Advanced Care Team (ACT) for Parkinson
Summary
Parkinson's disease or related disorders advance over time. When they do, many of the motor and non motor symptoms also progress. This can include balance troubles, falls and injury. It can also include memory difficulties, hallucinations, pain and aspiration troubles.
Our team provides specialized care to provide relief during these advanced stages. It can also give relief from the emotional aspects of the illness. We are a team of specialists who work together. This provides an extra layer of support including help dealing with difficult emotions, daily living challenges, or help at home.
There are some expected outcomes from participating in the program, such as improvements in quality of life, mood and possible changes in the perspective of this stage of the disease. Also, some provided tools can help with resources related to community support, financial issues, and long-term needs.
If you are interested, you can contact us and we can answer any questions you may have about the research study. Then, if you would like to participate we will perform some questions to determine if you are an eligible candidate.
Eligibility
Eligible gender: Male, Female, Transgender, Other
Eligible ages: 20 to 100
Inclusion criteria:
You are eligible to participate if:
1. You have a diagnosis of neurodegenerative movement disorders such as Parkinson's disease and related disorders (PDRD) like multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, or Lewy Body dementia.
2. If you have a moderate to high Advanced Care needs based on the Palliative Care Needs Assessment Tool (PC-NAT). A questionnaire used to determine the needs in different stages of the disease.
3. If you are between 20 and 100 years old.
Exclusion criteria:
You are not eligible to participate if:
1. You need immediate and urgent palliative care needs. These patients will be offered appropriate services immediately.
2. You have other illnesses that could require PC e.g. metastatic cancer.
3. You are already receiving advanced care and/or hospice.
4. You have a diagnosis of severe cognitive impairment (Montreal Cognitive Assessment <10). These patients will be offered appropriate services. Care partners can participate.
Participate
Fill out the following form if you want to participate in this research
Collection of personal information
Your personal information is collected under
the authority of section 33(c) of the Freedom of Information and Protection of Privacy Act. If
you have any questions about the collection or use of this information, please visit our
Access to Information page.
Additional information
Contact information
For more information, Contact Karla Cantu at 403-210-7542 or send an email to karla.cantuflores1@ucalgary.ca
Principal investigator:
Veronica Bruno
Clinical trial:
Yes
REB-ID:
REB22-0545