In discussing the stages of Alzheimer’s disease, we want to first say that Alzheimer’s disease is a terrible affliction, one that takes a heavy toll on families and their caregivers. As a home care company in Toronto, we are very familiar with Alzheimer’s disease, and how difficult it is for families to endure. Awareness of and decreasing the risk factors for Alzheimer’s disease is a great way to delay onset or reduce probability of developing the disease. Changes in the brain related to Alzheimer’s begin years before any signs of the disease. This time period, which can last for years, is referred to as preclinical Alzheimer’s disease. Although the person is unaware of changes during the preclinical phase, new imaging technologies can now identify deposits of amyloid beta that are thought to cause the disease. The stages below provide an overall idea of how abilities change once symptoms appear, and should only be used as a general guide. They are separated into three different categories:
- Mild or early Alzheimer’s disease,
- Moderate Alzheimer’s disease, and
- Severe or late Alzheimer’s disease.
Be aware that it may be difficult to place a person with Alzheimer’s in a specific stage as stages may overlap. The stages of Alzheimer’s are helpful in finding the words to discuss Alzheimer’s. Caregivers find them particularly useful in support groups, as well as in conversations with doctors and other professionals.
Mild or early stage Alzheimer’s
In the early stages of Alzheimer’s, a person may function independently. He or she may still drive, work, and be part of social activities. In the early stages, a neurologist can diagnose Alzheimer’s disease, and most likely treat it with medications that have been proven effective in slowing it down. In the mild Alzheimer’s stage, people may experience:
- Memory loss for recent events.Individuals may have an especially hard time remembering newly learned information and repeatedly ask the same question.
- Difficulty with problem-solving, complex tasks and sound judgments.Planning a family event, keeping score in a game, or balancing a chequebook may become overwhelming. Many people experience lapses in judgment, such as when making financial decisions. It is good practice to appoint a power of attorney for finances when diagnosed with Alzheimer’s disease.
- Changes in personality.People may become subdued or withdrawn — especially in socially challenging situations — or show uncharacteristic irritability or anger. Decreased attention span and reduced motivation to complete tasks also are common.
- Difficulty organizing and expressing thoughts.Finding the right words to describe objects or clearly express ideas becomes increasingly challenging.
- Getting lost or misplacing belongings.Individuals have increasing trouble finding their way around, even in familiar places. It’s also common to lose or misplace things, including valuable items. Confusion of where things belong is possible (e.g. may put a towel in the fridge)
Mild stage Alzheimer’s and home care
Families with loved ones in early stage Alzheimer’s rarely request home care. When families get nervous about leaving their loved one alone, or there is no primary family caregiver, the service of companionship is often requested to ensure safety and company.
Moderate Alzheimer’s is typically the longest stage and can last for many years. As the disease progresses, the person with Alzheimer’s will require a greater level of care. During the moderate stage of Alzheimer’s, people grow more confused and forgetful, and begin to need help with daily activities and self-care. People with moderate Alzheimer’s disease may:
- Show increasingly poor judgment and deepening confusion.Individuals lose track of where they are, the day of the week or the season. They often lose the ability to recognize their own belongings and may inadvertently take things that don’t belong to them.
- They may confuse family members or close friends with one another, or mistake strangers for family. They often pace or leave home, possibly in search of surroundings that feel more familiar and “right.” These difficulties make it unsafe to leave those in the moderate Alzheimer’s stage on their own.
- Experience even greater memory loss.People may forget details of their personal history, such as their address or phone number, or where they attended school. They repeat favorite stories.
- Need help with some daily activities.Assistance may be required with choosing proper clothing for the occasion or the weather and with bathing, grooming, using the bathroom and other self-care. Some individuals occasionally lose control of their urine or bowel movements.
- Undergo significant changes in personality and behavior. It’s not unusual for people with moderate Alzheimer’s to develop unfounded suspicions — for example, to become convinced that friends, family or professional caregivers are stealing from them or that a spouse is having an affair. Others may see or hear things that aren’t really there. Individuals often grow restless or agitated, especially late in the day. People may have outbursts of aggressive physical behavior.
- Increased desire to sleep is common
- Changes in sleep patterns, such as sleeping during the day and becoming restless at night
Moderate Stage Alzheimer’s disease and homecare
This is the stage at which it is often not possible for a person with Alzheimer’s to live alone. It is the case with some families that they do not have the time or resources to be with their loved one all of the time, and families accept the risks that come with this. Primary family caregivers living with their loved one may employ a personal support worker (PSW) to help with bathing, washing hair, and toileting. Also, a family member worried about a loved one up in the night will suffer disrupted sleep themselves, so a PSW may be hired to be alert and provide companionship to the loved one during wakeful nighttime hours.
Severe or late stage Alzheimer’s disease
It is at this stage that family members often suffer the most, because the loved one with Alzheimer’s loses much of the ability to recognize those around him or her, even a spouse, sibling, parent or child. Personality changes are common as well. The late stage of Alzheimer’s disease may also be called “advanced” stage. In this stage, the person eventually becomes unable to communicate verbally or look after themselves. Care is required 24 hours a day. The goal of care at this stage is to continue to support the person to ensure the highest quality of life possible. A loved one in late stage Alzheimer’s may exhibit:
- Severe memory loss continues to intensify
- Withdrawal from surroundings
- Leaving home and getting lost
- Problems recognizing loved ones, although it is still possible to differentiate between those who are familiar and those who are not
- Increased restlessness and agitation toward late afternoon and evening hours
- Paranoia, suspiciousness
- Repetitive, compulsive behavior (verbal and/or nonverbal)
- Bathroom management becomes difficult; at this stage it often is necessary to switch to incontinence briefs.
Late stage or severe Alzheimer’s disease and homecare
For families and caregivers, this is a point where their involvement increases substantially. Due to the loved one being up a lot in the night, it is often necessary to have a caregiver present during the night to ensure safety and companionship. Live-in care or 24-hour care is normal during late stage Alzheimer’s as family caregivers have simply run out of energy to do it alone.
End of life
At the end of the severe (late) stage of Alzheimer’s, people generally:
- Have very limited c Incoherent communication, although he or she may occasionally say words or phrases.
- Require total assistance with eating, dressing, using the bathroom and all other daily self-care tasks.
- Experience a decline in physical abilities.A person may become unable to walk without assistance, then unable to sit or hold up his or her head without support.
- Swallowing may become difficult, choking is a risk causing vulnerability to infections, especially pneumonia
The last stage of Alzheimer’s disease, as with any other illness, is a very individual matter and no two journeys end the same way. People with Alzheimer’s seem to experience little physical pain.
Rate of progression through stages of Alzheimer’s
Although the speed of progression of Alzheimer’s disease can be slowed down today with new medications, progression cannot be stopped. The rate of progression for Alzheimer’s disease varies widely. On average, people with Alzheimer’s disease live eight to 10 years after diagnosis, but some survive as long as 25 years.
In Toronto, the Alzheimer Society of Toronto is a valuable resource at any stage of the disease.