More Than a Movement Disorder: Applying Palliative Care to Parkinson’s Disease

– Patients must be fluent English Speakers,

– Must be over age 18,

– They must meet United Kingdom (UK) Brain Bank criteria for probable PD, or

– They must meet standard criteria for

– progressive supranuclear palsy (PSP),

– corticobasal degeneration (CBD),

– multiple systems atrophy (MSA),

– vascular parkinsonism, or

– Lewy Body Dementia (LBD)

– Alzheimer’s dementia (AD)

– Primary progressive aphasia

– Vascular dementia.

– Patients must be at high risk for poor outcomes as defined by the Brief Needs
Assessment Tool (BNAT) which screens for psychosocial issues, symptoms, and caregiver
burden.

– Caregivers will be identified by asking the patient: “Could (participant) tell us the
one person who helps (participant) the most with (participant’s) PD outside of
clinic?”

– Caregivers may be self-identified in cases of severe dementia in order to obtain data
relevant to this vulnerable and underrepresented group.

Exclusion Criteria:

– Unable or unwilling to commit to study procedures;

– Presence of additional chronic medical illnesses which may require palliative services
(e.g. metastatic cancer); or

– Already receiving palliative care or hospice services.

– Not expecting to continue care with enrolled physician for at least 6 months.

The investigators have purposefully kept our inclusion/exclusion criteria broad to allow
for greater generalizability of results and to ensure inclusion of potentially
underrepresented and understudied subgroups.