141. CCA Study Notes: Dementia Stages, Symptoms and Support Strategies

The Big Picture

Dementia affects how a person remembers, thinks, communicates, and manages everyday activities. As dementia progresses, the person usually needs more help with daily life.

Dementia is often described in three stages: early, middle, and late. In the early stage, a person may need reminders and supervision. In the middle stage, the person usually needs more help with daily activities. In the late stage, the person becomes completely dependent on others for care.

Every person experiences dementia differently. The stages do not have exact starting and ending points, and the person’s needs can change from day to day.

Look for Nova Scotia CCA Notes throughout this page for current provincial guidance.

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Course Notes: Key Ideas You Need to Know

Understanding How Dementia Progresses

Dementia is a general term for illnesses that progressively ⓘ affect brain functions. These changes can involve memory, thinking, learning, behaviour, communication, and social abilities.

Alzheimer’s disease and related dementias (ADRD) involves progressive destruction of nerve cells in many areas of the brain, causing serious problems with thinking and memory. Alzheimer’s disease is the most common form of dementia.

Two systems are used to describe dementia progression:

• Three-stage system: Divides dementia into early, middle, and late stages. This system generally applies to ADRD and most other dementias.
• Global Deterioration Scale (Reisberg Scale): A system used by medical professionals that divides dementia progression into seven stages.

These notes focus on the three-stage system.

Dementia Does Not Progress the Same Way for Everyone

The symptoms a client develops depend partly on which areas of the brain are affected.

Important points include:

• Different dementias may look quite different in their early stages.
• Symptoms often become more similar as different dementias progress.
• Symptoms generally become more severe with each stage.
• Some clients experience a faster decline than others.
• The order in which symptoms appear can differ.
• The length of each stage varies.
• The stages may overlap rather than having clear boundaries.

A client may experience many symptoms associated with a stage, while another client experiences only a few.

Key fact: A client may seem more confused one day and less confused the next. These day-to-day changes do not mean the stages have clear or predictable boundaries.

Stage 1: Mild (Early Stage) Dementia

In the early stage, the client usually still has many abilities but begins having difficulty with memory, communication, judgement, and everyday activities.

The client may recognize these changes and feel frustrated, anxious, or depressed.

Most clients in this stage continue living at home, often with support from family, friends, volunteers, or home care workers.

Mental Abilities and Communication

Early changes may include:

• Recent memory: Forgetting things that happened recently, important occasions, appointments, or names.
• Learning: Having difficulty remembering new information.
• Concentration: Finding it harder to stay focused or pay attention.
• Communication: Struggling to find words, finish thoughts, or follow conversations.
• Orientation: Occasionally becoming confused about people, time, or place.
• Everyday activities: Having difficulty completing familiar tasks or solving simple problems.
• Judgement: Making poor decisions, including decisions related to driving.

A client may get lost or find it difficult to follow directions.

Disorientation is mental confusion that affects a person’s ability to recognize or remember people, time, or places.

Mood and Behaviour Changes

Clients may experience emotional and behaviour changes even while they remain physically active.

Possible changes include:

• Mood shifts, irritability, defensiveness, or symptoms of depression.
• Blaming others for mistakes or forgotten information.
• Anxiety or frustration about changing abilities.
• Becoming less outgoing or less interested in usual activities.
• Passive behaviour or withdrawal from activities.
• Restlessness.

Some clients continue participating in familiar activities, while others become less involved.

CCA focus: Monitor the client’s emotional well-being. Emotional changes can be an important part of the client’s experience.

Physical Abilities

Physical changes are usually less severe during the early stage, but mild coordination ⓘ difficulties may appear.

The client may still complete many activities but need supervision, reminders, or assistance to perform them safely.

Supporting Memory and Communication

Useful support strategies include:

• Use calendars, notes, labels, alarms, and timers as memory reminders.
• Pill dispensers and dosettes may help the client remember when to take medications.
• Place emergency telephone numbers where they are easy to see or find.
• Divide activities into smaller, manageable steps.
• Keep routines as consistent as possible.
• Speak with the client and encourage conversation.
• Ask short questions and repeat questions when needed.
• Keep groups small to reduce noise and excessive stimulation.

A family member or another person may accompany the client to medical appointments to help communicate concerns.

These strategies help the client continue participating in activities despite memory and communication difficulties.

