As of 2023, as many as 6.7 million Americans are living with Alzheimer’s disease according to the CDC. Alzheimer’s disease is the most common type of dementia and involves parts of the brain that control thought, memory, and language. It’s progressive, meaning that symptoms will start off mildly and then gradually become more severe. Once symptoms get to this point, it can seriously affect a person’s ability to take care of themselves and perform everyday activities.
You will become the expert on your loved one’s condition as a caregiver for a person living with Alzheimer’s.
As soon as your loved one becomes diagnosed with Alzheimer’s, it’s very important to learn everything you can about the disease and its progression. This responsibility should be not only the primary caregivers, but also any other close friends or family members who may help with their care or spend time with them.
Knowing what to expect ahead of time can help everyone become prepared for the various challenges that are faced during each stage of progression. Alzheimer’s disease has seven stages ranging from symptoms that are not present, but family history of the condition is kept in mind, all the way to lack of physical control, where the mind begins to shut down as it struggles to complete necessary survival tasks effectively.
Not everyone’s experience with Alzheimer’s is the same. The severity and timing of symptoms may differ for everyone, but knowing the general idea of what to expect for each stage may help you come to terms with what your loved one may experience.
Plan for the Future
When Alzheimer’s disease is diagnosed in the early stages, individuals that have been identified with the condition may be capable of participating in the planning of their future care.
Some medical decisions are very difficult to make, and knowing what your loved one would prefer ahead of time can help lift the burden of the unknown. Some decisions to consider:
• Do not intubate or resuscitate (DNI or DNR) orders let medical staff know that you do not want to be put on a breathing machine or to not perform CPR or other life-support procedures in the case of a stopped heart or breathing.
• Organ and tissue donation can help save the lives of others when healthy organs can be transplanted.
• Other medical care like focusing on comfort in the later stages of Alzheimer’s rather than recovery.
Take the time that you have now to know their wishes and goals, plus designate a power of attorney while he or she can still contribute.
Create a Consistent Routine
Creating a repetitive schedule helps your loved one know what to expect and can help them stay independent for a longer period of time. Activities that can help make up this schedule include chores, time for personal care, mealtimes, and special events. Once this routine is established, it’s important to not stray from it – small changes can cause disruption to a person living with Alzheimer’s.
Another thing to consider when creating a daily schedule is the phenomenon known as “sundowning,” or the experience of increased anxiety, confusion, agitation, disorientation, or sleeping trouble that can begin at dusk and continue throughout the night. Try to schedule any special events or others during the day when they are feeling their best.
It’s safe to say that becoming the primary caregiver of a loved one is not the easiest. Taking on new tasks that have previously been unfamiliar is challenging. Remember that you are not alone and that you have priorities as well. Think about adding time for yourself to your own new normal and consider reaching out to an Alzheimer’s support group for extra support.
by Bobbie Woolcock, MSN
UPMC Senior Communities
Bobbie Woolcock, MSN, is the senior director of operations for UPMC Senior Communities in North Central Pa. To learn more about UPMC Senior Communities, go to UPMC.com/SeniorCommunities.