Navigating the Different Stages of Alzheimer’s Disease as a Caregiver

Alzheimer's Disease develops over time, causing changes in the brain that affect a person's memory, thinking and behavior. According to the Alzheimer’s Association, more than 5 million Americans are living with Alzheimer's Disease, and 16 million Americans serve as unpaid caregivers to loved ones with Alzheimer’s Disease or related dementias. With every change to a loved one’s health as the disease progresses over time, these 16 million caregivers are along for the journey right there with their loved one.

A better understanding of the signs and symptoms of each stage of Alzheimer's disease can help us seek and develop strategies to make the best life possible for a loved one, and for ourselves. This knowledge can also help us make decisions about a loved one’s care and how it might need to evolve along with the disease.

Below are common behaviors and physical and mental changes that occur in each stage of Alzheimer's. Because every person is different, we should keep in mind the loved one we provide care for may not experience all behaviors listed here.

EARLY STAGE: MILD

The earliest stage of Alzheimer’s can often be difficult to identify. Because a loved one can remain largely independent during the disease’s earliest stages and participate in most of their usual activities—work, hobbies and daily tasks—many people don’t associate their memory lapses with Alzheimer’s and may instead write these lapses off as “age-related forgetfulness.”

However, many of the early symptoms of Alzheimer’s are not normal parts of aging. It’s important to recognize them, so that a loved one can be diagnosed as soon as possible. During the early stages, a loved one has more opportunities to be involved in decision-making and expressing their care preferences, as well as getting their finances and affairs in order, so it’s valuable for everyone if a diagnosis is able to happen sooner rather than later. 

During this stage, a loved one may:

• Ask the same questions repeatedly
• Have difficulty following conversations
• Be unable to remember people's names or recent events
• Experience sudden mood or behavior changes
• Have trouble concentrating, planning or organizing
• Get lost while driving in familiar neighborhoods
• Leave items in odd places
  (Mayo Clinic. Alzheimer's stages: How the disease progresses. Retrieved from: https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-stages/art-20048448) 

MIDDLE STAGE: MODERATE

The middle stage of Alzheimer’s is generally the longest, and marks a period where care will progressively be needed more and more by the loved one with dementia. They will still be able to participate in many of their daily activities, but will likely need assistance and support to do so. In the middle stage, it can be crucial for caregivers to identify their loved one’s unique symptoms and challenges, and to work together with both family members and professionals to find solutions that prioritize the loved one’s safety and wellbeing.

During this stage, a loved one may:

• Forget to turn off the stove, iron or other appliances
• Forget to take medications
• Have difficulty planning meals, paying bills or shopping for groceries
• Have trouble reading or writing
• Become restless and agitated at night; often oversleeping or being unable to sleep
• Experience hallucinations or delusions
  (Mayo Clinic, Alzheimer’s Association)

LATE STAGE: SEVERE

During the late stages of dementia, a loved one’s symptoms will be at their most severe, and care will be needed for almost all areas of their life, from daily tasks to communication with others. Being a caregiver for a loved one with late stage dementia can be a challenge, but preplanning from the early stages can help ease some of the burden, along with the support of family, friends and professional services. 

During this stage, a loved one may:

• Have little to no remaining memory
• Need greater assistance with eating, bathing and other activities of daily living
• Have difficulty speaking and understanding words
• Lose control of their bowels or bladder
• Be unable to recognize family members
• Be susceptible to infections
• Experience weight loss
  (Mayo Clinic, Alzheimer’s Association)

Caregiving is a journey, and like any journey, preparation, planning and having a roadmap can make the process smoother. Each Alzheimer’s journey is different and unique, and though at times caregivers may feel lost and confused about how to proceed, this is not a sign to give up, but an opportunity to learn more, reach out for support and open up discussions about what might be down the road. For more information, these resources are a great place to start:

• Benjamin Rose Institute on Aging
• The Alzheimer’s Association
• Dementia Friends USA
• Alzheimer’s Foundation of America
• National Institute on Aging
• Family Caregiver Alliance
• U.S Department of Veterans Affairs
• WeCare…Because You Do

This article was written for the Expansion of Dementia-Capable Communities within Urban and Rural Settings in Ohio using Evidence-Based and Informed Programming project, a grant funded by the Administration for Community Living (ACL) . Learn more here.