Encouraging Independence and Enjoyment

Some clients need help beginning an activity but can continue with encouragement.

Others need repeated instructions, reminders, or information to finish what they started.

For example, a client may want to mail a letter but cannot remember the word stamps or where stamps are kept. A support worker can help the client remember the word and locate the stamps.

Follow the care plan. It may direct the support worker to concentrate on the client’s enjoyment of an activity rather than whether the client completes it.

Other helpful approaches include:

• Encourage safe physical activity.
• Support contact with family and friends.
• Encourage participation in enjoyable and meaningful activities.
• Allow the client to express thoughts and feelings.
• Encourage stress-relieving activities, including meditation.
• Encourage nutritious meals.

Medical assistance may also be sought to determine whether medication could help with the client’s symptoms.

Keeping the Client Safe

Safety requires ongoing attention during the early stage.

A client may:

• Wander away and become lost.
• Swallow something poisonous.
• Leave an appliance operating.
• Make unsafe decisions because of poor judgement.

Safety: Maintain a safe environment, supervise the client at all times, and follow the care plan.

Examples of safety support include:

• Remove tripping hazards such as loose electrical cords and small rugs.
• Improve lighting around stairs, entrances, and hallways.
• Encourage safety features such as handrails and grab bars.
• Help the client choose activities that can be completed safely.
• Check that appliances are turned off after an activity.

For example, when helping a client bake cookies, make sure the activity takes place safely and that the oven is turned off afterward.

The client may also be registered with the Alzheimer Society’s MedicAlert Safely Home program to help with wandering-related safety concerns.

Driving Concerns

Poor judgement during the early stage may affect driving.

The responsibilities described for driving concerns are different:

• Family: Discuss the client’s driving with the family doctor.
• Support worker: Discuss concerns about the client’s driving with the supervisor.
• Family: Discourage driving and offer transportation when needed.

The support worker’s responsibility is to communicate concerns through the appropriate supervisory relationship.

Living at Home and Family Support

During the early stage, the client may live alone or with family.

The main caregiver could be:

• A spouse.
• An adult child.
• Another family member.
• A friend.

Other caregivers may temporarily take over care to give the main caregiver a break.

Respite care provides temporary assistance or relief. Community day programs and home care can help support the client and caregiver.

Key fact: Clients in the early stage are usually aware of their diagnosis and can participate in decisions about their future care.

Stage 2: Moderate (Middle Stage) Dementia

During the middle stage, the client’s mental and physical abilities decline further.

Memory problems become more severe, communication becomes harder, and the client usually needs increasing help with everyday activities.

Changes in mood and behaviour may also become more noticeable.

Memory, Thinking, and Communication Changes

Typical middle-stage symptoms include:

• Greater memory loss, including forgetting personal history.
• Failure to recognize family members or friends.
• More frequent disorientation involving time and place.
• Increasing difficulty concentrating.
• Difficulty understanding or following directions.
• Trouble reading, writing, or performing mathematical tasks.
• Communication that becomes limited to short sentences or individual words.

Some statements may no longer make sense to others.

Sundowning, Sleep, and Sensory Changes

Sundowning occurs when dementia symptoms and behaviours increase around bedtime or during darkness.

In the middle stage, the client may become particularly restless or confused during the evening.

Other changes include:

• Disturbed sleeping patterns.
• Difficulty telling whether something is hot or cold.
• Reduced ability to recognize danger.
• Slower walking or a shuffling walking pattern.

Key fact: Sensory changes may affect the client’s ability to recognize potentially dangerous situations.

Helping the Client Understand and Complete Tasks

The client may need more direct prompts than during the early stage.

Cueing means providing prompts that help someone complete a task. These may include spoken phrases, facial expressions, or hand movements.

Helpful communication strategies include:

• Speak slowly and clearly.
• Use simple words and short messages.
• Repeat information when necessary.
• Use gestures to support spoken messages.
• Supply forgotten information, such as someone’s name, during a conversation.
• Offer only one or two choices.
• Ask specific, concrete questions instead of abstract ones.

For example, asking whether the client thinks it is cold outside is more concrete than asking a broad question about what the client thinks.

These approaches reduce the amount of information the client must process at one time.

Mood and Emotional Changes

Middle-stage dementia can involve greater changes in mood, personality, and impulse control.

