phone or kitchen appliance
Some people become sad, depressed or frustrated about the challenges they face. Anxieties are also common and people may seek extra reassurance or become fearful or suspicious
People may experience hallucinations, where they may see things or people that aren’t there
People may become increasingly unsteady on their feet and are at greater risk of falling

Current treatments do not unfortunately stop the disease, but medication is available to those with Alzheimer’s that helps to delay the decline of memory loss, thinking, language and thought process.

Different options to ease the symptoms can be discussed with your GP.

Vascular dementia

Overview

Vascular dementia is the most widely recognised as the second most common cause of dementia and can occur when blood flow to the brain becomes reduced.

In some cases, people may have both vascular dementia and Alzheimer’s – this is known as mixed dementia.

Vascular dementia is sometimes given more specific names based on the changes in the brain that cause it. The most common of these are:

Stroke-related dementia – vascular dementia that develops after a stroke (called post-stroke dementia) or after a series of small strokes (called multi-infarct dementia).
Subcortical vascular dementia – vascular dementia that is caused by changes to very small blood vessels in the brain (often referred to as small vessel disease).

The speed of progression for vascular dementia varies from person to person and there may be a sudden change in progression after events such as a stroke.

Symptoms

Vascular dementia can have symptoms similar to Alzheimer’s and other forms of dementia.

Symptoms of vascular dementia include memory loss, disorientation and problems with communication. In addition to this, there may also be more specific symptoms and these may differ depending on the area of the brain that is affected.

These may include:

Thinking skills – taking more time to process information and having problems with attention, planning and reasoning.
Personality changes – these may include depression and losing interest in things. People may also become more emotional.
Movement problems – difficulty walking or changes in the way a person walks.
Bladder problems – frequent urge to urinate or other bladder symptoms. This can be common in older age, but can be a feature of vascular dementia when seen with other symptoms.

The symptoms of vascular dementia get worse over time. In the later stages, the symptoms become more widespread and people need help eating, dressing and toileting.

Similar to Alzheimer’s, there is currently no specific treatment available, however you can go to your doctor to discuss medication and other methods to reduce the rate of the symptoms.

Dementia with Lewy bodies

Overview

Dementia with Lewy bodies (DLB) is thought to be the actual second most common dementia, due to high instances of wrongly diagnosing the condition as something else, such as Parkinson’s disease.

It is caused by small round clumps of a protein that build up inside nerve cells in the brain. The proteins formed are called Lewy bodies and they damage the way nerve cells work.

In DLB, the nerve cells that are affected by Lewy bodies are in areas of the brain that control thinking, memory and movement.

People with DLB can also show some changes in the brain that are typical of Alzheimer’s. This sometimes makes it hard to tell the difference between the two diseases.

Symptoms

In DLB, there are some more specific symptoms associated with the disease.

These symptoms include:

Unpredictable changes in alertness, attention and confusion
Parkinson’s disease-type symptoms such as slowed movements, muscle stiffness and tremors
Visual hallucinations – seeing things that are not really there
Sleep disturbances – acting out dreams or shouting out while sleeping, which can disrupt sleep and potentially cause injury
Fainting, unsteadiness and falls

DLB is a progressive condition, which means symptoms get worse over time. As the disease progresses, people will need increasing help with eating, moving, dressing and toileting.

DLB can progress slowly over several years but the speed of progression and type of symptoms can vary from person to person.

Frontotemporal dementia

Overview

Frontotemporal dementia (FTD) is caused by damage to cells in areas of the brain called the frontal and temporal lobes.

The frontal lobes regulate our personality, emotions and behaviour, as well as reasoning, planning and decision-making.

The temporal lobes are involved in the understanding and production of language. This can cause different types of FTD:

Behavioural variant frontotemporal dementia – parts of the frontal lobe that regulate social behaviour may be most affected.
Semantic dementia – parts of the temporal lobe that support understanding of language and factual knowledge are most affected.
Progressive non-fluent aphasia – parts of the frontal and temporal lobes that control speech are most affected.

Symptoms

Early symptoms of FTD vary from person to person and depend on which area of the brain is affected. Symptoms may include:

Personality changes – may include change in how people express their feelings towards others or a lack of understanding of other people’s feelings
Lack of personal awareness – may fail to maintain their normal level of personal hygiene and grooming
Lack of social awareness – may include making inappropriate jokes, or showing a lack of tact
Changes in food preference, over-eating or over-drinking
Behaviour changes – humour or sexual behaviour may change
Difficulty with simple plans and decisions
Communication difficulties
Difficulty recognising people or knowing what objects are for
Day-to-day memory may be relatively unaffected in the early stages, but problems with attention and concentration could give the impression of memory problems
Movement problems – this may include stiff or twitching muscles, muscle weakness and difficulty swallowing

Symptoms get worse over time, gradually leading to more widespread problems with day-to-day function. Some people may develop motor problems similar to those seen in Parkinson’s.

Over time people with FTD can find it harder to swallow, eat, communicate and move. The speed of change can vary widely but as time progresses they will require more support to look after themselves.

Dementia advice and support

Whichever type of dementia you may be dealing with, there is always help and support available.

Accessing services and support can make a real and positive difference to someone with dementia and their family.

Some services are provided by local authorities and others can be arranged through GPs. The type of services available may vary depending on where you live, but can include home, day and respite care.

There’s also a range of technology available that can be invaluable to those living with dementia.

In addition to this, we’ve listed some of our favourite dementia charities that can help you out, regardless of the dementia type.

We hope this information has been helpful for understanding the different dementia types and always remember that there is help and support on hand.

