Caring With Compassion: Dementia And The Changing Roles Within Families

Dementia isn't usually considered a condition on its own, but a cluster of symptoms that can occur in several disorders affecting brain structure and function. Its symptoms tend to be chronic and progressive. With time, dementia can create significant challenges for individuals and their caregivers. 

Family members often assume caregiver roles for loved ones with dementia. In 2023, an estimated 11.5 million family members and other caregivers provided an average of 31 hours of care per caregiver per week.

Roles and dynamics within the family unit often change as individuals navigate the everyday responsibilities associated with a loved one's dementia diagnosis. Each family member may find themselves taking on new tasks and grappling with complex emotions. Often, it’s helpful for each family member to speak with a licensed mental health professional to work through their thoughts and feelings related to their loved one’s dementia diagnosis and their new caregiving role.

Dementia can contribute to significant challenges within families

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The impacts of dementia on individuals 

While dementia might present differently between individuals according to several factors, the phases of dementia are typically marked by changes in core symptoms ranging from mild to severe. Symptoms of dementia may include the following: 

• Memory loss: Struggling to retain newly learned information or remember familiar names, dates, or places
• Confusion: Difficulty keeping up with a conversation or task
• Disorientation: Confusion typically related to place and time, such as getting lost in a familiar place or not knowing what day it is
• Concentration impairment: Diminished ability to focus on activities that require concentration, like watching a television show or reading a book
• Difficulty carrying out familiar tasks and responsibilities: For example, paying bills, preparing meals, and completing household chores
• Speech and communication problems: Forgetting words or using inappropriate words to communicate, having trouble maintaining conversations 
• Impaired judgment: For instance, dressing inappropriately for the weather, giving money to strangers, or not recognizing physical symptoms that require medical attention
• Mood and behavior changes: Sudden anger, crying, withdrawal, fear, or suspicion of others; people with dementia might behave inappropriately or become verbally/physically abusive
• Balance and movement difficulties: Problems with walking, standing, or sitting independently due to stiff muscles and deteriorating coordination

Changing roles within the family unit 

Perhaps one of the most dramatic changes in roles among families is when an aging member who once served as a primary caregiver for children, grandchildren, and other family members must suddenly depend on those people for everyday care. 

As the person's illness progresses, they may experience a wide range of emotions, such as frustration, helplessness, and embarrassment, as their independence and ability to care for their family diminish.

This may be an essential dynamic for caregivers to consider, as it can severely impact the individual's self-esteem, confidence, and overall mental health.

Likewise, caregivers may sometimes struggle with taking on responsibilities that once fell to their aging relative, such as handling the family's finances, navigating legal matters, and caring for their home. They might experience a profound sense of loss as their once active, dynamic relative becomes less engaged in their familial relationships and loses memories related to family members and events. 

Caregiving's impact on partners

If you are acting as a caregiver for your partner, it can create significant feelings of sadness and loss as your connection changes. Spousal caregivers may find it challenging not to take symptoms like anger and aggression personally or have trouble staying calm and compassionate. It can be painful when your partner forgets meaningful experiences you once had together or fails to recognize you at all. This sense of loss may also emerge if you and your partner can no longer maintain a physical relationship.

Caregiving can also strain your partnership as financial and domestic challenges emerge and stir up a sense of resentment, or when it seems like you're suddenly responsible for navigating everything on your own.  

Impacts on children and teens

Caring for someone with dementia often takes considerable focus and can leave the younger family members feeling neglected, confused, or worried. 

Young children might have difficulty understanding why their aging relative is behaving differently or develop a fear of experiencing dementia themselves. Adolescents may be embarrassed if their relative exhibits behavioral symptoms like disinhibition or inappropriateness. Adult children might struggle with guilt or sadness as they leave home and focus on their own lives.

Open and honest communication can be vital for helping the younger family members cope with these challenges. Be honest and open about the changes their aging loved one is experiencing and answer any questions they might have. Ask about their needs and how you can support them.

Preparing for caregiver stressors

Dementia symptoms often have far-reaching impacts on families in every area of daily life, and this may be increasingly true as the disease progresses. 

The Alzheimer's Association’s 2024 Alzheimer's Disease Facts and Figures lists the top five self-reported caregiver stressors (in order): 

1. Cost
2. Coordinating care
3. Securing appointments
4. Getting help taking a break
5. Finding appropriate doctors

To address these caregiver concerns, The Centers for Medicare & Medicaid Services (CMS) are launching a pilot program in dementia care management called the GUIDE (Guiding an Improved Dementia Experience) model. It generally aims to reduce strain on caregivers, improve the quality of life for individuals with dementia, and enable people living with dementia to stay at home through a "comprehensive package of care coordination and management, caregiver education and support, and respite services."

The logistical challenges of caregiving 

Caring for a loved one with dementia at home often presents several safety risks, some of which may not have occurred to caregivers before living daily with a dementia patient. These risks often result from symptoms like poor judgment, diminished coordination and balance, confusion, and memory problems.  

