Introduction

Lewy body dementias (LBDs) are brain disorders that have an effect on motor function, cognition, behaviour and mood. It is a common form of progressive dementia. It is the second most common form of dementia, making up 10-15% of dementia cases. However, at times LBD can be misdiagnosed for psychiatric disorders and Alzheimer’s or Parkinson’s disease. There are non-profit organisations that are based in the United States (US) as well as in Europe that focus exclusively on LBD. The Lewy Body Dementia Association (LBDA) and the Lewy Body Society (LBS) distribute information, promoting awareness, funding research, and providing support to LBD patients and their families  

LBD covers the clinical diagnosis of ‘Dementia and Lewy bodies’ (DLB); these have similar symptoms and underlying pathology but a different pattern of onset. The diagnosis of DLB is confirmed within a year of an individual developing dementia, DLB symptoms or extrapyramidal symptoms. Usually, individuals with Parkinson’s disease will develop dementia after a year or more of displaying motor symptoms. This becomes the diagnosis of ‘Parkinson’s disease dementia’ (PDD).      

There is a similarity in clinically diagnosing DLB and PDD and the one-year rule is a useful marker during the diagnosis. However, for the purpose of research, further studies are needed to understand  Lewy body symptoms over time. Around 1.3 million individuals in the US and 140,000 in the United Kingdom experience LBD. Three-quarters of the population with Parkinson’s disease who survive at least 10 years of the condition will develop dementia. Patients with LBD can expect a prognosis of 5 to 8 years of life. The work carried out by the LBD charities is important to fully acknowledge the condition and to cooperate with family and caregivers.     

The difficulty in the management and diagnosis of LBD

A survey in regard to the experience of LBD caregivers in clinical care conducted by the LBDA showed a diagnostic discrepancy. Approximately 60% of neurologists in the US have diagnosed  LBD   compared to primary care physicians, which has been noted as less than 10%. There is a gap in diagnostic capability between specialists and primary care doctors. Many general practitioners are unaware of the complex diagnostic criteria for DLB. However, the LBD charities encourage awareness of LBD amongst general practitioners by primary referral and those individuals who have had a diagnosis from a specialist.        

Informative resources including LBS new information leaflets and LBDA’s LBD Diagnostic Symptoms Checklist hope to increase the knowledge and confidence of frontline staff who work alongside LBD patients. Commonly, newly diagnosed people return to primary care doctors for follow-up clinical care for DLB.    

To ensure patients with DLB receive comprehensive treatment frontline staff must undergo continuing professional medical education. LBD charities have recommended close-knit coordination between clinicians who are treating the same patient for different LBD symptoms. This is because managing the different symptoms of LBD (e.g. cognitive, motor and behavioural) requires a balance to relieve one symptom without unintentionally affecting another symptom.    

There has been a rise in people receiving ‘In memoriam’ gifts for the specific diagnosis of DLB. However, despite the LBDA and the LBS  educating the public and healthcare professionals about the presentation and impact of this disease further support is needed. To inform the public and healthcare professionals vital efforts have been made about LBD through public service announcements featuring celebrities, social media, paid advertising and public relations activities.  

Outreach and partnership with the LBD community

A comprehensive understanding of the challenges created by the LBD is needed for the patient, the primary caregiver and the immediate family. This will lessen the burden on families associated with LBD design programmes and assign services that aim to reduce the challenges of LBD.    

After an individual has been diagnosed with LBD, different opportunities are set into place. For example further education about the condition and referrals to resources for support, advice and community services. Individuals who receive a diagnosis via specialist dementia or a movement disorders clinic have an increased opportunity to attain LBD educational resources as well as a referral to other organisations (e.g. LBDA and LBS). The UK guidelines for the diagnosis of dementia usually take place in secondary care, whereas in the US a general neurologist or a psychiatrist may carry out the diagnosis. This is because disorders affecting the brain are usually diagnosed and treated by neurologists and psychiatrists, reducing the rate of referrals for the condition. And then patients usually return to primary care to manage the symptoms.        