The Rollercoaster: Lewy Body Dementia Eating Patterns & Problems

Lewy Body Rollercoaster

Along about this time of year we all think a lot about eating—it’s become a Thanksgiving tradition to have a big meal and eat too much. But our loved one with almost any kind of dementia and certainly with LBD often have problems eating even a small meal. There are many reasons for this:

Everything is slower. It takes a lot more time for a PwLBD to choose what on their plate to eat, put it in their spoon and move it to their mouth. Lewy bodies makes everything smaller too—steps, movements, voice, and the bites a person takes. This makes eating an even slower process. A person with LBD may have just started eating by the time everyone else is finished and then they are “done” too.

When muscles get weaker, eating becomes hard work. Think about what it would be like to lift some stones that are just a little too heavy for you. The first stones would be fairly easy. You’d just need to exert a little extra effort. Of course, that is tiring. And as you get more tired, the task gets harder. And finally, it just wasn’t worth the effort. That’s the way it is for someone with weak facial muscles.

Lewy bodies take away the ability to smell, often well before dementia shows up. (In fact, one symptom of approaching dementia is the “return” of smell in the form of olfactory hallucinations, usually bad smells.) Eating becomes less fun because this loss of smell affects taste and things that used to be favorite treats may not be anymore.

Swallowing can be affected so that it becomes very easy to choke and aspirate—draw food into the lungs. While your loved one may forget a lot they don’t forget negative things as easily. Thus, the fear of choking remains. They remember that when they ate or drank, they choked and became frightened.

As thinking abilities fail, immediate gratification remains but the ability to see cause and effect fails. Thus, with immediate rewards replaced by hard work and fear, your loved one sees little reason to eat.

Then add the poor depth perception and other visual problems that PwLBD are even more prone to have than PwAD. If you can’t see what you are supposed to be eating, how can you be expected to eat it!

But there’s help. In the Alzheimer’s Reading Room, Bob DeMarko suggests that it is as easy as 1,2,3: http://www.alzheimersreadingroom.com/

1. Use RED plates. This adds some contrast and makes the food easier to see, which can be quite important for anyone with the perception and visual problems common with LBD. People with dementia in general eat 25% more from red plates! (reference)

2. Be a guide. Your loved one will often mirror your behavior. Use this to help them re-learn to eat:

Set a place for your loved one and one for yourself right across from them, in their direct line of sight. Put food on both plates.
Sit at your place, look directly at your loved one and SMILE. Don’t say anything.
Still without talking, take a bite. Chew. Smile.
Take another bite. Chew. Smile.
Take your time. Chew slowly. Be patient.

3. DO NOT TALK.

Just make eye contact, eat and smile.
Cajoling does not work with a person who cannot relate to reasoning.
Talking about other things is distracting.
Just make eye contact, eat and smile.
Be patient. Be VERY patient and wait for them to follow your lead.
This process may take several sessions.

A good guide demonstrates how to eat each and every time (like it is the first time, every time). The good guide does this with a smile on their face and no words in their mouth.

Your loved one may find eating difficult or painful. If this is the case, you need to contact a doctor that specializes with such problems regularly. Speech therapists can also help.

Happy Thanksgiving, everyone!

For more information about dealing with LBD, read The Caregiver’s Guide to Lewy Body Dementia. Order it from Amazon via the LBD Book Corner on LBDtools.com and help us spread the word.

Lewy Body Dementia Eating Difficulties & Eating Disorder

Food, eating, and mealtimes are important parts of life. Food gives us life-sustaining nourishment and contributes to good health, eating satisfies our hunger and stimulates our senses, and mealtimes can be important sharing and social times with family and friends. Many of our favourite experiences and memories—preparing and sharing holiday dinners with family members, celebrating birthdays and other life events with special meals, and getting together with friends for lunch or dinner, for example—involve eating and food.

When a person has Alzheimer’s disease or another type of dementia, though, the ability to prepare meals and eat independently may diminish, and mealtimes can become challenging, frustrating encounters for both the individual and the caregiver. Often, too, the person with dementia may be experiencing changes, such as decreased appetite, that are part of normal aging. Combined, these changes can lead to malnourishment and dehydration, increasing the risk of infections, poor wound healing, abnormally low blood pressure, and other problems.

Good nutrition cannot always prevent weight loss in people with Alzheimer’s disease, nor will it slow the progression of dementia. However, continuing to eat a healthful diet can promote overall health, improve the person’s ability to cope, help prevent some physical and behavioral problems, and most of all, contribute to higher quality of life. Family members and paid caregivers of people with AD play an important role in both encouraging eating and identifying eating-related problems that could be resolved. This article discusses some of the eating-related challenges associated with the middle stages of AD and related dementias, and suggests mealtime strategies and tips for at-home caregivers.

Understand the Challenges

As people age, their interest in eating and mealtime enjoyment can change. Some older adults find that their senses of taste or smell decrease, making food seem less appealing than it did in the past. Others eat less because of difficulties chewing or digesting as they get older. Medicines can also affect appetite, and constipation may increase with age or medication use. When a person has AD or other dementia, these problems can become more pronounced, and mood, behavioral, and physical functioning problems may affect eating as the disease progresses.

“When the brain is involved, as in dementia, any part of seeing, thinking, or moving can be affected—from problems seeing the food clearly to difficulty planning the movement of scooping with a utensil and bringing food to one’s mouth. These problems can take the pleasure out of eating,” explains Sue Coppola, MS, OTR/L, BCG, clinical associate professor of occupational therapy and core interdisciplinary team member with the Program on Aging at the University of North Carolina at Chapel Hill.

