More than 15 million Americans provide unpaid care for people with Alzheimer's disease and other dementias. These caregivers are the unsung heroes of our generation, spending literally billions of unpaid hours caring for those who have lost their mental and physical abilities to a disease that currently has no treatment or cure.
As November marks National Caregiver Month and National Alzheimer's Disease Awareness Month, it is an important time to recognize the selflessness and dedication of Alzheimer's caretakers. As the director of Family and Community Services at Banner Alzheimer's Institute, I work every day with Alzheimer's patients and their families, and there are several trends I see that are important for everyone to be aware of, whether or not you have firsthand experience with Alzheimer's.
1. Caregivers are reluctant to ask family and friends for help
Caregivers often think they can handle everything on their own, and don't always feel comfortable asking friends and family for help. However, the role of caregiving can be exhausting, and can truly deplete a person if they don't have help. So, if you know someone who is an Alzheimer's caregiver, ask them specifically how you can help. Or perhaps you can make a specific suggestion like offering to assist with grocery shopping or giving the caregiver a break by offering to spend a few hours with the person with dementia every Sunday.
2. Caregivers don't care for themselves
Caring for a loved one with Alzheimer's can take a devastating toll on the caregiver. Stressed with the full-time responsibilities of tending to another, caregivers often put their own health needs aside. Nearly 60 percent of Alzheimer's and dementia caregivers rate the emotional stress as high or very high according to the Alzheimer's Association's 2015 Facts and Figures Report. Additionally, caregiving can take a toll on physical health leading to premature death- particularly in older spousal caregivers (age 66-96) who experience high levels of stress. If you know an Alzheimer's caregiver, encourage them to keep up with their self-care and help them realize that if they don't, it may interfere with their goal of providing care in or out of the home.
3. Caregivers need ongoing education and different types of help as the disease changes
Because caregivers are often close family members of the person with Alzheimer's or dementia, they may believe they know best when it comes to caring for their loved one. However, Alzheimer's care can become extremely difficult and there are special skills and strategies caregivers can learn to make things easier. Caregivers should try to participate in ongoing education -- whether it's a monthly support group, workshop or an online webinar -- to stay informed as the disease progresses and different kinds of help become needed. For example, caregivers may need to learn new strategies to communicate if the Alzheimer's patient becomes unable to speak, or they may need to learn how to accommodate food preparation so loved ones can eat independently. As a friend of a caregiver, a great way to help out would be to attend an educational session and report back, or, better yet, offer to take over so the caregiver can attend.
4. Caregivers need to know that what they do matters
Culturally, caregivers aren't often recognized or thanked, and the Alzheimer's patients they care for may not be able to express their deep appreciation. Caregivers need to hear verbal affirmations from their family, friends, coworkers, and even professionals like social workers or physicians, to reinforce that they are doing a great job and that their hard work is not overlooked. Even just a hug or an open ear can go a long way for a caregiver who is under a lot of stress. If it weren't for the millions of family members who provide this care, the cost of Alzheimer's care in America would become devastating, and the quality of care would plummet.
5. Caregivers are very interested in finding solutions to the disease
Because caregivers have experienced the hardship and devastation of Alzheimer's, they are very proactive when it comes to helping find a solution. One way caregivers are getting involved is by joining the Alzheimer's Prevention Registry. The Registry is an online community of people dedicated to ending Alzheimer's before another generation is lost. Members receive email updates on the latest Alzheimer's research, brain health and caregiving tips, as well as clinical trial volunteer opportunities that they may be eligible to participate in. Researchers are able to tap this community of engaged individuals to help fill prevention studies and trials. You may even want to join the Registry yourself to show the depth of your support for a dedicated Alzheimer's caregiver.