Dementia with Lewy Bodies is often unrecognised or misdiagnosed leading to problems with prognosis and management. In this video we are joined by Simon Lewis, highlighting some of the challenges posed by the variety of ways in which Dementia with Lewy Bodies can present, as well as common symptoms and their management in the clinic.
This series of help sheets has been developed to assist your understanding of Lewy body disease and the disorders that arise from it.
Lewy body disease is a common neurodegenerative disease of ageing. This means that the disease causes gradual brain damage. For reasons not fully understood, it occurs when there is an abnormal build up of a protein called alphasynuclein in brain cells. These abnormalities occur in specific areas of the brain, causing changes in movement, thinking and behaviour.
Lewy body disease can have a significant impact on a person’s behaviour. Some changes are so common that they are recognised as part of the diagnostic criteria, while others are rare. The management and treatment of these neuropsychiatric symptoms is complex and requires thorough assessment, preferably by a geriatrician or a psychiatrist specialising in the treatment of older people.
One of the most confusing aspects of Lewy body disease is the relationship between the disorders in the spectrum and their impact on body movement. Traditionally, Parkinson’s disease is described as a progressive disease which affects the control of body movements. However, it is important to understand that Parkinson’s is not just a motor disorder. People with Parkinson’s can also experience changes in their thinking, mood, behaviour and autonomic functions (involuntary functions like temperature control).
Lewy body disease can have a significant impact on a person’s autonomic (involuntary) nervous system. This system automatically regulates many bodily functions including bladder and bowel function, temperature regulation and heart rhythm. Some autonomic changes are so frequently seen as part of Lewy body disease that they are included in the diagnostic criteria. However, they can occur for other reasons.
This sheet is designed to give you some basic information about Lewy body disease and its associated disorders. It will help you understand what is happening to someone you know and care about. It also provides some tips so that you can assist in their care.
This sheet is designed to give you some basic information about Lewy body disease and its associated disorders. It will help you understand what is happening in the home that you are visiting. It also gives you some tips so that you can assist both the client and their carer
This sheet is designed to give you some basic information about Lewy body disease and its associated disorders. It will help you understand what is happening to the person being considered for your service. It also gives you some tips so that you can assist both the client and their carer.
Pat and Ron Potter-Efron had been married for 54 years when Pat received the diagnosis of Lewy Body Dementia in 2018. Most importantly, they searched for a way to continue to contribute meaningfully to society while living as complete and satisfying lives as possible. That is when they decided to write a journal of their experiences, but a journal different than any they had encountered as they reviewed the Lewy Body literature. Pat and Ron began to write a series of conversations. Ron would initiate a relevant topic (hallucinations; teamwork; mortality, etc.) and then Pat would add her comments. Fortunately, Pat has retained her ability to clearly describe her thoughts and feelings even as some of her abilities have diminished. Pat does not always agree with Ron's observations, of course. The perspectives of care receiver inevitably differ from those of care giver. When other couples in the Lewy Body dementia community discovered Ron and Pat's work they were eager to see it.
A Caregiver's Guide to Lewy Body Dementia is the first book to present a thorough picture of what Lewy body dementia really is. Combining current strategies for managing symptoms and behaviors with personal examples that connect to readers' own experiences, this is the ideal book for caregivers, family members, and friends of individuals seeking to understand the disease and provide support to their loved ones. Written in easy-to-read language, the chapters incorporate handy facts and tips throughout, definitions of key terms, and practical wisdom to help caregivers navigate the day-to-day. Links to online resources, support groups, and associations are collected at the end of the book for further reference.
Here you will find not only hundreds of workable ideas on how to maintain and improve the quality of life but also a vast resource of information on what to expect of this unusual disease as it takes its course.
Hallucinations and changes in visual perception i.e. how the brain sees the world, happen when the brain misunderstands the information it is receiving. This can be a common problem in Lewy body dementia which often affects the parts of the brain that help interpret what we see.
Lewy body dementia (LBD) is a complex, challenging, and surprisingly common brain disease. Although lesser known than its “cousins” Alzheimer’s disease and Parkinson’s disease, LBD is not a rare disorder. More than 1 million Americans are affected by its disabling changes in the ability to think and move. This 40-page booklet helps people with LBD, their families, and professionals learn more about the disease and resources for coping.
This guide is intended to help people with LBD, their families and carers and healthcare professionals to learn more about the disease and the impact it has. It explains what is known about the different types of LBD and how they
are diagnosed.It describes how to treat and manage this difficult disease, with practical advice both for people with LBD, their families and carers.