An increase in LBD education for front-line physicians has become important, as in most practices doctors refer patients and their families to LBD charities as a valuable resource and an add-on to clinical care. Families are known to seek educational information as well as emotional support from the LBD charities. The staff and volunteers, although not a substitute for a trained professional commonly are the first to listen to distraught caregivers and answer difficult questions. By involving experts in developing information materials, the charities’ resources ensure content has quality and is up to date.

LBDA and the LBS are a supplementary resource to relieve the strain on the healthcare system. Mainly by aiding people to understand LBD and directing them to the relevant sources of information. The charities provide news about advances in research as well as heighten self-sufficiency by suggesting care and access to services. This is a vital resource as LBD caregivers have reported medium to high levels of stress when providing care for an individual with LBD. Distress that a caregiver of LBD has are associations with psychosis, daytime sleeping and cognitive fluctuations which are common characteristics of a person with DLB and PDD. As dementia progresses, the need to understand sensitivities to medication, behavioural difficulties and long-term care needs also increases. Common questions that caregivers ask are in relation to the condition of LBD and what can be expected. An established LBD community provides an access route to others with a similar experience alongside new perspectives that may shed light from a different viewpoint. For example, the impact on a caregiver, their need for self-care and suggestions for caring for an individual with LBD.     

Charities by raising awareness of LBD motivate individuals to volunteer with organisations, which serve as a resource for other LBD families. Advocating for LBD increases knowledge as well as feeling empowered. This in turn encourages the feeling of creating a balance of power against a degenerative disease.     Charities help families to acknowledge their experiences and encourage positivity. For example, recording the name of the deceased on an online forum or on ‘an in memoriam’ webpage. This is hoped to provide solace, and support and to unite a community to overcome the isolation and depletion that is associated with LBD. After the devastating impact of LBD on the families’ lives some family members actively continue to engage with LBD organisations after grieving. Whereas some prefer to close the chapter on LBD, to heal, recharge and move on.     

Advancing research 

The primary objective for both of the LBD charities is to fulfil the needs of those who are affected by dementia, ensuring clinical advances lead to better treatments and ultimately its cure. The LBD charities also place donated funds to support research by granting awards. Other research programmes involve caregiver research, collaborating scientific meetings as well as fellowships. These organisations also work alongside government-based agencies, the industry and other related disease charities. This is hoped to reduce duplicated research ethos and to build a combined workforce.       

Summary  

The LBDA and LBS partake in services that hope to lift the burden of LBD on families and the community. They support and promote awareness of dementia, and aim to reduce the stress experienced by LBD families, which in turn may reduce excess usage of healthcare services. They provide vital resources that enable healthcare physicians to make an early, accurate diagnosis of the condition. This will provide a better understanding of LBD amongst the public, clinical professionals and caregivers as well as agencies that serve the LBD society..   

Organisations that are involved in LBD are close-knit of members that are personally touched by LBD.. They may work alongside leaders in relevant fields that drive the workforce of these charitable foundations to ensure that research programmes, strategies and services are led by experts in LBD, maximising quality content.   

As the condition advances the needs of LBD patients and their caregivers increase too, the charities offer continuity by providing and supporting them as they move through the health and social care system. A community is sustained by individuals who understand the struggles of those who are affected by LBD. A range of opportunities are provided for the meaning and purpose of the charitable work that is involved. The organisations assist people to overcome the sense of feeling powerless due to a degenerative condition, such as LBD. Some families that seek information about LBD and hope to access emotional support find their way to LBDA and LBS by means of the internet, instead of a referral via a healthcare professional.  Healthcare providers are encouraged to refer families after a diagnosis has been made as a supplementary clinical care resource to shed light on LBD and its management.       

There is a lack of understanding of LBD in the current clinical environment, especially in diseases such as Parkinson’s and Alzheimer’s. The majority of individuals and their families are unaware of DLB until diagnosed. Further studies are needed to build a relationship between motor disorders and non-motor symptoms (e.g., cognitive and behavioural difficulties).