Mayo Clinic
Rochester, United States
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Lewy body dementia
Where research stands today?
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Who are you looking for?
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If you are looking for a relative
Here you will find questions you can ask, help with difficult talks, organisations for carers and your relative's rights.
Questions for your relative's doctor
How do I talk to them about this?
You do not need the right words. Ask what your relative wants to know, and let them set the pace. These pages can help.
Support for you as a carer
Looking after someone is work too. These organisations help carers, and the list further down this page shows helplines by country.
Power of attorney and patient rights, by country
A doctor can share information and a relative can act only with the patient's consent or a legal authority. It is easier to arrange this early.
- Hungary: patient rights representatives (Integrált Jogvédelmi Szolgálat)
- Germany: power of attorney and care directives (Federal Ministry of Justice)
- Austria: adult protection and representation (Ministry of Justice)
- United Kingdom: lasting power of attorney (GOV.UK)
- EU: your rights to healthcare in another EU country (Your Europe)
If you are looking for your child
Children are often treated differently from adults, in specialist centres. Here is where to start.
Before you pay
Parents often receive offers of paid treatment. Please go through this list before you pay for anything.
For patient organisations
You can share or print these pages for your members. They are free and need no account.
Trials you can join
The trial team decides who can take part; your doctor can help you ask.
Type
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No trial fits you? Your doctor can ask the company for early access to a medicine that is not approved yet. It is not a trial: there is no study, and the company decides case by case.
Where treatment stands
- ACP-204Phase 3 · NCT07095465 · NCT07029581
- Furosemide InjectionPhase 3 · NCT04706910
- AmbroxolPhase 2 · NCT04588285
- DonanemabPhase 2 · NCT07589595
- NYX-458Phase 2 · NCT04148391
- Ambroxol HydrochloridePhase 1/2 · NCT04405596
- repetitive transcranial magnetic stimulationPhase 1/2 · NCT07122908
- Terazosin HydrochloridePhase 1/2 · NCT04760860
- Carbidopa 200mg oral dosePhase 1 · NCT04246437
- Entacapone 400mg oral dosePhase 1 · NCT04246437
- hUC-MSC-sEV-001 nasal dropsPhase 1 · NCT06607900
Closest to patients
- 18F-DOPA II - PET Imaging OptimizationPhase 3 trial: Furosemide InjectionWC Mackenzie Health Science Centre / University of Alberta Hospital · Edmonton, CanadaPhase 3Results expected 2027
- Phase 3, Open Label Extension Study of ACP-204 in Lewy Body Dementia PsychosisPhase 3 trial: ACP-204University of Kansas Medical Center Research Institute, Inc · Kansas City, United States + 48 more hospitalsPhase 3Results expected 2029
- [18F]-MFBG Versus [123I]-MIBG and [18F]-PE2I in PD vs. MSA and DLB vs. ADPhase 2/3 trial: Lewy body dementiaUZ Leuven · Leuven, Belgium + 1 more hospitalPhase 2/3Results expected 2026
Organisations that can help
Helplines, patient groups and support services for you and your family.
Select your country to see the organisations there, starting with the ones closest to you.
3 organisations
Umbrella organisations (they connect national groups)
Alzheimer Europe
Umbrella of national Alzheimer associations in 39 countries, with a member directory.
Visit site: Alzheimer Europe
Lewy Body Dementia Association
Main LBD patient organisation (US-based): Lewy Line support, free online Lewy Learning Center, support groups, trial tracker, webinars.
Visit site: Lewy Body Dementia Association
Lewy Body International
Cooperative alliance of Lewy body dementia organisations worldwide: awareness (World Lewy Body Dementia Day, 28 January), education, care-partner support via members.
Visit site: Lewy Body International
General support
For anyone who is ill, whatever the disease: patients' rights and legal aid, crisis lines, hospice and palliative care, care in another EU country, and patient organisations' umbrella bodies.
International
European Patients' Forum (EPF)
Umbrella of European patient organisations and national patient coalitions.
Visit site: European Patients' Forum (EPF)
International Alliance of Patients' Organizations
Global alliance of patient organisations of all diseases, promoting patient-centred healthcare.
Visit site: International Alliance of Patients' Organizations
Frontlight is not affiliated with these organisations; we list them because they help.
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Latest news
Results, new trials and publications, newest first. Every item links to its source.
Results and new studies, newest first, in plain words.
Plain-language summary pending. Original title shown.
New and changed trials of the last 30 days, without an account and without tracking.
RSS feedCalendar reminderPublication
Depression and loneliness differentially predict visual hallucinations in veterans with Alzheimer's disease and Lewy body dementia.
Depression and loneliness differentially predict visual hallucinations in veterans with Alzheimer's disease and Lewy body dementia.
Alzheimer's & dementia (Amsterdam, Netherlands)
PubMed · PMID 42996468Publication
Performance-Based Versus Informant-Reported IADL in Dementia: A Person-Environment-Occupation Perspective for Occupational Therapy Outcome Selection.
Performance-Based Versus Informant-Reported IADL in Dementia: A Person-Environment-Occupation Perspective for Occupational Therapy Outcome Selection.
Hong Kong journal of occupational therapy : HKJOT
PubMed · PMID 42996456Case report
Clinical Trajectory of Late-Onset Delusional Disorder Toward Evolving Dementia With Lewy Bodies.
Clinical Trajectory of Late-Onset Delusional Disorder Toward Evolving Dementia With Lewy Bodies.
Psychogeriatrics : the official journal of the Japanese Psychogeriatric Society
PubMed · PMID 42980247Preprint
Genetic susceptibility to Lewy body disease and the distribution of Lewy pathology.
Genetic susceptibility to Lewy body disease and the distribution of Lewy pathology.
medRxiv : the preprint server for health sciences
PubMed · PMID 42996239Preprint
Intrastriatal injection of amplified Lewy body dementia (LBD) fibrils in mice results in accumulation of fibrils with LBD structure and neurodegeneration.
Intrastriatal injection of amplified Lewy body dementia (LBD) fibrils in mice results in accumulation of fibrils with LBD structure and neurodegeneration.
bioRxiv : the preprint server for biology
PubMed · PMID 42999216
Tools for your next step
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Groups with active Lewy body dementia work.
University College London
London, United Kingdom
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Newcastle University
Newcastle upon Tyne, United Kingdom
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Amsterdam University Medical Centers
Amsterdam, Netherlands
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University of Cambridge
Cambridge, United Kingdom
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German Center for Neurodegenerative Diseases
Bonn, Germany
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Amsterdam Neuroscience
Amsterdam, Netherlands
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Vrije Universiteit Amsterdam
Amsterdam, Netherlands
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Amsterdam UMC Location Vrije Universiteit Amsterdam
Amsterdam, Netherlands
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UCL Queen Square Institute of Neurology
London, United Kingdom
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Biomedical Research Networking Center on Neurodegenerative Diseases
Madrid, Spain
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King's College London
London, United Kingdom
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Social media spreads misinformation. Paste what you read here, and we’ll tell you whether there is scientific evidence behind it.
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