Patient & Family Support

Patient & Family Support

Why Holistic Care Matters

Atypical parkinsonian disorders affect far more than movement. Early and ongoing involvement of palliative care, speech therapy, physical/occupational therapy, mental health support, and dedicated patient organizations dramatically improves quality of life for patients and reduces caregiver burnout.

Faster disease progression than typical Parkinson’s
High caregiver burden – 80–90% of patients need full-time care within 5–7 years
Complex symptom mix (dysarthria, dysphagia, falls, dementia, autonomic failure)
Limited symptomatic treatments → focus shifts early to quality of life

When & How to Refer Patients and Families

Refer at the time of suspected or confirmed diagnosis — not when the patient is “bad enough”.

  1. Print or email the family a one-page “New Diagnosis Resource Sheet” (available from CurePSP/Brain Support Network)
  2. Give direct links to the organisations below — most offer free care-navigator phone consultations within 48 hours
  3. Encourage early contact with speech therapy and palliative care teams
  4. Consider referral to a CurePSP Center of Care (USA) or equivalent specialist centre

Faces & Voices: Patient Stories + Monthly Zoom Support Group

Real stories from patients and caregivers living with PSP, CBD, MSA, and DLB. Join our free monthly Zoom support group (all diagnoses welcome).

Visit Faces & Voices → Stories + Join Zoom Group

Key Patient & Family Organizations

CurePSP (USA)
Free care guides, support groups, Centers of Care network
PSPA (UK & Ireland)
Helpline, regional support workers
CCF for PSP Awareness (World Wide)
Brain Support Network
Outstanding lay-friendly resources & brain donation coordination
Fight Parkinsons Australia
Lewy Body Dementia Association (LBDA)
MSA Coalition (USA)
Corticobasal Degeneration Solutions
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