Coppola and other dementia-care experts stress the value of caregivers not only understanding the degenerative nature of dementia but also recognizing that dementia varies from person to person. In the early stages of AD, challenges may be limited to the person skipping meals or forgetting to eat or forgetting that he or she has eaten. However, other eating-related difficulties and patterns—from not sitting down long enough for meals to spitting out food or refusing to eat—can arise in the middle and late stages.

“All of a sudden, the person might not eat, but it’s not because he or she is being difficult on purpose,” says occupational therapist Carol Bowlby Sifton, BScOT, founding editor of Alzheimer’s Care Quarterly and a care and staff training consultant at King’s Regional Rehabilitation Centre in Nova Scotia. “Caregivers need to understand that it’s the same person as before, but because of the complexity of the process of eating, the person may be confused and embarrassed, and thus refuse to participate. It might be easier for the person to withdraw from the activity than to make mistakes.”

For people with AD and related dementias, eating-related challenges can result from:

cognitive issues, such as inability to express one’s needs or desires, initiate or persist with eating, use utensils, remember to eat, and distinguish the food from the plate (visual-perceptual challenges)
behavioral and psychosocial issues, such as depression, distress, excessive pacing that may increase calorie use, and having difficulty sitting down for meals
physical problems, such as inability to hold and use utensils properly or maintain appropriate posture; fatigue; tremors; vision impairment; decreased depth perception; mouth sores; gum disease; dry mouth; poorly fitting or missing dentures; chewing or swallowing problems (dysphagia), and inability to move food inside the mouth
environmental issues, such as extraneous noise or confusion, too much visual stimulation, poor lighting, glare, unpleasant odors, and uncomfortable room temperature
food and menu-related concerns, such as having too many food choices at one time; difficulty eating the foods that are offered; unappealing food presentation, smells, flavors, or textures; and foods that are different from the individual’s personal, cultural, or religious food preferences
chronic diseases that decrease appetite, such as diabetes, intestinal, and cardiac problems
decreased appetite from use of certain medications or food-medication interactions
caregiver burden due to stress or lack of time, causing the caregiver to feel impatient or find it difficult to ensure that the person eats enough.

Tips for Making Mealtimes Easier and More Enjoyable

View mealtimes as opportunities for social interaction and success for yourself and the person with dementia. A warm and happy tone of voice can set the mood.
Try to make mealtimes calm, comfortable, and reassuring. Be patient, avoid rushing through meals, and give the person enough time to finish the meal.
Be sensitive to possible frustration, confusion, and anxiety during mealtimes and look for ways to reduce these feelings.
Maintain familiar routines and rituals, but be flexible and adapt to the person’s changing needs.
Minimize distractions during mealtimes. For example, turn off the television or radio, and eliminate unneeded items from the table.
Offer appealing foods that have familiar flavors, varied textures, and different colors, and give the person opportunities to make choices.
Make nutritious finger foods and nutrient-rich homemade shakes or shake products (unless the person is lactose intolerant) available throughout the day.
In the earlier stages of dementia, be aware of the possibility of overeating. If this occurs, provide a balanced diet, limit snacks, and offer engaging activities as alternatives to eating.
If the person is on a reduced-sodium or sugar-restricted diet because of hypertension, diabetes, or another medical condition, keep foods with high salt or sugar content out of reach or in a locked cabinet.
Help the person drink plenty of fluids throughout the day—dehydration can lead to problems such as increased constipation, confusion, and dizziness.
Use adaptive eating tools as needed. Talk with an occupational therapist about which tools might be helpful, as well as other strategies to make eating and mealtime routines more successful.
Identify and work to resolve issues such as depression, forgetting to wear glasses or hearing aids, wearing poorly fitting dentures, and use of appetite-suppressing medications, which may impair the person’s ability or desire to eat.
Maintain routine dental checkups and daily oral health care.
Be alert to and address potential safety issues, such as the person forgetting to turn off the stove after cooking and the increased risk of choking because of chewing and swallowing problems that may arise as the disease progresses.

And finally: Remember to take care of yourself to reduce the stress of caring for others. Whenever you have questions or worries, get help from your health care provider, friends, and family.

Source: National Institute on Aging, Alzheimer’s Disease Education and Referral Center http://www.nia.nih.gov/alzheimers/features/encouraging-eating-advice-hom…

Lewy Body Dementia Prepare For Rapid Decline In Condition.

Lewy Body Journal

Hi all.

I was so pleased to find this site and I would like to share our experience with you. On the 21st of April In 2010 I decided to give my husband a surprise 70th birthday party and this was the first time I had noticed anything odd about his actions.

(Although on reflection I had noticed he was a bit stooped and walked with a slight shuffle and was, I thought, a little bit depressed.)

My friend and I came up with the idea that she was going to treat him to an Abba concert at the venue we were having the party.

My hubby loves Abba and was not suspicious, although he said he hadn’t seen it advertised. We were to be out for dinner at seven and were being picked up at six thirty.

I went to the venue in the afternoon to put some final touches to tables and at about three thirty I received a call from him in an agitated state to see where I was.

This was not unusual as he is a quite possessive man and liked to know where I was most of the time anyway and I took no notice.

I arrived home by four and he was in a state, wanting to get ready or we would be late. (He always has to be anywhere a half hour early.)

He said he would get dressed and I persuaded him to wait a while as he was bound to pick up his little dog or spill something on his clothes. However he couldn’t wait and I came in from outside to find him in the bedroom dressed except for his belt.

He was holding it and looking at it as though he didn’t know what to do with it. I might say this really scared me as I thought he may have had a mini-stroke or something.

I went to him and took it and said can’t you find the right side and he said no and I showed him and he asked me to put it on.

