Caregiving Resources: You're Not Alone

INTERNATIONAL & GLOBAL ORGANIZATIONS

Parkinson’s Disease – Global

International Parkinson and Movement Disorder Society (MDS)
Website: www.movementdisorders.org
A global network of over 12,000 clinicians and scientists dedicated to improving care for movement disorders through education and research. Access to journals, training, and international conferences.

World Parkinson Coalition
Website: www.worldpdcoalition.org
Organizes World Parkinson Congresses bringing together patients, caregivers, and healthcare professionals from around the world. Offers creativity programs, dance therapy, and global community building.

Dementia & Alzheimer’s – Global

Alzheimer’s Disease International (ADI)
Website: www.alzint.org
The worldwide federation of Alzheimer associations in over 100 countries. Publishes the World Alzheimer Report, provides global statistics, and advocates for dementia to be a global health priority.

World Health Organization – Dementia
Website: www.who.int/news-room/fact-sheets/detail/dementia
Global health guidance, fact sheets, and policy recommendations for dementia care and caregiver support.

Caregiver Support – Global

International Alliance of Carer Organizations (IACO)
Website: www.internationalcarers.org
Network of 16+ countries sharing best practices in caregiving programs, advocating for caregiver well-being, and raising awareness of family caregiving as an international issue.

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UNITED STATES

Parkinson’s Disease Organizations

Parkinson’s Foundation
Website: www.parkinson.org
Helpline: 1-800-4PD-INFO (1-800-473-4636)
Email: Helpline@Parkinson.org
Offers free information, referrals, support groups, educational webinars, and publications. Operates Centers of Excellence across the US.

Michael J. Fox Foundation
Website: www.michaeljfox.org
Leading Parkinson’s research organization funding cure-focused research. Offers clinical trial matching service and educational resources.

American Parkinson Disease Association (APDA)
Website: www.apdaparkinson.org
Phone: 800-223-2732
Nationwide network of chapters, information and referral services, support groups, and exercise classes. Offers National Resource Center for Rehabilitation with physical therapy helpline (888-606-1688).

Davis Phinney Foundation
Website: www.davisphinneyfoundation.org
Focused on living well with Parkinson’s today. Offers free comprehensive guides, webinars, exercise programs, and Ambassadors in 38 states for one-on-one support.

Dementia & Alzheimer’s Organizations

Alzheimer’s Association
Website: www.alz.org
24/7 Helpline: 800-272-3900 (available in 200+ languages)
Leading voluntary health organization providing care, support, education programs, and research funding. Local chapters in all 50 states.

Lewy Body Dementia Association
Website: www.lbda.org
Dedicated to Lewy body dementia (which includes Parkinson’s disease dementia). Offers caregiver support, educational resources, and specialist directory.

General Caregiver Support

Family Caregiver Alliance – National Center on Caregiving
Website: www.caregiver.org
Phone: 800-445-8106
Resources in multiple languages (Spanish, Chinese, Vietnamese, Tagalog). State-by-state resource locator, CareNav personalized dashboard, and extensive fact sheets.

Caregiver Action Network
Website: www.caregiveraction.org
Phone: 855-227-3640
Nation’s leading family caregiver organization serving 90+ million caregivers. Education, peer support, and advocacy.

AARP Caregiving Resource Center
Website: www.aarp.org/caregiving
Practical guides, financial planning tools, legal resources, and community support for caregivers.

National Alliance for Caregiving
Website: www.caregiving.org
Research, policy advocacy, and resources. Serves as Secretariat for International Alliance of Carer Organizations.

Eldercare Locator
Website: www.eldercare.acl.gov
Phone: 800-677-1116
U.S. Administration on Aging service connecting to local Area Agencies on Aging and community resources.

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EUROPE

Pan-European Organizations

Alzheimer Europe
Website: www.alzheimer-europe.org
Federation of 48 Alzheimer associations from 36 European countries. Advocates for dementia as European priority, provides research support, and organizes annual conferences.

European Parkinson’s Disease Association (EPDA)
Website: www.epda.eu.com
Umbrella organization of European Parkinson’s patient groups. Information, support, and advocacy at EU level.

Country-Specific Resources

United Kingdom

Parkinson’s UK
Website: www.parkinsons.org.uk
Helpline: 0808 800 0303
Free confidential helpline, local groups, information resources, and research funding.

Alzheimer’s Society
Website: www.alzheimers.org.uk
Helpline: 0333 150 3456
UK’s leading dementia charity with Dementia Connect support line, local services, and advocacy.

