June is Alzheimer’s and Brain Awareness Month and No Bags To Check is going purple with an Alzheimer’s Awareness series dedicated to this important cause and the Alzheimer’s Association’s The Longest Day event on June 21st.
Much of the discussion around Alzheimer's deals with those living with the disease. But the flipside of Alzheimer's is the people who help take care of those living with the disease. Because eventually, people with Alzheimer's will need round-the-clock care.
They will need help eating, going to the bathroom, and getting dressed. Supervision to prevent them from wandering away from home or ensuring they don't fall when walking. And, as the Alzheimer's Association reports, most people with Alzheimer's live at home, leaving the brunt of the caregiving responsibilities to family members. In fact, it's estimated that last year over 17 billion hours of unpaid care was provided, a majority of it by female relatives.
That's a lot of hours. Particularly devoted to doing something that is often physically and emotionally exhausting. Imagine having to help someone get dressed who may be confused as to what's happening and resist every ounce of assistance you're giving them. They don't recognize you anymore or maybe repeat the same question over and over again. No wonder caregiver burnout is becoming such a huge issue.
Estimates from the Family Caregiver Alliance, suggest 20% of family caregivers show signs of depression, with rates potentially as high as 60%. Many caregivers ignore their own physical and mental health needs as they provide extensive care to their family member, putting them at risk for isolation, anxiety, as well as developing their own health problems.
The Alzheimer's Association reports that 11% of women and 5% of men had to stop working to care for a family member with Alzheimer's, and caregivers often have to experience grieving the loss not only their work lives, but other changes, like loss of hobbies, social connections, and the relationships they once shared. Unfortunately, there remains a tremendous amount of stigma around this disease and many experience a lack of support from employers, community organizations, and even medical professionals. To be blunt- that sucks.
One of the many reasons I think it's so important to support the Alzheimer's Association and The Longest Day is its commitment to caregivers. They have a 24-hour hotline to help answer questions and provide support to the 15.5 million unpaid caregivers in the US. They provide training and access to support groups or other resources. Their Alzheimer's Navigator help caregivers create an action plan after diagnosis learn more about getting the emotional, financial, and legal support that they need.
Because support is key. Helping caregivers recognize they don't have to do it alone and providing resources to help them take care of not only a loved one but also themselves is so important. As someone who has worked in long-term care and through my own family experiences, I have seen the devotion and sacrifice caregivers make with their loved one with Alzheimer's, both when they live at home to when families make the difficult choice to pursue long-term care placement. I've also seen the guilt, anger, and stress that this disease brings. Hopefully, someday soon, we can change the trajectory of Alzheimer's for both those living with it and those providing their care.
For stories of caregiving from people who have been there, please be sure to check out these fellow ChicagoNow blogs:
To support the Alzheimer's Association, the world's leading organization in Alzheimer's care, support, and research, and The Longest Day event, click here. If you'd like to donate to my personal page for The Longest Day (thanks!!!), click here. Your support matters.
Wait a minute- isn't this usually a travel blog? You're right, but for the next three weeks I'm dedicating my little internet real estate to this cause that is near and dear to my heart. I hope it encourages people to share information, stories, and support. Be sure to subscribe to the blog so you don't miss a post and you can also follow on Facebook, Twitter, and Pinterest.
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Filed under: Alzheimer's