Alzheimer's Disease and the People Who Care: Support for Our Nation's Caregivers
June 21, 2018 is the summer solstice - the longest day of the year. It is also the day the Alzheimer's Association holds The Longest Day fundraising events around the nation. With 5.6 million Americans diagnosed with Alzheimer's Disease, the impact it has on our families is far-reaching and immense! If you are a caregiver for a person with Alzheimer's Disease, today's blog post will provide you with multiple resources to make your journey a bit easier.
If you are not a caregiver but know someone who is, please share this information and find creative ways you can support them. Please also visit the Alzheimer's Association webpage and find out how you can participate in The Longest Day activities. Your help is needed!
What is Alzheimer's Disease?
Alzheimer's Disease is one of many types of dementia. Dementia is a word that generally describes a constellation of symptoms like changes in memory, thinking abilities (also called cognition) and behavior. Alzheimer's Disease is the most common form of dementia, making up 60-80% of cases. It is often seen in the elderly but is not a normal part of aging. It can occur in people under age 65, when it is called "younger-onset" or "early-onset". A poignant depiction of early-onset Alzheimer's Disease can be seen in the 2015 novel-based movie, "Still Alice" starring Julianne Moore.
Video courtesy of Curzon Artificial Eye
Alzheimer's Disease is a progressive illness, where symptoms worsen over a number of years. At first, symptoms may consist of mild memory loss that leads to repeating statements or struggling to find the right word. Over time, people begin to forget conversations or get lost in familiar places. Eventually, people with Alzheimer's lose the ability to remember the names and faces of family members, to speak, or interact with the environment. Life expectancy after symptoms become noticeable to others is 8 years, though it can be as short as 4 years and as long as 20 years after diagnosis.
Because Alzheimer's has no cure, ongoing research efforts are a necessity to eradicate this disease state.
Numbers to Know
The Alzheimer's Association is the nation's leading volunteer organization leading in Alzheimer's care, support and research. Their mission is:
"To eliminate Alzheimer's Disease through the advancement of research; to provide and enhance care for all affected; and to reduce the risk of dementia through the promotion of brain health. "
Please watch this video they released in 2017 to bring awareness to the scope of the disease, and to highlight the number of voluntary caregivers in America.
Video courtesy of www.Alz.org and actionalz YouTube Channel
There are some other important statistics you should know:
53% of Alzheimer's care recipients live with their caregiver.
11% of Alzheimer's caregivers cut back on their kids' educational funds to provide elder care.
17% of caregivers report their health is poor. In the general population, only 10% make this report.
Nearly half of all caregivers in America are earning less than $50,000 dollars a year - with 62% of African-American caregivers and 61% of Hispanic caregivers being below that mark.
1 in 3 American caregivers say they're doing the job ALONE.
It's clear, the caregivers of America need our help!
Please click HERE to join in the fight
Solutions for Caregivers
"The Essential Guide to Caregiving" by Centennial Health offers excellent resources for Alzheimer's caregivers. This section will highlight some of their top recommendations.
Try to find the treasure - In the book The Gifts of Caregiving by Connie Goldman, a book discussing the hardships and healings of the caregiving process, one caregiver shared how caring for his wife for seven years helped him have a deeper understanding of what it means to love. He says, "In the midst of all I was losing, I began to know love in a way I had never experienced."
Lean on spouse-specific sites, if applicable - Visit sites such as the Well Spouse Association, The Family Caregiver Council, The Family Caregiver Alliance, or the National Alliance for Caregiving to find support groups, in-home help, education, and to learn how one can help with research and advocacy efforts.
Also get familiar with Alzheimer's-specific resources - The Alzheimer's Association, Alzheimer's Connected, and Alzheimer's Foundation of America offer various resources as well. On Alzheimer's Connected, there is a caregiver forum where you can ask questions of the community. The Alzheimer's Foundation of America offers Skype or live-chat services where you can receive counsel and referrals to resources in your area.
Check out The Best Friends Approach to Dementia Care - This book, written by Virginia Bell and David Troxel, discusses how "person-centered care" in Alzheimer's Disease promotes a sense of importance, independence and value in those diagnosed. They share clever methods to help the person who may be worried a caregiver is taking their money, who thinks their spouse is still alive, or who thinks they have to go to work. Learn more at bestfriendsapproach.com.
Learn how to enlist help - There are a host of services potentially available to Alzheimer's caregivers. Some of the professionals that can help your efforts include home health aides, home care aides (to do basic daily tasks, home cleaning and to provide companionship), geriatric care managers, meal service providers, adult day-care facilities, respite service providers, mobility service providers, friends/family and more. Geriatric care managers don't provide healthcare, but they can do in-home evaluations to help find what services your loved one will need.
Manage your goals - Experts urge caregivers not to try to do it all. That's because eventually, the caregiver with the do-it-all attitude will suffer poor health themselves. Try to think of a realistic overall goal and have a specific week-to-week plan, that makes room for your self care.
Make sure to still get good sleep and physical activity - Without good rest, you will not be able to be well and will quickly burn-out. This will leave you and your loved one in a precarious position. Make getting good sleep a priority, try to minimize distractions, take notes before sleep for the next days tasks, and observe good sleep hygiene. Getting away to the gym may not be a common occurrence during certain stages of caregiving. Learn easy exercises you can do in your home or office throughout the day. That way, you'll be able to keep your body strong without having to create a huge time commitment, or set yourself up for disappointment.
Keep track of your successes - Caregiving is a challenging job. Take the time to write down at least one thing you did well as a caregiver - everyday.
Pick up a copy of the Guide at your local Sprouts, or online, to get other helpful tips. Other topics covered include:
Sharing caregiving responsibilities
Managing feelings of guilt
Holding family meetings
Helping those who reject it
Organizing vital documents
Understanding insurance benefits and financial assistance programs
Staying connected and avoiding isolation
Learning time-saving shortcuts
The Alzheimer's Association's "Alzheimer's and Dementia Caregiver Center" provides detailed information on early-, middle- and late-stage caregiving. In early-stage caregiving, one will have to adjust to their new role as a caregiver, learn to accept their loved one's diagnosis, find support for themselves and figure out new necessities, like devising a safety plan. Caregivers in this stage can also benefit from partnering with their loved one to take care of medical documentation and legal/financial issues that will need to be in place down the road. For more information, visit the Alzheimer's and Dementia Caregiver Center site by clicking here.
All-in-all, caregiving is one of the deepest labors of love a person can complete in a lifetime. Please allow yourself to benefit from the wealth of resources available as we continue the fight. Thank you for all you do.
The Alzheimer's Association - www.alz.org
The Alzheimer's and Dementia Caregiver Center - https://www.alz.org/care/alzheimers-dementia-stages-behaviors.asp
The Essential Caregivers Guide by Centennial Health
Lisa Genova, author of Still Alice - https://www.lisagenova.com
The Best Friends Approach to Alzheimer's and Dementia Care website - www.bestfriendsapproach.com
This post is lovingly dedicated to the memory of my
Ms. Joanne Standlick Smith,
To my husband for his brave and tireless efforts in caring for her,
and to all those caring for loved ones with Alzheimer's and other types of dementia.