Caring for your loved one during each phase of Alzheimer’s

Understanding the phases of Alzheimer’s is important^1,2

You may have heard that there are different phases of Alzheimer’s, which provide a general overview of the changes you and your loved one can expect as the disease progresses. When it comes to learning about caring for a loved one with Alzheimer’s, the phases of Alzheimer’s can be broken down into three groups: early, middle, and late.

In the early phase of Alzheimer's, your loved one may maintain some amount of independence. During the middle phase, your loved one will require a greater level of care. By the late phase, your loved one will probably require round-the-clock care. Learning about caregiving during these phases of Alzheimer’s may help you feel better prepared to take care of your loved one.

Caring for your loved one during the early phase^2,3

Caring during the early phase of Alzheimer's begins when your loved one is diagnosed. There are a lot of important decisions to make and things to do during that time:

• Handle legal and financial matters early – As your loved one’s cognitive ability declines, he or she will be less able to make complicated decisions. It’s important to take care of financial decisions and create documents like a living will early on, so your loved one’s input can be taken into consideration
• Be a care partner – In the early phase of Alzheimer’s, your loved one may not need as much close care as later on. If that is the case, provide love and support and assistance for the things with which your loved one does need help
• Encourage independence – Allow your loved one to stay as independent as possible. One way to do that is to help your loved one set up a routine that he or she can follow. If your loved one needs help, be sure to provide it, but allow space for him or her to perform tasks independently
• Embrace activity – Help your loved one continue to live an active, healthy lifestyle for as long as possible
• Check for signs of decline – Though your loved one will still be able to do many of the things he or she did before the diagnosis, you should still be alert for signs of decline. Pay close attention to your loved one’s driving and eating habits and make sure he or she is taking all the proper medicines

Caring for your loved one during the middle phase⁴

The middle phase can potentially be the longest, often lasting many years. Symptoms and behavioral changes may be more noticeable and may require a greater level of involvement from you:

• Understand behavioral changes – You may start to notice your loved one becoming more anxious, irritable, and depressed. These changes can be difficult to handle, but there are things you can do to help manage them. These include ensuring your loved one is comfortable, avoiding becoming confrontational, and remaining flexible and patient
• Focus on communication – While communication becomes more difficult as the disease progresses, many people with Alzheimer’s are aware of the way others speak to them. It’s important to maintain positive communication with your loved one by speaking slowly, clearly, and in a gentle tone
• Balance need and independence – Your loved one will require additional help performing daily tasks like eating, dressing, and grooming. In order to help your loved one maintain his or her pride and dignity, you should assist where needed but also allow space for him or her to perform tasks independently
• Get your loved one involved – Involving your loved one in daily activities like cooking or gardening may help him or her feel valuable and reduce behaviors like wandering and agitation
• Stay safe – Two of the biggest concerns for people in the middle phase of Alzheimer’s care are driving and wandering. When your loved one’s driving is no longer safe, it’s important to talk to him or her to reinforce the need to stop. To help prevent wandering, make sure someone is keeping an eye on your loved one and make adjustments to the living environment to keep him or her safe

Caring for your loved one during the late phase⁵

By the late phase of Alzheimer’s care, your loved one may have difficulty eating, swallowing, walking, and communicating. He or she will also be more vulnerable to infection and illness. However, there are things you can do to ensure your loved one is cared for with dignity and respect:

• Keep your loved one comfortable – Since your loved one will be mostly immobile, it’s important to make sure that he or she is comfortable when sitting or laying down. Some ways to do this include ensuring correct body placement, keeping the skin clean and dry, and performing range of motion exercises to keep the joints active
• Take care of bathroom issues – If your loved one is suffering from incontinence, talk to a doctor because it may be caused by an underlying health issue. If not, you can try setting a schedule, limiting liquids before bedtime, and trying products such as adult briefs to help your loved one with incontinence
• Manage mealtimes – Eating may be difficult for your loved one. It’s important that you keep an eye out for weight loss, be patient during meals to ensure your loved one is eating enough, and make sure he or she is getting enough fluids
• Fight illness and infection – Your loved one will be especially at risk for infections and illnesses, such as pneumonia and the flu. Treat cuts and scrapes immediately, ensure your loved one is up to date on vaccines, keep his or her mouth and teeth clean at all times, and look for behavioral changes, such as agitation, anxiety, or trouble sleeping, which may be a sign of an illness
• Maintain a personal connection – Memory and cognition may have declined, but that doesn’t mean you and your loved one can’t continue to share a close bond. Since your loved one may not understand the words you are saying, the important thing is to communicate with the tone of your voice and with gentle touch. Activities like listening to music, watching birds, or looking at old photographs can all still be enjoyable for your loved one and meaningful for both of you

Learn more about the phases of Alzheimer’s disease.