Transition to Care Program

The Cause

Parkinson Association of Alberta would like to develop and run a Transition to Care Program for loved ones of people with Parkinson disease and Parkinson's Plus Syndromes. This program would be designed specifically for spouses/care partners and adult children of people with Parkinson's whose loved ones are entering or have recently entered long term care.

Whether by choice or circumstance, the act of placing a loved one into a long term care facility (even if it is the best and/or safest option for everyone involved) is one of life's most difficult transitions. Far too often this conversation is put off until something happens and choice is no longer an option. Furthermore this transition can be made even more difficult when one's loved one isn't as self-aware of their own safety, limitations, and/or cognitive impairments which is a key issue in Parkinson's. And, while feelings of relief, guilt, anger, resentment, sadness and fear are often experienced by both parties; the burden of the decision making and emotional toll often falls primarily on the care partner/spouse.

It is our intent to develop this Transition to Care Program to help Care Partners prepare for this transition emotionally and practically, redefine their new “role” in providing care to/for their loved one and how to advocate for their loved one in a long-term care system. This program will be delivered via online platform to ensure spouses/care partners and adult children of people with Parkinson's across our service area of Alberta and Northwest Territories have access to this unique support.

Who Will it Benefit?

This program will primarily benefit the spouses/care partners and adult children of people with Parkinson's. On a secondary level it will also benefit the people with Parkinson's themselves as they transition into a space that is more beneficial for their safety, health, and overall well-being.

Parkinson disease and Parkinson’s Plus Syndromes are chronic, progressive neurological conditions for which there is no known cause or cure. Care partners (primarily spouses but also adult children) play an important role in ensuring the well-being of their loved one. Over the course of the disease symptoms (physical, cognitive, etc) increase and become worse, leading to the care partner assuming more responsibilities in terms of both physical care for their loved one and the day-to-day activities (household chores, decision making, etc). It is a labor of love, but it can take a toll.

For spouses/care partners/family members, the decreasing physical and cognitive abilities and overall mental health of their loved ones statistically results in decreased likelihood of them leaving the house, connecting with friends and undertaking their own self-care, which in turn leads to a 5x increase in physical and psychological deterioration of the spouse/care partner/family member.

The progressive trajectory of Parkinson’s means that inevitably there will come a time when their safety and well-being may not be best managed in a home setting. Additionally, the decreasing physical and cognitive abilities of their loved one can compromise the health and/or safety of the care partner. Unfortunately all too often a care partner feels like they are not doing "enough" to keep their loved one content, safe, healthy, etc even though they themselves are struggling physically, mentally, and emotionally.

This program will address the practical, psychosocial, mental and physical health needs and subsequent quality of life issues for both the spouse/care partner/family member AND the person with Parkinson's.