This put a bit of a damper on the evening and I dare say the shock of seventy people screaming HAPPY BIRTHDAY may not have helped either.

My husband is a handsome man and was an electrician by trade and very clever.

I could not help but notice that night he looked older than his seventy years and sometimes seemed a bit vague and insecure and kept coming up to me as though he needed me near him.

After all of our family and guests had left to go home over the next two days, I really kept a closer eye on him. I noticed a slight tremor in his hands. I asked him about this and he said he had noticed it too. I also asked him if he felt depressed and he said yes.

My husband had a fall from a ladder about five years ago and shattered his heel.

At the time he used to breed and show budgerigars very successfully and loved his birds. He had to sell them as I worked and couldn’t look after our large lawns, garden and the birds as well.

I loved them too and we were both extremely sad to see them go but he had to have lots of operations on his foot.) My hubby loved fishing and golf and had to give them all up as he lost confidence and I put his depression down to losing all of his pastimes.

I know when I gave up work I found myself depressed but I found things to occupy my time whereas he was happy to sit around.

Getting back to his depression, we went to his GP who prescribed antidepressants.

These in fact made him quite ill. I asked his GP if it could be Parkinson’s Disease as I had looked it up and read a lot and he quickly told me it wasn’t, it was just depression and he needed to get out and do things.

I partially agreed with the making himself busy bit but my gut feeling was telling me there was something else wrong. We had been married for almost fifty years and I know him very well.

For twelve months we kept on but the GP was relentless that it was depression.

We were visiting him at least twice a week and my husband wouldn’t change. Suddenly one day the GP out of the blue said I think you have Parkinson’s.

I was gob smacked and never felt more like slapping someone than I did then.

It took nine months for us to be able to see a neurologist and he confirmed Parkinson’s Disease.

He said that some people also developed Dementia and I knew deep in my heart that my man was going to be one of them.

It wasn’t until April 2013 that we received the news that he had Lewy Bodies and were told to – (prepare for a rapid decline in his condition).

I was shattered as the father of a friend of mine had passed away in June 2012 with this dreadful disease.

He too was diagnosed with Parkinson’s five years earlier and then Lewy Bodies three years later.

It is true the decline has been rapid with hallucinations and anxiety among the many changes.

Obsession with our little dog who he can’t bear to be away from.

I have had to give up my part time job (which happened to be at a funeral home) mainly because he didn’t like me out of his sight, and also I volunteered at the local hospital. I loved both of these jobs and miss them, but I felt his self security was more important.

He is obsessed with money and is afraid of not having enough for when we are older. He doesn’t understand his prognosis is not good.

He is always pulling cotton out of his food and sees it coming out of the heater.

We have ants and spiders crawling all over the floor and people in the room with us but he doesn’t talk to them. He can not count money, use the remote controls or the telephone.

He was once a beautiful hand writer but alas that has gone — now his writing is legible but just. I, like many others who have written in, believe his symptoms started as far back as twenty years ago — that was when the nightmares were happening.

Thank you for giving me the chance to talk about our life as it is, as my family are finding it hard to deal with and tell me “I am exaggerating, he is not as bad as I’m making out.”

I understand they are probably in denial as it is all so sad.

KIND REGARDS AND THOUGHTS OF EVERYONE WHO HAS WRITTEN IN, JVS

Letter of Susan Schneider Williams Widow of Robin Williams

I am writing to share a story with you, specifically for you. My hope is that it will help you understand your patients along with their spouses and caregivers a little more. And as for the research you do, perhaps this will add a few more faces behind the why you do what you do. I am sure there are already so many.

This is a personal story, sadly tragic and heartbreaking, but by sharing this information with you I know that you can help make a difference in the lives of others.

As you may know, my husband Robin Williams had the little-known but deadly Lewy body disease (LBD). He died from suicide in 2014 at the end of an intense, confusing, and relatively swift persecution at the hand of this disease’s symptoms and pathology. He was not alone in his traumatic experience with this neurologic disease. As you may know, almost 1.5 million nationwide are suffering similarly right now.

Although not alone, his case was extreme. Not until the coroner’s report, 3 months after his death, would I learn that it was diffuse LBD that took him. All 4 of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen. He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.

Robin is and will always be a larger-than-life spirit who was inside the body of a normal man with a human brain. He just happened to be that 1 in 6 who is affected by brain disease.

Not only did I lose my husband to LBD, I lost my best friend. Robin and I had in each other a safe harbor of unconditional love that we had both always longed for. For 7 years together, we got to tell each other our greatest hopes and fears without any judgment, just safety. As we said often to one another, we were each other’s anchor and mojo: that magical elixir of feeling grounded and inspired at the same time by each other’s presence.

One of my favorite bedrock things we would do together was review how our days went. Often, this was more than just at the end of the day. It did not matter if we were both working at home, traveling together, or if he was on the road. We would discuss our joys and triumphs, our fears and insecurities, and our concerns. Any obstacles life threw at us individually or as a couple were somehow surmountable because we had each other.

When LBD began sending a firestorm of symptoms our way, this foundation of friendship and love was our armor.

The colors were changing and the air was crisp; it was already late October of 2013 and our second wedding anniversary. Robin had been under his doctors’ care. He had been struggling with symptoms that seemed unrelated: constipation, urinary difficulty, heartburn, sleeplessness and insomnia, and a poor sense of smell—and lots of stress. He also had a slight tremor in his left hand that would come and go. For the time being, that was attributed to a previous shoulder injury.

On this particular weekend, he started having gut discomfort. Having been by my husband’s side for many years already, I knew his normal reactions when it came to fear and anxiety. What would follow was markedly out of character for him. His fear and anxiety skyrocketed to a point that was alarming. I wondered privately, Is my husband a hypochondriac? Not until after Robin left us would I discover that a sudden and prolonged spike in fear and anxiety can be an early indication of LBD.