Carers UK
Website: www.carersuk.org
Helpline: 0808 808 7777
Support, information, and campaigning for UK’s 7 million carers.

Germany

Deutsche Parkinson Vereinigung
Website: www.parkinson-vereinigung.de
German Parkinson’s Association with regional support groups and resources.

Deutsche Alzheimer Gesellschaft
Website: www.deutsche-alzheimer.de
Helpline: 030 259 37 95 14
German Alzheimer Society providing information and support.

France

France Parkinson
Website: www.franceparkinson.fr
Phone: 01 45 20 22 20
French Parkinson’s association with local committees and support services.

France Alzheimer
Website: www.francealzheimer.org
Phone: 0 800 97 2080
Network of 99 associations across France providing support and advocacy.

Spain

Federación Española de Parkinson
Website: www.fedesparkinson.org
Spanish Parkinson’s Federation coordinating regional associations.

Confederación Española de Alzheimer (CEAFA)
Website: www.ceafa.es
Phone: 949 21 33 29
Spanish confederation of Alzheimer’s associations.

Italy

Associazione Italiana Parkinsoniani
Website: www.parkinson.it
Italian Parkinson’s Association with regional chapters.

Federazione Alzheimer Italia
Website: www.alzheimer.it
Italian Alzheimer’s Federation representing 47 associations.

Netherlands

Parkinson Vereniging
Website: www.parkinsonvereniging.nl
Dutch Parkinson’s Association with support groups and information.

Alzheimer Nederland
Website: www.alzheimer-nederland.nl
Phone: 030 656 56 56
Dutch Alzheimer’s Society with national helpline and resources.

Sweden

Parkinsonförbundet
Website: www.parkinsonforbundet.se
Swedish Parkinson’s Association.

Alzheimer Sverige
Website: www.alzheimerfonden.se
Swedish Alzheimer’s Foundation.

Denmark

Dansk Parkinson Forening
Website: www.parkinson.dk
Danish Parkinson’s Association.

Alzheimerforeningen
Website: www.alzheimer.dk
Phone: 70 10 99 03
Danish Alzheimer’s Association.

Poland

Polskie Stowarzyszenie Chorych na Chorobę Parkinsona
Website: www.parkinsona.pl
Polish Parkinson’s Disease Association.

Czech Republic

Česká alzheimerovská společnost
Website: www.alzheimer.cz
Czech Alzheimer Society.

ROMANIA (Cristian’s Home Country)

Asociația Română de Parkinson și Tulburări de Mișcare
Limited national resources; most care coordinated through neurologists and geriatricians in major hospitals (Bucharest, Cluj-Napoca, Timișoara).

Alzheimer Romania / Demența România
Emerging support organizations – contact through:

• University hospitals with neurology departments
• Bucharest University Hospital
• Cluj-Napoca medical centers

Romanian Caregiver Support:
Currently limited formal caregiver support organizations. Connect through:

• Local church communities
• Facebook groups: “Îngrijitori România” (Romanian Caregivers)
• Private neurologist practices
• Home care agencies (îngrijire la domiciliu)

Note: If you’re a Romanian caregiver reading this, please reach out to us at contact@hopesformom.com. We’re building a community and would love to connect.

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ASIA-PACIFIC

Australia

Parkinson’s Australia
Website: www.parkinsons.org.au
National organization coordinating state-based Parkinson’s associations.

Dementia Australia
Website: www.dementia.org.au
Helpline: 1800 100 500
National dementia helpline and support services.

Carers Australia
Website: www.carersaustralia.com.au
National peak body representing Australia’s carers.

New Zealand

Parkinson’s New Zealand
Website: www.parkinsons.org.nz
Phone: 0800 473 4636
Support groups, education, and advocacy.

Alzheimers NZ
Website: www.alzheimers.org.nz
Helpline: 0800 004 001
Education, support services, and advocacy.

Japan

Japan Parkinson’s Disease Association
Website: www.jpda-net.org
Patient support and advocacy organization.

India

Parkinson’s Disease and Movement Disorder Society (PDMDS)
Website: www.pdmds.org
Professional society supporting Indian patients and caregivers.

Alzheimer’s and Related Disorders Society of India (ARDSI)
Website: www.ardsi.org
Chapters in major cities providing support and awareness.

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CANADA

Parkinson Canada
Website: www.parkinson.ca
Helpline: 1-800-565-3000
Regional offices, support groups, and educational programs.

