To mark Alzheimer’s Awareness month this September, Wisconsin-based Community Care, Inc., a non-profit coordinated care organization that specializes in caring for the elderly with day centers and offices in Milwaukee, is providing 10 general tips to family and friends who have made the decision to care for a loved one with dementia.
The American Alzheimer’s Association estimates 5 million people in the U.S. live with Alzheimer’s, the most common form of dementia, and 15.5 million family and friends provide more than 17 billion unpaid hours of care annually.
“The decision to care for a loved one with dementia almost always relates to providing them with a better quality of life in a home setting,” said Dr. Mary Gavinski, the chief medical officer at Community Care. “Caring for someone with the illness is no easy task, especially as it progresses, but it is certainly possible depending on the severity of the illness. There are several things you can do to make the situation easier; it can be very helpful to find a geriatric-certified physician who can work with you closely as the illness progresses.”
1. Educate yourself
Find out as much about the illness as you can before taking on the responsibility of care giving. The more you understand about the illness, the easier it will be to care for your loved one. You’ll also be better prepared to decide on a care approach. The American Alzheimer’s Association offers extensive information to potential care givers.
2. Join a support group
Join a dementia support group, especially early on, to be around others going through the same situation and to get support, resources and tips.
3. Be with them – real world or not
Some people with dementia can communicate in the present for a long time, but as the illness progresses your loved one may have trouble separating the real world from their invented world.
“If they’re in the room with you at the present time, that’s great,” said Dr. Gavinski. “But if they think they are with their brother, mother or niece or believe they are living in the 1930s – be there with them, too.”
Regardless of where they are in their communication abilities, be calm, supportive and non-confrontational.
4. Have patience
Take things slowly when communicating with your loved one. Avoid being argumentative or negative and always explain things as simply as possible using familiar words. Loved ones with dementia are more likely to respond positively if you speak in a friendly tone and greet them with a smile.
“If you’re trying to get your loved one to do something like take a bath, take it slowly with them,” said Dr. Gavinski. “Ask them if they want to, and if they don’t, back off and ask again in five minutes.”
5. Keep a regular schedule
Maintain a regular schedule that keeps your loved one active. Limit napping throughout the day to encourage sleeping through the night. As the illness progresses, you’ll want to make sure he or she is eating, sleeping and using the restroom appropriately.
6 Be on the same page as the physician
The physician will be able to help you understand where your loved one is in the dementia progression and what to expect. He or she will also be able to educate you on available treatments, and to discuss the pros and cons of each.
7. Reach out to family and friends
In order to care for a loved one with dementia, you’ll need help from friends and family. Set up a circle of support that you can lean on when you need help – physically or emotionally.
8. Discuss their wishes in advance
Unfortunately, dementia is a terminal illness. It’s important to develop an advanced care plan as early as possible to give your loved one an opportunity to make his or her goals, care choices and treatment preferences known, both verbally and in writing, and help identify a surrogate who would make those decisions on his or her behalf if your loved one no longer has decision-making capacity.
“You’ll want to consider the different options and the pros and cons of each,” said Dr. Gavinski. “As you go through the process, you should always ask yourself whether each option brings quality to your loved one’s life and is consistent with any wishes they have expressed.”
9. Take care of yourself
Know that caring for a loved one with dementia is a 24 hour a day job. In order to properly care for someone else, make sure you’re not compromising your mental and physical health. Make time to eat, sleep and spend leisure time on your own.
“You won’t wear down as fast and you might be able to take care of your loved one for a longer period of time,” said Dr. Gavinski.
10. Understand you might not be able to care through the end
As the illness progresses, providing care to a loved one will become increasingly more difficult.
“If you can’t do it anymore, it’s alright,” said Dr. Gavinski. “Sometimes it’s necessary for your loved one to enter a substitute care facility, if their care needs become too great for you. This can assist with care needs and allow the time you spend with them to be quality time. Do what is right for your loved one, yourself and your family.”
About Community Care
Headquartered in Brookfield, Wis., Community Care, Inc. is a private nonprofit organization that serves the long-term care and health needs of more than 10,000 older adults and adults with physical or intellectual disabilities. Founded in 1977, Community Care is the only Wisconsin managed care organization to offer all three programs of Family Care, Family Care Partnership and Program of All-Inclusive Care for the Elderly (PACE). The organization provides care in the 11 eastern Wisconsin counties of Calumet, Kenosha, Milwaukee, Outagamie, Ozaukee, Racine, Sheboygan, Walworth, Washington, Waukesha and Waupaca. For more information about Community Care, visit www.communitycareinc.org.