He was tested for diverticulitis and the results were negative. Like the rest of the symptoms that followed, they seemed to come and go at random times. Some symptoms were more prevalent than others, but these increased in frequency and severity over the next 10 months.

By wintertime, problems with paranoia, delusions and looping, insomnia, memory, and high cortisol levels—just to name a few—were settling in hard. Psychotherapy and other medical help was becoming a constant in trying to manage and solve these seemingly disparate conditions.

I was getting accustomed to the two of us spending more time in reviewing our days. The subjects though were starting to fall predominantly in the category of fear and anxiety. These concerns that used to have a normal range of tenor were beginning to lodge at a high frequency for him. Once the coroner’s report was reviewed, a doctor was able to point out to me that there was a high concentration of Lewy bodies within the amygdala. This likely caused the acute paranoia and out-of-character emotional responses he was having. How I wish he could have known why he was struggling, that it was not a weakness in his heart, spirit, or character.

In early April, Robin had a panic attack. He was in Vancouver, filming Night at the Museum 3. His doctor recommended an antipsychotic medication to help with the anxiety. It seemed to make things better in some ways, but far worse in others. Quickly we searched for something else. Not until after he left us would I discover that antipsychotic medications often make things worse for people with LBD. Also, Robin had a high sensitivity to medications and sometimes his reactions were unpredictable. This is apparently a common theme in people with LBD.

During the filming of the movie, Robin was having trouble remembering even one line for his scenes, while just 3 years prior he had played in a full 5-month season of the Broadway production Bengal Tiger at the Baghdad Zoo, often doing two shows a day with hundreds of lines—and not one mistake. This loss of memory and inability to control his anxiety was devastating to him.

While I was on a photo shoot at Phoenix Lake, capturing scenes to paint, he called several times. He was very concerned with insecurities he was having about himself and interactions with others. We went over every detail. The fears were unfounded and I could not convince him otherwise. I was powerless in helping him see his own brilliance.

For the first time, my own reasoning had no effect in helping my husband find the light through the tunnels of his fear. I felt his disbelief in the truths I was saying. My heart and my hope were shattered temporarily. We had reached a place we had never been before. My husband was trapped in the twisted architecture of his neurons and no matter what I did I could not pull him out.

In early May, the movie wrapped and he came home from Vancouver—like a 747 airplane coming in with no landing gear. I have since learned that people with LBD who are highly intelligent may appear to be okay for longer initially, but then, it is as though the dam suddenly breaks and they cannot hold it back anymore. In Robin’s case, on top of being a genius, he was a Julliard-trained actor. I will never know the true depth of his suffering, nor just how hard he was fighting. But from where I stood, I saw the bravest man in the world playing the hardest role of his life.

Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it—no amount of intelligence or love could hold it back.

Powerless and frozen, I stood in the darkness of not knowing what was happening to my husband. Was it a single source, a single terrorist, or was this a combo pack of disease raining down on him?

He kept saying, “I just want to reboot my brain.” Doctor appointments, testing, and psychiatry kept us in perpetual motion. Countless blood tests, urine tests, plus rechecks of cortisol levels and lymph nodes. A brain scan was done, looking for a possible tumor on his pituitary gland, and his cardiologist rechecked his heart. Everything came back negative, except for high cortisol levels. We wanted to be happy about all the negative test results, but Robin and I both had a deep sense that something was terribly wrong.

On May 28th, he was diagnosed with Parkinson disease (PD).

We had an answer. My heart swelled with hope. But somehow I knew Robin was not buying it.

When we were in the neurologist’s office learning exactly what this meant, Robin had a chance to ask some burning questions. He asked, “Do I have Alzheimer’s? Dementia? Am I schizophrenic?” The answers were the best we could have gotten: No, no, and no. There were no indications of these other diseases. It is apparent to me now that he was most likely keeping the depth of his symptoms to himself.

Robin continued doing all the right things—therapy, physical therapy, bike riding, and working out with his trainer. He used all the skills he picked up and had fine-tuned from the Dan Anderson retreat in Minnesota, like deeper 12-step work, meditation, and yoga. We went to see a specialist at Stanford University who taught him self-hypnosis techniques to quell the irrational fears and anxiety. Nothing seemed to alleviate his symptoms for long.

Throughout all of this, Robin was clean and sober, and somehow, we sprinkled those summer months with happiness, joy, and the simple things we loved: meals and birthday celebrations with family and friends, meditating together, massages, and movies, but mostly just holding each other’s hand.

Robin was growing weary. The parkinsonian mask was ever present and his voice was weakened. His left hand tremor was continuous now and he had a slow, shuffling gait. He hated that he could not find the words he wanted in conversations. He would thrash at night and still had terrible insomnia. At times, he would find himself stuck in a frozen stance, unable to move, and frustrated when he came out of it. He was beginning to have trouble with visual and spatial abilities in the way of judging distance and depth. His loss of basic reasoning just added to his growing confusion.

It felt like he was drowning in his symptoms, and I was drowning along with him. Typically the plethora of LBD symptoms appear and disappear at random times—even throughout the course of a day. I experienced my brilliant husband being lucid with clear reasoning 1 minute and then, 5 minutes later, blank, lost in confusion.

Prior history can also complicate a diagnosis. In Robin’s case, he had a history of depression that had not been active for 6 years. So when he showed signs of depression just months before he left, it was interpreted as a satellite issue, maybe connected to PD.

Throughout the course of Robin’s battle, he had experienced nearly all of the 40-plus symptoms of LBD, except for one. He never said he had hallucinations.