Possible symptoms include:

• Anxiety, apprehension, or suspiciousness ⓘ.
• Sadness or depression.
• Frequent mood shifts.
• Anger, hostility, or violent behaviour.
• Personality changes.
• Loss of impulse control.

Loss of impulse control may appear as swearing, rudeness, inappropriate table manners, or sexually aggressive behaviour.

The client may behave in ways that are different from their previous personality.

Responding to Emotional and Behaviour Changes

Remember that the client is not intentionally trying to be difficult.

Support strategies include:

• Look for the feelings behind the client’s words and actions.
• Reassure and comfort the client.
• Avoid arguing or trying to prove the client wrong.
• Encourage familiar activities that have meaning to the client.
• Encourage healthy eating and physical activity.
• Invite the client to reminisce about past experiences.

Key fact: Focus on understanding the client’s emotions rather than concentrating only on the words or behaviour being displayed.

Repetitive and Responsive Behaviours

Behaviour changes can become more frequent during the middle stage.

A client may:

• Pace repeatedly or wander.
• Repeat the same words or statements.
• Move objects back and forth.
• Experience delusions.
• Show aggression or uninhibited behaviour.
• Become passive or less involved in activities.

Responsive behaviours are actions, gestures, words, or other behaviours that may arise in response to an illness, infection, or physical discomfort.

The important idea is that behaviour has meaning.

When a client becomes restless or behaves differently, consider possible causes identified in the client’s situation.

These may include:

• Too much noise or too many people.
• Hunger or pain.
• Feeling too hot or too cold.
• Discomfort or irritation.
• Needing to use the toilet.

Watch for behaviour changes that may result from a physical illness, such as a UTI or the flu.

Wandering and Safety

Restlessness and wandering may increase during the middle stage.

The MedicAlert Safely Home program can help families locate a client who becomes lost.

Other safety strategies include identifying hazards in the home and arranging changes that better meet the client’s abilities.

Physical Changes and Daily Care

Clients in the middle stage often need increasing help with ADLs, including bathing, dressing, eating, and using the toilet.

Possible difficulties include:

• Loss of bladder or bowel control.
• Needing assistance with bathing, feeding, and dressing.
• Fear of bathing or refusing to change clothing.
• Changes in appetite.
• Sleeping difficulties.
• Language difficulties.
• Visual-spatial challenges.

The client may also stop tolerating dentures or eyeglasses. This can increase the risk of injury.

Such concerns should be recorded in the client’s care plan and noted by caregivers.

Making Daily Activities More Manageable

Support should reflect what the client can still do.

Useful strategies include:

• Maintain familiar routines and personal preferences.
• Respect the client’s preferred foods and tastes.
• Choose clothing and hairstyles that are simple to manage.
• Adjust schedules to improve the client’s comfort.
• Adapt activities to match remaining abilities.
• Identify and reduce hazards in the home.

Safety changes may include installing grab bars.

A family member or supervisor may consult an occupational therapist for advice about routines, suitable activities, and ways to adapt the home.

When Long-Term Care Becomes Necessary

As dementia progresses, help from family, friends, volunteers, home care, respite services, and community programs may no longer meet the client’s needs.

Long-term care is needed when at least one of these situations occurs:

1. Family members and friends cannot meet the client’s care needs.
2. Family caregivers have their own health problems.
3. The client’s behaviours put the client or other people in danger.
4. The client no longer recognizes the caregiver.

These situations can make continued care at home difficult.

Special Care Units and Family Involvement

Some long-term care facilities have special care units (SCUs) for clients living with dementia.

A special care unit may be locked to provide additional safety and reduce the risk of injury when a client is likely to wander.

The health care team works to meet the client’s needs.

Family members and close friends usually continue participating in the client’s life after admission to a facility.

They may:

• Provide comfort and emotional support.
• Participate in facility activities.
• Remain involved as important members of the health care team.

The local Alzheimer Society can also provide information, resources, family support, and strategies for difficult situations.

Some long-term care facilities provide hospice care for clients approaching the final stage of dementia.

Stage 3: Severe (Late Stage) Dementia

The late stage involves profound losses in mental, communication, and physical abilities.

The client becomes unable to manage personal care and requires assistance 24 hours a day.

Support focuses on comfort, communication through the senses, safety, and meeting the client’s physical needs.