Alzheimer Society of Canada
Website: www.alzheimer.ca
Helpline: 1-800-616-8816
Provincial societies, support services, and information.

Carers Canada
Website: www.carerscanada.ca
Virtual alliance supporting Canadian caregivers.

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LATIN AMERICA

Brazil

Associação Brasil Parkinson
Website: www.parkinson.org.br
Brazilian Parkinson’s Association.

ABRAz – Associação Brasileira de Alzheimer
Website: www.abraz.org.br
Brazilian Alzheimer’s Association.

Mexico

Asociación Mexicana de Parkinson
Website: www.parkinsonmexico.org
Mexican Parkinson’s Association.

Argentina

Asociación Argentina de Parkinson
Website: www.argparkinson.org.ar
Argentine Parkinson’s Association.

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AFRICA & MIDDLE EAST

South Africa

Parkinson’s Association of South Africa
Website: www.parkinsons.co.za
Support groups and resources.

Alzheimer’s South Africa
Website: www.alzheimers.org.za
Helpline: 0860 102 681

Israel

Caregivers Israel
Recognized IACO member supporting Israeli caregivers.

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EDUCATIONAL RESOURCES

Free Online Courses

Understanding Parkinson’s Disease (Coursera)
Free course from University of Rochester covering disease basics, symptoms, and management.

Understanding Dementia (University of Tasmania)
Free MOOC explaining dementia types, symptoms, and care strategies.

Caregiving 101 (Family Caregiver Alliance)
Free online modules covering all aspects of family caregiving.

62 Tips on Caring for a Loved One with Dementia
Free online comprehensive practical tips on caring for a loved one with dementia
lanzonemorgan.com

Books & Publications

Parkinson’s Disease:

• “Every Victory Counts” – Davis Phinney Foundation (Free PDF)
• “A Manual for People Living with Parkinson’s” – APDA (Free)
• “The Parkinson’s Handbook” – Dr. Roger Barker

Dementia Care:

• “The 36-Hour Day” – Nancy Mace & Peter Rabins
• “Learning to Speak Alzheimer’s” – Joanne Koenig Coste
• “Creating Moments of Joy” – Jolene Brackey

Caregiving:

• “The Caregiver’s Survival Handbook” – Alexis Abramson
• “When the Body Says No” – Dr. Gabor Maté
• “Being Mortal” – Atul Gawande

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MEDICAL & PROFESSIONAL RESOURCES

Find Specialists

Movement Disorder Specialist Directory
International Parkinson and Movement Disorder Society: www.movementdisorders.org/MDS/Find-a-Healthcare-Professional.htm

Parkinson’s Foundation Centers of Excellence
www.parkinson.org/care-resources/find-medical-care

Memory Clinic Locator
Find memory clinics and dementia specialists in your area through Alzheimer’s associations.

Clinical Trials

Fox Trial Finder (Michael J. Fox Foundation)
foxtrialfinder.michaeljfox.org
Match to Parkinson’s research studies.

Alzheimer’s Association TrialMatch
www.alz.org/alzheimers-dementia/research_progress/clinical-trials/trialmatch
Connect to dementia clinical trials.

ClinicalTrials.gov
www.clinicaltrials.gov
U.S. database of all registered clinical studies.

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FINANCIAL & LEGAL RESOURCES

Financial Assistance

Parkinson’s Foundation Assistance Programs
Emergency financial assistance for people with PD.

NORD Patient Assistance Programs
Help with medication costs for rare disorders including some Parkinson’s symptoms.

Medicare/Medicaid Information (US)
www.medicare.gov
www.medicaid.gov

Social Security Disability Benefits (US)
www.ssa.gov/disability

Legal Planning

National Academy of Elder Law Attorneys
Find elder law attorney: www.naela.org

Advance Care Planning Documents

• Power of Attorney
• Healthcare Proxy
• Living Will
• POLST/MOLST forms

Aging with Dignity – Five Wishes
www.agingwithdignity.org
Easy-to-understand advance directive document.

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PRACTICAL CAREGIVING TOOLS

Home Safety & Modifications

Home Safety Checklist (CDC)
www.cdc.gov/falls/steadi/home-safety.html

Assistive Devices & Equipment

• Grab bars and handrails
• Shower chairs and bath benches
• Raised toilet seats
• Medication organizers
• Bed rails and transfer aids
• Non-slip mats

Adaptive Clothing

• Magnetic closures
• Velcro fastenings
• Easy-on shoes
• Dignity-preserving incontinence wear

Respite Care

National Respite Locator (US)
archrespite.org/respitelocator
Find temporary relief care in your area.

