The Role of Caregiving Through the Stages of Alzheimer’s Disease

It is difficult as a caregiver to watch your loved one’s health decline as a result of their health condition. While this is true of any condition that affects our loved ones, Alzheimer’s disease stands out due to the nature of the illness. As it progresses, a person slowly loses the essence of who they are: memories fade, physical abilities deteriorate, and personalities vanish. 

The disease affects the brain, and occurs due to irregular proteins accumulating in brain cells. It is a degenerative disease, which means that it only worsens over time. There currently is no cure, but research on the causes of the condition and potential treatment continues. It is important to understand that this is a terminal condition. Once diagnosed, unless your loved one has other complications, Alzheimer’s disease will be their cause of death. Many doctors fail to state this during diagnosis, and families are left unprepared as a result.

The lifespan of a patient with the condition averages between eight to ten years. During this time, caregivers have an increasingly difficult job. In particular, a family member who acts as the primary caregiver will experience extreme stress. Having a clear understanding of how the disease progresses will make it easier to handle the transitions from one stage to another and to understand when additional help should be sought. 

The changes that occur as the disease progresses will directly affect a caregiver’s role and responsibilities. Ignorance is accompanied by surprise, which is accompanied by fear. Being knowledgeable will also show you how valuable the time you still have with your loved one is. Time that you need to take advantage of so that you do not have regrets later.

Alzheimer’s can be broken down into seven stages according to the Global Deterioration Scale. But for ease of discussion, these seven stages can be organized into four periods:

  • Early stage
  • Middle stage
  • Late stage
  • End of life

Early Stage of Alzheimer's Disease

Alzheimer’s disease is difficult to diagnose when it first develops because the symptoms can be confused with the typical effects of aging. Denial of symptoms may further delay seeking medical attention. This early stage is challenging because of how new the disease will feel and how unexpected the changes will be. It typically lasts between two to four years.

Memory loss is the most significant symptom of developing Alzheimer’s disease. Since we all experience memory loss to some degree, it can be confusing when deciding if you should seek out medical attention. When assessing a patient, a doctor establishes if the memory loss is preventing the person from completing the activities of everyday living (ADLs). Is the person becoming more dependent on others?

While your loved one may retain much of their independence during this time, they will have specific needs. How each person reacts to the condition is unique, so their needs must be individually assessed. One person may find cooking difficult, but still be able to manage an online blog. Another will find that they can no longer drive because they misinterpret road signs. The important thing is to recognize where your loved one needs help and to ensure that they receive that help. 

Many will try to become their own caregiver at first. But even in this early stage, your loved one should not be entirely relied on to take care of themselves. At the same time, a caregiver should not perform all tasks either. Allowing your loved one to maintain as much independence as possible will prolong their functioning in certain abilities. A caregiver should work with a patient to reduce potential for harm, while still allowing them the independence that they desire and need. A professional is trained to understand this balance.

While live-in care is likely unnecessary at this stage, respite care can provide some much needed relief to a family member who acts as a primary caregiver. We can work with your schedule to provide a break when you need it.

Symptoms in the Early Stage of Alzheimer's Disease

In addition to memory loss, symptoms in the early stages include:

  • Difficulty concentrating or limited attention span
  • Problems with orientation, getting lost, not being able to follow directions
  • Difficulty communicating
  • Mood shifts, depression
  • Passiveness, withdrawal
  • Mild co-ordination issues

Middle Stage of Alzheimer's Disease

In the middle stage of the disease, the symptoms will worsen considerably. Activities that were difficult may become unmanageable, and additional activities will require assistance. This stage can last between two and ten years.

Short-term memory is significantly affected during this time, which means carrying a lengthy conversation will be impossible. In this stage, a person’s short-term memory simply cannot retain information for very long. This will result in frequently being asked the same questions because your loved one will not have remembered asking them or any of your answers. How you respond will be crucial. Showing frustration will only cause confusion and stress. Try to be as patient as you can during your conversations. 

Some will begin to wander, which can be very frustrating for family caregivers who live with their loved ones. At first, this will consist of restlessness and not being able to sit still, but will then progress to not being able to stay in bed throughout the night. This is dangerous because nighttime wandering combined with memory loss can result in significant disorientation. Having someone who is able to watch your loved one at night if this becomes an issue is advised. 

In the latter part of this stage, long-term memory will also deteriorate. This causes some to live in the moment with no sense of past or future. One consequence of this is that they eat and drink less. This may be unnoticeable on a daily basis, but will be clear when considering what they are consuming over a two-week period. They will be seriously lacking in fundamental nutrition. 

No one can be solely accountable for their own care at this point. Left unattended, your loved one can be a danger to themself. Constant reminders will be necessary for medication and meals. Performing ADLs individually will be beyond most in this stage. This leads many to move into a nursing home, which will provide 24-hour care. Unfortunately, resources are limited in many publicly funded homes, so care is rarely personalized. Also, a person declines much faster on average when they enter a nursing home because the home will solely perform many ADLs for the resident. 

