Collaborating for caregiver support

Grace Ferrari and John Parkhurst
Grace Ferrari and John Parkhurst

Parkinson Society Canada (PSC), Alzheimer Society Canada and the Multiple Sclerosis Society of Canada are working together to develop a series of webinars specifically for caregivers supporting people living with any of the three neurological conditions. And who better to advise them of what would be most helpful to these caregivers, than the caregivers themselves.

“We recognize that the caregivers in our three communities have a lot in common,” says Grace Ferrari, Manager, Professional and Public Education at PSC. “And working in a partnership means we can make the most of our resources and our shared knowledge. Together, we can accomplish so much more than any of us can do on our own. We began this process by asking caregivers what information they needed and valued the most.”

Step one was a caregiver survey

An online caregiver survey, conducted between mid-March and the end of April, was developed and promoted by the three organizations to determine what information and topics were important and interesting to caregivers. We asked about priorities, navigating the health care system and other caregiver challenges and about 380 people completed the survey. Respondents were evenly distributed from among the three charities.

More than 55 per cent of responding caregivers are between the ages of 35 and 64, an age when many people are juggling the demands of multiple responsibilities, including working while caring for young children, and managing many other family demands.  Respondents confirmed that loss of income can put a financial strain on their household. Caregivers are often forced to choose between being there for their loved one’s care or being the source of income for the family. These are some of the people for which Parkinson Society Canada has been advocating for extended compassionate care benefits.   We also advocate with other partners, such as the Canadian Medical Association, for broader senior health care access and support within a National Seniors Strategy. And the survey confirmed that a large number of seniors are caring for seniors, reporting that sometimes they are feeling like they have given up their own retirement plans and dreams.  Almost 40 per cent of the survey caregivers, or two out of five responders, were 65 or older and more than 70 per cent were caring for a spouse or partner. Three of every four caregivers surveyed are women.

The survey respondents were receptive to a webinar with more than 83 per cent indicating they would participate in a webinar offering caregiver resources and information. What topics did they think the webinar should address? The top four topics, in order, were:

  1. Mental health and stress;
  2. Finding support in the health and social services system;
  3. Future care planning, and
  4. Financial support and planning.

The respondents’ comments also offered a rich commentary on their lives and challenges as caregivers.  “The caregiver role changes as neurological diseases progress. There is a delicate balance to care for someone and at the same time to help them maintain their independence,” says Ferrari. “As the caregiver, you have to keep adapting to the needs of your loved one, which usually steadily increase with the advancing stages of the disease.”

Step two: A “Think Tank” to distill and solidify the survey results

Nine people, two caregivers and one staff member from each organization, were guided by a facilitator for three hours, to further consider the survey results and identify the key topics for the caregiver education webinars, as well as offer other ideas for future partnership caregiver projects.  A complementary “Think Tank” was held in French in Montreal.

“It was a very open and participatory session,” says John Parkhurst, care partner for his wife Margot Bartlett for 25 years, and Parkinson Society Canada representative at the meeting. “The struggles of caregivers are a huge problem that is often in the background and this needs to be addressed. Many have lost any sense of their own life and there can be so many unknowns. It can be very isolating. Having some options, some supports, even if you never access them, is important.”

Ferrari found some of the Think Tank sharing very moving. “The demands and uncertainty of caring for a person with neurological conditions puts caregivers under extreme stress,” she says. “Time, finances, navigating the system, other family and work demands and the need for respite were all openly discussed, and now we have a really well-defined set of priority topics for developing information sessions to meet caregiver needs.”


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What’s next?

With the input from caregivers, the three health charity organizations will now develop three national webinars (two in English and one in French) to be delivered in the fall and winter of 2015-2016. These first few webinars will focus on caregiver mental health and navigating the health and social services systems. Webinars are a cost-effective way of delivering education nationally, without time or location restrictions. They do require a computer and internet connection to participate. Participants can listen to the speakers as well as view videos, slides or other content on a screen. The audience can ask questions in real-time through an instant messaging tool that is part of the webinar technology. The webinars will also be available as a recording for those who wish to access the session at a later date or time.

Other suggestions from the caregivers think tank included establishing an ongoing pan-Canadian caregiver advisory group and a newsletter specifically for caregivers. These, and other suggestions, will be considered by the participating partners.

Other caregiver resources

Parkinson Society Canada has a number of resources for caregivers on its website. The Caregiver Network website also houses webinars that are specific to caregivers and/or specific diseases.

Celebrate the efforts of a caregiver you know

Parkinson Society Canada is proud to partner with Canada Cares to recognize family and professional care givers. You may want to check out the Canada Cares website and nominate your favourite caregiver for a Canada Cares 2015 Award. Nominations must be received by September 18 and all the details can be found at www.canadacares.org.

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