Assessing the Family Caregiver Assessments
Family caregiver assessments need to support family caregivers so they feel safe saying what they think and feel.
About 14 years ago, I completed a CliftonStrengths assessment, which helps you pinpoint your strengths.
The assessment was so insightful that I still remember what I learned about my strengths. It was so comforting because now I remind myself that my strengths will serve me during a tough time. We include a CliftonStrengths assessment and follow-up coaching session in our Certified Caregiving Specialist and Consultant training programs.
Assessments can create a powerful experience. For more than 20 years, I’ve been working to develop family caregiver assessments that deliver insights and comfort for family caregivers.
Two Questions
A conversation I had with a student in our Certified Caregiving Consultant training yesterday made me realize that I created the first of my library of family caregiver assessments in 2000. When family caregivers and former family caregivers joined the online caregiving community I managed at that time, they answered two questions:
What are your top three wishes
What are your top three challenges
The write-in answers to those two questions helped me create so many events and programs to better serve family caregivers. The answers were enlightening for me and for those family caregivers and former family caregivers. How often does anyone ask a family caregiver those two questions? I think professionals who serve family caregivers miss a huge opportunity when they don’t.
The CCC student asked his first caregiving client those two questions because our CCC training program prompted him to ask. The answers (respite and support) helped that student then work effectively with his client.
I never thought of those two questions as a family caregiver assessment. I do now.
Tracking Family Caregiver Stress
In 2015, I created my next family caregiver assessment specifically to track family caregiver stress. I realized we needed a way to better understand the stress and its source that affects family caregivers. The simple survey offered incredible insights for me, which I regularly use in my training programs. Completing the assessment offers family caregivers an opportunity to share honestly about their experiences. If you have a moment, I’d love for you to share about your stress and compassion fatigue in our surveys.
In 2018, I started thinking about a more expansive assessment I could develop to use with family caregivers. An organization in the caregiving space that develops and implements caregiving assessments invited me to a demo of its tool; I was considering licensing this assessment for the Certified Caregiving Consultants to use. I really didn’t like that tool; it was long, restrictive, included only closed-ended questions and didn’t create a space for me to share honestly about my challenges helping my parents.
After that demo, I began to develop our Caregiving Wheels, which now number more than 60, and are used by our program grads, including Certified Caregiving Consultants, Facilitators and Specialists. I include one of our Caregiving Wheels, below:
Assessing to Create an Understanding
It wasn’t until 2021 that I figured out the right assessment I could offer. I attended a virtual presentation by Deborah Riegel, an executive coach, who suggested we modify an assessment tool used for newborns (Apgar) to better understand employees.
That is brilliant, I thought.
I then modified her suggestions to create an 8-question assessment tool for family caregivers. The questions are:
What gives you energy?
What takes up too much time for you right now?
What helps you when you feel challenged?
What helps you cope?
Who and what do you love?
What gives you purpose and meaning?
What would help you today, tomorrow and in the future?
What gives you peace?
We integrated this 8-question assessment, one of our Conversational Assessment, in our Certified Caregiving Consultant (CCC) and Comfort Care Family Coach (CCFC) training in the summer of 2021.
Our goals in using the tool are to create a space for family caregivers to take time to reflect, offer an opportunity for family caregivers to say what they think and feel, and nourish an insightful, comforting conversation. We regularly monitor the effectiveness of using this tool with family caregivers by asking family caregivers about their experience with the assessment.
Other Family Caregiver Assessments
Earlier this month, I learned about an event I could attend to learn about caregiving assessment tools that other organizations use. I immediately registered to join the virtual meeting; it’s so helpful to understand what works and what I can improve.
I left that virtual meeting last week feeling completely frustrated and, honestly, somewhat horrified. During the meeting, individuals from a national caregiving organization, a state department on aging and a local social service agency shared their tools.
Each shared a version of a similar process: A family caregiver reports to the agency their assessment of how the caree is doing and their ability to provide care.
These aren’t family caregiver assessments.
They are more like an exam, a test, an evaluation, a way to funnel carees into services.
These are reporting tools.