Using the Montessori method approach to dementia caregiving is especially important in this stage. These techniques focus on maintaining independence for as long as possible. Using roles and routines, your loved one will be given meaning and purpose that will provide them with a more fulfilling life. We have many caregivers who have received specialized training for these skills at Mavencare. 

Additionally, certified nurses who have experience with Alzheimer’s patients will be able to manage pain and symptoms. Occupational therapy and mobility training is highly recommended to slow down the progression of symptoms that relate to movement. Maintaining activity for as long as possible will allow your loved one to enjoy a degree of independence that will make them happier. 

Symptoms in the Middle Stage of Alzheimer's Disease

Symptoms in the middle stage include:

  • Cognitive abilities
    • Memory problems become more pronounced
    • Declining ability to concentrate
  • Moods and emotions
    • Mood shifts
    • Sense of loss or insecurity
  • Behaviours
    • Apprehensiveness, withdrawal, or passiveness
    • Restlessness
    • Repetitive questioning
    • Delusions
    • Uninhibited behaviour
  • Physical abilities
    • Assistance required for activities of daily living
    • Changes in sleep/wake patterns
    • Changes in appetite
    • Spatial problems

Late Stage of Alzheimer's Disease

In the final stage of Alzheimer’s disease, a patient will require 24-hour care. While your loved one will maintain some functioning, they will require significant support for all ADLs. In addition to the obvious physical stress a caregiver endures during this time, the emotional toll will be significant. This stage typically lasts between one and three years.

Communication will consist largely of nonverbal gestures, as a person’s language ability is lost. Certain words or phrases may still be used from time to time. 

Physical deterioration will also be significant. Walking, eating, and using the toilet will all require assistance. Incontinence will become a regular occurrence.  

As a result, some form of additional help will be necessary. One option is to move your loved one to a facility that will promise a commitment of continuous care, such as a nursing home. Live-in care is another option. This will ensure that personalized care is available around the clock. It will also allow your loved one to remain in the comfort of their home, which will reduce the stress of being in unfamiliar surroundings.

End of Life

Eventually the disease will progress to a point where bodily functions cease to operate. Palliative care can be used at this stage to ease your loved one’s pain in the end. 

This type of care offers a support system for both you and your loved one. It functions to neither hasten nor postpone death. You may be wondering why palliative care would not seek to postpone death when this is surely the goal of all medical care. This is because postponing death often means conflicting with the other goal of palliative care—lessening suffering. 

For example, the disease often leads to the ability to swallow being lost. This will cause some to insert a feeding tube. When a feeding tube is inserted, a minimum of six hospital visits will follow. The distress of these constant admissions will cause your loved one anxiety, which will result in many other health issues. Similarly, intravenous hydration causes physical distress to a person by extending the dying process by a few weeks. 

These and other end of life medical care, such as cardiopulmonary resuscitation (CPR), should be discussed with medical professionals, while considering any advance directives your loved one has specified. 

We want our loved ones to pass on with dignity, comfort, and surrounded by those who care about them. This is more easily achieved in a home-like environment than at a hospital. Fortunately, palliative care can be provided in any environment you choose. 

Caregiving Necessities

Throughout the progression of the disease, much of the focus will be placed on maintaining the happiness of your loved one. It is necessary that you also take care of yourself. This will allow you to provide better care and enjoy the time that you have with each other. Knowing when to ask for help is an important part of this process. 

But asking for help is only the beginning. You must also choose a caregiver wisely. What should you look for in a caregiver? 

First, you want someone who will genuinely care about your loved one. Creating this connection is easier the earlier they are hired. This allows them to develop a stronger bond with each other before the disease progresses too severely. 

When someone is in late stage dementia, they are responding to tone of voice and energy more than they are to what is actually being said to them. This is why people who actually care are so important. Our thorough in-person interviews are designed to select people who demonstrate clear passion for their role.

You also want someone who is able to understand and communicate with a patient who has progressed into the later stages of Alzheimer’s. Losing words will become very frustrating for your loved one, so a caregiver who is patient and shows respect will make a positive emotional impact. 

Finally, cultural background needs to be taken into account when determining care. If someone is used to a certain way of living, this should not be ignored. When it is, a person can feel vulnerable and dehumanized. This is why Mavencare takes extra precaution to match our caregivers with their clients. Our cutting edge technology considers several factors when making assignments.  

How to be prepared

This post has been designed to prepare you for the realities of Alzheimer’s disease. There are many commonalities that are important to understand, even though everyone does experience the disease in their own way and pace. 

While your loved one will lose their identity in the end, there is a long path before that happens. Your journey together will be more enjoyable if you take advantage of your time. Prolonging their independence for as long as possible goes a long way to delaying the progression of symptoms. Any suitable caregiver will understand that they need to work with your loved one, not for them. Everyone values their dignity highly, and should be allowed to maintain it, even while undergoing a serious condition like Alzheimer’s disease.


Mavencare offers personalized home care services with convenience and transparency to keep seniors safe and independent at home. We apply our extensive experience in healthcare, senior care, and technology, to provide the highest quality and family-focused home care. If you need a helping hand in your home, please fill out the form below and a care coordinator will contact you right away.

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