Caregiving and Alzheimer’s DiseasePosted by Medicare Made Clear
By Dr. Jamie Huysman, Vice President, UnitedHealthcare
November is both National Family Caregivers Month and National Alzheimer’s Disease Awareness Month—two observances that go hand-in-hand.
Over 5 million Americans have Alzheimer’s disease today, according to the Alzheimer’s Association’s report “2013 Alzheimer’s Disease Facts and Figures.”
The report also points out that there over 15 million Alzheimer’s and dementia caregivers in the United States, and that the toll on caregivers is significant. Here are a few facts about caregivers from the report:
- In 2012, 15.4 million family and friends provided 17.5 billion hours of unpaid care to those with Alzheimer’s and other dementias.
- More than 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high; more than one-third report symptoms of depression.
- Due to the physical and emotional toll of caregiving, Alzheimer’s and dementia caregivers had $9.1 billion in additional health care costs of their own in 2012.
This calls on each of us to be especially mindful about supporting caregivers whose loved ones have Alzheimer’s disease or dementia—not just in November, but always.
It is also a clear message to caregivers to approach their role thoughtfully and deliberately, as well as lovingly, so that they may “do good and be well.” The rest of this article gives tips for how to do this.
Three “I’s” For Caregivers
A diagnosis of Alzheimer’s disease will forever change the life of the person diagnosed and of those who become caregivers. Fear, anger, horror, resistance, denial, detachment—these are all common human emotions that may arise while trying to adjust to the new reality.
The Three “I’s” For Caregivers can help you get and keep some ground under your feet in your role.
- Become Informed. Find out all you can about Alzheimer‘s disease, your loved one’s specific case and the recommended treatment. Look for local resources for you and your loved one. If you need training to perform certain procedures, make sure it is provided to you. There is a provision in the Affordable Care Act that addresses this.
- Become Involved. Advocate for your loved one. Make sure that your loved one’s medical team knows who you are. Keep their phone numbers handy, and make sure they have yours.
- Become Inspired. Find a local support group where you can be free to share your feelings about your loved one’s illness and about your caregiving experience. You may find that you’re not alone and that others may have helpful ideas for dealing with things you may find challenging.
The Fourth “I”
The fourth “I” may be the most important one to remember throughout your caregiving journey. The fourth “I” is about you: Become Invigorated. Or as I like to put it, “Take your oxygen first!”
Your basic wellbeing must come first in order for you to be an effective caregiver. Your wellbeing can help create a calm and safe environment for your loved one, and for the rest of the family, as each of you navigates the journey you share.
The following will help you protect your health and wellbeing while caring for a loved one with Alzheimer’s disease:
- Remember the acronym, HALT. Don’t get too Hungry, Angry, Lonely or Tired. It’s easy to forget to give yourself the basics when you are focused 24/7 on your loved one. Try to be attentive to your needs and to getting them filled.
- Ask for help. Friends and family may be eager to assist you and not know how to. Take the initiative and ask. Even seemingly little things taken off your plate can give you some relief, such as doing laundry, going to the store or giving you an hour to yourself.
- Do not isolate. Make time for your friends and the activities you enjoy. Remaining socially active, without guilt, is a gift you give yourself.
- Focus on compassion. Caregiving is a sacred duty. It’s an ultimate act of love. Be content with doing the best you can. Expecting perfection—from yourself, your loved one or others—is a trap that is best avoided.
The Journey Ahead
November is a beautiful gateway month for so many wonderful events. The leaves are turning in many parts of the country, and the harvest is upon us. Soon the warmth and spiciness of the holidays will fill the air and our hearts.
These events are fertile ground for nurturing the gratitude and abundance that is symbolized by the American Thanksgiving tradition. I invite you to relish these feelings and to look within for the gifts your caregiving experience may offer. In caring for another, you may find you learn more about caring for and loving yourself.
For more information, contact the Medicare helpline 24 hours a day, seven days a week at 1-800-MEDICARE (1-800-633-4227), TTY 1-877-486-2048. If you have questions about Medicare Made Clear, call 1-877-619-5582, TTY 711, 8 a.m. – 8 p.m. local time, seven days a week.
Caregiver Action Network: Get information and resources for caregivers.
Alzheimer’s Association: Learn about Alzheimer’s disease, its treatment and current research.
Medicare.gov: Visit the official government website for Medicare.