Severe Mental and Communication Changes

Late-stage changes may include:

• Loss of the ability to remember information.
• Inability to process information.
• Severe difficulty speaking or communicating verbally.
• Constant and severe disorientation involving people, time, and place.
• Inability to recognize oneself, family members, or other people.
• Seizures.
• Complete dependence on others for all daily care activities.
• Total loss of bladder and bowel control.

The client may no longer understand spoken language or communicate using words.

Key fact: Even when a client cannot communicate verbally, there may still be opportunities to provide comfort through the senses.

Using the Senses to Connect With the Client

Support strategies during the late stage can involve touch, smell, sight, and hearing.

Sense	Ways to Support the Client
Touch	Hold the client’s hand, gently brush their hair, massage their hands, legs, or feet, or offer a soft cloth or pet to touch.
Smell	Offer familiar scents, such as favourite perfumes, flowers, or foods the client previously enjoyed.
Sight	Show peaceful scenes of nature or films with calming images.
Hearing	Read or speak in a gentle, comforting voice. Calming sounds may also be relaxing.

A client may no longer understand the words being spoken, but the tone of the speaker’s voice can still provide comfort.

Key fact: The way you speak to a client can remain important even after the client loses the ability to understand words.

Supporting Memories, Emotions, and Familiarity

A client in the late stage may withdraw from conversations.

Familiar objects and experiences can provide opportunities for connection.

Strategies include:

• Prepare a memory box containing objects connected to the client’s interests, favourite activities, past work, and happy memories.
• Keep familiar photographs and meaningful objects where the client can see them.
• Offer opportunities to experience familiar spiritual rituals through sights, sounds, smells, or tastes the client remembers.

These approaches reflect the person’s past experiences and individual preferences.

Understanding Nonverbal Communication

A client may communicate without using words.

Possible forms of communication include:

• Eye contact.
• Crying.
• Groaning.
• Grunting.
• Screaming.

The client may have lost the ability to speak but continue expressing responses through sounds or behaviour.

Observe the client closely and try to understand what these responses may mean.

Use cueing when possible to help identify what is causing the behaviour.

Do not assume that an inability to speak means the client has nothing to communicate.

Physical Changes in the Late Stage

Physical abilities decline severely.

Common changes include:

• Increased sleep difficulties or sleeping longer and more often.
• Becoming confined to bed because the client can no longer sit or walk.
• Loss of the ability to speak.
• Complete loss of bladder and bowel control.
• Difficulty eating and swallowing, with greater risk of choking and aspiration.
• Inability to dress or bathe independently.
• Weight loss.

As the condition progresses, the client may enter a coma and eventually die.

Supporting Physical Comfort and Care

The client needs extensive help with comfort and basic physical needs.

Important support strategies include:

• Environment: Provide a quiet, reassuring place with fewer distractions.
• Position during meals: Keep the client comfortably upright while eating and afterward.
• Eating: Allow enough time for meals. Offer smaller, more frequent meals and snacks instead of three large meals.
• Position changes: Change the client’s position every 2 hours and provide appropriate skin care.
• Toileting: Establish a toileting schedule.
• Hydration: Provide adequate fluids throughout the day.
• Bowel care: Monitor bowel movements.

These strategies belong within the client’s care plan and the support provided by the care team.

The late stage can also involve increasing difficulty swallowing, so the risk of choking and aspiration is an important concern.

The Final Stage of Life

Late-stage dementia eventually leads to death.

In late-stage dementia, the brain eventually shuts down the body’s systems. Death often occurs from secondary complications such as pneumonia.

The client’s extensive care needs may be met in a long-term care facility, including facilities that offer hospice care.

Common Mix-Ups

Wrong Idea	Better Idea
Every person moves through dementia stages in the same way.	Symptoms, timing, and progression vary between clients.
Dementia stages have exact starting and ending points.	The stages may overlap, and their boundaries are not clear.
Early-stage dementia always prevents the client from making care decisions.	Clients in the early stage can usually participate in future care decisions.
Middle-stage behaviour changes always happen intentionally.	Behaviour may reflect emotions, discomfort, illness, or other unmet needs.
A client who cannot speak has no way to communicate.	Late-stage clients may communicate through eye contact, crying, or other sounds.
Late-stage support depends mainly on conversation.	Touch, smell, sight, hearing, and familiar experiences can help provide comfort.