A caregiver’s guide to navigating the stages of Alzheimer’s and dementia
The journey with Alzheimer’s or dementia is a progressive one. As a caregiver, it’s helpful to know what to expect and how to care for yourself at the same time.
Photo by Randy Fath on Unsplash
When someone receives a dementia or Alzheimer’s diagnosis, they have a journey ahead. Likewise, so do those who step into a caregiving role.
If you find yourself in this position, understanding each stage of dementia or Alzheimer’s and the corresponding life changes is important. Knowing what to anticipate will help you provide necessary support and adapt your strategies to meet the evolving needs of your loved ones and yourself.
Additionally, anticipating what’s to come can help you prepare physically, emotionally, mentally, and financially for what may lie ahead.
Stage 1: Early Stage - Mild Cognitive Decline
Subtle changes in memory, thinking, and behavior often characterize the early stage of Alzheimer's or dementia. These changes may go unnoticed or be attributed to normal aging, causing confusion and uncertainty. As a caregiver in this stage, your role may involve encouraging independence, promoting a healthy lifestyle, and assisting with tasks that may become challenging for the individual, such as managing finances or organizing appointments.
During this time, focus on your relationship with your loved one. Take opportunities to connect, reminisce, and make new memories.
Begin talking to your loved one now about establishing regular routines or emphasizing consistency in the routines you already have. This may help when your loved one’s symptoms increase in severity.
Taking care of yourself during this stage is all about education and preparation. Seek out online or in-person support groups where you can begin connecting with other caregivers. Communicate with other family members who might assume caregiving responsibilities and have important conversations about how you will move forward together in this process. And, become familiar with the resources at your disposal now, so when symptoms increase, you will already have the knowledge you need at your fingertips.
Stage 2: Middle Stage - Moderate Cognitive Decline
In the middle stage, you can expect more pronounced cognitive decline, making daily activities increasingly difficult for your loved one. Memory loss becomes more evident, and they may struggle with communication, recognizing familiar faces, or performing complex tasks.
As a caregiver, it is crucial to establish a structured routine, create a safe living environment, and provide assistance with personal care, medication management, and meal preparation. Patience, empathy, and effective communication are vital during this stage.
Continue to allow as much autonomy and independence as possible, while looking for ways to ensure their safety.
Taking care of yourself during this stage might look like finding your ways to be independent. So much of your time and energy is likely wrapped up in caregiving tasks, but it’s crucial for your own mental and emotional well-being to spend time doing something you enjoy. If you’re dealing with guilt, shame, or grief, and you are not connected to a support group or talking with an advocate or therapist, now might be a time to explore those options.
Stage 3: Late Stage - Severe Cognitive Decline
In the late stage of Alzheimer's or dementia, individuals experience profound memory loss, significant changes in physical abilities, and a loss of awareness of their surroundings. They may require extensive assistance with all activities of daily living, including eating, bathing, and using the restroom.
During this time, the caregiver’s role evolves into providing constant supervision and ensuring their comfort and safety. This stage often necessitates professional medical care and support from a multidisciplinary team, including doctors, nurses, and therapists.
Taking care of yourself during this stage might look like delegating and exploring outside resources. By now, you have shouldered an enormous amount of responsibility. As your loved one continues to decline, it’s important to surround yourself with people and resources who can take on some of that responsibility and help keep you physically, mentally, and emotionally healthy, as well.
Stage 4: End Stage - Terminal Decline
The end stage signifies the final phase of Alzheimer's or dementia. At this point, your loved one may become bedridden, lose the ability to communicate verbally and experience a significant decline in physical and cognitive functions.
At this point, caregivers are striving to create a calm and soothing environment, engaging in non-verbal communication and ensuring the individual's dignity is preserved throughout this challenging period.
Taking care of yourself during this stage may involve fully feeling your emotions. If grief, anger, sadness, or any other “negative” feeling settles in, that’s normal. Give yourself time to sit with those feelings and experience them. Once you do, those feelings will be allowed to move through and out of your body so that you’re not holding onto them for longer than necessary.
While your caregiving journey is intricately connected to your loved one’s journey, the two of you will have wildly different experiences along the way. If you allow yourself space to honor your own experience and emotions and prioritize self-care, both of you will benefit.
If you enjoy resources like this, would like to connect with other caregivers, or would like one-on-one support from a dedicated advocate, try Steadii.