Reframing & ReDesigning
the Caregiver Experience
Presentation
First Let's Acknowledge the Complexity
"A challenge is dynamically complex when cause and effect are interdependent and far apart in space and time; such challenges cannot successfully be addressed piece by piece, but only by seeing the system as a whole. A challenge is socially complex when the actors involved have different perspectives and interests; such challenges cannot successfully be addressed by experts or authorities, but only with the engagement of the actors themselves. And a challenge is generatively complex when its future is fundamentally unfamiliar and undetermined; such challenges cannot successfully be addressed by applying “best practice” solutions from the past, but only by growing new, 'next practice' solutions."
Kahane, Adam. Power and Love: A Theory and Practice of Social Change (p. 6). Berrett-Koehler Publishers.
If you need any further background
On the hidden costs of caring click here.
From Surviving to Thriving
All of the stories are tales of Survival and Struggle or are stories of Thriving and Purpose.
Or, they take us on a journey of transformation from Surviving to Thriving.
These are just a couple of vivid stories that illustrate the caregiver's "Journey from Surviving to Thriving,"
Both these videos are produced by academic researchers who are redefining health care from a family informal caregivers perspective.
I suggest you only watch Amma's Story from start to 4:00 min
The story on the right was created by Mike Lang producer of the Being There series who has created over 50 caregiver stories.
Mike is heavily involved in telling powerful stories in a health care setting. In addition to his documentary filmmaking work, Mike is a health narrative researcher and doctoral student at the University of Calgary, focusing on Digital Storytelling in a health and wellness context. Over the past 8 years he has worked with hundreds of patients, family members and health care providers, from across all injury and illness groups, to create Digital Stories of their experiences. Mike’s work is founded on the understanding that good stories, well told, can change the very fabric of modern health care systems. Stories are a common language; they are the key to understanding what it means to live well in the midst of illness or injury. Note: Mike also uses FCPX (on the MAC) and edits the story live with the Caregiver.
The story on the left was produced by Lekshmy Parameswaran who you will hear more from below.
What the Stories Tell Us
Stories are important. Years ago I spent 14 days in Dominican Republic listening to Street Kids telling me their struggles and their dreams. That helped me see the patterns, the transitional moments from begging to self-sufficiency, from self sufficiency to collaboration from collaboration to finally achieving their dreams. The street kids needed help at various stages, across the thresholds.
In these stories there are patterns and thresholds too.
1. Most of us are blindsided by our role as family caregivers. In a world where we contribute to RRSP's and pay considerable attention to our financial futures, and where every other culture sees looking after its elders as a normal part of aging, we seem totally unprepared as families and as a culture.
2. Family Informal Caregivers are the touch points for the unwell elder at every point in the social support and health care systems. And yet are invisible and unsupported by these same systems.
3. Through this process we are denied personal agency and yet our health and wellbeing requires a sense of personal agency, or sense of control. The subjective awareness of initiating, executing, and controlling our own volitional actions in the world.
Choice in Caregiving – Reframing Your Views
A recent summary of Caregiving in the United States suggests that close to 50% of caregivers feel like they had no choice in becoming a caregiver. To make matters worse, many of these people would have had to make financial and personal sacrifices to perform the caregiving role.
There are also many cases where you may have a choice – it’s just not much of one.
For example, you might have to choose between caregiving and essentially abandoning your aging parent, knowing that their health would suffer as a consequence. Some people do take the abandonment option, unfortunately. But, for most of us, it simply isn’t even worth considering.
As a result, many people find themselves pushed into caregiving. And this pattern may have some significant effects on the caregiving relationship and on the health of the caregiver themselves.
For example, research shows that caregivers who aren’t given a choice are at an increased risk for stress, including emotional stress. This may promote other negative outcomes, including physical health issues.
The lack of choice may also harm the relationship between the caregiver and their career, sparking resentment and perhaps conflict.
In a similar way, the lack of choice could affect other relationships. For example, it could lead to resentment toward siblings and family friends, especially if they provide little support to the caregiver.
Finally, the lack of choice can mean that caregivers are dropped into their roles suddenly. As such, they may have had little time to prepare mentally or practically for the role of caregiving. This could make them less effective as a caregiver and may mean they struggle more with some of the complex components of caregiving.
It’s clear that a lack of choice can have significant impacts. But, what’s the answer? Link to full article.
Angela, 56, spoke in a defeated tone: "I have no choice about caring for my mom. Everyone's depending on me. I feel trapped." She sounded more resigned than angry.
Feel Empowered as a Caregiver
Caregivers can avoid bitterness and burnout by waking up to the options within their reach
by Barry J. Jacobs, AARP
Angela's words and manner troubled me. In my 22 years of practice as a psychologist, I've heard many family caregivers use nearly identical language to describe their sense of hopelessness — stuck in duties they didn't choose, burdened by increasing demands, helpless to make changes. Worse, they tend to reject others' well-meaning advice as futile.
It's as if they feel fated to continue what they've been doing, no matter how much they're suffering. To me, they seem not just mired in their predicament but overly pessimistic — and very likely depressed.