Adult Day Programs
Contact local Area Agency on Aging for local options.

Medication Management

Medication Tracking Apps

• Medisafe
• MyTherapy
• CareZone

Pharmacy Assistance Programs

• RxAssist: www.rxassist.org
• NeedyMeds: www.needymeds.org
• GoodRx: www.goodrx.com

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CAREGIVER SELF-CARE

Mental Health Support

Crisis Text Line (Global)
Text HOME to 741741 (US/Canada)
Free 24/7 crisis support.

Psychology Today Therapist Finder
www.psychologytoday.com/us/therapists
Find therapists specializing in caregiver stress.

Caregiver Burnout Resources

• Family Caregiver Alliance fact sheets
• AARP caregiver stress management tools
• Local caregiver support groups

Exercise & Wellness

Rock Steady Boxing (for Parkinson’s)
Non-contact boxing program specifically for PD. International locations.

Dance for PD
danceforparkinsons.org
Free online classes and international locations.

Tai Chi for Health Programs
Evidence-based programs for balance and wellness.

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ONLINE COMMUNITIES & FORUMS

Parkinson’s Communities

Parkinson’s Foundation Community
www.parkinson.org/community

APDA My Parkinson’s Team
Social network for people with PD.

Reddit r/Parkinsons
Active online community.

Dementia Communities

Alzheimer’s Association ALZConnected
www.alzconnected.org
Online support community.

Dementia Talking Point (UK)
forum.alzheimers.org.uk

Caregiver Forums

AgingCare.com Forums
Large community of caregivers sharing experiences.

Caregiver Space Facebook Groups
Many condition-specific private groups available.

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HELPLINES & CRISIS SUPPORT

24/7 Helplines

United States:

• Alzheimer’s Assoc. Helpline: 800-272-3900
• Parkinson’s Foundation: 800-473-4636
• Caregiver Action Network: 855-227-3640
• Crisis Text Line: Text HOME to 741741
• National Suicide Prevention: 988

United Kingdom:

• Alzheimer’s Society: 0333 150 3456
• Parkinson’s UK: 0808 800 0303
• Samaritans: 116 123

Canada:

• Alzheimer Society: 1-800-616-8816
• Parkinson Canada: 1-800-565-3000
• Crisis Services Canada: 833-456-4566

Australia:

• Dementia Australia: 1800 100 500
• Lifeline: 13 11 14

Europe:

• Check your country’s Alzheimer Europe member organization for local helplines: www.alzheimer-europe.org/about-us/who-we-are/members

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HELPFUL APPS

Caregiving Management

• CareZone – medication tracking, appointments, care team coordination
• Lotsa Helping Hands – organize friends/family to help
• Caring Village – care coordination platform
• CaringBridge – health journal to update family/friends

Cognitive Stimulation

• Lumosity – brain training games
• Constant Therapy – speech and cognitive therapy
• MindMate – dementia-specific brain games

Safety & Monitoring

• Life360 – location sharing for safety
• Tile – Bluetooth trackers for lost items
• SimpliSafe – home monitoring systems

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DOWNLOADABLE RESOURCES

Caregiver Action Plan Template
Organize care responsibilities, contacts, and schedules.

Medical Information Sheet
Track medications, allergies, doctors, and medical history.

Daily Care Log
Record symptoms, behaviors, medications, and concerns.

Emergency Contact List
Keep essential numbers accessible.

Advance Care Planning Worksheets
Guide conversations about end-of-life wishes.

All these templates are available through Family Caregiver Alliance and AARP websites.

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CAN’T FIND WHAT YOU NEED?

Contact us: contact@hopesformom.com

We’re constantly updating this resource page. If you know of an organization that should be included, or if you need help finding resources in your area, please reach out. We’re in this together.

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SOURCES & DISCLAIMERS

This page is compiled from publicly available information from reputable health organizations. Hopes For Mom is not affiliated with any listed organizations unless explicitly stated. Always consult with healthcare professionals for medical advice. Resources are provided for informational purposes only.

Last updated: January 2026

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Remember: You are not alone. Millions of families worldwide are walking this same path. Reach out. Ask for help. Accept support. You deserve it.

— Cristian & the Hopes For Mom Community