Dementia Illness Trajectory – ‘The Long Goodbye’

Dementia is more common in people over the age of 65 years. People with dementia will see a slow, long decline over time.  

Although the most common form of dementia is Alzheimer’s, there are different types of dementia and each one has a different life expectancy. 

• Alzheimer’s has average life expectancy of 10 years
• Lewy Body, Vascular and Frontotemporal Lobe have life expectancies of between 2 – 8 years.  

Early Dementia: the first 2 -7 years

One to two years can pass before dementia becomes noticeable.  That’s because the early symptoms are vague and can be misunderstood as a normal part of aging or even stress.  Short term memory loss and difficulty concentrating start happening.  The person may have difficulty following a conversation or finding the right word.  

After that initial 1-2 years, the changes become more obvious to the person and their close loved ones.  

This can include:

• Being forgetful on a regular basis
• Not being able to remember recent events (short-term memory loss)  
• Getting lost or disoriented, often due to memory issues, especially when going to new places
• Difficulty with word finding
• Being more socially withdrawn, as a result of these changes.
• Inability to concentrate 
• Trouble managing finances and planning 
• Not being able to complete tasks.  

The early stage of dementia can last between 2-7 years, and is often called ‘mild’ dementia.  At this point, a physician would be able to detect dementia by testing using screening tools. 

 

It is common for a person to be in denial about their symptoms and try to ‘hide’ the changes they are experiencing.  Their close family or friends may ‘cover’ for their loved one as a way to try to protect them.  There is often a fear of ‘being committed to a home’ or losing their driver’s license or other freedoms that would take away their independence.  

 

People in the early dementia stage can often continue to live independently with simple reminders – things like lists and medication reminders. Safety for the person in their own living space needs to considered, and regularly assessed, even in this early stage of dementia.  With short-term memory problems, it’s not uncommon for a person to leave a stove on, leave the water running, lose their glasses or leave their home and get lost.  

 

As time goes on, the person will need help with activities of everyday living like grocery shopping, banking, food preparation and cleaning.  

 

It’s really important to have conversations during this stage, while the person can still understand and make decisions about the reality of living with dementia and that their illness with inevitably get worse over time, both physically and cognitively. The person should pick a substitute decision maker for when they can no longer make decisions for themselves. The person and their SDM should talk about:  

• The person’s values, beliefs, hopes, fears, legal/financial matters, options for place of care/supports.  
• What is most important to them?  
• What are they willing to trade-off for the sake of more time?  

All of these conversations will be the basis for making decisions – either on their own, or on their behalf -  as the illness progresses, especially at pivotal transition points in the future. 

 

Middle Dementia: 3 years

The middle stage of dementia, often referred to as ‘moderate’ dementia, often lasts about three years.  This middle stage is hard because the person can still talk and walk independently, but in the latter part of this stage, the person will have less insight and judgment into their own abilities and can ‘get into trouble’. It’s also in this stage that it is no longer safe for the person to drive.  As such, safety planning is important and needs to be more detailed.  

 

Here’s how you will know when you or your loved one is in the middle stage. The same features of mild dementia become more pronounced, and this can make the person have anxiety that may get worse over time, as their illness gets worse.  For example:

• Memory worsens for names of family and friends.  
• People forget their own address or phone number.  
• Their short term memory makes it hard to remember  recent events, but they may also start forgetting significant events from the past.  
• The person starts needing cues to help them with their basic activities of living such as bathing, dressing and toileting.  
• They have trouble speaking. 

For some people, personality changes start to happen:

• Delusional thinking (unshakable beliefs) like thinking someone is stealing from them.
• Compulsive behaviours, such as locking and unlocking doors, counting or repeating words. Emotional changes that can lead to aggressive behaviour, difficulty sleeping, hoarding and wandering.   

Later in the stage of moderate dementia, they will require hands-on help with daily activities.   They might start having accidents with their bowel and/or bladder (also known as incontinence), and may need to wear a protective brief. With incontinence, there is a higher risk for getting urinary tract infections.  

 

Caregiver burden is heavier as the person with dementia needs more help with personal care, transportation and supervision.  

 

Late Dementia: 1.5 – 2.5 years

The late stage of dementia usually last 1.5 to 2.5 years. You’ll know when your family member or friend is in this stage because they have difficulty with speech, lose more of their motor skills and have worsening judgment. Walking will be more diffult in this stage, their personal hygiene gets worse and even eating becomes hard. Essentially, the person will need physical help with almost everything, which means they will need a caregiver 24/7.  

 

In this stage, the person will need help with eating, and mealtimes will get longer and longer.  Eventually, a person will not know how to coordinate swallowing and what they are willing and able to eat will be less and less. 

 

Because they aren’t able to move around as much, and they are eating a smaller variety of food and getting less nutritional sustenance, the person is at risk of skin ulcers. They are at higher risk of infections, like urinary tract infections, bedsores, aspiration pneumonia, which can be really dangerous for them. It can also cause worsening confusion, sometimes intermittently, and steep or quick decline.  

 

The family will need more support at this point. There are home and community supports for caregivers and the patient, and also different options for institutional care, like long-term care. This is when you’ll want to go back to the discussions earlier in the disease to help make decisions about care and supports for the person, based on their values.