There's no question that caregiving can be arduous. But in the past 40 years social scientists have found that people handle adversity better when they believe they have the power to make choices about their circumstances. We say these people have a sense of "agency": They feel they can be agents of positive change on behalf of their loved ones — and themselves. By contrast, people who think they lack the power of choice are likelier to drag themselves through the day feeling demoralized and diminished.
When University of Pittsburgh social psychologist Richard Schulz analyzed a 2009 National Alliance for Caregiving/AARP survey of nearly 1,400 caregivers, he found that 44 percent of respondents had reported "a lack of choice in taking on the caregiving role." These caregivers had higher levels of "emotional stress, physical strain and negative health impacts" than those who felt they could choose whether and how they engaged in caregiving.
No surprise, then, that my best advice to Angela was to increase her capacity to recognize and exercise available choices. For caregivers in general (and for Angela in particular), that one small act of willful awareness usually spells the difference between feeling steam-rollered by caregiving and actively getting ahead of its pressures.
Beyond Hedonia: A Theoretical Reframing of Caregiver Well-Being
Victoria R. Marino and William E. Haley University of South Florida David L. Roth Johns Hopkins University
Translational Issues in Psychological Science © 2017 American Psychological Association 2017,
Vol. 3, No. 4, 400 – 409 2332-2136/17/
Research documenting the impact of family caregiving often portrays it as an overwhelmingly stressful experience that typically leads to poor psychological outcomes. While caregiving has the potential to produce important negative psychological effects among subgroups of highly strained caregivers, most caregivers are resilient and report personal growth and psychological benefits from their experiences.
Reviews and meta-analyses show that caregivers have higher levels of depressive symptoms than do noncaregivers. However, the magnitudes of these effects are much smaller in representative, population based studies than in projects using clinical or convenience samples. Studies addressing benefits of caregiving, such as positive affect and personal growth, have received far less emphasis than research focused on burden and stress.
A reframing of caregiver well-being is needed to foster a more balanced view of the caregiving experience. This review considers hedonia (levels of positive and negative affect) and eudaimonia (personal growth) as equally important constructs of caregiver well-being. Caregiving research has largely overlooked eudaimonic concepts in its conceptualization of caregiver well-being.
An increased emphasis on understanding and measuring eudaimonic well-being, beyond the current heavy emphasis on stress, burden, and hedonic well-being, could lead to a more balanced and complete view of the caregiving experience.
Lekshmy Parameswaran is a designer who has been working in the area of health and care for almost two decades. In 2008 a specialist design consultancy working with a wide variety of international players within the health and care sector.
In 2017 they co-founded The Care Lab, a collaborative platform that uses human-centred design practices to rethink and redesign care models and solutions for our societies and care systems. Their vision of care is an equitable, proactive and compassionate experience that is widely accessible. It also forms an integral part of everyday life, from birth to death.
She holds a Master’s degree in Engineering from Cambridge University and a Master of Arts from the Royal College of Art in London.
There are many good insights in Lekshmy's TED talk. She brings together the ideas of many current thought leaders. Certainly, there are structural changes that will take many years to implement. But it is also clear from the preceding examples that we must focus on the positive steps that we can take right now. What fits with my reflected experience and with current progressive thought leaders is that there are two clear objectives that we can pursue as themes to our programs and offerings that will improve the lives of informal family caregivers now and into the future.
Normalize Caregiving within Families and Society
Becoming a family informal caregiver comes as a surprise to most of us. Certainly few of us ever dreamt of becoming one. Yet every one of us will become either a caregiver or cared for. It must again become an expectation that is built into society through our education and workplaces. Partnering, doing outreach and promoting caregiving opportunities to high school and youth groups is important. Reaching out to businesses and inviting them to discuss their caregiver programs within the workplace and becoming a theme at each of our Empathrive Events.
As a strategic directive we can look for other opportunities to normalize elder care by promoting and developing supportive programs and systems. Transforming family caregiving from a unexpected and un-welcomed experience into a treasured and supported part of our life journey. Promoting a vision that looks more like the early caregiving experience (raising a child) within this culture.
Normalizing caregiving beginning in York Region and potentially across Canada will have significant psychological implications. Families that prepare for the elder-care journey have many advantages over families that remain in denial until an accident, fall or significant crisis.
Develop Personal Agency
Empower and Build Capacity
Supporting Family Informal Caregiver choice. In so many structural and cultural ways there is the perception of invisibility and very little choice for informal caregivers. This must change through Normalizing Caregiving and enhancing Personal Agency. Both together have the potential to transform the family caregiving (carer) experience and improve the quality of elder care in our communities. All our Support Circles, Exceptional Activities and Emapthrive Award Events must promote and support these objectives.
It is not possible to thrive as a caregiver without personal agency. Through personal agency we maintain our identities as more than only caring for another person. We become empowered to communicate, express and share our story so it might assist others as they grapple with social isolation and create an integrated network of care and support around them
Ultimately, family informal caregiving can become a vital and well respected role in our society and a well supported choice for those who welcome a closer relationship with their loved ones through the process of aging right through to death.