Caregiver Centered Care

If you know what it’s like to feel exasperated or ignored in your role as a family caregiver, you’ll want to catch this episode and chime in on the dialogue surrounding what’s being coined as caregiver centered care. Sometimes we think quality of life for someone living with a progressive diagnosis is simply related to where they’re at in the stage of their illness. But honestly, it’s impacted by so many other factors than just disease progression. Namely, their relationships with family and friends who often also serve in the role as a care provider. On this episode, we’re going to look at the concept of person-centered care and projecting it into a support model for family caregivers.

All barriers are surmountable with information and understanding. We can work cooperatively and collaboratively together so that all caregivers can feel supported.

Dr. Jasneet Parmar

We’re talking today on Life with Dementia with guest, Dr. Jasneet Parmar. Dr. Parmar oversees the Specialized Geriatrics Program with Covenant Health; serves as the Medical Lead for Home Living & Transitions with AHS EZ Continuing Care; and is also an Associate Professor in the Department of Family Medicine at the University of Alberta. She has led and contributed to multiple research projects all focused on how we can better support caregivers and I think you’ll find her message inspiring and encouraging.

Building communities of care centered around caregivers requires cooperation and collaboration amongst all stakeholders: health care providers, community organizations, caregivers.  Once you understand the overarching caregiving goals (such as “keep mom in her own home as long as possible), you can drill down on specific caregiver needs to allow the goals to be realized.  We need to work to help family caregivers identify their personalized goals and needs. To make that happen, there are 6 different areas that need to be addressed. Dr. Parmar has outlined these focus areas in the Caregiver Centered Care Competency Framework. These competency domains are the foundation for building supportive communities around caregivers and it shouldn’t surprise you then that our action steps revolve around that.

Action Steps

  1. Recognizing caregivers:Family caregivers play the biggest role in the health care system of providing support and care for patients. We need to recognize their enormous contribution and the reliance on their role to sustain the health care system.
  2. Communicating with caregivers:The major need of caregivers is information – lots of information is needed throughout the entire journey. Providing timely and topical information is critical to success in the caregiving journey, and enables caregivers to provide excellent care.
  3. Partnering with caregivers: Caregivers are so important to directing care and making informed decisions. They need to be consulted and brought in to the discussions as equal partners at the table.
  4. Fostering resilience:Health care providers need to facilitate the conversation with caregivers to help them identify their needs and goals, so that the focus can then shift to meeting those needs.
  5. System navigation and support:Helping caregivers find resources and service providers to assist them meet their needs. There are two important aspects to this: sustaining the care provision and looking after their own health and wellness needs.
  6. Organization support: We must enhance the culture and context of care in society. The important stakeholders (be it government, health care system, community organizations) need to be empowered to help family caregivers provide support and care.

That last action step for us today is around understanding barriers so that we can more effectively integrate care amongst caregivers, community organizations, and health care providers.  Many of the steps just listed above, will assist with reducing barriers in accessing care for family care providers. We also need to support each other to be able to support caregivers. And with that, I’ll leave you with a message of hope from Dr. Parmar:  All barriers are surmountable with information and understanding. We can work cooperatively and collaboratively together so that all caregivers can feel supported.

Thank you for joining us on Life With Dementia, the solution-driven podcast sharing personal stories, relevant research, and practical tips for living well with dementia. 

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Show Notes:

Life with Dementia podcast is a proud member of The Alberta Podcast Network, powered by ATB.

Photo by Dario Valenzuela on Unsplash

Podcast episode music by Blue Dot Sessions “OneEightFour”