A year after he left, in speaking with one of the doctors who reviewed his records, it became evident that most likely he did have hallucinations, but was keeping that to himself.

It was nearing the end of July and we were told Robin would need to have inpatient neurocognitive testing done in order to evaluate the mood disorder aspect of his condition. In the meantime, his medication was switched from Mirapex to Sinemet in an effort to reduce symptoms. We were assured Robin would be feeling better soon, and that his PD was early and mild. We felt hopeful again. What we did not know was that when these diseases “start” (are diagnosed) they have actually been going on for a long time.

By now, our combined sleep deficit was becoming a danger to both of us. We were instructed to sleep apart until we could catch up on our sleep. The goal was to have him begin inpatient testing free of the sleep-deprived state he was in.

As the second weekend in August approached, it seemed his delusional looping was calming down. Maybe the switch in medications was working. We did all the things we love on Saturday day and into the evening, it was perfect—like one long date. By the end of Sunday, I was feeling that he was getting better.

When we retired for sleep, in our customary way, my husband said to me, “Goodnight, my love,” and waited for my familiar reply: “Goodnight, my love.”

His words still echo through my heart today.

Monday, August 11, Robin was gone.

After Robin left, time has never functioned the same for me. My search for meaning has replicated like an inescapable spring throughout nearly every aspect of my world, including the most mundane.

Robin and I had begun our unplanned research on the brain through the door of blind experience. During the final months we shared together, our sights were locked fast on identifying and vanquishing the terrorist within his brain. Since then, I have continued our research but on the other side of that experience, in the realm of the science behind it.

Three months after Robin’s death, the autopsy report was finally ready for review. When the forensic pathologist and coroner’s deputy asked if I was surprised by the diffuse LBD pathology, I said, “Absolutely not,” even though I had no idea what it meant at the time. The mere fact that something had invaded nearly every region of my husband’s brain made perfect sense to me.

In the year that followed, I set out to expand my view and understanding of LBD. I met with medical professionals who had reviewed Robin’s last 2 years of medical records, the coroner’s report, and brain scans. Their reactions were all the same: that Robin’s was one of the worst LBD pathologies they had seen and that there was nothing else anyone could have done. Our entire medical team was on the right track and we would have gotten there eventually. In fact, we were probably close.

But would having a diagnosis while he was alive really have made a difference when there is no cure? We will never know the answer to this. I am not convinced that the knowledge would have done much more than prolong Robin’s agony while he would surely become one of the most famous test subjects of new medicines and ongoing medical trials. Even if we experienced some level of comfort in knowing the name, and fleeting hope from temporary comfort with medications, the terrorist was still going to kill him. There is no cure and Robin’s steep and rapid decline was assured.

The massive proliferation of Lewy bodies throughout his brain had done so much damage to neurons and neurotransmitters that in effect, you could say he had chemical warfare in his brain.

One professional stated, “It was as if he had cancer throughout every organ of his body.” The key problem seemed to be that no one could correctly interpret Robin’s symptoms in time.

I was driven to learn everything I could about this disease that I finally had the name of. Some of what I learned surprised me.

One neuropathologist described LBD and PD as being at opposite ends of a disease spectrum. That spectrum is based on something they share in common: the presence of Lewy bodies—the unnatural clumping of the normal protein, α-synuclein, within brain neurons. I was also surprised to learn that a person is diagnosed with LBD vs PD depending on which symptoms present first.

After months and months, I was finally able to be specific about Robin’s disease. Clinically he had PD, but pathologically he had diffuse LBD. The predominant symptoms Robin had were not physical—the pathology more than backed that up. However you look at it—the presence of Lewy bodies took his life.

The journey Robin and I were on together has led me to knowing the American Academy of Neurology and other groups and doctors. It has led me to discover the American Brain Foundation, where I now serve on the Board of Directors.

This is where you come into the story.

Hopefully from this sharing of our experience you will be inspired to turn Robin’s suffering into something meaningful through your work and wisdom. It is my belief that when healing comes out of Robin’s experience, he will not have battled and died in vain. You are uniquely positioned to help with this.

I know you have accomplished much already in the areas of research and discovery toward cures in brain disease. And I am sure at times the progress has felt painfully slow. Do not give up. Trust that a cascade of cures and discovery is imminent in all areas of brain disease and you will be a part of making that happen.

If only Robin could have met you. He would have loved you—not just because he was a genius and enjoyed science and discovery, but because he would have found a lot of material within your work to use in entertaining his audiences, including the troops. In fact, the most repeat character role he played throughout his career was a doctor, albeit different forms of practice.

You and your work have ignited a spark within the region of my brain where curiosity and interest lie and within my heart where hope lives. I want to follow you. Not like a crazed fan, but like someone who knows you just might be the one who discovers the cure for LBD and other brain diseases.

Thank you for what you have done, and for what you are about to do.

DISCLOSURE

Susan Schneider Williams serves on the Board of Directors for the American Brain Foundation (americanbrainfoundation.org) but reports no disclosures relevant to the manuscript. Go to Neurology.org for full disclosures.

Footnotes

Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the author, if any, are provided at the end of the editorial.

Lewy Body Dementia Robin Williams Agonising Final 24 Hours Revealed

Robin Williams spent his last days in a paranoid frenzy, aware that ‘something else was wrong with him’, a British television show has previously claimed.

In a ‘peculiar’ incident just one day before his death, the Oscar-winning actor, who had been diagnosed with Parkinson’s, stuffed his collection of watches into a sock and took it to a friend for safekeeping.

The 63-year-old, who had also been prone to episodes of insomnia and anxiety prior to his death, also spent his final 24 hours frantically looking up drugs online, convinced he had another illness.