The representative from the state organization (and who also works within a medical center) shared that they complete the assessment with the family caregiver and the caree in the same room at the same time. When that kind of tool is completed with both family caregiver and caree, a family caregiver will never share honestly how they are doing. We hold our tongue in front of our caree. We also need the gift of private space to speak truthfully.
In addition, this state may require family caregivers to complete more than one assessment depending on which program may be appropriate for the caree. Different funding sources could mean separate assessments. The burden these agencies create for the family caregiver to get help left me aghast.
None of these individuals shared how they track family caregiver stress. I did ask a clarifying question during the meeting about how they capture family caregiver stress but my question wasn’t answered.
The tools they are shared are a way for the family caregiver to do the work for the agency. I get it — that has to happen in an assessment of a caree, a completely separate experience and assessment. But it’s wrong to see the family caregiver as only important in the context of sharing details about the caree and the caregiving situation. We are doing our best to integrate our caregiving role into our life; an assessment of family caregivers needs to recognize that challenge.
As assessment that uses us to assess the caree adds to our frustration. That kind of transactional experience just adds to our weariness. It’s also traumatic to be told we are completing a caregiver assessment only to just report on our caree in order to determine if our caree qualifies for services. What about services to help us? We need more than a respite program, which sometimes just isn’t logical or feasible for us to use.
Those tools miss the mark.
Help Us Understand Our Needs
A family caregiver assessment is about the family caregiver, the person, that person’s needs.
One of the presenters shared that they use the tool to “support the family caregiver in their roles.” We need an assessment that offers insights and help to support us in our lives! Our life is more than our caregiving experience. We are multi-dimension individuals with gifts and talents we want to use and goals we deserve to pursue.
I found this to be a really frustrating webinar because we didn't learn about family caregiver assessments. We learned how to use family caregivers as reporting tools to better understand the needs of the caree.
An effective family caregiver assessment leads the family caregiver to an insight about the kind of help and support they need.
Narcissism Within the System
One of the 17 Caregiving Systems we manage is Narcissism. These tools, which use family caregivers to serve the organization and the system, are an example of narcissism.
The tools work for the system because the system has an easier way of funneling carees into programs and services. It also ensures that assessment experience is controlled; the tool ensures that only what the system needs to know is captured. What a family caregiver needs to share about their stress, their challenges and their needs is simply ignored.
Let’s Do Better
We need a much better experience.
So, I’d love for you to join me and tell how you’re doing. Join me August 7 at 1 p.m. ET to complete our conversation 8-question assessment during which you tell me how you're doing. We'll complete the assessment in a facilitated group setting. At the close of our meeting, we'll share how you can meet with a Certified Caregiving Consultant to complete a complementary one-on-one assessment for personalized support if you would like.
Before we begin our meeting, we'll ask you to complete a one-minute survey. We'll ask you to complete another one-minute survey as we end our meeting. Our surveys ensure our assessment really helps.
You deserve an assessment experience that gives you insights.
Share Your Experiences
What experiences have you had with a family caregiver assessment?
Resources
We took a Soul Break from Narcissism last week.
Join me Beginning Again After Caregiving Ends course, which happens over 5 days (July 29-August 2). We'll meet for one hour each day to help begin after your personal caregiving experience ends. We'll record each class in case you have to miss one of our daily classes. It’s free!
I really appreciate the way you recognize that we are more than just how well our career is or is not doing, how even if we have no doubt this is the right choice for us, it’s still so so hard. Thank you.
I hear your frustration and was nodding furiously, Denise.
This:
'As assessment that uses us to assess the caree adds to our frustration. That kind of transactional experience just adds to our weariness. It’s also traumatic to be told we are completing a caregiver assessment only to just report on our caree in order to determine if our caree qualifies for services. What about services to help us? We need more than a respite program, which sometimes just isn’t logical or feasible for us to use.'
I'm linking to your 17 Caregiver Systems in my article tomorrow - I hope this will raise greater awareness of ALL the interfaces caregivers deal with, in addition to doing hands-on caring and trying to curate quality moments for their loved one. (The UK system is different but these issues are mirrored here!)