144. CCA Study Notes: Caregiver Stress, Caregiver Needs and Family Support in Dementia Care

The Big Picture

Caring for someone with dementia can be exhausting. Dementia affects a person’s memory, thinking, communication, and behaviour. Caring for someone with dementia can put a lot of pressure on family members and other caregivers.

Caregivers can feel tired, worried, frustrated, or helpless. They may struggle to balance caregiving with work, family responsibilities, and their own health.

As a Continuing Care Assistant (CCA), you can help by providing care that allows caregivers to take a break. You also need to recognize signs of caregiver stress and report concerns to your supervisor.

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 Dementia and Its Effect on Families

Dementia is a general term for the progressive loss of brain functions, including thinking and social abilities. Progressive means the loss continues over time.

Dementia is not one disease. It describes a group of illnesses that affect important abilities, including:

• Memory
• Behaviour
• Learning
• Communication

Dementia may be classified as either a mild neurocognitive disorder or a major neurocognitive disorder, depending on the person’s symptoms.

Dementia affects more than the person living with the condition. Family members, friends, and caregivers can also experience significant emotional and practical challenges.

Why Caring for Someone With Dementia Can Be Stressful

Being a primary caregiver means taking the main responsibility for caring for someone.

Caring for a person with dementia can place demands on several areas of a caregiver’s life.

Type of Stress	How Caregiving Can Affect the Person
Physical	Caregiving responsibilities can be exhausting and affect the caregiver’s health.
Emotional	Caregivers may experience anger, anxiety, frustration, guilt, or helplessness.
Social	Caregiving requires time and energy that must be balanced with other parts of life.
Financial	Providing care can require significant amounts of money.

Caregiving can become especially demanding when the caregiver has several responsibilities at once.

The Sandwich Generation

The sandwich generation describes adults who care for both their children and their parents.

For example, an adult may need to:

• Look after their own children.
• Care for a parent who needs assistance.
• Work a full-time job outside the home.

These competing responsibilities can increase stress because several people need the caregiver’s time and attention.

Key fact: Caregiver stress may come from several responsibilities happening at the same time.

Signs and Effects of Caregiver Stress

Caregiver stress can affect emotions, sleep, concentration, and health.

Caregivers may experience:

• Anger
• Anxiety
• Sleeplessness
• Depression

Some caregivers may also have difficulty concentrating and feel irritable ⓘ all the time.

Long-term stress can also make caregivers more susceptible ⓘ to health problems.

Safety: Abuse may occur in caregiving situations involving severe stress.

This does not mean every stressed caregiver will become abusive. It means abuse is a serious possibility that must not be overlooked.

Emotional Challenges for Family Members and Friends

Family members and friends of someone with dementia may feel helpless as the person’s condition continues to worsen.

Providing care can require large amounts of:

• Time
• Money
• Energy
• Emotional effort

Caregivers may feel that nothing they do can stop the person’s decline. These feelings can be difficult to manage.

Guilt, Frustration, and Anger

Guilt ⓘ is common among caregivers, family members, and friends.

They understand that the person did not choose to develop dementia. They also know the person did not choose the signs, symptoms, or behaviours associated with the condition.

Even with this understanding, some behaviours may be:

• Frustrating
• Embarrassing
• Threatening

Family members and friends may also feel hurt, upset, or angry when their loved one can no longer express love or affection.

These emotional reactions can occur even when people understand that the person did not choose to develop dementia.

What Caregivers Need to Protect Their Own Health

Caregivers face ongoing demands that can affect their health. They need to make time for their own physical and emotional needs.

Healthy Habits

Caregivers should look after their health through:

• Healthy eating: Maintaining a healthy diet.
• Exercise: Making physical activity part of their routine.
• Rest: Getting plenty of rest.

Caregivers also need to ask family members and friends for help when their responsibilities become overwhelming.

Key fact: Caregivers need care and support themselves, even while they are caring for someone else.

Support Groups and Encouragement

Caregivers need encouragement and opportunities to receive support from others.

Some caregivers join support groups, where people facing similar challenges can talk about their experiences.

Support groups may be sponsored by:

• Hospitals
• Long-term care facilities
• The Alzheimer Society of Canada

The Alzheimer Society of Canada has chapters in communities across the country.

What Happens in Caregiver Support Groups?

People in similar caregiving situations can share their feelings and experiences.

They may discuss:

• Anger
• Frustration
• Guilt
• Other difficult emotions
• Coping strategies ⓘ
• Caregiving strategies

Support groups give caregivers opportunities to hear from others who understand similar challenges.

How CCAs Help Caregivers

As a CCA, you play an important role in caregiver relief.

Caregiver relief means helping reduce caregiving demands so the caregiver can have time away from those responsibilities.

You may provide this relief in different ways.

Assisting Caregivers and Providing Breaks

Your work may involve:

• Assisting the primary caregiver.
• Assisting other caregivers.
• Caring for the client so the caregiver can take time off.

The purpose is to give caregivers some relief from their caregiving responsibilities.

Follow the Care Plan

The care plan directs the care you provide.

As a CCA, you must:

1. Follow the care plan.
2. Perform your assigned tasks competently.

Your ability to provide competent care matters to caregivers.

When caregivers feel confident in your skills and abilities, they can relax and temporarily let go of control over caregiving responsibilities.

Encouraging Caregivers to Take Breaks

The care plan may direct you to encourage caregivers to look after their personal needs.

It may also direct you to encourage a caregiver to leave the home for a break while you are there caring for the client.

Role limit: These actions must follow the care plan. Do not treat a possible care-plan instruction as something automatically required in every situation.

What the CCA Should Observe and Report

Part of your CCA role is noticing signs and symptoms that may indicate a caregiver is experiencing difficulties.

You may observe:

• Signs and symptoms of caregiver stress.
• Signs of depression.
• Signs of abuse.

These observations are important because caregivers can experience serious emotional and health difficulties, and abuse may occur in highly stressful situations.

Report Observations Immediately

Report: You must report any observed signs or symptoms of caregiver stress and any signs of depression or abuse immediately to your supervisor.

The word immediately is important. The instruction is not to delay reporting until a later time.

Your role includes observing these concerns and reporting them while continuing to perform your assigned care competently and according to the care plan.