The post-mortem examination later revealed that Williams had been suffering from Lewy body dementia – an undiagnosed illness which could have been the root cause of his bizarre behaviour.

In the episode of Autopsy, which reconstructed the final hours of the actor’s life, pathologist Dr Richard Shepherd explained how Williams’ dementia probably triggered his paranoid tendencies.

He says that Williams’s insomnia and anxiety, as well as periods of confusion and impaired decision making, could also have been connected to the condition.

But Dr Shepherd told the Channel 5 show – which has previously examined the unexpected deaths of Michael Jackson and Elvis Presley – that the actor may well have been aware of his undetected illness, something which could have exacerbated his paranoia in his final hours.

He says that Williams’s online activity suggested he knew ‘there was something else wrong with him, – something that he couldn’t put his finger on’.

Williams hanged himself in August 2014, a death which sent shockwaves through the celebrity world and led to an outpouring of grief from his worldwide fans.

His death was later ruled to have been suicide. The show revealed how, on the day he died, Williams cleaned his bathroom of blood after cutting his wrists.

According to the post-mortem report, Williams spent his last night at his California home with wife Susan Schneider.

Ms Schneider later described how her husband stuffed a number of his jewelled watches into a sock before driving to the house of a friend.

Speaking about the incident on the show, Dr Shepherd says: ‘This is a very peculiar incident that his wife describes as typical of the increasing paranoia that he had been suffering.’

Psychologist Anjula Mutanda also says the actor could have felt ‘under threat’.

‘Somebody experiencing paranoid feelings may fear that they are in danger and under threat,’ she says. Whether it is physiological, physical or financial – harm could be coming their way.’

After Williams’s body was found, a bottle of quetiapine, a powerful drug used to treat schizophrenia and bipolar disorder, was also found unopened in his bedroom.

He had been prescribed it a week before his suicide, suggesting his symptoms may have changed prior to his death.

In the months before his death, Williams had also checked into rehab to ‘fine-tune and focus’ on his commitment to staying clean.

But the documentary concluded there were no signs that drink or drugs were exacerbating his depression when he died.

Blood samples taken after his death showed he had not taken cocaine or alcohol in the last 24 hours of his life.

There was also no sign of damage to his liver from previous drinking binges.

The show also described how toxicology reports showed Williams’ moods were being controlled by mirtazapine, which is used to treat depressive disorders.

There was also levodopa in his system, which is used to treat Parkinson’s.

The documentary, part of a third series of the show, had already drawn criticism from Williams’s fans after it emerged that it featured a ‘graphic’ reconstruction of the actor’s suicide.

A Channel 5 spokesman previously said the depiction was kept to ‘an absolute minimum’ but that its inclusion ‘is important in telling the truth’.

They added: ‘The film celebrates Robin’s career and talent, and within that the tragic details of his death are part of that story.’

French actor Alain Poudensan plays Williams in the reconstructed scenes.

While Alain has worked as a Robin Williams impersonator for a number of years, he has also starred in many adult films, under the name Alain L’Yle.

Williams found fame with his portrayal of a kooky alien in the 1970s sitcom Mork and Mindy.

But it was his role as an irreverent DJ with the US Armed Services Radio station in Good Morning, Vietnam in 1987 which won him huge acclaim.

His roles ranged from serious and dramatic in films such as Dead Poets Society and Good Will Hunting, to comedy in Mrs Doubtfire.

He was nominated for an Oscar three times before winning an Academy Award for his performance as a psychologist in Good Will Hunting in 1997.

Mrs Schneider Williams, his third wife, was in a battle with his three children from previous marriages – Zak, Zelda and Cody – over his £33 million estate.

Zelda recently spoke out about her father’s death.

When asked why she believed her father took his own life, she said: ‘I don’t think there’s a point. It’s not important to ask.’

In a statement released shortly after her husband’s death, Susan Schneider said that Williams was struggling with depression, anxiety and the Parkinson’s diagnosis when he died.

Toxicology reports showed there was levodopa in his system, which is used to treat Parkinson’s.

The disease is a progressive disorder of the nervous system that affects movement.

It develops gradually, sometimes starting with a small tremor in one hand.

The disorder also commonly causes stiffness or slowing of movement.

Actor Michael J. Fox, a long-time friend of Williams, is well-known for his efforts to fund research into finding a cure.

He was just 29 years old when he was diagnosed with the disease.

A Strange And Shocking Illness

Depression, paranoia, Parkinson’s disease, confusion and dementia. The long list of symptoms suffered by Robin Williams is itself confusing, but all of these and more besides, can be accounted for by the disorder bearing the name, dementia with Lewy bodies (DLB), which his widow has now announced as his final diagnosis.

Few people have heard of DLB until, like Williams’ family, they are confronted by its multiple and variable combinations of symptoms which fluctuate in severity in an alarmingly unpredictable manner.

Yet DLB is the second most common cause of dementia in older people, accounting for 10-15% of all dementia cases and affecting at least 100,000 people in the UK alone. Only Alzheimer’s disease itself is more common.

Despite this, as the founder of the Consortium on Dementia with Lewy Bodies which has, over two decades, developed global consensus on guidelines for the clinical and pathological diagnosis and management of this common disorder, I am aware how little-known it is.

Lewy bodies were first described in the early 20th century by Dr Friedrich Lewy, who was studying the brains of people with Parkinson’s disease, a condition recognised by a combination of a shaking tremor, slowness of limb movements, and a shuffling walk.

Lewy bodies are, in fact, microscopic clumps of a protein called alpha-synuclein which may, under certain and as yet not understood circumstances, accumulate within nerve cells in the brain.