Dementia-related behaviors are common with all types of dementia but often start early with Lewy body dementia (LBD). Most experts recommend the use of non-drug options prior to resorting to behavior management drugs which, especially with LBD, can and often does cause other problems. Responsive dementia care is a method for doing this. It uses understanding of how the brain works coupled with empathy, acceptance and a wide variety of alternative therapies to avoid, decrease and/or defuse these difficult behaviors.
- about common LBD symptoms
- how to get a good and complete diagnosis
- about commonly prescribed anti-psychotic medications that can have potentially harmful or even deadly side effects if given to a person suffering from LBD. Know which medications are safer alternatives
- how to adapt your caregiving skills to the needs of a person with LBD
- how to utilize visual and verbal cues to increase understanding and cooperation
- about hands-on skills for LBD
RDS supports people affected by 7 of the rare dementias including carers and bereaved carers. These are: Familial Alzheimer’s disease (FAD), frontotemporal dementia (FTD), familial frontotemporal dementia (fFTD), posterior cortical atrophy (PCA), primary progressive aphasia (PPA), Lewy body dementia (LBD) and Young-onset Alzheimer’s disease (YOAD).
Individuals who have dementia with Lewy bodies present various symptoms that differ from those associated with Alzheimer’s disease. Of the several characteristic symptoms of dementia with Lewy bodies, visual hallucinations often appear in the early stages of the disease, and some hallucinations cause people with dementia with Lewy bodies to experience unique difficulties in their daily lives. The aim of this paper is to clarify the visual hallucination-related difficulties experienced by people with dementia with Lewy bodies as well as their coping methods.
Yumoto, A., & Suwa, S. (2021). Difficulties and associated coping methods regarding visual hallucinations caused by dementia with Lewy bodies. Dementia, 20(1), 291–307.
Patients with Lewy body dementia present with a wide range of cognitive, neuropsychiatric, sleep, motor, and autonomic symptoms. Presentation varies between patients and can vary over time within an individual. Treatments can address one symptom but worsen another, which makes disease management difficult. Symptoms are often managed in isolation and by different specialists, which makes high-quality care difficult to accomplish. Clinical trials and meta-analyses now provide an evidence base for the treatment of cognitive, neuropsychiatric, and motor symptoms in patients with Lewy body dementia.
Taylor, J. P., McKeith, I. G., Burn, D. J., Boeve, B. F., Weintraub, D., Bamford, C., Allan, L. M., Thomas, A. J., & O'Brien, J. T. (2020). New evidence on the management of Lewy body dementia. The Lancet. Neurology, 19(2), 157–169.
Lewy body dementia (consisting of dementia with Lewy bodies and Parkinson's disease dementia) is a common neurodegenerative disease characterised by visual hallucinations, fluctuating attention, motor disturbances, falls, and sensitivity to antipsychotics. This combination of features presents challenges for pharmacological management. Given this, we sought to review evidence for non-pharmacological interventions with patients with Lewy body dementia and their carers.
Connors, M. H., Quinto, L., McKeith, I., Brodaty, H., Allan, L., Bamford, C., Thomas, A., Taylor, J. P., & O'Brien, J. T. (2018). Non-pharmacological interventions for Lewy body dementia: a systematic review. Psychological medicine, 48(11), 1749–1758.
Scarce research investigating exercise in LBD exists. This review confirms exercise studies in PD and dementia consistently exclude LBD participants. Results in this cohort must be treated with caution until robustly designed, larger studies are commissioned to explore exercise efficacy, feasibility and clinical relevance. Discussion: Scarce research investigating exercise in LBD exists. This review confirms exercise studies in PD and dementia consistently exclude LBD participants. Results in this cohort must be treated with caution until robustly designed, larger studies are commissioned to explore exercise efficacy, feasibility and clinical relevance.
Inskip, M., Mavros, Y., Sachdev, P. S., & Fiatarone Singh, M. A. (2016). Exercise for Individuals with Lewy Body Dementia: A Systematic Review. PloS one, 11(6), e0156520.
Objective - Psychosocial support for people with dementia with Lewy bodies (DLB) and family care partners is frequently lacking, despite the need expressed by those with lived experience. Our objective was to examine the feasibility and acceptability of an intervention designed to build coping capability.
Killen, A., Flynn, D., O’Brien, N., & Taylor, J.-P. (2022). The feasibility and acceptability of a psychosocial intervention to support people with dementia with Lewy bodies and family care partners. Dementia, 21(1), 77–93.