I had a visit this past week from a former hospital CEO who had to leave her position in order to take care of her ailing parents in another state. (I am learning that this is not a unique situation. In fact, this was the reason Bob DeMarco started www.alzheimersreadingroom.com ).
She shared with me the frustrations and challenges of being a caregiver. We discussed the demographics showing how most of us will be caregivers someday; how there is no resource to go to for assistance and guidance; how disruptive it is moving a parent or a caregiver; and, how difficult and exhausting the entire process can be.
She said she asked herself, “What do I do now?” And this all came from someone within the healthcare industry -- someone who understands the system! This doesn’t give me the “warm fuzzies” when thinking about becoming a caregiver.
As The Patterson Foundation has continued its exploration to transform an area within the dementia continuum of care, we continue to learn about the importance of the caregiver. This doesn't mean that caregiving is only for people with dementia. It can be for anyone who needs help performing daily activities. But dementia is the overwhelming driver for the need for a caregiver.
According to statistics which www.caregivercentral.org is capturing, about 70 percent of caregivers in their service area are for patients with dementia. This tells us that we are on the right track, and it also tells us that by studying caregiver needs, we will not only transform a gap in the dementia continuum, but we may also be able to help a broader spectrum of caregivers. After all, these caregivers ask the same question: “What do I do now?”
Being a caregiver is an incredible responsibility and isn’t usually one we plan for (outside of having children). Couple this with how our healthcare system operates, and the experience can be challenging.
“What do I do now?” This is the question I keep hearing and keep coming back to. If we could answer this question, and do so in a manner which is easily accessible and understood, we just may be able to transform a gap.
We will be in San Francisco for American Society on Aging conference at the end of April. We are presenting a session, "Transforming the Management of the Dementia Continuum of Care, on Friday, April 29 at 1:00 pm ptd. During this session, we are going to share our findings with the audience, but more importantly to us, we are going to engage the attendees in a discussion to guide our direction and focus. If you are going to be in San Francisco, please come by and give us your thoughts.
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