When some critical brainstem and midbrain structures including the substantia nigra are involved, there is a loss of the neurotransmitter dopamineand Parkinson’s disease is the result.

But in the last 20 years or so, we have realised that Lewy body disease can also affect other parts of the brain, producing symptoms other than those of Parkinson’s.

It occurs in the autonomic and peripheral nervous system producing vegetative symptoms such as low blood pressure, constipation and sweating.

Defining Symptom

Lewy bodies occurring in the cerebral cortex, meanwhile, lead to the characteristic symptoms by which DLB is recognised, usually starting with mild and fluctuating disturbances in attention and wakefulness.

The affected person appears vague, drowsy or frankly confused with a decrease in their interest and ability to reason or to carry out practical tasks. Apathy is one term used for this and is frequently mistaken for depression.

Visuo-perceptual function is also affected early which may account for the report of Williams’ bruising “miscalculation with a door”, and it is this involvement of the visual system which underpins the occurrence of the lifelike visual hallucinations which occur in about 80% of cases and often alert the clinician to a DLB diagnosis.

Waking Nightmares

Hallucinations may be threatening or distressing but are often simply perplexing for patients who cannot understand why familiar faces or unknown intruders repeatedly appear to them.

For others, the hallucinations occur as nightmares as part of a specific sleep disorder. As the Lewy body pathology disease progresses, generalised cognitive impairment and dementia progressively worsen, although a fluctuating pattern with intervals of lucidity often persists.

Parkinsonism occurs in many but by no means all sufferers and in those like Robin Williams in whom it seems to have been quite early and prominent, the initial diagnosis given is often one of Parkinson’s disease, a dementia label following soon after as additional symptoms emerge.

Short-term memory failure, the hallmark of Alzheimer’s disease may not be prominent unless, and here’s where it starts to get complicated, there is also a lot of Alzheimer’s disease pathology in the brain as well.

Hard To Pin Down

Why did it take so long to recognise the existence of DLB, especially if it is so common? The answer, is that cortical Lewy bodies are vanishingly difficult to see in the brain using conventional staining methods, unlike their brainstem counterparts observed so long ago by Dr Lewy.

Nevertheless, the development of immuocytochemical staining methods in the early 1990s suddenly made them visible outside of specialised units. This was a major step forward.

But what progress is the research community making with DLB now? Internationally agreed criteria for the clinical and pathological diagnosis have been agreed since a meeting held in Newcastle upon Tyne in 1995, updated there in 2005 and due to be reviewed and updated again in December this year.

Dedicated research centres such as the NIHR-funded Biomedical Research Unit in Lewy Body Dementia at Newcastle University have led the field by, for example, developing diagnostic tests such as the dopamine transporter SPECT scan, which can distinguish DLB from Alzheimer’s with >85% accuracy and which is now widely clinically available.

New Hope

Therapeutic trials have been few and far between in DLB because of a combination of a lack of compounds to test, a pre-occupation with targeting Alzheimer’s and a reluctance of regulatory bodies to recognise DLB. All of these are now changing and DLB is increasingly viewed as a malleable and commercially-viable target.

Pharmacological trials in DLB will undoubtedly increase public awareness and for families such as Robin Williams’ there are now highly-effective patient and carer organisations that provide information, advice, advocacy and support research activity.

As an inter-form of Parkinson’s and Alzheimer’s disease, DLB has the potential to unlock the key to both of its related disorders.

It is high time it was put in the spotlight.

Lewy Body Dementia Testimonies

Lewy Body Journal

My husband passed away in July of this year after 39 months of 24/7 home care aides, many trips to doctors and many medications.

When he was first diagnosed I scanned the Internet for information and found your Journal. I printed them all and have them in a large note book which was required reading for all of the caregivers.

I was fortunate to have good caregivers on the most part.

There were a few I had to part ways with because they just didn’t understand the differences between LBD and other dementias.

Treatment has to be given lovingly and if it is not the tide will turn in an instant. The biggest challenge with caring for a person with LBD is the great extremes of behavior. The fluctuations from day to day and during any one day are trying to any caregiver.

I was fortunate that we had taken out long term care insurance back in the 90’s. If we had not done that I would not have been able to have kept him at home.

He received far better care at home and it was easier on the family. We have two children who both live near and four grandchildren who could continue to visit as often as possible and it was important to his well being.

When I started to read your stories in the Journal I could see threads of behavior that crossed through many of the stories. It was frightening to read what was to come but I had to face reality to be ready for it.

He had triple by-pass surgery in 2004 and for awhile he was fit and felt good. But in 2006 we started to see the beginning signs of what was to be diagnosed as LEWY BODY DEMENTIA in 2009.

As I read more about LBD I realized that there were many other signs that it was coming. The symptoms mentioned that are associated with LBD were there:

Violent and acting out dreams, this was true for many years before any other signs.
Constipation
Difficulty in keeping track of sequences (poor multi-tasking)
Difficulty with spatial relationships

Those were the early signs which I helped to shield from others to protect him. That’s what wives do.

But when the hallucinations and falls started we had a problem. One time he could not get up and walk on his own. I called the ambulance and he went to the hospital for 10 days while my children and I prepared our “hospital” room at home for him.

We organized a schedule and caregivers started round the clock. I could not handle him alone. During the 39 months, I was hospitalized in 2011 and again in 2012 with some serious problems. But because I had a good built in system at home all went well.

I am on the monthly e-mailing list for the LBD Association (lbda.org) and I try to educate others about the disease. I also donated his brain to the Harvard Brain Bank to help with further research on the brain.

Thank you for being there for us.

HPB