What to Expect When Caring for Someone with Alzheimer’s

A Guide to Caregiving: Early, Mid, and Late Stage

Knowing what to expect if you are a care partner with someone who has an Alzheimer’s diagnosis – whether you are family or a friend — may help ease your fears about the future, along with the stress, anxiety, anger, frustration, grief and depression that you might experience through the stages of the disease.

Early stage— A time to talk, plan and help with coping strategies

The Alzheimer’s Association has broken down the different stages of the disease and what kind of care that may be required for each: Early-Stage Caregiving Early stage refers to people who are in the beginning stage of Alzheimer’s disease. It is an optimal time to partner with your loved one to make important decisions about the future, including legal, financial and long-term care planning. You can begin to research available treatments, clinical trials, resources and support services for you and your loved one. Because the person who has just been diagnosed is primarily independent, you, the care partner, may want to help manage a daily schedule or household budget. Assisting with everyday tasks can help your loved one develop new coping strategies.

Early Stage Tips:

Ask your loved one how and when to provide support. Check in regularly to see if he/she needs more or less assistance from you. Talk about your expectations, questions and concerns.
Create a help signal, whether it’s a phrase or other cue you can both use to signal that it’s okay to help. For example, if the person needs help remembering a word or name, he/she can use the cue.
Make sure there are no immediate safety risks for the person with dementia. If not, provide encouragement and continue to supervise as necessary.
Try to ease your loved one’s anxiety or stress by asking if he/she needs help with tasks like keeping appointments, making shopping lists, managing money, keeping track of medications and driving.
If you sense frustration, try to identify the cause of frustration before stepping in.
Encourage your loved one to share his/her personal feelings in a journal, and spend time doing activities that are meaningful for both of you.
Attend early-stage support group meetings. Find out by calling your local Alzheimer’s Association.

Mid-stage—You’ll need patience, flexibility and to carve out some time for you

You might notice that your loved one is jumbling words, having trouble getting dressed, getting frustrated or angry, or is acting in unexpected ways. He or she may be wandering, so taking safety precautions is critical. You will need to be patient and flexible. You might also build in breaks for yourself, if only for a few minutes. Accept offers of help from family and friends. Take advantage of adult day service and other respite services in your community.

Mid-Stage Tips:

Use a calm voice when responding to repeated questions. Respond to the emotion rather than the question; the person may simply need reassurance.
Use simple, written reminders if your loved one is able to read.
If you notice changes, check with your loved one’s doctor to rule out other physical problems or the side effects of medication.

Late-Stage—deepening needs, more care and preserving dignity

As the disease progresses, the needs of your loved one will change and deepen. He/she may have trouble eating, swallowing and walking. Infections like pneumonia are more common. He/she may need full-time help with personal care, or need to move into a facility that can accommodate people with late-stage Alzheimer’s. At the end of life, hospice care is a possibility if your loved one’s doctor has diagnosed the person as having less than six months to live. Your role at this stage of the disease is to preserve your loved one’s quality of life and dignity. Although he/she may not be able to talk or express needs, research shows that the core of the person’s self may remain, and there is a possibility of genuine communication.

Late-stage Tips:

Play his/her favorite music; read portions of books the person loves; look at old photos together; rub lotion with a favorite scent into his/ her skin; brush his/her hair; sit outside together on a nice day.
If your loved one isn’t eating, talk to his/her doctor about stimulating his/her appetite or suggestions for supplements; choose soft foods that can be chewed/swallowed easily; encourage the person to eat on his/her own, if possible; encourage him/her to drink fluids or swallow sherbet, soup, fruit juice.
Make sure your loved one is in a comfortable, upright position for 30 minutes after eating.
Set a toileting schedule (keep track of when the person goes and how much she or he eats or drinks); use a bedside commode if the person can’t get to the bathroom in time; limit liquids before bedtime; use absorbent briefs and bed pads.
Relieve body pressure by changing the person’s position. Use pillows and pads to support arms and legs and protect bony areas like elbows, heels and hips.
Learn how to lift the person; try not to lift by the arms or shoulders.
Prevent “freezing” of joints, which happens when a person is confined for long periods in a chair or bed: Help your loved one with range-of-motion exercising such as carefully moving the arms and legs 2-3 times a day, preferably when muscles are warm after a bath or shower.
Keep your loved one’s skin clean and dry. Check daily for rashes, sores or breakdowns. Treat cuts with an antibiotic ointment, or call the doctor if the cut is deep.
To help prevent infections, help your loved one brush his/her teeth to reduce the risk of bacteria in the mouth, which can lead to pneumonia. Make sure he/ her has his flu shot every year. If you suspect your loved one is in pain, check for physical signs and nonverbal signs, along with anxiety, trembling, shouting and sleep problems.

This content courtesy of the Alzheimer’s Association. This content also appears in connect, our free, downloadable information and resource guide.