 

There are distinct signs of the final year of dementia. There will be a noticeable physical and functional decline from month to month. Unfortunately there are more falls and infections, which means more frequent trips to the ER.

A person has likely entered into their last year of life when four or more of these factors are true:

• 
  are no longer walking
• are fully incontinent
• can’t communicate meaningfully using words 
• are fully dependent
• are losing weight
• having recurrent infections 
• have serious pressure sores 

In the terminal phase of dementia, a person will be fully bedridden and is dependent on all care delivered in bed. They are no longer able to swallow safely and aren’t interested in eating or drinking.  Their decline will be obvious from week to week and then day to day.

 

The rate at which decline is happening softly predicts how long a person has to live.  

 

The decline from dementia is usually gentle and comfortable.  Most people with dementia fade over time, become bedridden, eat and drink less and sleep more and more.  For those with underlying conditions, like arthritis or chronic back pain, medications will be needed to manage any discomfort. It is unusual for someone with dementia to have pain, breathlessness, nausea or vomiting.  

 

For some types of dementia such as Lewy body or Frontotemporal Lobe, the person can have behaviour changes that can be harder and harder to manage over time.  The first approach to mitigate behaviour is non-pharmacological approaches (i.e. limiting noise, reminders to wear glasses or use hearing aids) but if that doesn’t work, there is an option to use medication.  For people who are agitated, medication may be needed to settle the person and to make it manageable to care for the person at home.

Important Points

• Dementia has a long trajectory
• Caregivers require as much support as the patient
• Discussions early on become invaluable later in the illness 
• Nutritional issues are often a barometer of where a person is in the illness journey 
• Feeding tubes do not prolong life or decrease the risk of aspiration pneumonia, nor do they contribute to quality of life
• The most comfortable death is to allow nature to take its course and not to hydrate or provide artificial nutrition
• Caregivers should know about respite options and care benefits

The Terminal Phase

 

The final days can be hard for families, especially when they don’t know what to expect and what normal dying looks like.

 

Families often  sit vigil by the bedside watching their loved one as closely as a new mother watches over her newborn baby as it sleeps. It is a time of reconciling that the patient is fading quickly and will soon be gone.  This is precious time.  In these final moments, families don’t need to be burdened by the unknown, fear, and panic. 

 

The body changes and internal chemistry changes, as a person is getting closer and closer to death.  The body is changing and slowing inside because it is programmed to know how to die.

 

This is what families can expect to see.  A person who is actively dying:

• doesn’t eat or drink.  
• often has a very dry  mouth, and mouth care is important 
• will have longer and deeper sleep
• will urinate less (likely indicating the last 48 – 72 hours), and it may be darker and have a stronger smell
• will have smaller and less frequent bowel movements
• may have hands and feet that are cool to the touch, due to circulation changes
• may have purplish-looking skin, or have a purplish patchy look called ‘mottling’. Mottling can also occur in the area of the knees, buttocks and backside.  

Many families appreciate knowing that patients, on average, don’t usually live longer than 7-10 days without any fluid.  Knowing this timeline can help families with their planning. 

 

In the very final 24-48 hours, there are additional stages of dying that families can look for:

• Breathing will change, and the person my have unique patterns. 
• Breathing can be fast and shallow, slow and deep, or alternate between both.  It is normal for the patient to have pauses in breathing lasting 5-30 seconds (for family watching, it feels more like minutes), called ‘apnea’, then resume breathing again.  Apnea is a telltale sign that death is imminent. 
• It’s not helpful or effective to shake or nudge the patient to start breathing again.
• ‘Wet’ breathing may happen for some people.
• Wet breathing is not a sign that lungs are filling up with fluid or that their loved one must feel like he/she is drowning or suffocating.
• The wet breathing is the natural secretions and saliva that sits at the back of the throat.  When a patient is dying, he/she is too weak to swallow like well people do automatically when their saliva pools.   So, it just sits there.  When the patient is breathing past this saliva, it sounds like gurgling.
• It is the sound that worries the family, but this is not uncomfortable for the patient.  
• Patients might furrow their brows or open and close their mouth.  They might become slightly more restless as death draws closer.  This is  normal and not a sign of pain. 
• A person’s mouth can become very dry, and it is important to teach family how to provide comfort mouth care. 
• Families are comforted to know that they aren’t starving or dehydrating their loved one to death. 
• The goal is comfort and food and fluid do not make these final days more comfortable.  
• Sometimes patients can seem to be more confused or ‘fussy’ in the bed, gesturing with their hands or pulling on their bedclothes. 
• It isn’t uncommon for the patients to intermittently groan or moan; again, this isn’t typically related to pain.   

Families want to help their loved one. This guidance is often helpful for families:

• Although it is counterintuitive, forcing a person to eat or drink isn’t usually helpful. 
• Families can be comforted in know that their loved one is not starving or getting too dehydrated, or that not eating or drinking will cause death.
• It’s extremely important in this phase to ‘listen to the patient’s body and what it is telling us about his/her needs’.  
• If a patient is sleeping, do not wake them for fluids.  It is not safe because the person is too weak to manage swallowing and the fluid can end up in the lungs.
• Extra fluid is not a comfort measure even if it can be given intravenously.  Too much fluid can cause uncomfortable swelling of the legs, and complicate caregiving (heavy turning and repositioning). It can also pool in the lungs. 

Eventually, the person will take their final breath and slip away.