Caring For Dementia Caregivers
[ photo by Streetwindy ]
Time spent caring for someone with dementia at home.
I read an interesting research letter published on JAMAnetwork.com. The study was done out of Mount Sinai School of Medicine. Researchers retrospectively looked at data collected from 2006 to 2016. This data compared the amount of time family caregivers spent caring for someone with dementia in the last 10 years of their lives with the amount of time that was spent providing care to loved ones without dementia.
It came as no surprise to me that more time was spent providing care to those with dementia than to those without. The time difference, however, was quite a shock. The dementia caregiver spent three times as many total hours of care in the last 10 years of life than the non-dementia caregiver. I think about my own family and how much time my mom spent caring for my grandma leading up to her death and then the amount of time she spent caring for my grandpa before he passed away. Neither of them had dementia. Imagining my mom tripling that amount of time is nearly unfathomable.
The study looked at the rate of increase of caregiver hours with each year over a ten year span. For those with dementia, the care hours increased fairly steadily in each year by a range of 18-41%, averaging around 33 total hours per week. For the families of someone without dementia, the care hours provided each week remained fairly low until the last 1-2 years of life. In the last 1-2 years, the total weekly care hours nearly tripled.
The study further broke down the care hours by who is providing the care. For those people with dementia who were married, the spouse was the primary dementia caregiver providing the majority of the care hours for the entire decade before the death of the loved one. This was generally the case for those both with and without dementia. For those with dementia who were not married, an adult child (or adult children) was the main dementia caregiver providing 50% of the total caregiving hours compared to 41% of the caregiving hours for those without dementia.
Significant amount of time required to be aging parent or dementia caregiver.
So what does all this mean? Well, it shows that taking care of our aging family members in the latter years of their lives takes a lot of time regardless of a dementia diagnosis or not. The average number of care hours per week in the final year of life for someone with dementia is right around 34 hours and in the final year of someone without dementia, it is still around 22 hours! Those hours can include everything from managing and administering medications to chauffeuring to appointments and visits with friends or family. If the spouse is still living, that is a lot of added time and pressure on her or him. If that loved one is widowed or single, that responsibility falls to the adult child.
As I mentioned earlier, I saw that responsibility fall to my mom. Fortunately, she has two sisters that were able to help reduce some of that load. As an adult child to my own parents, I am starting to see areas where they might need additional help. When you are trying to raise your own young family and work your day job, finding those additional hours can be tough!
When I read this study and saw some actual numbers, it reminded me of a few things. The first thing was that we must provide relief and emotional support to those spouses that are shouldering the burden of caring for their loved one, both with and without dementia. This can be a lonely time for the caregiving spouse. Reach out to him or her, visit with that person. Even offer to give that caregiver a break.
If it is an adult child bearing the load of providing the care, do the same. Offer to give him or her some help. If you are a sibling of that adult child providing the care, don't just assume she does not need help just because she has always taken care of mom or dad and handled it well. She likely needs some help, so step up and help her out.
Help for dementia caregivers.
Finally, it reminded me of the importance of seeking and finding all of the possible help available to those that are caring for their loved one. There are resources available that can help with managing some of those hours. Sometimes these are paid for through Medicare or Medicaid benefits. There are benefits available through the Department of Veterans Affairs, if that loved one qualifies. Sometimes we have to pay for those services ourselves, but we just do not know how to go about setting them up. Or maybe we need help deciding if it is the right time to enroll mom or dad in memory care. Where do we look to find those resources? How do we arrange and pay for those services? This is where I can step in to help out both the dementia caregiver and aging parent caregiver. It does not always take a life changing injury, diagnosis or hospitalization to realize we need help navigating the best possible route to getting care for our loved ones.
REFERENCES:
As the primary dementia caregiver or aging parent caregiver what resources have helped you in your care journey? Please share in the Comment section.
© 2021 Jessica Kluetz, DO