For example, families may need to implement safety measures like grab bars, cabinet locks, and alert systems for doors and windows in the home as their loved one becomes increasingly confused and disoriented. 

Childproof protectors may be necessary for household appliances like the stove and electric outlets around the house. Additionally, caregivers may need to reposition or remove items that may be a fall hazard, such as furniture, rugs, and electrical cords. 

Physical demands 

Caring for a person with dementia sometimes presents physical demands that can create significant fatigue, particularly if the individual with dementia experiences balance and coordination issues or compromised strength, leading to difficulty sitting and standing up. 

You may need to lift your loved one from their chair, bed, or wheelchair. It might be necessary to provide support as they walk from one place to another or during physical therapy and exercise sessions. 

Caring for your own physical health can be essential for ensuring the safety of your loved one and yourself. This might include cultivating strength, balance, and coordination to avoid strain and injury. 

Emotional challenges

Emotional experiences associated with caregiving might seem confusing at times because they can emerge or fluctuate in intensity without warning. It can be common to experience a combination of emotions or, sometimes, no emotions at all. When left unaddressed, emotional stressors can contribute to mental health conditions like anxiety, depression, and substance use disorders. 

Families and caregivers might experience the following emotions:

• Resentment
• Helplessness
• Isolation/loneliness
• Anger
• Detachment
• Guilt
• Worry
• Sadness
• Fear
• Embarrassment
• Frustration
• Grief
• Impatience
• Jealousy
• Loss
• Fatigue

Additionally, some caregivers struggle with feelings of disgust associated with the physical needs of their loved ones. For example, as the body deteriorates, individuals may have issues with incontinence or difficulty with eating and digestion. They might have trouble with washing and personal care, requiring assistance that might be uncomfortable for caregivers to provide.

Coping strategies for family caregivers

There are many proactive things that family members can do to support themselves and each other when caring for a loved one with dementia.

Seek outside support 

Education, awareness, and support from dementia organizations and healthcare professionals can lay the foundation for successfully caring for a loved one with dementia.

• Awareness can help family members cultivate greater compassion and understanding for their loved one.
• Education about dementia can help families handle crisis situations, such as medical emergencies or a loved one with dementia going missing due to wandering. 
• Your loved one's healthcare specialist can help you manage their medications and other medical needs at home.
• Dementia organizations can provide valuable tips for practical care, such as toileting, bathing, feeding, home safety, and supporting your loved one's emotional and cognitive health. Dementia organizations can also provide resources for caregiver support groups, family therapy, and individual therapy. 

Encourage open and honest communication 

Many caregivers and their families find that group support and family therapy can be excellent tools to facilitate and encourage such communication. Counseling can also give families the tools they deserve to manage conflict and cope with challenges together. 

Share roles and responsibilities

Communicate about how each member of the family can take part in caregiving responsibilities. For example, one person might be better at managing financial and legal matters, while another may be better equipped to calmly handle behavioral symptoms. When each member contributes, it can significantly lessen the load. 

Set realistic expectations

You and your family may become overwhelmed by caring for your loved one while attending to other responsibilities outside of that role, such as your own family or work commitments. Understand that caregiver burnout is real and can occur, especially when one tries to take on too much responsibility. Help each other set expectations and boundaries to keep things balanced. 

Encourage self-care 

Research shows that taking care of oneself tends to be a critical component of successfully caring for a loved one with conditions requiring round-the-clock attention, as is often the case for dementia patients, particularly those in the later stages. Self-care strategies might include the following:

• Maintaining a healthy lifestyle with proper nutrition, regular exercise, and adequate sleep
• Practicing relaxation techniques, such as meditation, yoga, tai-chi, or deep breathing exercises
• Taking time out to participate in activities you enjoy, like a hobby, going to the movies, or meeting a friend for a meal
• Socializing with friends, neighbors, or peers
• Attending individual counseling or therapy

Dementia can contribute to significant challenges within families

Find support in online therapy

Seeking support

Studies indicate that interventions like cognitive behavioral therapy (CBT) and mentalizing imagery therapy (MIT) can reduce depression and anxiety while boosting overall well-being in caregivers. 

Despite its benefits, some caregivers experience obstacles that might deter them from getting the help they deserve. Caregiving may present scheduling challenges or leave little time for commuting to in-office sessions. People caring for a loved one with dementia may have financial concerns or limited access to healthcare professionals in their area. 

With the growth of virtual therapy may come an effective solution to many of these barriers. For example, virtual therapy can eliminate geographical barriers to treatment by empowering individuals to attend sessions from any location with an internet connection. Online therapy platforms also make it easy to switch between therapists if necessary, and online therapy is often more affordable than traditional treatment without insurance coverage. 

According to a 2023 study, online interventions may reduce caregivers’ stress levels and depression symptoms, suggesting that virtual treatment may be a viable alternative to in-person care.