A Family Caregiver’s Guide to Moderate-Stage Alzheimer’s Disease
(Can be used for understanding other types of dementia as well)
Understanding Moderate-Stage Alzheimer’s Disease (FAST Stage 5-6)
While each person’s journey through Alzheimer’s is unique, most people experience some common symptoms in a similar progression. Understanding these common symptoms for Moderate-Stage Alzheimer’s (FAST Stage 5-6) can help you and your loved one cope with the changes.
In moderate-stage illness, most individuals will need more assistance with day-to-day activities and be less socially active without your support. Another hallmark of this stage is that the changes in the brain begin to create physical disabilities. As an example, driving, which requires mental and physical skills is likely to be compromised in this stage.
Your loved one will need you or someone to DO more of the activities of daily living with them.
There is often a clear decrease in your loved one’s engagement in the world around them.
Individuals may have more emotional instability that is difficult for them to control.
For caregivers, this stage can be demanding, difficult, and draining, as the impact of the disease on your loved one becomes far more evident day to day and requires more of your (or someone’s) attention. This often creates a new range of caregiving needs to address the increased range of needs of your loved one. The need to have more help caring for your loved one often starts in this stage.
Let’s start by reviewing some of the common “moderate-stage” symptoms. From this list it will be clear there is progression of intellectual decline and need for even more support, now including physical help. Keep in mind not everyone will experience all Alzheimer’s symptoms of each stage.
Symptoms in Moderate-Stage Alzheimer’s Disease
Memory Loss Symptoms
Being forgetful of events or personal history
Being unable to recall information about themselves like their address or telephone number, and the high school or college they attended
Experiencing confusion about where they are or what day it is
Communication-Related Symptoms
Difficulty following conversations
Decreased tendency to initiate conversations
Reduced vocabulary
Executive Function/Multi-tasking/Planning/Concentration
Requiring help choosing proper clothing for the season or the occasion
Showing an increased tendency to wander and become lost
Emotional Symptoms
Feeling moody or withdrawn, especially in socially or mentally challenging situations
Demonstrating personality and behavioral changes, including suspiciousness and delusions or compulsive, repetitive behavior like hand-wringing or tissue shredding
Physical Changes
(New in Moderate/FAST Stage 5 and Stage 6)
Having trouble controlling their bladder and bowels
Experiencing changes in sleep patterns, such as sleeping during the day and becoming restless at night
Being a Family Caregiver for a Loved One in Moderate-Stage Alzheimer’s Disease
For caregivers, the reality and gravity of this illness often becomes clear in the moderate stage. This is often when your Loved One truly needs full cognitive, emotional, and physical support. Such broad dependency is often more than any one person should take on alone. Finding the right combination of support, however, is an added challenge to this stage.
Helping Your Loved One in the Moderate-stage of Alzheimer’s Disease
As the relentless advance of Alzheimer’s progresses, your role as an advocate for your loved one becomes more and more valuable. Even at this stage, your loved one may still be able to participate in some typical daily activities with full assistance. It’s valuable to identify tasks they might be able to manage successfully with your support. This is the kind of dignified support we’d probably all want for ourselves. While your support is increasingly needed at this stage it is vital for family caregivers to enlist the aid of others to help with the full range of care needs for your loved one. Keep in mind, your loved one is dependent on you so “Take Your Oxygen First” for their benefit as well as yours!
Caregiving 202
There are several “next -level” skills that may help you during the Moderate-Stage of illness.
These involve supporting your loved one with areas of thinking, emotions, and physical abilities that are impacted. Here are some examples. Your NAN Navigator will direct you to specific training resources as needed.
You will likely be needed to help with more and more of your loved one’s activities of daily living. At this stage you will need to learn to do “full assist” of things like bathing and oral care.
You may be asked to help keep your loved one from being anxious and unable to calm down.
You may need to help your loved one with continuing to use proper techniques for bathing and toileting.
Adding Others to the Caregiving Team
Given the increased range of needs of our loved one in this stage, it may become necessary to increase caregiving beyond what you can personally do. This is OK! You are still THE primary care advocate and caregiver for your loved one. Whether you are in the room or not! As this stage continues to progress, your loved one will approach and then reach the need for 24/7 caregiver support. It is simply impossible to be a full-time caregiver for your loved one as well as keep your own health and well-being stable if you don’t have any help.
Your NAN Navigator will help you learn the options for increasing the care for your loved one.
Managing Emotions
In Moderate-stage illness the chance of emotional instability is much higher, though not everyone has this issue. If your loved one is affected by moodiness or irritability, mood swings or erratic behaviors, and/or anger or agitation, it can greatly complicate their care. It is possible for your loved one to have a near complete personality change or the onset of unusually dramatic emotional responses. Individuals who have been very outgoing can become more solitary. Someone who was easy-going may appear to now have a very short temper and little patience for not getting things done their way.
Caring for these complications often requires new skills to help you learn how to avoid further escalating the emotional response. If these challenges are frequent, it can be a source of caregiver stress or even burnout. Because of this, moderate-stage illness is when it may be valuable to have your loved one spend time with a companion/in-home caregiver or at an Adult Day program. This type of respite may be what you need to protect you from burnout and keep you feeling capable of providing the care your loved one needs.
A Note About Medications for Moods and Emotional Upset:
In many cases there are non-medication strategies that can help reduce or stop upset or agitation. These strategies are not always effective or practical, so they are not the whole solution. There are a set of medications that can be used to “calm” an individual with emotional upset. Unfortunately, many of the medications that “calm” do so by making the body sleepy. For older adults this puts them at increased risk for falls. In addition, for our loved one’s with Alzheimer’s disease such medications can be problematic since it makes their brain “sleepy” too often, leading to increased confusion. Despite these risks there are times when the use of these calming medications IS the best path forward to ensure your loved one’s safety and/or your ability to care for them.
Reach out for support for both yourself and your loved one. The more you reach out to others and get support, the more you will be able to cope with Alzheimer’s symptoms while continuing to enrich and find meaning in your life.
Your Role as Advocate for Your Loved One:
In this stage you are probably at the point where the disease has progressed to the extent that your loved one will no longer be able to participate in complex deliberations or decision making.
Source: Stages of Alzheimer’s Disease. January 2018.
