Early, Middle & Late Stage Alzheimer’s Disease & the Caregiver’s Role in Each Stage

Alzheimer’s disease (AD) is progressive. This means that as time passes, symptoms of the disease get worse. These changes are defined as “stages.” For a detailed description of each stage in specific types of dementia, their corresponding symptoms, and when to think about moving into assisted living, click here. On this page, we’ll focus on specifically AD symptoms in the commonly defined three stages, and address the caretaker’s role in each stage.

Early Stage Alzheimer’s

Signs & Symptoms: In the early stage of AD, which is also referred to as “mild” or “moderate” Alzheimer’s, people with the disease are generally still able to function on their own. Driving and going to work are still possible. Despite this independence, however, , memory-related problems will begin to come up in this early stage, such as frequently losing items like keys, not remembering an old friend’s name, and forgetting something that was just read. There may also be difficulty with tasks that involve organization and / or planning. Those sorts of jobs are called instrumental activities of daily living (IADLs), and include managing finances and keeping track of medications (dosage and when to take them).

Caregiver Support Needed: In the early stages of dementia, caregivers support and help the person with dementia mostly with encouragement and reminders, and thus are sometimes called “care partners” rather than caregivers. This is when it’s important to discuss legal and financial issues and care options for when the dementia progresses. You should research local programs for people with dementia, and what other resources might be available. (See Dementia Support below.) Planning for the future is a care partner’s most important job around this time, but try to also act as a supporting companion during this scary period of the person’s life. It’s also good to begin encouraging habits that benefit people with dementia: daily exercise, healthy eating, and consistent routines for the day.

Moderate Stage Alzheimer’s

Signs & Symptoms: During the moderate or middle stage of AD, persons have trouble expressing their thoughts and difficulty performing day-to-day activities. As normal tasks become harder, they lose some independence while also experiencing changes in behavior and personality. Anxiety, depression, agitation, issues with sleeping, hallucinations and delusions, and verbal outbursts are common at this stage, as frustration builds over the loss of control.

Caregiver Support Needed: Caregivers must become more hands-on, helping the person with AD with time-consuming or distressing tasks. For example, assistance with activities of daily living, such as bathing, dressing, preparing food and eating, using the bathroom, etc., is needed. Regular supervision to prevent dangerous behaviors, such as wandering, and to ensure the safety and wellbeing of the person with dementia is also required. (Driving becomes too dangerous as well during this stage.) In addition, caregivers must be prepared to deal with emotional problems and behavioral challenges. Communication becomes more difficult at this stage, and caregivers need to modify how they speak and interact with their loved one. Establishing structure and routines for the days is extremely important during the middle stage, which is the longest stage of Alzheimer’s. Self care is also important, as caregiver stress can become a major worry.

Late Stage Alzheimer’s

Signs & Symptoms: People in late-stage AD, also called severe Alzheimer’s, often lose the ability to speak, lose control of their bowels and bladders (incontinence), and lose the ability to walk by themselves. At some point, even swallowing becomes difficult, and feeding becomes one an important and much more difficult task because forgetting to eat and loss of appetite are both common in late stages. Vulnerability to infections becomes a concern, especially pneumonia. It becomes important to move, getting up from bed or sitting in a chair, to maintain circulation and keep joints from freezing.

Caregiver Support Needed: At this stage of dementia, persons with AD require full-time, around-the-clock care. This can be extremely difficult, as the person needs help with basically every task including going to the bathroom and eating. It is common that informal caregivers can no longer provide care for a loved one. Dementia care facilities, also called memory care units, are worth exploring if adequate care cannot be provided at home.